Jaden's Journey

Has it been 2 years already? NORMAL never felt so good!

2011-07-08T13:35:00.000-07:00

Can't start the day without a visit to Dunkin' Donuts!

EKG: One of many tests that day!

Even very patient boys have an attack of the sillies sometimes!

Quick lunch break of what else, CHICKEN NUGGETS!!!!

On to 5200 to visit the nurses

Hmm, who do I recognize on the staff board?

Melissa, our primary nurse, was thrilled to see how good Jaden looks!

A big squeeze from Nurse Laura!!!

Will Dr. Prasad ever get here?

Good thing daddy brought his iPad!

Still waiting....

You look FANTASTIC! A heart to heart with Dr. Prasad

Muggin' with the best team: Dr. Prasad, Andre, and Dr. Tiwari

Dr. Prasad couldn't be happier with Jaden's progress!

Now it's time for some baseball: Meeting the players of the Durham Bulls

Jaden even got to hit a few during batting practice with the players!

Do you remember that bull in the background from the movie Bull Durham?

HAPPY TWO YEAR BIRTHDAY, JADEN (July 9)!

As I sit in my hotel room in Durham having just completed Jaden's 2 yr post-transplant check up, I can't help but think of all that has happened over the past few years. I look back at my post from last year's visit and Jaden looks so different. At that moment, I remember thinking how good he looked, but as I review those images, I see him as still frail and fragile.

Fast forward to the past few months, and I can truly say Jaden looks "normal" now. He's filled out and looks healthy again. We are so used to seeing him in his prior form that Guri even asked me if Jaden was getting "puffy". Is he okay? I had to remind Guri that Jaden is back to all his activities and eating well (as well as an 8 yr old boy does). I'm sure the occasional sour gummies and Coke that we let him indulge in is not helping in the "chubby cheek" department.

Over the past 7 months, Jaden has gone from being on isolation, wearing a mask, having things wiped down with Lysol to complete freedom. It is daunting. It's definitely been more of a challenge for me than him. Thankfully, he's back to school full-time. He's even finished a full season of Little League baseball. He's back to play dates with friends, birthday party invites, Tae Kwon Do training, music lessons...everything that he used to do and more.

As I signed up the boys for summer camp, I thought back upon last summer. We had just returned from Duke in April. The summer was very uneventful. Even poor Devin was stuck at home with us because Jaden was still on isolation. I had to pull so many strings to get Jaden to an A's game with his brother and dad for Devin's birthday. His aunt Sabrina pulled strings in LA to get him to an isolated suite at Staples Center so he could see a Lakers game. All this to just let him feel "normal" for a short time.

This summer is so different. Jaden is back to his vivacious, crazy self. His is full of life and energy. He is loud, can't sit still, angry, elated, fidgety...in short, he is a normal 8 yr old boy. Every time I get frustrated with his inability to sit still through a meal or urge him to use his "inside voice", I remind myself what a gift it is that my son is behaving this way. This is what we have worked so hard for. This is the fruit of our labor.

I feel like I'm starting all over with Jaden in some regard. The limited camps and activities he participated in before his transplant were not fully enjoyed by him. There were so many restrictions. So much he couldn't do for fear of getting an infection or getting ill again. So many times I had to pull him out of activities because he got sick or there was a field trip that he couldn't go on. So many "No" "Can'ts" or "Don'ts".

That has all changed now. I want him to LIVE. DO. BE. It has become my mission to re-expose him to everything this year. Try EVERYTHING. Do EVERYTHING--okay, almost everything. I still refuse to let him play football or hockey for fear of him getting hurt. After all we've been through, I'd hate to see him back in the hospital over a serious sports injury. I guess that nagging anxiety in the pit of my stomach is still hard to shake. It will take a while before I truly let him loose, although I'm doing my best to let go.

As for this summer, Jaden is doing a variety of summer camps (art, science, etc). He's actively involved in sports ranging from basketball to swimming and everything in between. He is back in the water with a vengeance. This boy that used to creep along the edge of the pool for fear of drowning is now jumping in feet first and relishing every moment in the water--even begging to be taken to the pool on a daily basis.

Every time he engages in an activity he was previously unable to enjoy, I take lots of pictures to document the moment, and then thank God for our blessings. And we are truly blessed. Blessed to have our son back to his healthy self. Blessed to have so much support from friends and family. Blessed that we have our little angel daughter as a bonus. Blessed that we are a complete family again, all under one roof. I could go on and on.

Let's talk about the most recent blessing: Jaden's 2 yr check up at Duke. It was our usual whirlwind trip, flying in late Wednesday, testing all day Thursday, visit with Dr. Prasad and team to discuss results on Friday morning then back home early Saturday morning. Most of it went as planned except for a few glitches. We arrived Thursday morning in clinic at 8:30am as requested for labs, only they had no record of Jaden needing labs. "Vitals only this time? " asked the front desk. Ummm, nooo. This is his annual visit. There should be a whole host of labs that need to be drawn. I went into psychotic transplant mom mode, having them double check everything, talk to Dr. Prasad, call in the nurse in charge...

What seemed like a pretty easy schedule (labs at 8:30/echo and x-ray at 9:30/PFTs at 10:30 and back for Chest CT at 2:30pm) turned into a day from hell. Because we didn't get labs drawn on time, we had to rush to our next appt and then come back. By the time the labs were actually drawn (with me cross-examining the phlebotomist like a possessed District Attorney to ensure all necessary labs were actually accounted for), we were over an hour late for Jaden's PFTs. Again, the tech asked if we were only doing spirometry (the basic tests). NOOO. I'm sure Dr. Prasad as well as Jaden's pulmonologist back home will want the full testing, which includes DLCO and other critical tests, to gauge the health of Jaden's lungs. Okay, more waiting as the tech called up to the 4th floor to confirm. She had seen that Jaden had done the full test once before and I assured her that he was able to do the full series for his doctors back home. Luckily, she decided to go forward with the entire series.

I ended up complicating our day further by moving Jaden's appointment with his ENT from Friday morning at 8am to Thursday afternoon at 3:30pm, based on the original schedule. My thought was that if I was away from the baby for three whole days, I should be able to get a full night's rest at least ONE of those nights! Besides, we had all afternoon to relax since we were supposed to be finished with all the testing by 3pm. Purely selfish reasons, I know, but when you're desperate for a full night's sleep and to wake up without rushing to heat up milk for a child chanting "mama!", you do what you need to for the guilty pleasure of a few hours of rest!

That was the plan anyway. Of course things didn't go as smoothly. We actually had a little time for lunch in between the PFTs and CT scan, so we headed to the cafeteria to fuel up. We even had time to go to 5200 to visit Jaden's nurses. I was so pleased to see so many people we knew on duty. We were able to meet Nurse Melissa, his primary nurse, and Nurse Bobbi. I learned that Melissa is getting married in a few months, Nurse Laura just had a baby a few months ago and another nurse had twins! Then Lynsey and Scott from Family Support came out from the staff room and we exchanged hugs. Of course everyone was in awe of how good Jaden looked. This time Jaden didn't even resist coming--almost like he WANTED to show off how good he looked and felt. There were lots of pictures and hugs. I then asked Lynsey what we could get for the kids on the unit. I remember how difficult it was for Jaden being stuck in his room or on the floor for so many months. I remember the generosity of so many that brought in toys and food. It was now our turn to help. Molly, the Child Life Specialist, told us that the kids really wanted movies to watch. I asked for suggestions and she came back with a list of titles. We promised to return with some gifts later when Nurse Laura was on duty and then returned to CHC for more testing.

We went to radiology early thinking we may be able to be moved up in the schedule. We were actually even taken back fairly quickly so I thought we'd be out of there in a reasonable time frame. WRONG! One hour later, when I asked what was the hold up, I was told that Radiology must first deal with emergencies, then the in-patient requests for imaging, and THEN they get to the outpatient schedule. Unfortunately,we were last priority. I had to push and push, finally speaking to a supervisor who got us into a back room for the CT thirty minutes before our scheduled appointment in Cary, which incidentally was a town 30 minutes from Duke! Of course, had I kept the original Friday appointment, it would have been in Durham, but that would be too easy.

We raced to the car with the supervisor shouting "Please don't speed to get to your appointment. Be safe!" Yeah, right. We're in town for a day and a half of critical tests and we're not about to miss a single one of them. As luck would have it, the heat and humidity gave way to a torrential thunderstorm that had people literally pulling over on the side of the road. Guri slowed down but kept pushing through. We were warriors in battle. Nothing would keep us from our destination. Not wind, not rain, not sleet nor snow...wait a minute, okay maybe we were more like the postal service.

We reached our destination about 15 minutes late, which isn't bad at all considering the circumstances. Dr. Hulka took a look at Jaden's ears and nose. The ear tubes were still half way in, which accounted for the issues Jaden was having while swimming. Dr. Hulka explained that the water going through the tubes when Jaden is on his back or diving below the surface can cause a stinging or burning sensation. This should go away once the tubes fall out,which they should at some point in the near future. In the meantime, Jaden could use earplugs in the pool and he would continue to have annual visits with Dr. Hulka when we came to Duke.

It was nearly 5pm when all was said and done. We were all exhausted, especially little Jaden. He actually had nothing to say and just stared out the window on the ride back to hotel, which is a rare occurrence these days. But like I said, count my blessings. Jaden did keep saying he wanted to go back to the hotel to swim, but all I wanted to do was open a bottle of wine and watch TV or just stare off into space. We passed by Target and I suggested we get the movies for the kids on the unit before we get back to the hotel. I knew it would be tough to get back out once we crashed in the room. Jaden picked out several titles for the kids including "How To Slay A Dragon", "Planet 51", and "Tangled".

We got back to the hotel and Jaden convinced me to go to the jacuzzi while he swam. Not a bad idea. It may soothe my tired muscles and help me sleep. But so would the wine...Ultimately, I ended up swimming for a while with Jaden while Guri sat in the jacuzzi and then we switched. I was even more exhausted after the hot tub. Now I really wanted that glass of wine. We were facing our next challenge: dinner.

Before we headed out, I suggested we go back to 5200 to meet Nurse Laura. As tired as we all were, we HAD to see Laura again. She was the nurse in charge of Jaden on transplant day. She was extra special to us, and anyway we had to drop off the gifts for the kids. We haded back to the hospital and were beyond thrilled to see Laura. She looked incredible for someone who had given birth a few short months ago. "I had morning sickness the the entire time, so this is my reward!" Laura joked as she pointed to her svelte figure. Lucky you! We exchanged baby pictures and stories and then headed back to the hotel for dinner.

We were still in a quandary. Jaden wanted chicken nuggets as usual, I wanted warm bread, a real meal, and my desire for a glass of wine had now elevated to a BOTTLE of wine! We somehow convinced Jaden to go across the street to Kanki's. This is like a Benihana for those of you back home--a Japanese steak house where the chef prepares the meal on a grill in front of you. It took a lot to get Jaden to choose the Teppanyaki kids' meal of grilled chicken and fried rice instead of the chicken nuggets, but he finally agreed, although he didn't eat as well as he would have had he chosen the latter. With no baby to wake up to, I indulged in not one but TWO apple martinis (somehow wine no longer sounded as good as my favorite cocktail!) and was feeling blissfully content. Guri of course went with his usual Diet Coke.

Exhausted but with full bellies (most of us anyway), we headed back to our room to watch a little HGTV before calling it a night. Luckily, Friday was an easy day. We just had to see Dr. Prasad at 10am and then had the afternoon free to relax before we took Jaden to a Durham Bulls baseball game. Guri had emailed the coach and told him about Jaden's visit, asking if he could throw out the opening pitch. The coach informed Guri that their manager's son was also facing medical hardship and invited Jaden to batting practice with the team. Needless to say, Jaden was thrilled beyond belief. We couldn't wait until Friday! I wondered why Jaden had been prodding me for the last day to find out whether I would go to the game. Yes, Jaden, I'll be there. "Are you coming?" Jaden would ask again. I finally cornered him and asked if he preferred to go alone with his dad. Not wanting to hurt my feelings, Jaden whispered "I want both of you to come". It took a while to finally get Jaden to admit he wanted to experience this activity with his father alone...as guys. You got it buddy! I'm sure there's a TV show that's calling my name. You two can go ahead!

I slept like a log that night (I think I've found the solution to my exhaustion issues at home: 2 martinis and some time in a hot tub!) and woke up at 8:30am when Guri entered the room. Apparently he'd been awake for a while and had gone down to breakfast on his own. He even brought back some Cheerios and bananas for us. As much as I wanted to lay in bed all day, I dragged myself into the shower while Guri took Jaden down for breakfast.

We arrived at the Children's Health Center about 10 minutes after our appointment time. Although my punctual hubby was having a conniption about our tardiness (he pushes to be 10 minutes EARLY to every appointment or event), I had much more experience with these situations than he did. I knew the drill. Doctors ran late, nurses ran late, everything was on "Duke time" as I was told on the first outpatient visit I had here with Jaden. Kind of like "island time" but without the beautiful ocean to soothe and entertain us.

I signed in and headed back to the fish tank room out of habit before I was reminded that Jaden was not on isolation any longer. We were directed back to the waiting room outside until an exam room became available. Soon we were ushered back into a room and all settled in for what we assumed would be a short wait until Dr. Prasad and team emerged. WRONG again!

Not only was clinic packed, but apparently Dr. Prasad had issues with his computer and other tasks that kept him from seeing us until much later. FOUR AND A HALF HOURS LATER to be exact. Jaden was so antsy. We were all exhausted and literally pacing in the hallway when Dr. Prasad turned the corner. "I know we're REALLY late when the PARENTS are in the hallway!" Dr. Prasad joked. Our anger gave way to elation as we all hugged and got reacquainted. "WOW! You look so good!" Dr. Prasad announced as he stared at Jaden. This time he actually brought his own camera to document the moment. He took lots of pictures of Jaden and Guri of course captured the images for us. I was surprised to see Dr. Tiwari with a baby bump! What was in the water in this place? First the nurses on the unit and now the doctors? I congratulated her and we all got down to business.

Dr. Prasad couldn't be more thrilled with Jaden's progress. "He couldn't be better!" he uttered. "Best of all, Jaden's CT scan is incredible. It's almost normal!" Whoa! what do you mean ALMOST normal? I felt the knot in my stomach resurface. Dr. Prasad quickly corrected himself , "There is some streaking and a few minor scars on his lungs from pre-transplant days. Nothing to worry about. He is fantastic!" Phew! With that, I relaxed and Dr. Prasad proceeded to do his exam on Jaden.

I had brought my list of questions and all my documentation for the doctors. I started by giving him the notes from Jaden's visit with the Oral Surgeon at UCSF. Even though she had cleared Jaden of GVHD, Dr. Cowan still was concerned about the "white, pale areas" in Jaden's cheeks. He wanted Duke to check it out. Of course, Dr. Prasad did a full evaluation and said he saw nothing of concern.

We moved on to my question about hydrocortisone. This was the last of the medications Jaden was on. Every time we tried to wean him off the final dose, we would have to restart the drug. Jaden's body was not yet making enough cortisol on its own. I was concerned that this far out we still had issues. Dr. Prasad told me that because Jaden's exposure to steroids was long-standing prior to transplant, it could take several years for his body to adjust and start making cortisol on its own. However, Dr. Prasad did suggest we try to wean 2 out of three of his doses down to a lower amount. If Jaden tolerated it well, we could continue to wean him. If he felt tired or not like himself, we'd have to go back to the original dose. Well, it was worth a try.

Dr. Prasad continued with his exams. He was listening to Jaden's lungs with a big smile on his face. When Andre asked how they sounded, Dr. Prasad proclaimed "Absolutely clear!" He then looked at me and smiled "I'm no longer worried about his lungs!". This was such a blessing. I remember Dr. Prasad's initial evaluation of Jaden pre-transplant. He had been very forthcoming about his concerns around Jaden's lungs or his gut--the two areas Jaden had issues prior to transplant and the most vulnerable areas during treatment we were told. I thought back to all Jaden had endured. The hours of monitoring him for oxygen desaturation, the masks, the noisy machines, the stress over pulse ox readings. All gone. "Absolutely Clear!" No words could be sweeter right now!

Dr. Prasad then took us over to the computer so he could show us the actual CT scan. He pointed out the white streaky areas on a CT from last year. Jaden's lungs had made such progress in just one year. Maybe it was the basketball or baseball or swimming? Maybe it was the Tae Kwon Do? Maybe it was the incessant wrestling with his big brother on a daily basis? Whatever it was, it was working. Jaden's lungs were now considered normal. He was out of danger. He was healthy!

Dr. Prasad then proceeded to review Jaden's labs. Again...normal, normal, normal! These numbers are unheard of for a post-transplant patient! His DLCO (lungs) was 74, where anything over 50 was considered fine for a transplant patient. Jaden's Iron was a little low so Dr. Prasad told Jaden to eat more chocolate or bananas. Of course, Jaden opted for the former. "Yeah, more CHOCOLATE mom!" he sneered. Even Jaden's Iron level was down to less than 800. This may seem incredibly high for normal people, but for a transplant patient it's in the thousands during treatmetn. Jaden's was 1958 at last count. Anything less than 1000 is considered normal for transplant patients. One slight area to watch was his neutrophils and lymphocytes. Dr. Prasad asked if Jaden had a little virus lately. Not that I recall. No runny nose? sniffling? Nope. At least I don't think so. Dr. Prasad didn't seem concerned. He said we would keep an eye on it. Let's check it again in a month or next time you're in clinic at UCSF and re-evaluate. Dr. Prasad may have seen the look of panic in my face and reassured me once again it was nothing to worry about. Even Devin may have low counts in these numbers during a slight cold, but we don't know it because we don't check his counts! I felt a bit better.

I then asked about Jaden's growth. CGD is known to affect growth in kids. Although I was told that it may take a while for Jaden to catch up, I also knew it may take growth hormones to get him back on track. I had been very diligent to photocopy Jaden's growth charts from his pediatrician's records and bring them with me. I handed them over so the doctors would have a history. NORMAL! Dr. Prasad pointed to the dip in growth during transplant but also showed me that Jaden has rebounded. You don't see growth curves like these in transplant patients! There's nothing to worry about! Thank you, God! Thank You!

Andre asked about vision testing. Actually, we hadn't had Jaden's vision tested since the last time we came to Duke. Andre told us that Jaden should have annual eye exams. Got it. I'm on it!

Dr. Prasad continued to examine Jaden. He touched his back and felt his muscles. Wow! I can see and feel how different his muscle mass is from transplant. Wonderful! Normal! Now I never thought I could get giddy about the word "normal" when talking about my child, but truly "NORMAL" is the word we had been yearning to hear all these years. NORMAL meant healthy. NORMAL meant Jaden could just be a kid again. NORMAL meant we could put this all behind us. Well almost...there was still that one issue about cortisol. Hopefully this could be resolved by the next visit and Jaden could truly be NORMAL in every regard.

We hugged and said our goodbyes as Guri continued to take pictures. We promised to send Dr. Prasad copies so he could track Jaden's growth and just remind himself of how far this little boy had come. As we gathered up our belongings, Dr. Prasad poked his head back into the exam room, this time with another gentleman. This is "Dr. ..." He is visiting from Canada and will go back to India soon. "This little boy had CGD. He's 2 years post-transplant. Absolutely NORMAL!" We all beamed smiles to each other as Dr. Prasad and the other young man raced back out. Guri turned to me and exclaimed "I think Jaden has become the poster boy for successful CGD transplants!" and we headed back to the hotel.

Back To Our Second Home!

2011-02-18T13:36:00.001-08:00

Re-connecting with Marshall!

Waiting for the doctors-thank God for my DS!

Look how you've grown! You look incredible!

Dr. Priti and Dr. Prasad--just like old times!

Soon after Jaden started back at school, we made preparations to return to Duke for his 18 month post-bmt follow up. This time, Guri wanted to come as well and I was relieved to take him because of the bad weather in the East Coast. I'm not a good "snow driver" and did not want to deal with inclement weather. Plus, it would be wonderful to have the company and another pair of hands to help with Jaden.

As usual, we planned a quick trip, giving ourselves just enough time to get there, get the testing completed, and be back home with the kids. We're so blessed to have family that covers for us and can watch Devin and Gia while we focus on Jaden. I don't know what we'd do without them. They are amazing and we are so grateful to have them in our lives.

Jaden's testing is now reduced to about a day and a half. It's the usual lab draws in clinic, PFTs, echocardiogram and chest x-ray. On occasion we follow-up with his ENT doctor for his sinus issues and his optomologist to recheck his vision. Last time we checked his vision so this time we saw his ENT. Then it's back to clinic on Friday to meet with Dr. Prasad and discuss the results.

I couldn't wait for Dr. Prasad to see Jaden. I know he looks a thousand times better than he did when we were last at Duke. He's getting stronger by the day. We checked in to the "fish tank room" as we had done so many times before. It's just second nature now. The ladies at the reception desk always greet us warmly and tell Jaden how wonderful he looks. Jaden barely makes eye contact as he pushes the big silver button on the wall that lets him into the clinic area. The nurses always remember him and call out to him by name. I have to remind Jaden to be cordial and respectful. I'm not sure if he's just being shy or whether being in clinic brings back lots of painful memories for him. He's certainly not as ecstatic to be here as we are. The team at Duke had told us that before. Generally the parents and family are thrilled to return to Duke, visit the nurses and the medical team. For us, it's a reminder of the medical miracle that saved our son's life. For the child, it's a constant reminder of the pain and suffering that he endured. I guess only Jaden will truly know what he went through. I can only imagine, even though I was there with him every step of the way.

As we waited in the fish tank room, I looked to see whether Marshall (Jaden's hospital school teacher) was around. We had missed each other last time we were in town and I had emailed her in advance this time in hopes of connecting. She had a crazy busy schedule as usual, going above and beyond to help the children, so I knew she had very limited time in her day. However, Marshall being Marshall, wanted to make sure she saw Jaden at some point during our visit. For her, it's about seeing the kids healthy and back to their normal routines, something she rarely gets to see when she's teaching them in their hospital rooms.

It turns out we did connect. As we waited, I saw a figure approaching with a big smile. As soon as she yelled "Hey, Jaden" in a twang that is typical of Marshall, I knew immediately who it was. I jumped up and gave her the biggest hug. Jaden was being shy until Marshall yelled out "You better run over here and give me a big hug!" That definitely brought a smile to my little guy's face! She then told him how wonderful he looked and how big he was getting. Of course, we had to capture these moments and Jaden mugged for the camera as usual. We spent some time catching up and then Marshall was on her way again. She is such an amazing lady. We were so blessed to have her as Jaden's teacher. I don't think there is anyone who is as patient, kind, warm and loving as Marshall. She knows what these kids are going through and is incredible with them.

After a while, we were called back into the exam room. We waited for a little bit and then Dr. Priti came in. "He looks great! Look at all that hair! He's so handsome!" She reviewed his current medications with me and I updated her on where we were at in his recovery. She said his labs looked great and more importantly Jaden looked great. We got caught up on how she was doing and exchanged info about our families. Then I saw a shadow over my shoulder.

It was a figure in a white coat looming in the hallway. I knew immediately who it was: Dr. Prasad! He stopped in his tracks at the doorway and was shocked to see how good Jaden looked. "Look at him! He looks amazing!" Dr. Prasad was grinning from ear to ear. I was beaming too. I know, doesn't he look wonderful! "There's no need to go over his results, I can tell by just looking at Jaden that he's doing perfectly well!" Dr. Prasad announced. He marched over to Jaden, gave him a big hug and began the examination. Again, it was brief. Dr. Prasad told me he could tell by just looking at Jaden's skin color and appearance that things were moving along nicely. He was so impressed with Jaden's progress and couldn't believe how far Jaden had come in such a short period of time.

He quickly reviewed the stack of papers that were Jaden's test results with me, flipping through each as he checked it off and said "perfect!" Dr. Prasad was most impressed by Jaden's PFTs. Jaden's lungs were recovering unbelievably well. The doctor was in complete disbelief. He even went as far as to say that Gia's cells had helped to heal Jaden's pre-transplant scarring! Incredible! I was holding back tears as I thought of my little angel and what a gift she was to all of us. I knew Jaden was recovering well, but I had no idea that his pre-transplant condition could also be improved. In other words, I knew the goal was to get Jaden's body back to as close as pre-transplant state as possible, but I didn't realize that Gia's cells could actually heal some of the damage that was done pre-transplant. I stopped to say a quick prayer in my head and thank God for all the blessings we had received. I could not have imagined a better outcome for my son.

Before we knew it, we were back on our way home. Another check-point, another milestone, another visit with our "family" completed.

Happy New Year-What a great start to 2011!

2011-01-15T10:53:00.001-08:00

Looking for seals in Monterey Bay

Gia trying to get in on the action

Aquariums are pretty interesting after all!

Thanks, Dad, for getting us out of the house!

Baking Christmas Cookies!

I got what I wanted for Xmas!

Feeling so blessed on this New Years' Eve

Walking to school with big brother: 1st day back!!!

So excited to be back on campus with his friends!

The winter holidays got off to a wonderful start. Jaden was due to have his port removed Friday mid-day. I was nervous and I could tell Jaden was too. He hated the mask that they put on him in surgery for the anesthesia. He said the air tasted bad and would panic every time. He kept asking me if they were going to put the mask on his face. "I'm not sure, Jaden. We'll find out when we get there." I knew they most likely were but there was no point in getting him stressed out so far ahead of the procedure.

We arrived as UCSF and checked into the surgery center. We waited in the prep area and nurses came in and prepared all the paperwork. One of the nurses asked me if the port was infected or if were all finished with treatment. I thought for a moment. Wow, this is it. We are ALL FINISHED. "It's not infected, we don't need it any more," I replied. I could feel that surge of emotions welling up inside me again. I hadn't let everything out, so I knew my meltdown was still coming.

Soon after, the doctors and nurses came by, each asking specific questions in preparation for surgery. Then the surgeon came by. "So, we're taking the port out. All done with treatment!" I nodded my head, and that was it. I burst out into tears. They were uncontrollable. Just hearing the words "All done with treatment" brought back a rush of all the emotions I had felt before, during, and after transplant. "I'm so sorry," I managed to blurt out in between sobs. "That's okay. You're not the first one to feel this way." The surgeon put his hand on my shoulder to comfort me. I was able to pull it together long enough to get Jaden into the surgery room. I was allowed to go in once I had put the sterile bunny suit over my clothes and covered my hair with a bonnet. Needless to say, Jaden wasted no time in telling me how ridiculous I looked. Thanks, Jaden. Good to know you can still be a wise guy as you're being wheeled into surgery! Jaden shot back one of his infectious smiles and we were wheeled into the operating room.

I held his hand as the anesthesiologist explained what was going on. This really reminded me of Duke. Everything is explained to the child before anything is done. There was a monitor in the room and Jaden was able to watch a video. The doctors had music that they listened to while they worked. The nurses were so sweet and really trying hard to make Jaden comfortable. Then he saw it: THE MASK. MOM! Jaden started to freak out. Jaden, it's okay. The doctor assured Jaden he wouldn't put the mask completely over his face. "We'll leave it right here, close to your mouth, but you have to take deep breaths." Jaden was starting to really lose it. The tears were flowing as the anesthesiologist tried to sneak the mask closer and closer while Jaden did his best to push it away as he screamed. Finally, the doctor told Jaden that it was either the mask or he'd have to start an IV to get the "sleepy medicine" into him. NOT an IV!!! Jaden had horrible memories of botched IV placements during his years in treatment. I can also remember several occasions where we had to literally hold him down as he cried uncontrollably and broke out into a sweat while two nurses, one holding his arms down and the other beside his bed, worked to place the IV into his arm. It was THAT terrifying. Immediately, Jaden shook his head and said "mask!".

Unfortunately, the mask didn't seem to be doing the trick. It was taking much longer than usual and Jaden was getting more and more terrified. The doctor finally pushed the mask on Jaden's face and asked the nurses to prepare for IV placement since the gas didn't seem to be working. Within a few seconds we looked over at Jaden and he was out. Phew! Thank goodness. My heart was racing so fast I thought it was going to leap out of my chest. "Give him a kiss on the cheek mom, and you can head back to the waiting room, " the doctor instructed. I nodded and walked to the hallway where I removed the sterile suit and hair cover and headed back to the waiting area. I was told it would be 40 min to about an hour, so I decided to grab a quick lunch in the hospital cafeteria.

As I walked, I had so many thoughts and memories rushing through my mind. I remember the apprehension about transplant, the research, the visits to the various bmt clinics, arriving in Durham, the transplant itself, the days and months after...it was all too much to bear. The pressure was building up in my head and I knew if I didn't release my emotions, I would burst. But again, this was not the time or place. Right now I had to focus on getting through this moment, this procedure, this day. That's how I'd gotten through transplant. All the stress, all the anxiety, all the pain...just one day at a time.

I ate quickly and headed back to the surgical waiting room. I knew it was a short easy procedure, but I was still a little scared. My timing couldn't have been more perfect because as soon as I checked into the nurses station and sat down, my name was called. Jaden was in recovery and starting to wake up. I rushed immediately to his side and held his hand.

Jaden hated waking up in a dazed state. He would be so scared and confused. I saw his head poke up and his eyes open briefly. Mom? I'm here, baby. Go back to sleep. He had all sorts of monitors attached to him. The nurse said he wasn't ready to be awake quite yet so she encouraged him to rest a little more. Jaden fell back asleep. Before long, he sat up and looked at me in a groggy state. "Let's go!" I looked at the nurse and she shook her head. I knew the routine. He had to be alert. He had to drink some juice and keep it down and his heart rate and other monitors had to be in normal range. We got Jaden some juice and he asked to see his his chest where the port was removed. I remember the doctor telling me that they would make the incision in the same place so Jaden would only have 1 scar. As Jaden pulled back his robe to take a look, I pointed out the way his doctor had shaped the gauze to look like a football and put the pen marks on it to show the stitches in the ball! How cool is that Jaden? Jaden nodded but was more concerned about the blood he saw seeping through the gauze. Why is there blood? Jaden seemed anxious. It's nothing, Jaden. It's just the little bit from when they took your port out. Don't worry about it. But worry Jaden did. He always worried. He would pretend to play his DS as the doctors made rounds when he was on the bmt unit, but would secretly listen to all the conversations. Then later he'd ask me if he was okay.

I think Jaden knew there was a lot that could go wrong. He heard and saw things around him that scared him and made him worry. I did everything to ensure him he was in the best hands and he was safe, but I knew there was a lot going on in his mind.

Jaden wanted to get dressed and go home he was starting to cry. The nurse looked at his IV and he freaked out. I had warned her, as I did with others before her, that Jaden hated to see the IV. It made him panic and he would scream. Then Jaden screamed "I DON'T WANT ANYONE TOUCHING ME!!!!" I had seen glimpses of HIS pain and suffering, all HE had gone through, starting to surface and this outburst just reminded me that there are a lot of feelings Jaden had not yet dealt with. At our last clinic visit, I had asked Dr. Cowan's team for a therapist so Jaden could start to heal on the inside as well. I was given a list of Play Therapists for Jaden. At this age, it's not a lie down on the couch and spill your feelings type of therapy. The kids engage in play--a board game, a card game, something to get them engaged so they don't have to just sit and talk. While they play, the therapist asks him questions and gets him to talk about how he's feeling. I had done this for Devin through his school last year and it seems to work well. I know it helped Devin quite a bit too, although there are still feeling of separation and loneliness he harbors. But, one child at at time. Right now, I must focus on Jaden and getting him the help he needs to deal with the flood of emotions I know he must have based on everything he has endured over the past 6 years.

We were soon on our way home. I walked through the door and saw our moms, both Guri's and mine, waiting for us. I walked over and hugged my mom who whispered "congratulations!", referring to the fact that Jaden's port was out and he was finally "free". That was all I needed. I hugged her tight and sobbed like I have never done before. Okay, well, as I've only done A FEW times before. I could not stop myself. I was bawling. I was so loud. My body was literally shaking. It was as if all I had endured, all that was pent up inside me was pushing its way out. I knew it was okay. I was home. I was safe. I could let it all out...finally. The boys glanced up briefly and then went back to their video games. As I said, this is nothing new to them. Mom is a basket case and they know I'm at a point that I cry at just about anything--tv shows, cartoons, commercials...just about anything can set me off.

When I felt like I had released enough of the stress, I looked up and wiped my eyes. There was lots of hugging and celebration all around as we celebrated another milestone in Jaden's Journey.

The next two weeks were spent enjoying family time at home. I didn't want to overexert Jaden and wanted to give him time to heal from his latest surgery. As promised, we went on various excursions. Guri dragged us all out of the house on windy, rainy Sunday to the Monterey Bay Aquarium. He was sick of the boys playing video games and seeing us all just sitting around. We got the kids and all our stuff into the car and off we went. It was a wonderful day and the kids had a blast. Gia was thrilled to see so many fish and couldn't get enough! She wanted to touch and see everything.

We also went to Union Square in San Francisco to see the Christmas Tree and enjoy the holiday light displays. Of course, it was not without the usual meltdowns. Devin wanted to ice skate in the square, but there was a long wait and we were with my sister and her family. The plan was just to walk around and enjoy the festivities. It took a lot of patience and redirection, mainly on Guri's part since I was ready to lose it with the kids myself, to get us back on track.

The rest of the week was windy and rainy and we couldn't really get out of the house too much. We were lucky that some of our LA family was visiting so the holidays really were extra fun this year. As Christmas Day neared, Guri asked me what I'd bought for the kids. Nothing. Remember, we said we weren't going to get them anything. They have toys they will exchange with each other and then they will get things from their aunts, uncles, and cousins. Really? Guri looked at me sheepishly. We're not getting them ANYTHING? Nope. Not a thing. I haven't even bought anything for stockings yet either. Santa may or may not be visiting this year, especially after the meltdown in Union Square!

Guri is such a softie when it comes to the kids. He will do anything for their happiness. Eventually, he convinced me that it was too harsh a punishment and off we went to the mall to fight the crowds, the day before Christmas Eve no less! We ended up with a few things we knew the kids would like and headed home to prepare for Christmas.

Before we knew it, the holidays were over and everyone was back to their normal routine. Except for Jaden. The first day back to school (okay technically the second) was the day after winter break. He was elated. Jaden had his backpack ready to go and was asking a thousand questions about school, the playground, and his friends. Who would he sit with at lunch? What would he play at recess? His favorite activities seemed to be kickball, wall ball, and anything else that involved a ball! It was wonderful to see the excitement in his face and know that he would be back in his element where he belonged. It seemed things were finally moving in the right direction and Jaden was getting back to himself.

New Beginnings: Am I ready for this freedom?

2010-12-15T14:11:00.000-08:00

Surprise "Suite" Tickets to the Lakers Game!

It got better and better: Lakers goody bag from our friend Eric!

Your generosity really touched us. Thank You Eric!!!!

Family fun at Staples Center

Go LAKERS!!!!

All dressed up for Thanksgiving dinner with our L.A. family

A rare family photo

These boys spell T-R-O-U-B-L-E!!!

A day in the life of a SF 49er quarterback

It doesn't get any better than this!

Did you see that play??!!

Boys day out

First FULL day of school: December 16

Walking side by side with big brother

It feels so good to be back amongst friends!

We officially transitioned to UCSF last month. On Nov. 17 we had our first clinic visit with Dr. Cowan and I was completely blown away by the drastic difference of opinion amongst the various bone marrow teams. There is Dr. Prasad, who is ultra conservative, erring on the side of caution sometimes maybe a bit too much. There is Dr. Walters, who is also very cautious and "by the book". Now we have Dr. Cowan, who is also very seasoned yet completely liberal and holistic.

Jaden had labs drawn as usual. Dr. Cowan also wanted his own DNA samples for Jaden and Gia so he could run the chimerism at UCSF's lab. Jaden's sample was easy, just added to his routine lab draw. I was given a cheek swab kit and told how to collect cell samples from Gia's inner cheek lining. Let's just say it was easier said than done. I had her in her high chair and she still fought me. First I forgot to put my gloves on before I opened the sterile swabs and of course I opened the wrong end, lightly brushing my own thumb across the tip of the swab. Then as I collected the samples, Gia grabbed my hands, sucked on the wire swabs, and generally "got in the way" of my collection. I even emailed the team later to let them know I wasn't sure if the samples would be valid, but luckily they were fine.

Back to our first visit, Dr. Cowan was initially very cold. He didn't even shake my hand and I sensed some "we could have done this here" sentiment. Dr. Cowan asked why Jaden was still on immunosuppressants and I told him that Jaden's lymphocyte count had dropped to 22% at Duke. He looked puzzled and told me that in his experience the counts rebounded on their own over time, without immunosuppression. Jaden's lymphocytes were not the issue with CGD, so it didn't really matter if his own cells returned. The question was about living with what's called "mixed chimerism", or Jaden's body having his own and Gia's cells and their ability to coexist within him. "That was your concern when we spoke last time," Dr. Cowan mumbled, once again hinting that we were in a position that we were trying to avoid by going with UCSF for transplant.

He's right in a way. We loved Dr. Cowan and UCSF and almost did do the transplant here. Our concern was really with the reduced intensity conditioning regimen used. Yes, it's much easier on the child's body and there are less side effects of the heavy-dose medications. However, Dr. Cowan had also told us there was an instance(s) of children needing to be re-transplanted (i.e. getting a second transplant) because they did not engraft with this regimen. This was a chance we were not willing to take. Looking back, I can't image going through all of that (even if it's to a lesser degree the second time) over again. I had also checked with other centers and the experts had agreed that for CGD, fully ablative regimen (ie full dose chemotherapy) was needed in order for transplant to be successful.

We reviewed the med checklist and Dr. Cowan seemed surprised Jaden was still on all these meds. I asked about Azithromycin and whether that could be removed. I told him about CHO and Duke and the differing opinions about Jaden's chest CTs. Dr. Cowan just looked at me and said Jaden was on such heavy-duty medications with things like Voriconazole and the immunosuppressants that, essentially, the little extra bit of zithro he was getting should be the least of my worries. We then talked about Jaden's port. "Does he not have good veins?" asked Dr. Cowan. No, I think his veins are fine. Again, Dr. Cowan seemed to scowl. "Then there's really no reason for him to have a port". I was really starting to question all of our decisions at this point.

We then spoke about our upcoming trip to Los Angeles for the Thanksgiving holidays. I confirmed that it would be okay for Jaden to go, especially to the Thanksgiving dinner itself, which would mean there are lots of people around. I asked about the protocol for emergencies. What symptoms should I look for? Do I call UCSF or Children's LA directly? Dr. Cowan glanced over at me and told me that with a port, the first thing anyone would do is a lab draw to check for infection. After all, it is a foreign object in Jaden's body and infections were not out of the question. Once again, I thought about if we had done the right thing by leaving the port in for so long. Dr. Prasad had told us that many people have it for years and it's not a problem. I now thought about all Jaden COULDN'T do because of his port, or the potential risk of falling on or having impact to it.

After doing a physical examination and telling me that Jaden looked great clinically, Dr. Cowan left the room. I finished up with Linda, the nurse practitioner and we headed back home.

That weekend we left for our week long trip to LA. We were all looking forward to it, but I was also apprehensive about Jaden being surrounded by so many kids (and adults). I hoped and prayed that he'd be okay and we began our 6 hour road trip down Hwy 5.

We all enjoyed ourselves, but Jaden especially had a blast. It was so wonderful seeing him amongst kids his own age, laughing and playing. We literally had to drag him home every night so he could get a little rest.

As if being with his cousins wasn't exciting enough, Jaden's bhua (aunt) worked with the local Coca Cola rep to secure Lakers basketball tickets for the boys. She surprised them the day after we arrived and the boys were thrilled. I was so touched by Sabrina's gesture and couldn't believe Eric, the Coke rep, had provided us with tickets in their suite at Staples Center to see the game on our own. I was concerned about Jaden being in a stadium and this was the only way he could go see his beloved Lakers play. Eric assured us the suite would be there for our use. He could conduct his business with Gunu bhua while the kids enjoyed the game.

Needless to say, the suite at Staples Center was amazing. Eric had gone out of his way to take care of us. He gave Jaden a bag full of Lakers merchandise. He had asked Gunu ahead of time what Jaden liked to eat and then ensured that the suite was well equipped with Jaden's favorites: chicken nuggets and lots of COKE! I was so deeply moved by his generosity. Eric told me he had been following Jaden's journey via this blog and wanted to meet him in person. I think Jaden is the one who lucked out and could see for himself the impact of the kindness of strangers. Although, after our evening with Eric, he is more like a member of our extended family now.

By the time we returned, the lab results from UCSF had come in. I had asked to be notified as soon as they were available. Jaden also had a cortisol level drawn before we left since he was basically weaned off of hydrocortisone. Unfortunately, the labs showed that Jaden's body was not yet making enough of this hormone so he was put back on hydrocortisone at "physiological dosing", which was 7.5mg three times a day. I was upset about this potential set back, but Dr. Cowan assured me Jaden would rebound in time.

The best news came a few days later. I received an email from Dr. Cowan about Jaden's immune function testing. Most of the results were within normal range. Dr. Cowan recommended removing Jaden from isolation. What? I went back and read the sentence over and over again: "His T cell immunity however is 59% of normal control with > 1000 CD4 cells, which as far as we are concerned is normal and means you can take him off isolation completely and let him go to school." Take him off isolation completely? What do you mean? He can be around people? He can be in groups? I just couldn't believe it. I couldn't grasp the concept that Jaden was no longer restricted to the house and a few close friends.

Around that time, Guri got his hands on a set of 49er tickets. My first instinct was "Jaden can't go to a stadium with a bazillion people!" Then I thought a minute. "Can he?". I shot off an email to Dr. Cowan and his response was "Yes!". No, I don't think you understood me. Can Jaden go to a major football game, tailgate in the parking lot, and sit shoulder to shoulder with a crowd of people--none of whom I have control over as far as health is concerned? Again, Dr. Cowan assured me Jaden would be fine. "You have to start somewhere" was his response. Really? SOMEWHERE? How about a little gathering of friends? How about school for 2 hours instead of 30 minutes? That's "somewhere". Throwing him head first into a stadium of germy people, is not merely "somewhere"! I had to regroup. Was I keeping Jaden home to protect HIM or to protect myself ? After hyperventilating for a while and having some anxiety attacks, I decided to let him go. I did give him a mask, just in case someone coughed next to him.

The boys had a blast. Jaden went with a group and they really enjoyed themselves. I was so glad he had the opportunity to enjoy a real football game, but I also was very nervous about the aftermath. I almost secretly waited for him to get sick. Days passed. Nothing happened. No fever. No rash. No cough. Just a little sniffle here or there, but nothing major. Phew! Okay, we got through this event. Let's not tempt fate. Keep it on the down low for a while, will you buddy?

I decided to let the school and his home-school teacher know that Jaden had clearance to return to school. However, I wanted to wait until our clinic visit with Dr. Cowan on 12/15. I wanted to get clarification on immunizations, port removal, activity levels and a thousand other topics related to returning to "normal life". Guri and I discussed his return to school and thought Jan. 3, 2011 would be a good time. It would be the first day back after the winter holidays and a new beginning of sorts. Jaden could start fresh. No point sending him with only a week or so left of school and then having him get sick. Let's wait until the visit with Dr. Cowan.

In the meantime, Dr. Cowan had Linda fax over the accelerated immunization schedule for Jaden. With his cells brand new and completely replaced, he would have to be re-immunized to be protected. Essentially, he would have to retake the shots he was given for the first 5 years of life. Luckily, it was a few to start: DTP, Hep A, Hep B, and another one. I reviewed the schedule with Jaden's pediatrician, who also wanted to add Prevnar and Hib. Dr. Cowan agreed and we had a plan. We did have to get pre-titers so the doctors could gauge how well Jaden's body was producing the antibodies once he received the vaccinations. Since Dr. Sachdeva did not have a lab in his office, I suggested we wait a week until Jaden's next clinic visit and just draw all the labs at the same time.

The big day came. December 15. I had so many questions in my head, I could barely keep them straight. Add to that the frenzy of the last week of school before the winter holidays and you can imagine the chaos. Heritage dolls to make, Heritage Feasts for which to bring food at school, gifts for teachers, nannies, and everyone who had touched the kids' lives to date. Of course there was the paired down Christmas gifts for the kids as well.

I guess I should mention I had a cosmic meltdown with the boys and cancelled Christmas. I was so livid about the lack of listening, the constant horseplay, the running/chasing/teasing/screaming that I just lost it. The outburst took everyone by surprise, including me. Before I could retract them, the words leaped from my mouth. Uh oh? Did I go too far? Were they really THAT bad? No, they are good kids. I'm just old and tired at this point and completely lacking patience. Now what do I do? I called Guri and told him about my unraveling with the boys. There was silence on the other line for a few moments and then a quick "if that's what you think needs to happen, I guess that's what we'll do." I could sense the hesitation in his voice. He wanted to support my decision, but he also thought I had lost my marbles, AGAIN. With that Guri told me he had to get back to work. Nice save...

We ended up talking about it later that evening. What was my objective of taking Christmas away? Well, the kids already have a ton of stuff. They don't seem to appreciate anything they have and are constantly losing things. We need to give back and teach them to do the same. Moreover, I wasn't happy with the curt, rude, snotty responses I was getting from them lately. They have no respect for their elders. This will teach them a lesson.

Will it? Guri asked. Did YOU appreciate what you had when you were 7 or 10 years old? Were YOU involved in charity events and handing out blankets to the homeless on the street corner? Do you even REMEMBER life at 7 or 10 years old? It is all about ME at that stage. They aren't thinking about how to save the world or feed the homeless, they're thinking about that new Xbox game their friends have and they don't! They are just kids. They're supposed to be selfish at this age. They will learn to give back over time. They will learn to give back by watching US and learning from what we do.

Really good points. Damn, I hate when my husband whips out the wisdom. Maybe I do expect too much from them. Maybe it's MY issue, not theirs...but, that is a therapy session I will end up paying someone a pretty penny for in my later years. Ultimately, we decided that we would get a tree and put up decorations. The kids could exchange gifts amongst themselves, but we would not give them gifts. Instead, we would spend their weeks off creating family experiences: visiting museums and parks, looking at holiday lights, and generally bonding as a family. Honestly, at that point, I was convinced Santa would not be visiting our home. Now, I'm not so sure the little guys deserve such punishment. It's such a thrill for us to see them run downstairs on Christmas morning and rush to their stockings. The house is filled with laughter and squeals of joy. Do I really want to take that away from them? It's our first Christmas together as a family again. It's Jaden's first real holiday after transplant and after being home. You see where this is headed, don't you? I better get to Amazon.com while I still have time!

Needless to say our guys did not take the news well. Experiences? We go to San Francisco all the time! You're not giving us anything? But you are the ones that give us the GOOD stuff every year! Yes. You heard us correctly. We will go to Union Square and see the holiday decorations. We will go to Christmas in the Park in San Jose and enjoy the displays. We'll drive through the sound and light show at Vasona Park and it will be beautiful. You will enjoy yourselves and appreciate every moment with us. Even if it kills you!

Oy vey, I digress again. Those that know me well can tell you how often I switch tracks and abruptly start/end conversations. That's because I'm having a thousand conversations in my mind at the same time. I just happen to let you in on a few of them now and again!

Getting back to Jaden and school. After our appointment with Dr. Cowan and the "all clear", Jaden wanted to go to school right away. Really, Jaden? It's Thursday tomorrow and you're getting your port out on Friday and then the 2 week winter break begins. How about we just hold off until after break and you can go full time then? As much as I reasoned, Jaden wanted no part of my waiting game. He wanted to go back to school immediately, even if it was only for a day.

Thursday morning came and Jaden was thrilled to bits. I don't think he slept much the night before. He was dressed and ready to go by 7:15. I gave Devin some pointers on showing his little brother around campus. "Can you show him where to line up? Can you tell him the routine in the cafeteria?" I wanted to make sure Jaden didn't feel lost on his first day back. Ultimately, I decided to walk the boys to school, which is just up the street. It was the most adorable thing. Jaden had his backpack on and was just bouncing with anticipation. Devin was cool and calm and giving Jaden the rundown. Gia just wanted to get out of the house for a change! It was a bitter cold morning but we all walked to school. I felt a few tears well up as I walked behind the boys. Oh no, this could be bad. Not now...

We got to campus and I showed Jaden where he would line up with his class. The grass was covered with frost and Devin wanted to take his bro "skating". All the kids were slipping and sliding around on the field. It was so good to see Jaden out amongst his peers. Soon Devin found a friend and off they went. Jaden ran back to my side. I could tell he was a little nervous. I decided to walk him back to his line to see if any of his buddies had arrived. THOMAS! There's Thomas, Jaden! Jaden ran over and high-fived his buddy. Soon he saw a few other familiar faces and he was right in his element. I watched from a distance and felt the tears creeping back. Hold on, not now...

Mrs. Johns came to get her class and gave me a huge hug. "I'm so excited Jaden is back!", she squealed. "I'm not ready," I blurted out loud. "Don't worry, I'll take good care of him." I knew she would. Mrs. Johns was fabulous. The best teacher their school has, hands down. She has been incredible through this journey, doing anything and everything to ensure Jaden felt like a part of the classroom community, even when he was home-schooled. She emailed me constantly and spoke with me about what she could do to help, how she could get Jaden feeling like a part of his class. She had his drawings and schoolwork up on the wall and spoke to the class about him often. She Skyped with us from home, offered to stay after to meet with Jaden one on one, and essentially was a second mom to him in the classroom as she wiped down his desk with Lysol and ensured he wore his mask. I LOVE MRS. JOHNS! There, I said it.

Mrs. Johns greeted Jaden and led her class to their room. Jaden turned around and waved and I could see the sheer joy in his face. He was giggling and playing with his friends. And then it came. First as a slow wave and then a complete flood of emotions. I couldn't hold the tears back any longer. I was so happy my baby was "normal" again. It had been a long time. He had been through so much. I felt the surge within me and knew I had to get out of there before I fell to a heap, sobbing right there in the middle of the playground.

I grabbed Gia's stroller and quickly headed home. I had a few short outbursts on the way home, but couldn't fully release since I was in public and didn't want the neighbors to think I was some crazed lunatic. It was really tough. I knew I had to let all these feelings out. I had to let go of the pain, the anxiety, the apprehension. Jaden will be okay. He IS okay. It's time to let him get back to his friends, his life, his routine. He has been captive long enough.

I went back to pick Jaden up from school and he was BEAMING. He came out with Thomas and they asked to have a play date. Sure, Jaden, no problem. I'll call Mrs. Vaughns and set that up. How was your day? Jaden couldn't contain his excitement. "It was the best day ever!" Jaden proceeded to tell me about school and his classmates and the cafeteria. I asked him what he chose for lunch and he said "I had all my food groups, mom". Jaden then described the meal: corndog, chocolate milk, carrots, and .....GRAPES! "I knew you asked me not to rush into everything all at once, but I really wanted them. So, I figured I'd just eat them and deal with YOU later!" I wanted to laugh out loud. I had told Jaden that although he could do whatever he wanted and eat anything, that he should take it slow. Let's not go crazy. Let's try one thing at at time. I was thinking that if there were any issues, I would then be able to trouble shoot and figure out what caused it (again, waiting for something to happen).

The best part of the conversation came when we were home. Jaden was starting to play video games when he shouted out. "Mom, I think I was angry and rude because I couldn't play with my friends. I was bored. I'm going to be a good boy now!" I was so shocked by his own admission, which made perfect sense. I'd be crabby and bitter too if I was isolated for such a long period of time. Okay, maybe I should say that I'd be MORE angry and bitter ;-). Jaden walked over to me and gave me a big hug and we snuggled for a long while. I couldn't wait to see him back in his routine once the winter holidays were over.

The More Things Change, The More They Remain The Same

2010-11-08T21:37:00.000-08:00

Halloween Parade at School

Luke Skywalker Pilot, Darth Maul, and our Little Devil!

Hitting the streets of San Ramon

"It's mine, all MINE!!"

Taking inventory of the goods!

Back to Tae Kwon Do

It was fun while it lasted!

First school field trip to Safeway- the refrigerated truck was Jaden's favorite part!

New cashier on check stand 4!

Finally-the first baby tooth to go!

Enjoying family traditions at the Sikh Temple

Diwali Celebrations

It's been quite a while since I posted and I wish I could just tell you that it's business as usual. However, just when I think everything is stabilizing, it changes. Which, in a way, is the new norm.

The biggest news is my recent decision to fire the transplant team at Children's Hospital Oakland. We had originally selected this facility as our follow-up center based on it's proximity to our home (only 30 minutes barring traffic) and the fact that Jaden's Attending at Duke had a "close personal relationship" with the director at CHO. Unfortunately, this relationship backfired as the team at CHO didn't seem to want to collaborate with Jaden's team at Duke. Moreover, it seems that Dr. Walters didn't really appreciate my active involvement in Jaden's care. If you know me, you know this is not negotiable!

It started with my frustration with the lack of communication between departments. I had taken Jaden in to see Dr. Hardy, his pulmonologist, a few weeks ago on a Saturday afternoon no less. When we arrived, I soon realized that Dr. Hardy once again did not have access to Jaden's recent PFTs or his High Altitude testing, all of which she had ordered herself. So, after a quick physical exam and a thumbs up from Dr. Hardy that all looked well, we had no choice but to head back home. I was so frustrated I thought I was going to blow my lid. I had come in on a Saturday--Dr. Hardy had invested her precious Saturday clinic time--for nothing! I walked away not knowing any more than I had coming in to the appointment. When I questioned Dr. Hardy about the disconnect, she told me that although the information was in the system, she did not have visibility to it. Apparently the technician doing the test first signs off on the report and then it goes to the Fellow, who signs it and send it off to the Attending. If the Attending has not signed off on the report, no one has visibility to it-which is what happened in our case. I could not believe the inefficiency in this place.

To top things off, Jaden had a few sniffles and Dr. Hardy scared the &*%$ out of me by asking all sorts of questions and reminding me about the whooping cough epidemic. She told me to ensure Jaden had his DTP shot IMMEDIATELY and that I should double up on his Azithromycin if things didn't improve in a few days. She put me in such a panic that I cursed myself for being too lenient with Jaden. Maybe I shouldn't have let him go to school so soon, even for the short time frame that he participates. I was ready to call my pediatrician and set up the DTP shot and then I thought that I better cross check this with his bone marrow transplant team at Children's Oakland. I emailed Sherrie, our nurse practitioner, that night and asked her for her recommendation. Was it okay for Jaden to get the DTP shot? I needed to know immediately. My plan was to get this done first thing on Monday morning. As usual, I put a sense of urgency in my message and pressed her for an answer right away.

The answer I received both shocked and infuriated me. Sherrie told me that the DTP wouldn't help Jaden since he's on immunosuppressants. In essence, it would do him no good. She also didn't seem too concerned about the sniffles and said to wait and watch before making any medication changes. Once again, the right hand was not talking to the left. I was getting very frustrated by having to orchestrate all this communication, which in my mind, should be seamless.

But I guess the breakdown started well before my appointment with Dr. Hardy. Last time we were in clinic, Dr. Garcia (one of the Attendings and the doctor we seem to see most often in clinic) reviewed the usual information with me. He mentioned that flu shots would be given to patients in the October clinic. So, it's okay for Jaden to get the flu shot this year? He nodded and told me they would have a supply in by the time I came back in October.

On my way home, I remembered I had already scheduled Devin and Gia for their flu shots with their pediatrician (mind you this is in mid September). Why wait until October? It takes a month or so for the shot to take affect, so the sooner I get Jaden the shot, the sooner he will be protected for the winter season. I called Sherrie and left her a voicemail asking if it was okay for me to move forward with Jaden's flu shot that week and Sherrie later confirmed to me that it was fine.

Coming back to Jaden's October clinic visit. I was elated that we would be seen by Dr. Walters himself. He is the director of the program and rotates through the clinic only so often. This would be the second time we saw him since we returned home last April.

Dr. Walters is a man of few words and I'm the exact opposite. I always have a lot on my mind and am not shy when it comes to sharing my opinion. I started by asking Dr. Walters how things were going. After the usual pleasantries, I mentioned that I was frustrated by the lack of communication within CHO. That was it. Dr. Walters immediately started off with "It seems you're not happy with us. I'd be happy to transfer Jaden's care..." SAY WHAT? Are you kidding me? Did I SAY I wanted to transfer his care? I was merely mentioning a breakdown in communication within his organization and seeing how he's the head of his department, I thought he may want to know about my frustration and what I was experiencing from a patient's perspective. Man was I wrong! He had no desire to hear what I had to say. I felt as though he had already labeled me a P.I.A (Pain In the Ass, for those not familiar with "medical" terms) patient and wanted nothing more to do with me or my son's care. This of course infuriated me even more.

After many moments engaged in what I call "educated banter", where we were both expressing our opinions in a very formal and "professional" manner. Dr. Walters: point. Kiron: counterpoint. The exchange was getting ridiculous and I found his demeanor to be both curt and condescending--two qualities I don't particularly care for. In short, he mentioned how I had gone on my own to make Jaden's endocrinology treatment plan recommendations-going as far as to ask for a transfer to Stanford (this is true, but I just did not feel comfortable with our endocrinologist at CHO and Jaden's care is much too important to me to worry about stepping on toes, even if it happens to be that of the director), gotten Jaden a flu shot even though it did him no good because of the immunosuppressants (I beg to differ--that's not the information I received from YOUR team member!), and on and on and on. This is ridiculous. I wanted to change the tone of the conversation, so I tried to turn things around by asking how I could help the situation. Dr. Walters told me there was a records department and I was more than welcome to retrieve all of Jaden's records and take them from specialist to specialist. Are you HIGH? This is not a simple procedure we're talking about. My son has gone through a stem cell transplant, a complete "system reboot" if you will. I couldn't even imagine the stack of documents and films associated with his "records" at this point. I was LIVID! I wanted to literally wrestle the doctor to the ground at this point and had to bite my tongue and hold myself back. Forget it. It's no use. Why waste my energy and breath? I left feeling enraged and misunderstood.

On the drive home, I replayed the conversation in my head over and over again (you'll notice that I have many an epiphany while on the road!). Then it dawned on me. Wait a minute. He's right! I'm NOT happy here and I DO have a right to go elsewhere. As a matter of fact, as the advocate for my child, I'm going to exercise that right--TODAY!

As soon as I got back home, I spoke to Guri about this most recent confrontation. He was surprised I held back. He said if he was there, he would have not been so polite and "laid into the man"! No point. I don't think it would make a difference. I wanted to do what was right for Jaden and this place certainly was not.

I called UCSF and found out what I needed to do to initiate the transfer. They wanted a referral from Duke. I emailed Dr. Prasad and gave him a quick update. I also emailed Sherrie and told her I was going to transfer Jaden's care to UCSF and to ensure Dr. Cowan at UCSF had ALL records for Jaden. She agreed and wished us well.

This setback actually turned out to be a great opportunity to reconnect with Dr. Prasad and get his opinion on Jaden's treatment plan. Since Jaden was in between centers, Dr. Prasad felt completely comfortable getting involved. Technically there was no one directly involved with managing Jaden's care at this moment, so he wouldn't be stepping on anyone's toes. When I told him that I wished we could have stayed at Duke until Jaden was completely recovered, he jokingly told me to move back to North Carolina. We would have loved to, but it just wasn't feasible. I couldn't imagine splitting up our family again or being so far from those that we love so dearly. Guri even suggested we just take Jaden to Duke more frequently and let Dr. Prasad manage his recovery. Dr. Prasad told us he would love to see us more often, but we needed to have a local bmt center for Jaden in case of an emergency. It all made sense, but we so wanted to be back at Duke among familiar surroundings, where the team knew Jaden (and our family) so well.

As is my nature, I drafted a very detailed message to Dr. Prasad. I wanted to give him an update on every aspect of Jaden's current treatment plan, essentially, a data dump: where he was from a pulmonary, endocrinology, and bmt standpoint. Dr. Prasad must have been amused by my essay on Jaden's care, because he sent me a quick "my typing skills are not so good as to respond. will call you tomorrow" response. We both had a good chuckle about it the next day. I told him my emails were not Blackberry compatible--they are not short and sweet, so using a PDA to read/respond isn't always an option!

Dr. Prasad asked me for an updated medication list and we reviewed all the points in my email. He started off by apologizing for things not working out at CHO. I knew Dr. Walters was a "personal friend" of Dr. Prasad, so I wasn't about to go off on a tirade. I merely mentioned that I should have gone with my gut instead of going with the center that was closest to home. Done. Move on...Dr. Prasad said he would speak with Dr. Cowan and set things in motion.

Even though it had been only a few days, it felt like an eternity. I was so stressed to have Jaden's care in limbo. What if he got sick? What if there was some other emergency? Where would I take him? I didn't want to take him to CHO and he was officially out of their system anyway. On the other hand, Jaden was not yet seen by Dr. Cowan, so UCSF wouldn't know what to do with him. I crossed my fingers and prayed daily that Jaden would be okay. I checked in with Dr. Prasad, who was traveling as usual and unable to speak live with Dr. Cowan. He finally sent me an email letting me know that Dr. Cowan would be happy to take over Jaden's care. Phew! Now it was just a matter of getting Jaden on Dr. Cowan's schedule. I also had to get him transitioned to an endocrinologist soon since he would officially be OFF hydrocortisone in another week or two. It was also coming up on Jaden's next clinic visit and labs needed to be drawn as well. I sent off a quick email to UCSF and begged for an appointment next week, before we left town for the Thanksgiving holidays.

Oh, did I mention that I decided to go back to the office during this time? So on top of the usual medical headache, I was up to my eyebrows in resumes from potential nannies and already starting to transition (or throw myself head first) into my job responsibilities. In a way I think my sister, Rita, is right. I'm so used to having fifty things going on at the same time, that if there's ever a "free" moment, I have to ensure I'm overloading myself. I thrive in the chaos.

Actually, work is my savior. It allows me to escape the mundane routine of feeding, bathing, and generally keeping the kids out of trouble. I try not to think about doctors and medical visits and my responsibilities as a parent. It is to me what "L.A." is to Jaden. An escape. For a few hours a day, I can be creative. I can learn new things and use my mind in a different capacity. I can have conversations with other adults about things that have nothing to do with school, who smacked whom first, the mess that is perpetually our family room, or the sometimes unbearable noise level... I only have to take care of and feed one person (okay, maybe two people--me and Guri)!

Of course the trade off is that my work load has quadrupled. I go from rushing to get the kids fed and off to school, making sure Jaden is doing his homework, Gia is not destroying or abusing anything or anyone, making lunch for me and my partner in crime, to my long "to do" list at work, only to rush home and start the after-school activities, dinner, etc. Luckily, I'm blessed to have a true partner who comes home from work and jumps right into the mix.

But enough about me. Let me update you on my little warrior. Jaden had a fabulous Halloween. He chose to be Darth Maul from Star Wars the Clone Wars and was even allowed to participate in his school's Halloween parade since it was outdoors. This was a BIG deal to him. I ordered his costume online and it came without a mask, a key element in the Darth Maul costume. I was so afraid that he would be devastated, especially since it was the night before the big school parade and class party. I was expecting a major meltdown, but was completely surprised when Jaden looked at me and said "Don't worry about it, mom, it's no big deal." That's my boy! He marched with his classmates with his head held high, without his costume mask but WITH his "duck mask". He didn't seem to care if anyone stared or gave him curious glances. That is Jaden. That's what's so wonderful about him. He is so confident (sometimes a little too much even!) and knows what he wants and how to get it. I'm so proud of my little guy! Luckily, the replacement mask arrived in time for the REAL holiday and Trick or Treat time.

Jaden went Trick or Treating with his dad, brother and baby sister. He was so excited and wanted to go around the whole neighborhood. Gia also loved every minute of it. She would be ahead of the boys, running to the front door and learned a new word -"candy"- that day. Guri brought her home after a quick circle around our area because she was just too hard to manage ;-). The kids each came back with a big bag of loot and dumped it in the middle of our family room to take inventory.

Jaden participates in a few other activities during the week. He is home schooled by a wonderful teacher twice a week. He also goes to Music and Writer's Workshop, each of which is 30-40 minutes, every week. So, at least he gets some face time with his classmates 2-3 times a week. Mrs. Johns has been wonderful about helping Jaden feel like a part of her class. We Skype with them once a week and Mrs. Johns is so good about asking Jaden if he is following along, just as if he was truly sitting in the classroom. Jaden was also allowed to go back to his Tae Kwon Do training, although it was short-lived. I really pushed for him to do this and we finally made it work by taking him to a location that only had 3-4 other students. However, with flu season approaching and the fact that it's impossible to have a mask on during class, this idea was nixed after the first two weeks. Better to be safe than sorry. Jaden also continues his Kumon studies, although I take him to the center well before all the children arrive from school. He's able to do much of the work in the center itself, just as he had prior to transplant. If kids start coming in, he puts his mask on and if it gets really crowded, Mrs. Zamani has him work outside on the table and chairs in front of the center. I had also asked the team at CHO and was allowed to escort Jaden on his first school field trip to the grocery store. Not very exciting by any means, but another step closer to integrating with his class. Jaden was very good about wearing his mask the entire time and I watched him like a hawk!

Along with the physical changes with the addition of the activities, I'm starting to notice some mental breakthroughs as well. One night while Jaden was at the dinner table, he gazed up and said "I'm glad I'm not in the hospital anymore." It caught me totally by surprise. Jaden had not mentioned the hospital, transplant, or his ordeal at all until now. "I'm glad my family was there with me." I looked up at him just as tears welled up in his big brown eyes. I had to fight the waterworks myself. I was so glad that we was finally opening up. I wanted to encourage the discussion, not turn it into a sob fest. I started to probe some more in hopes of getting the dialogue going. I asked if he remembered transplant. Jaden nodded his head. He seemed to be thinking of something and not in the present moment at all.

Later that night as I was giving him a bath and continuing the discussion, Jaden mentioned how the worst part for him was the pain in his back and side. I remember it all too well. It was excruciating. Jaden would scream uncontrollably. The doctors were perplexed and even went as far as to say it was "in his head" since they couldn't find a cause or any indication that there was a problem. Ultimately, they determined that it was a side effect of one of his medications (Foscarnate). This med had enlarged his kidneys to the point that Jaden screamed the most ear-piercing scream you have ever heard.

Jaden went on to tell me the next worst part of transplant was the painful urination and the "bloody pee". Yup. I remember that as well. That was the first side effect of transplant Jaden experienced. He had nearly sailed through the transplant itself with none of the usual symptoms--no mouth sores, no bone pain, no engraftment rash. We were actually concerned that he may NOT have engrafted. I was trying to be ultra-efficient by packing up everything in his hospital room the night before discharge and sending it all back to the apartment. Then it hit, in the wee hours of the morning. The morning Jaden was going to be discharged. We went from being sent home in record time (not yet 30 days post transplant) to being held captive on the unit for several more months.

Ms. Powers, Jaden's home-school teacher, and Sophia (our nanny) also tell me that Jaden is starting to open up more with each of them about his time in the hospital. I'm encouraging them to let the communication flow. I also suggested Ms. Powers encourage Jaden to write in his journal about his feelings. This could count as his writing assignments and also be very cathartic for him. I know this blog has been a tremendous source of release for me.

In other big news, Jaden lost his first tooth in mid November. He was so excited, especially when he found the dollar under his pillow from the Tooth Fairy. "See, I KNEW the Tooth Fairy was real!". I gave Devin a stern glare in hopes of keeping him from bursting Jaden's bubble. Jaden still believes in lots of things, Santa, the Tooth Fairy, the Easter Bunny. Devin seems to be questioning everything nowadays, including why we celebrate Christmas and Easter when we're not Christian. Hey, buddy, keep it down! The rest of us actually enjoy these traditions, even though there are no religious ties to them. So, as they say, WHEN IN ROME...

Getting back to our traditions, we celebrated Diwali (festival of lights) by going to the Gurdwara (Sikh temple) and lighting some candles. This is one of the few Indian customs I've been able to maintain with the kids year after year and I think they actually look forward to it now. I got very emotional driving to the place because the last time we were able to go as a family was just before we left for Durham. We asked for God's blessing and all did a special prayer for Jaden to successfully make it through transplant and be free of CGD.

Even sitting in the prayer room was emotional. When I went to "matha tek" (bow in prayer) with the kids all around me, I just counted my blessings and thanked God for getting us to this point. We have come a long way and the journey is no where near over. I just wanted the strength to keep pushing through and wanted Jaden to be back to his "normal" routine as soon as possible. I also thanked God for our newest little addition, who was completely oblivious to everything going on around her and proceeded to scream and dance in circles to the rhythm of the kirtan (devotional hymns). She also ran back and forth screaming "DADDY!" between where Guri was sitting in the "male" side of the room and where I was sitting. We could only sit and listen for about 30 minutes before the room started to fill up and we had to leave. Diwali is a big deal and the crowds can swell to hundreds, so I knew we had to get Jaden out of there before things got too crazy. I prayed that we could all return next year, during "peak time" in the evening and really enjoy the festivities with our family.

I hope Jaden has the opportunity to enjoy many more holidays and family gatherings. I hope he can soon return to school and his "normal" activities. There is so much I want to do with him, with all of us as a family. I can't wait until Jaden is able to participate fully. I know that day is coming!

A Flurry of Firsts

2010-08-29T11:15:00.000-07:00

Enjoying cupcakes in the quad at the Back to School picnic

Goofing off with his buddy Thomas

Sneak peak into his classroom with Mrs. Johns

First day of school--backyard photos

Water play date with his buddy Nicholas

Mugging next to the tile he made for his school's 10th anniversary

First music lesson: Jaden chose drums!

Water gun fight in Gunu bhua's pool!

Finally in LA for the first time (with his cousins Saira and Armaan)

Road trip with Devin and Daddy: LA, here he comes!

It seems that so much has happened on both the medical and emotional fronts in the short time since I last posted. From a medical standpoint, Jaden continues to improve. He looks wonderful and he's able to do more and more each day. However, I'm incredibly frustrated with the medical teams. At our last clinic visit (which incidentally has been reduced to once a month now!), I questioned Dr. Garcia about the lung issues. After a lengthy discussion, it seemed that CHO and Duke were still at odds about Jaden's diagnosis. I was so infuriated. CHO has ALL of Jaden's scans and records pre-transplant and now post-transplant from Duke. Are you telling me you can't review the images pre-transplant and tell me if things are better or worse from these images? Dr. Garcia explained that it wasn't so simple. He said some of the scarring on Jaden's lungs from his pre-transplant pneumonias could develop into what looks like B.O. on his current images. It is very difficult to tell. Dr. Garcia stressed that since the prophylaxis was so simple (1/2 tab of Azithromycin daily), it was better to err on the side of caution. I still disagreed. With the number of meds Jaden is on, he does not need to add unnecessary dosing, especially when the plan seems to be "indefinitely"! Of course after a few such choice comments and comparisons to Duke's diagnosis, I received a very curt "Jaden is in OUR care now and we need to do what our team feels is best." WHY I OTTA $#%%&#*@.....but, no--I actually refrained this time and tried to use tact (something I have not been concerned much about lately).

Dr. Garcia also reviewed Jaden's one year studies from Duke with me and basically concluded that things were looking good. All organs were functioning normally and his electrolytes were also normal. Jaden's chimerism (the last ones from CHO) also were the best they've ever been. His whole blood count was at 90%, his lymphocytes (CD3) were at 60% (consistently improving since we started the immunosuppressants) and his granulocytes (CD 33) were at 100% now! He was very pleased with these results and said he would check chimerism every month for the next 3 months. If the counts remained stable, we could start the gradual weaning of the immunosuppressants. However, if the counts continued to rise, we would hold on the current dosing. Our goal, after all, was to be at 100% in all three areas.

After the clinic visit, Jaden also had an evaluation with Dr. Aguilera, a physical therapist at CHO. I wanted to know if Jaden truly needed physical therapy, whether it was more lung issues, or whether he just needed to rebuild his muscles over time by playing. Dr. Aguilera performed some simple tests and told me Jaden did not need to start physical therapy. However, she did assess that his core was very weak and his muscles were stronger on the right than his left (which was the reverse of what should be the case if he is truly left-handed). She noticed that his thumbs were fairly strong--I attributed that to all the hours on his D.S.! She mentioned that the best thing for him was Martial Arts. Other activities like yoga, gymnastics, walking/running, dance, and activities requiring balance were also good for him. What? Wait a minute...Jaden has been doing Tae Kwon Do for several years now. He hasn't been able to return to class yet and feels horrible every time he watches Devin at his TKD class. All I've heard is "If I hadn't stopped MY classes, I'd be a red belt by now!". Since Jaden can't be in a group setting just yet, I was actually contemplating private classes with his instructor, but thought the cost would be prohibitive. I asked Dr. Aguilera if she would document her recommendations in a letter that I could use with the insurance company, or even through the transplant fund, so I could see if I could get Jaden back to his martial arts training. Dr. Aguilera readily agreed and I felt a little better about things.

Our next appointment was with an endocrinologist. The BMT team felt that we need to look at weaning Jaden off of the hydrocortisone and for that we needed to consult a specialist. We had our initial appointment last week with Dr. Ahmad (also part of the CHO network of medical professionals). Once again, I was completely perplexed by how communication is NOT transferred within this organization. I had to review Jaden's case yet again and let Dr. Ahmad know why we were there. He didn't even have enough information to formulate a treatment plan, but told us that he would check with the bmt team at CHO to see whether Jaden needed to be on the steroid for any reason. In the meantime, he wanted to start by cutting Jaden's hydrocortisone dose in half. I asked how long it would take to wean him off completely and Dr. Ahmad told me it normally takes a month or so, but because of Jaden's situation, it may take several months. This seemed like a drop in the bucket considering all Jaden's been through. We then discussed Jaden's growth. Again, Dr. Ahmad had no data, so he did a height and weight measurement on both me and Jaden (luckily, I was able to get away with height only!). The doctor said he would track Jaden's growth and ordered a bone scan to check for Jaden's "bone age". This was basically an x-ray of Jaden's left hand, but it would allow Dr. Ahmad to know if Jaden's growth was on track so far (i.e. do his bones look like those of a 7 yr old?). Dr. Ahmad handed me the order for Jaden's x-ray and told me that he would email me once he heard back from CHO.

Well, a few days later, I got word from Dr. Ahmad that Jaden's bmt team had given their go-ahead to begin the wean. What caught me by surprise was the speed of the wean based on Dr. Ahmad's plan. Jaden was to decrease his dose, nearly in half each time, week to week until he was completely off of hydrocortisone. This was all to happen over the next 3 weeks and he wanted a cortisol stem test by mid September to see how Jaden's body was doing. Dr. Ahmad had warned me that should Jaden exhibit any symptoms such as extreme fatigue, diarrhea, vomiting, or a fever of 100.4, I was to give Jaden a stress dose of the hydrocortisone and call the team immediately. We would then slow down the wean (or essentially start again).

As excited as I was to have Jaden off steroids completely by mid-September, I just didn't feel right about weaning so quickly, especially considering the length of time Jaden had been on steroids over the past few years and all that his body had endured. Luckily, we have many medical professionals in the family, so of course I got in touch with one of our cousins who happens to be an endocrinologist in LA. He reviewed the plan and agreed that the timing seemed to be too soon. He recommended that given Jaden's history, we should wean him gradually--taking the dosing down a notch every 4-6 weeks. Once I got confirmation of this, I immediately responded to Dr. Ahmad's email, asking him to slow the wean down. I can only imagine the doctor's shock when he reads it--I'm not sure if he's used to patients dictating their treatment plan, but he obviously hasn't gotten to know me yet ;-)

Now on to the social aspects of healing. Jaden is still incredibly lonely. As much as I am trying to get him involved in things, he is ultimately lacking what he craves the most--the company of other children his age. To get him out of the house (and therefore the TV/video game cycle), I've enrolled him in his first music lessons. Jaden chose drums and seems to be enjoying the experience. I had the conversation with his instructor about wiping the drumsticks down and making me aware of any students' illnesses. Mark assured me that as a working professional (he plays with a band in the evening), he cannot afford to be sick either so he is very stringent about the "stay home if you don't feel well" rule.

School started this week and I could tell Jaden really wanted to be with his class. As is tradition in our family, Guri took loads of "first day of school" photos. However, Jaden kept whispering "it's not MY first day of school. I can't even GO to school yet..." It broke my heart. Luckily, Jaden's 2nd grade teacher is the same one Devin had, and she is outstanding. Even better is the fact that there are several kids from Jaden's kindergarten class in his 2nd grade class, so the transition back to the classroom (hopefully by spring) should be relatively easy.

Every year on the Friday before school begins, the school hosts a "welcome back" event in the quad. This time, I decided to take both boys. I figured it was outdoors so it shouldn't be too bad and it would give Jaden the opportunity to meet his teacher and hopefully run into a few friends along the way. I probably should have cleared it with the bmt team first, but at this point, I have learned it's better to ask for forgiveness than to ask for approval ;-) Yes, ideally, we can keep Jaden in a bubble until he's completely weaned off all immunosuppressants and that's the best approach to ensure he doesn't get any infections, but it's not reality for a 7 year old boy who's been in captivity for nearly 18 months. So, I give him more leeway than the medical team would. I let him run around outside without his mask. I let him have play dates, without his mask, and I let him have the occasional piece of cake from Starbucks (as long as there's no cream on it that could spoil on the shelf).

You should have seen the look on Jaden's face as he entered the school campus. His eyes lit up, he was grinning from ear to ear and he let out this squeal of delight as soon as he saw his buddy Thomas. We even found the tile he had decorated for the school's 10th anniversary project on the steps of the school. Jaden and Thomas ran all over campus and then I introduced him to Mrs. Johns, who was as wonderful as ever. I warned her that Jaden's "kinder posse" was in her class and that she would need to keep an eye on them! She was thrilled and shook each of their hands. I asked if the classroom was open and of course it wasn't, but Mrs. Johns had the key and was more than willing to let Jaden take a peak.

Jaden was so thrilled to be inside a "real classroom". His last experience was in kindergarten, where they didn't have individual "big kid" desks, so he just walked around and took it all in. Mrs. Johns was kind enough to indulge us in a few photos. I wanted Jaden to have the memories of his first day of school, even though he wouldn't actually get to experience it until next year.

Then Mrs. Johns and I went to work thinking of creative ways to keep Jaden engaged with his classmates. I suggested Skype and she mentioned podcasts. She said she would work with the computer teacher to get set up. I ended up going to Back to School night and when I saw the break-out sessions listed on the class schedule, I had a brilliant idea (well, I guess all my ideas are brilliant, so I should just say I had "another idea" ) ;-). I wondered if Jaden's medical team would allow him to attend any of these sessions. There was Library time on Mondays, Computer Lab on Tuesdays, PE on Wednesdays and Fridays....or how about Music on Wednesdays? I had to get Jaden into the classroom, however brief the time period may be. There were also two field trips this year: one to a local grocery store and the other to a wildlife museum. I had already gotten approval for Jaden to attend the field trips, but knew that the second one was probably out of the question at this time.

I called up Nurse Sherrie and told her about my dilemma. Jaden really needed face time with his peers. He needed to feel normal again and I had to do whatever it took to give him that. I wasn't ready to compromise his health or delay his progress, so I needed some guidance. I reviewed all the options with Sherrie and she went over pros/cons of each. Sherrie recommended that we try ONE activity a week first to see how Jaden did. Of course, Mrs. Johns would need to call me ahead of time to let me know if there were any sick kids in class that day (especially if a rash or chicken pox was involved). Sherrie suggested we try computers, but I felt that Jaden looked at a screen for hours on end already and it was the interaction with kids he really missed. Sherrie then suggested Music. Like everything else, there were restrictions. Jaden should not arrive or leave the classroom with a group of children, he needed to sit at the back of or in front of the group (i.e. not in the middle of a group of kids), he needed to wear gloves to handle any instruments and then wash his hands immediately afterwards, and he had to wear his mask in the classroom. These were tough guidelines and I knew Jaden would feel self-conscious with the rules, especially having to wear the mask and gloves in front of his classmates, but I hoped the ability to get out of the house and into his classroom outweighed the restrictions. We then discussed the field trips and Sherrie confirmed that the wildlife museum was out of the questions. She was familiar with it and said that the animals were often taken out of cages and handled by the kids. Sherrie suggested I do something special with Jaden and a few friends that weekend to compensate for the missed field trip.

With the approval from Jaden's medical team, I quickly sent off an email to Mrs. Johns reviewing our plan of action. I was so excited that Jaden would be able to be with his classmates, even though it was only a half hour a week. I was equally anxious about the experience. Was I exposing Jaden unnecessarily to other kids, and therefore more germs? Was it too soon? Was I pushing my luck? Jaden was doing so well, I really didn't want to impact his recovery, yet I felt he really needed to get out with friends. What if Jaden got an infection and was then quarantined even further? Would I forgive myself? Would Jaden forgive me? Is it better to just wait until he's able to attend class regularly, even though that could be months away? Sherrie had also mentioned that Jaden would be pretty tired when he starts going back to school. He hasn't had to focus for long periods of time, certainly not a full day, for nearly a year and half. She even said we may eventually have to consider an independent study program until Jaden is MENTALLY ready to resume school full time. More things to stress about....but knowing the fighter that Jaden is and how determined he is to get back into the classroom, I'm sure he'll pull through just fine.

As I said, I've been trying to squeak through as many priveleges for Jaden as possible. He was so upset he couldn't go to the family wedding in July, especially since Devin came back with stories of all the fun he had with his cousins. I had promised Jaden I would ask if he could go down and see his cousins just for a weekend. Luckily, I got the green light and Jaden enjoyed his first trip back to LA with Devin and Guri. Initially, he threatened that he didn't want anyone (ie his siblings) coming with him. I think he wanted to bask in the attention all by himself. Ultimately Devin, being the smooth talker that he is, convinced Jaden that he needed a body guard and personal assistant and so was allowed to tag along.

Jaden had the time of his life in LA. He saw his grandparents and told me how different everything in the house looked. He also visited with Gunu bhua and his cousins. I heard he wanted to be there from morning to night every day and Guri had to drag him back home at the end of the day. I swear he and Gunu bhua have a special bond. He even pushed his limits, dunking himself once in the family pool, even though I had given strict guidelines that "no oriface be submerged in the water!". He had water gun fights, went to a pottery studio, ate and drank and generally got to forget about the doctors and medical procedures for a few days. In short, he was in heaven.

Seeing how elated he was, I kept asking for more. Could he go to LA for Thanksgiving break? Would he be able to attend Thanksgiving dinner? I was waiting for the "NO", so I was shocked to hear Dr. Garcia say he had no issues with it. I was floored. Really? But, my husband has a very large family...there will be lots of people there...everyone will be in close quarters???? Dr. Garcia told me that in this situation, all of those people were family and therefore knew about Jaden's condition. I'm sure they will all wash their hands and tell you if they have the slightest cold. Where the bmt team gets concerned is when Jaden is in a crowd of people where we can't control exposure. We don't know if anyone is sick and don't know if they have been exposed to others that may have been sick. I totally get this and it makes me so happy that most of what Jaden wants to do, he will be able to (as far as visits with family and close friends). This also gives me the green light for all the holiday get togethers! I'm so thankful Jaden can participate. He's been dying to get out of the house. He doesn't want people over as much as he wants TO GO to their place, any place, just not THIS place! I have to remind him we can't just invite ourselves over to everyone's home, to which Jaden responds "why not?". Ahh, the innocence of youth... can't wait to start the meet and greet this season!

Can't we all just get along?

2010-07-29T16:43:00.000-07:00

Enjoying his first Jamba Juice post-transplant

I've been in a funk after our last visit with Dr. Hardy, which incidentally was the week after we returned from Duke. She was anxious to hear Dr. Prasad's take on Jaden's lung issues but wasn't quite in agreement when I reiterated what Dr. Prasad had made very clear to me: HE DOES NOT HAVE BRONCHIOLITIS OBLITERANS!!!!

Dr. Hardy was shocked when I told her that the PFTs done at Duke showed a 40% improvement after the Albuterol treatment, which essentially shows that the breathing treatments do help. Dr. Prasad went as far as to say that Jaden needed to be on them regularly for the foreseeable future. Dr. Hardy tried to explain that her testing at CHO only showed a 3% improvement after Albuterol, so in essence not much changes after the breathing treatments. I suggested that maybe the methodology at Duke differed or maybe the calibration was slightly off at one place or the other.

Dr. Hardy then went to listen to Jaden's lungs. She told me that things sounded WORSE. She heard the crackling in both lungs and all over on the right side (not just at the lower part of the lung). I was getting really stressed. What do you mean that things are worse? Dr. Prasad had said that Jaden had an active infection and was treating it with a stronger dose of the Azithromycin. Did we know if it was a bacterial or viral infection? Maybe the Azithro wasn't the right antibiotic and wasn't treating the infection? A thousand thoughts went through my mind, which incidentally I was blurting out to Dr. Hardy probably in a rapid-fire fashion.

Dr. Hardy decided she wanted yet another PFT at CHO the following week so she herself could recheck her findings. ANOTHER PFT???? Here we go again...

Jaden also had a few sniffles that morning and Dr. Hardy wanted to have an RVP (Respiratory Viral Panel, aka RVB or Respiratory Viral Battery at Duke) done immediately. She called Sherrie at the Day Hospital, but there were no appointments until later in the day. So, we were scheduled to head over to CHO right from the pulmonary appointment.

I called my sitter to check on Devin and Gia and told her about the change of plans. Then Jaden and I did a quick drive-through lunch, which you've probably guessed is the reason for my expanding waist line, and headed to Oakland.

Nurse Sherrie came in to do the test, but told me judging by his appearance, she didn't expect anything to come back positive. She also listened to Jaden's lungs and told me she heard a little more crackling but it was nothing that she was concerned about. Sherrie told me she wanted Jaden back at the Day Hospital on Monday morning so she could hear his lungs again. The PFTs were already scheduled for Wednesday.

Well the weekend came and went without any further complications for Jaden. We went to the Day Hospital last Monday and Dr. Bindu was excited to hear Dr. Prasad's opinion on Jaden's progress. I gave her the low down and once again told her about the "NO GVH" comment and then went on to repeat the three areas of concern with Jaden's lungs: interstitial pneumonitis from his pre-transplant infections, an active lung infection which was being treated by a higher dose of Azithro, and asthma. I went as far as to tell her that GVH of the lung was nearly impossible with identical sib match and this far out from transplant. Dr. Bindu seemed to concur with the last statement.

She listened to Jaden's lungs and said she didn't hear much difference from the last time she heard them (remember this was a little while ago since the group has several Attendings and we don't see the same one each time). Great. So, was this his "baseline crackling" that Dr. Prasad always spoke about?

Dr. Bindu then asked about Jaden's medications and I stressed that Dr. Prasad had upped Jaden's antibiotic and told me to STOP giving it to him after 10 days. She looked perplexed and asked again if Dr. Prasad said to stop completely. Yes , that's exactly what he said! She repeated this to the nurse practitioner and I could tell they weren't convinced. I think they were still thinking about the BO (bronchiolitis obliterans, not the B.O. from poor hygiene).

At this point, I was really starting to lose it. I felt like I was getting a different opinion from each of the medical professionals Jaden had seen. I told Dr. Bindu that the CHO BMT Team had to get on the same page with the Duke BMT Team and also with Dr. Hardy, Jaden's pulmonologist. I urged her to set up a conference call with all the parties and clear things up once and for all. Dr. Bindu agreed and said she'd set something up as soon as Dr. Walters returned from vacation. She could tell I was visibly upset and assured me things would get cleared up quickly. I expressed my dismay with the varied prognosis (asthma is on the other end of the spectrum from GVH!) and then told her I was looking for things to be resolved and a unified diagnosis and treatment plan to be presented to me from the team.

I also secretly shot off an email to Dr. Prasad and Dr. Priti giving them a heads up and encouraging them to participate in this call ASAP. I then made it clear that I wanted resolution from all parties immediately. As usual, Dr. Prasad responded promptly with a short "no problem".

Yesterday, I took Jaden in for his PFTs. It was one of the quickest tests we had ever had. I guess Dr. Hardy just wanted the spirometry test, before and after the Albuterol. We were literally in and out in 30 minutes. Unheard of! The technician told me things looked great and he didn't see much improvement after the Albuterol. He also printed out the results for me in case Dr. Hardy didn't receive them in time for our next appointment, which was next week.

Now on the personal front, Jaden has been doing so well. He's starting to really get back into the swing of things. I had asked Dr. Bindu in clinic about what the immune function test results meant and if we could ease up on some restrictions for Jaden. I knew he still couldn't go to school or be in crowds since he was on immunosuppressants, but what about the food restrictions? Could we bend a little on one or two of them? Jaden wanted to drink Jamba Juice, eat pastries right from the shelves from Starbucks, eat ice cream from the open containers at Baskin Robbins, have Slurpies....the list went on and on. I told Dr. Bindu that these were minor things to us, but each item meant getting back a little sense of normalcy for Jaden. At the same time, I wasn't going to risk an infection over a scoop of ice cream.

Dr. Bindu thought about the list for a minute and said she wouldn't know for sure until the team reviewed Jaden's immune reconstitution results. She then glanced at Jaden and told him he could have Jamba Juice. This probably posed the least danger since everything was frozen. However, she stressed that Jaden could still not have any berries and that we should have them clean out the blenders before we get the drinks. Jaden couldn't contain his excitement after hearing the news. He made me promise to take him to Jamba Juice the same day!

I was hoping to hear more good news after they team convened to discuss the results from Jaden's one year testing, but for now we'd take what we could get. It was great to see Jaden so excited.

Whirlwind in Durham: One Year Testing

2010-07-16T16:43:00.000-07:00

Making himself at home at Oakland Airport

Thank goodness for DS...kept him busy throughout the flight

Chicken nuggets again? REALLY, Jaden?

Molten Chocolate Cake at Chili's--a family favorite!

Kickin' back in the hotel room

PFTs once again...Jaden is such the PRO now

Dr. Prasad and Dr. Preeti were so impressed with how well Jaden was doing!

Winding down at Kanki's: is there life beyond chicken nuggets?

Jaden looks so much like himself again!

Outside Kanki's: Jaden was fascinated by the "lava fountain"

I can't believe I'm already writing about our return to Duke for Jaden's one year post-transplant studies. Originally I had anticipated that we would be here a week, with several days of testing followed by a discussion with Dr. Prasad. Imagine my surprise when I received the finalized agenda from Ashley and it was only ONE day!

Since Jaden was still not allowed to travel on commercial carriers (he remains on immune suppressants), I had contacted Corporate Angels several weeks ago to arrange for a trip back to North Carolina on one of their corporate jets. They were the ones that coordinated our flight back from Duke in April on a Heinz jet.

It was a week before we were to leave and I still didn't have a confirmed flight. It appeared no one was traveling from the San Francisco Bay Area to Durham. When the company opened up their routing to over 100 miles, one flight did show up. It would leave Oakland on July 10 but fly into Charlotte, NC (about 145 miles, or nearly 3 hours from Durham). I thought about flying cross country and then putting Jaden in a car for a long road trip right after and it just didn't seem right. I waited and waited for other options to become available, but none did. I would have taken this flight as a last resort, but Corporate Angles had no known return flight for us. Being the week before our appointment in Durham, I had to make a decision and ultimately contacted Dr. Prasad and explained our situation. Jaden was finally given the green light to travel by commercial airlines, given the circumstances, but he had to wear his "duck mask" the entire time--from airport check in at OAK to rental car pick up at RDU. Guri's parents even offered us their mileage reward tickets, but there were no seats available this late in the game. With no other option, I booked a last minute fare on Southwest and packed our bags for our quick trip back east.

Jaden was elated to be at an airport after more than a year. He was thrilled to see the planes up close, see the people in the gate area, and peruse the gift shops. I, on the other hand, was a nervous wreck. I had my box of Lysol wipes with me and proceeded to wipe down everything on the plane before Jaden sat down. Imagine that I have 4 carry ons (one small suitcase, my laptop, my camera, and a backpack with Jaden's meds and "in-flight entertainment"!) plus Jaden to manage. I'm pushing my way through the people at the gate, explaining my situation, getting Jaden on the plane, telling him not to touch anything until I wipe it, meanwhile I'm blocking the people behind me. In short, if you're a frequent flyer, we were your worst nightmare!

We arrived in Durham on Wednesday evening to a blazing hot and muggy climate. I forgot how horrible the weather can be since Jaden was inpatient on 5200 through the summer (and into the Fall!) last year. To make matters worse, the air conditioning in our rental car kept going in and out. Jaden and I were literally dripping in sweat by the time we made it to the hotel! I wanted to get Jaden some dinner and get him to bed since we started testing the next morning. Of course things never go the way I plan and he was up late Wednesday night. I think with the damp and steamy weather, not to mention the time zone change, we both had a tough time falling asleep.

With my cell phone alarm blaring, followed by a wake-up call from the hotel as back-up, I tumbled out of bed and got ready for the day. I then got Jaden going. We started with a 9am visit to the bone marrow clinic of Children's Health Center (CHC). To me it felt as though we'd never left. I remembered the streets, the way to the clinic, the nearest grocery store, the important restaurants (Chili's, in our case). I saw many familiar faces smiling at us and welcoming us back. While we waited in the Fish Tank room, Melissa and Rocco (our dear friends from The Lofts) poked their heads in. I was so happy to see Rocco looking so well and congratulated Melissa on their go-home date of Saturday. Rocco, a fellow CGD patient, had done incredibly well through transplant and they were headed back home at just 4.5 months post transplant. Of course everyone had their little issues, but for the most part, he was faring wonderfully.

After the brief visit with Melissa, one of the nurses came to get Jaden for vitals. We then went into an exam room where Nurse Amanda greeted us. We caught up on the past few months and then reviewed the myriad labs that needed to be drawn. I wanted to ensure that chimerism, NBT (CGD test), and a few others were scheduled and she confirmed that they were. Jaden was in a panic about his port being accessed again. I had to calm him down and remind him that the nurses at Duke are highly skilled and it shouldn't hurt much, if at all. As usual, Jaden gets himself so worked up about the needle insertion into his port (even though it actually saves him from getting an IV), that he starts crying immediately upon seeing the needle. Once things are done, he always mentions that it wasn't as bad as he anticipated. He even said that Amanda and the Duke nurses were best!

With the labs drawn, we went on to get Jaden's echocardiogram, chest x-ray, pulmonary function testing, and his follow-up vision testing. Most of the results would be discussed with Dr. Prasad at the end of the afternoon, but Duke Eye Center was a separate entity. Dr. Young reviewed Jaden's eye test with me. Overall everything looked great. She did mention that the vision in one eye was minimally less than the other and suggested that Jaden would need glasses at some point. Of course my first question was "Is this due to the transplant?" and of course I was told it was not. It's just the normal growth pattern for him. She asked if anyone in the family wore glasses. Well, um...yes. I got glasses in seventh grade. I shuddered at the memory of being told after an in-school eye exam that I would need glasses. Geekish kid with long pigtails that I was at that point, the glasses would just add to my misery....I quickly wiped the vision away and reassured Jaden that whenever he needed glasses I would let him pick them out. Jaden was visibly upset and the first thing he said was "Devin's going to make fun of me!". No, Jaden, he won't. We'll get you some cool ones like Joe Jonas. What? Those are UGLY! Okay, well you can pick whatever you'd like, but it's not even an issue yet!

With a quick thank-you to Dr. Young, we hurried back to CHC for our meeting with Dr. Prasad. We hadn't been in the Fish Tank room very long when Ashley came to get us. She said that Dr. Prasad and Dr. Preeti were anxiously waiting to see Jaden. As we turned the corner into the hallway, we saw both of them standing with big grins on their faces. "Where's my hug?" Dr. Prasad asked Jaden. Jaden sheepishly complied. Dr. Prasad then opened his arms to me and I gave him a great big hug. I also hugged Preeti and we headed over to an exam room. "He looks great!" was the first comment Dr. Prasad uttered. "Doesn't he?", I beamed.

"Okay, before you go crazy, let me tell you Jaden DOES NOT have GVH of the lungs!" Dr. Prasad blurted out. I felt a huge wave of relief roll over me. This had been the biggest issue over the past few weeks at Children's Oakland. Nurse Lizzie was convinced that Jaden was showing "classic signs" of Graft vs. Host Disease in his lungs (apparently in listening to his lungs and in the chest CT that was recently ordered). She even told me that Dr. Walters concurred after reviewing the CT and that changes to his regimen would be made immediately. The team had put him back on his breathing treatments and added Azithromycin to his med list. I was in total shock at the time. I couldn't believe that Jaden could get GVHD this late in the game. I was sick with worry and really needed to hear it straight from Dr. Prasad, who I felt had know Jaden the longest and understood his medical condition the best.

What made things even more interesting was that Dr. Hardy, Jaden's pulmonologist back home, had called me last Saturday asking why the breathing treatments were restarted. While I understood Lizzie to say that she had consulted with Dr. Hardy prior to the change, Dr. Hardy clarified that she had merely received an email letting her know of the change. She was in clinic in Reno and did not access her email until that day. At this point, I was livid. Just as I was letting my guard down and entrusting Jaden's care to CHO, I was shown that I still have to closely manage every aspect of his care.

Dr. Hardy told me to stop everything Jaden was taking as far as pulmonary issues were concerned and immediately scheduled him for follow-up pulmonary function testing the following Monday. After all, her plan was to have him off the medications for a month and then check to see whether things deteriorated or stayed the same. Luckily, I had only given Jaden 3 breathing treatments and one dose of the antibiotic by the time she called.

After the PFTs at CHO on Monday, Dr. Hardy explained that the breathing treatments did seem to help, although minimally, so we could continue with them. Luckily, she changed the albuterol to puffs and the pulmicort to Advair, so administering them would not take up half of our mornings. I had asked the tech to print out all copies of the results and I also had Dr. Hardy print out her chart notes so I could ensure Duke was up to speed.

I then marched over to the Day Hospital where I had told Lizzie I wanted to speak about the incident. I was livid that changes were made without Dr. Hardy's buy-in. I was even more disturbed that I was now being told CHO did not have all the films from Duke and therefore could not compare the latest CT to prior ones to measure changes. WHAT???? So how about YOU actually pick up the phone and call your colleagues at Duke and ask to have these sent over? We've been home for nearly 3 months and you're just NOW noticing that you don't have the films? How can you properly assess Jaden's situation and formulate and accurate treatment plan without critical pieces of data? My dukes went up and I was once again ready for battle. This situation was all too familiar to me and I wasn't about to let operational inefficiencies get in the way of getting the best possible care for my son. I told Lizzie my expectation was that the two centers would coordinate Jaden's care and ensure the transition was seamless. I did not want to get calls or emails from either party asking me to facilitate getting documents for them.

Getting back to Durham and Dr. Prasad. He assured me that Jaden did not have GVH. He went so far as to say that it was nearly impossible to have GVH of the lung with an identical matched sibling transplant. I was overjoyed to hear this. Dr. Prasad knew me so well--he sensed I'd be panicking and going non-linear and was very direct with me. I really value his input and wished we lived closer to Durham so Jaden's follow-up care could have continued with Dr. Prasad. As I reiterated what I had heard, Dr. Prasad spelled it out for me. Jaden had 3 things going on with his lungs: he did have interstitial pneumonitis from scarring prior to transplant, he did have a small lung infection that would be treated with the antibiotic (which incidentally he doubled the dose of for Jaden), and Jaden had asthma. He DID NOT have bronchiolitis obliterans as was repeatedly told to me by Nurse Lizzie. Dr. Prasad explained that with bronchiolitis obliterans the airway is constricted and hardened and nothing really can change that. In Jaden's case, the PFTs clearly showed that the breathing treatments helped him--as much as 40% improvement in one area! Dr. Prasad continued on to tell me that Jaden would probably need the puffs for quite a while and when I asked if Jaden would ever outgrow the asthma, Dr. Prasad felt there was a good chance he would.

Dr. Prasad then reviewed the PFTs with me and circled the number 80% on one test. He said he was THRILLED to see this. With a DLCO of 56% back in April, Jaden had shown drastic improvement in this area.

Dr. Prasad moved through the rest of the results, using his black marker to highlight areas of improvement as he explained that Jaden's counts were ALL within normal range now. We then went on to the chest x-ray, which also indicated that there was some sort of infection in the "right middle and right lower" lobes. Dr. Prasad already had discussed this with me, so we went on to the echocardiogram. The difference in this test result was the appearance of a thicker lining of the heart. The exact medical terms elude me ("some thickening/left ventricular hypertrophy"?), but just as my eyebrows were raised in careful concern, Dr. Prasad mentioned that it was more than likely due to the long-term use of one of the immunosuppressants, specifically Tacrolimus. He said things should revert back once Jaden is off this medication.

Once the results were reviewed, Dr. Prasad went on to remind me that Children's Oakland should give Jaden Synagis through flu season to prevent RSV (respiratory syncytial virus). He also said to ensure everyone in contact with Jaden had their flu shots this season. This is a no brainer for us since we've been doing it to protect Jaden for years. Dr. Prasad mentioned that CHO should also review whether Jaden is ready to receive his first flu vaccine this year. Since we're starting from scratch post-transplant, Jaden will have to be re-vaccinated once his body is able to withstand them.

So, it looks like Jaden's lungs are still the primary area of concern. I asked when the immunosuppressants could be weaned. Dr. Walters' team had given me a pretty evasive answer (no real number/want stability/yada yada...). Dr. Prasad made it very clear that ideally we want 100% of Jaden's cells to be Gia's (donor) on all fronts. He's looking for the CD3 (lymphocytes) to be between 80%-100% before we start the wean. Jaden's current last CD3 count was at 46%.

This led right into my next question. When could Jaden could go back to school? Should I assume that he's out for another year? Dr. Prasad said to plan on at least 6 months for now and then we could re-assess the situation. I asked if Jaden could go to LA if we drove and he said yes. I casually mentioned that there could be no swimming for Jaden, even in a family pool, because of germs (knowing full well that Dr. Prasad had okay'd Jaden to swim only in a private, family-owned pool). I also mentioned that CHO wanted Jaden to wear his "duck mask" at all times when leaving the house. I told Dr. Prasad honestly that if we were outside and not with a crowd, I didn't push the issue with Jaden. Dr. Prasad just grinned, shrugged, and mumbled "quality of life...". If you're getting the gist of my questions, I really wanted to see if there would be discrepancies between Dr. Walters' team and Dr. Prasad's team on certain issues. When I brought up the differences in a childish "Dr. Walter's/ the nurse practitioner said..." whine, Dr. Prasad quickly reminded me that I had promised to work within Dr. Walter's guidelines when we began the follow-up care at CHO. I know, I know....DAMN, I wish we lived closer to Duke.

After hearing lots of politically correct answers from Dr. Prasad (even though some of his body language told me exactly where he stood on certain issues), I decided to give it a rest and move on. Dr. Prasad ended the visit by reiterating how good Jaden looked. He said he'd see us back in 6 months, or early January 2011.

With our official visit complete, I really wanted to go to 5200 and see if any of Jaden's primary team was still around. I knew many had moved on or gone back to school. Jaden wanted nothing to do with it. He just wanted to go home. I'm hoping one day he will realize how invaluable these people have been to his healing and recovery. In essence, they helped him get a new, healthy life and I want him to have the same sense of gratitude and awe (for lack of a better term) I feel when I come back to Durham. I think right now he just associates Duke with a very long hospitalization, confinement, and pain. Hopefully this will change in the near future.

We headed back towards the hotel to rest for a little bit before heading out for dinner. Jaden wanted chicken nuggets again but I was determined to open up his world to life beyond chicken nuggets. I forced him to go to Kanki's across the street from our hotel. This is like a Benihana back home where the chef cooks right in front of you. I had taken Devin several times and he LOVED the place. Jaden was very hesitant but finally agreed. With some prodding, he ordered the chicken and rice, but was more amused by the chef's antics than the food itself. I had to force him to eat just his chicken and he told me several times he wished he'd ordered the chicken nuggets from the kids menu! So much for expanding your horizons!

We wrapped up our time in Durham and headed back out first thing the next morning, just as quickly as we had whizzed into town. It was Friday after all and Devin was going to be starting his second baseball tournament on Saturday morning. We couldn't miss that! Life as we knew it in San Ramon was waiting for us and we were needed back home.

Happy New Birthday, Jaden!!!

2010-07-10T00:06:00.001-07:00

It's been over a month since I last posted. It's amazing how life just gets so hectic that there really is no time to take even a few minutes to put my thoughts down. As I started this post, I first wanted to count the number of days since transplant. However, this being the ONE YEAR mark from Jaden's stem cell transplant date, I think we have officially graduated to months or years post transplant, not just days.

Yes, today (okay, technically YESTERDAY July 9, since I'm blogging in the wee hours of Saturday morning) marks the ONE YEAR anniversary of Jaden's transplant. I try and think back to what we were doing, what I was feeling a year ago today. So much of it is a blur at this point, but other moments are so vivid it's as if they just happened yesterday. I recall the day itself--the anxiety, the elation, the prayers, the tears of joy, the tears of fear and dread. Who knew at that point what the coming days or weeks or months would hold? I remember it being so anti-climactic. This is it? A 30 minute cord blood transfusion? This IS transplant?

It was the culmination of years, and I do mean YEARS of planning, searching, hoping. Is transplant the right thing to do? Where is the best place to do it? How do we put Jaden in a position to garner the best possible outcome? I had heard that sibling matches were best. My unending research had shown me that Children's Texas or Duke (or even Cincinnati Children's) were the best places to be for CGD. I had read blog after blog, spoken to families going through transplant, consulted the experts in his disease, seen the best, and read about the worst outcomes. I knew I had to do something. I couldn't imagine Jaden going through life waiting for the next infection or being limited by what he could do or where he could go. When the doctors diagnosed him at 23 months, I remember hearing the words "it used to be a death sentence, but today we have kids with CGD that are living to be 40! They are having families and leading normal lives...". Forty??? Are you kidding me? Of course, this was the best case and didn't take into account the daily medications, the injections, the possibility of infections, hospitalizations, doctors' visits, etc. I couldn't see Jaden doing this. What kind of life would this be for a child...or a young adult...or a middle aged man for that matter?

These were the thoughts that led me to find a solution. This is what lead me ultimately to Duke. I remember the wonder and amazement of the 5200 team when Jaden seemed to sail through chemo and the transplant itself, almost unscathed. I remember hearing Nurse Laura say "Jaden, you're making this look too easy!". I remember the complete disbelief when the team talked about discharge at little over one month post transplant. I remember taking everything off the walls, being ultra-efficient by sending everything back to the apartment in order to minimize what we took out on discharge day. I was up until the wee hours making sure everything was packed up and ready. The camera was loaded and ready for Jaden's big Confetti Parade.

Then it happened...the first signs of the vile and nasty beast that is transplant. His first side effect: Polyoma. I remember the bewilderment of seeing the sight of blood as he urinated. I remember the shrieks that came with the pain. Then the worst news...discharge would be postponed until the polyoma was under control. I remember seeing the look on Jaden's face when I had to tell him we were not going to the apartment just yet. We just need to get through this, Jaden. We'll be back at the apartment in a few days...or so we thought.

The days turned to weeks and the weeks to months. Polyoma was just the first of the side effects. It seemed to open the flood gates for what was to come. Jaden had everything imaginable. The worst of which were his breathing issues--the need for oxygen, first only at night, and then nearly twenty-four seven. I remember the struggle to get him to put the nasal cannula on. I remember the tears, the frustration, the anger. Just when we thought things couldn't get worse, the flank pain began. It was so bad, it brought Jaden to his knees...screaming with unbearable pain. I felt helpless, not knowing what was happening. Even the doctors seemed perplexed for a while. At one point, not finding anything conclusive, they even dared to suggest that it was psychosomatic. But if you had heard the screams, seen the pain in his face, the sweat on his brow, you would know...this is real. This is not just in his mind. Luckily, the cause was identified and the problem rectified over the course of weeks (or was it months?). As I said, the details are somewhat of a blur.

Jaden did have his Parade. He did leave the unit after a record Day +98 in the hospital (which doesn't include the 2 weeks or so pre-transplant he was in-patient). At this point, he could barely walk without pain and fatigue. I tried to encourage his every move, his every step. I remember the beginning of physical therapy, when each step on the stairs was done with such determination. I remember the exhaustion and frustration Jaden felt when he couldn't walk, much less run, down the hallway without extreme fatigue.

I look at my baby boy now and see such hope, such grit, such patience. I use the word "warrior" frequently when talking about him. It surmises all he's been through and all he has yet to go through. Even at one year post transplant, we are not out of the woods yet.

The transplant has done a number on his lungs. Jaden had a full pulmonary evaluation a few weeks ago, including a treadmill exercise test. He needed to go 6 minutes on the treadmill at optimal heart rate. I was so upset because these 6 minutes seemed like an eternity for him. He screamed, he cried, he begged, he pleaded with me "have mercy!" to stop the test. I had to dig deep yet again and be positive, encouraging, uplifting. I had to remind him of the end result. Dr. Hardy needed this information to get an assessment of his current state and to formulate a treatment plan for him.

I sat down with Dr. Hardy a week later and she told me that although the results were normal in many areas, there were two areas of concern: Jaden's small airways were obstructed (72% flow rate) and he had significant air trappings (37% where the norm is 20%-23%), meaning he could not fully expel all the air in his lungs. She felt that this was a result of the chemo and the transplant so no bronchodialators (ie albuterol) or steroids (ie pulmicort) would make things better. With one fell swoop, she stopped ALL his breathing treatments. I was so excited! This would free up so much of our day. No more washing breathing masks! No more running home for breathing treatments!

As I probed further about what this meant for Jaden and what the long-term implications were, I was once again blind-sided. Dr. Hardy told me that this was the best Jaden's lungs would be. Although there was some hope that his lungs would grow over the next year (Jaden is only 7 and the lungs are fully developed by age 8 or so) and potentially mitigate some of the issues, the reality of the situation is that Jaden may just have to live with the limitations. He wouldn't be running any marathons. "Choose activities that require short bursts of energy," Dr. Hardy had said. Jaden will never be a great distance runner. He will need to rest periodically and catch his breath. Altitudes will cause issues for him since the air is thinner and he will have a harder time breathing as it is. I couldn't believe what I was hearing. I needed to absorb it, soak it in, mull it over. I immediately started to pray. Pray that his lungs grow. Pray that he overcomes this hurdle and can be a normal boy, jumping and playing, running and chasing.

I was dealing with the harsh reality presented to me by Jaden's pulmonologist when I started to notice a cough. First I thought it was just a little cold. It came with a some congestion and a little runny nose. Paranoid parent that I am, I brought it up immediately with Nurse Sherrie in clinic. She listened to his chest and told me all seemed fine. She said we'd watch it and ensure things didn't get worse. Are you sure? Then the words slipped out before I could reign them in "If we were at DUKE, we would have....". Oh boy, Dr. Prasad had made it very clear to me that Dr. Walters wanted to be in charge once we were in Oakland. I could not second guess his decisions or revert back to Duke. I had vowed not to mention Duke if Dr. Walters, who is a colleague and close personal friend of Dr. Prasad's, would accept Jaden as a patient. Now I'd done it! I couldn't help it. I knew if we were at Duke, Dr. Prasad would have run at least an RSV to check for a virus if nothing else. I felt helpless...

Well, I don't know about worse, but the cough was definitely persistent. It was a wet, nasty cough that seemed like it should bring a good amount of phlegm with it. However, Jaden never spit anything out and when he coughed, it seemed to clear. I continued to bring it up in clinic. A chest x-ray was ordered but showed no major areas of concern.

The cough persisted and at the last visit, Nurse Lizzie said she heard some crackling in the right lower lobe. I wasn't concerned at first because "crackling" seemed to be Jaden's baseline post-transplant. Had it gone away and now returned? Nurse Lizzie had no basis for comparison since she had not heard him before. We waited again...

Last week when I took Jaden for his clinic visit, Nurse Lizzie listened again. The crackling was progressing and a chest CT was ordered. She said the team had talked about Jaden in their morning meeting and Dr. Hardy's report coupled with the sounds in his chest suggested Jaden may have bronchiolitis obliterans, or GVH of the lungs. Graft vs. Host of the lungs? At this stage of the game? The words stung my ears. My heart sank... I didn't know what to think. I told myself not to jump to conclusions. Let's just get the scan done and see what happens.

Well, the next day, I got the call from Nurse Lizzie. The chest CT in fact confirmed their suspicion. Jaden did have GVH of the lungs. I was stunned. I didn't know what to say or what to think. I had so many questions, and Nurse Lizzie patiently answered each one. What did this mean for Jaden? Would this improve? What was the prognosis?

Nurse Lizzie explained that essentially this was Gia's donor cells recognizing Jaden's body (mainly his lung area) as foreign and attacking them. GVH can be in any area of the body--skin, gut, etc. In Jaden's case, it was the lungs. This brought to mind our pre-transplant consult with Dr. Kurtzberg and Dr. Prasad. It was very clearly stated that in Jaden's case, if there were to be any issues, they would in the lungs or in his gut--the two main areas in which Jaden had prior infections. Well, they were spot on. The bulk of his problems have been and continue to be with his lungs.

The net net of it is that Gia's cells may, in a few years, adapt to their new environment and Jaden would not really see any effects of the GVH. The other end would mean Jaden would be on breathing treatments long term and "wouldn't be able to play any competitive sports". WHAAT???? Not play sports? Jaden LIVES for sports. He watches ESPN religiously. He played soccer, basketball, baseball. He knows every player on every team, where they were drafted, their stats, their vitals...Jaden IS sports. This was a huge blow.

In the short term, Lizzie said that Dr. Walters was going to be conservative. She described Jaden's case as "mild". The CT was concerning, but they had seen much worse. Dr. Walters wanted Jaden back on Albuterol twice a day. They were also adding Symbicort (similar to Pulmicort) twice daily as well as azithromycin (antibiotic). If this didn't work, the next step was to put Jaden back on steroids.

Steroids??? Say it isn't so! It took forever to get Jaden OFF of steroids! This can't be happening!!! I had to tell myself to take a step back. This is yet another lesson in patience for me to learn. This is God's way, yet again, of telling me I have no control of the situation (control-freak that I am). All I can do at this point is pray and hope for the best. The rest is Jaden's destiny and in God's hands.

Coming back to the annual review...it seems like we take one step forward and two steps back. Jaden has made such tremendous progress in other areas. He's running and playing. He looks so much healthier in the nearly 3 short months since we left Durham. He is looking like himself again--although there is a little bald spot on the top of his head where Jaden actually pulled his hair out. Reason unknown.

My biggest challenge has been keeping him isolated for the most part. He so desperately wants to go places and do things. I have become a little more lenient--allowing a play date with his special friend (even in their home!), taking him to an afternoon matinee (with mask on and no food or drink allowed at the theater), and letting him play with the siblings at Devin's baseball games. It's outside and it's not a "crowd". It's just a few boys throwing the baseball around.

Meanwhile, Jaden is becoming more and more belligerent when it comes to following rules, especially as it pertains to wearing his "duck" mask. I caught him with it around his neck, instead of over his mouth and nose, as he played catch with some kids in the park. He had moved away from my immediate line of sight and cleverly put it back on as he walked towards me, thinking he had pulled one over on me. I had to remind him that I have eyes in the back of my head and quickly called him out.

It's tough being the gate keeper and the enforcer. I'm not Jaden's favorite person. As a matter of fact he's made it quite clear, I'm not the one he wants to be around much of the time. When I protest, he calmly points out that he's "bored" with me. He's with me "all the time". Jaden's looking to find new company and new surroundings. He jumps at the chance to leave the confines of our house--the same house he begged to come home to after 10 long months in Durham.

The hardest has been his inability to leave the area, specifically to go to Los Angeles to see his beloved cousins. Per Dr. Walters, we are not to leave the area while Jaden is on immunosuppressants. The plan was originally to keep him on these medications until September and then begin the wean. However, with the latest lung issues, I'm told we will not jump to wean and it will be much slower than anticipated. Realistically, Jaden will once again miss another year of school and be taught at home by a district-assigned teacher. I have not even mentioned this to Jaden for fear of completely shattering his hopes.

Jaden speaks frequently of 2nd grade. He wants to know which teacher he will have, which friends will be in his class, etc. He wants to GO to school, play at recess, run with friends, interact, engage...In short he wants his OLD life back. He continuously asks me if he'll EVER be able to swim again or if he'll EVER be able to go to LA again...it just breaks my heart.

I have explained to him the circumstances surrounding the two medications that are keeping him from doing things and he seems to understand. However, at the tender age of 7 (even though Jaden is mature beyond his years), it's difficult to grasp and digest it all. I remind him of how far he's come and yet he dwells on all that he is not able to do. I tell him that "soon" he will be able to resume his "normal" life again. To him the "soon" is not soon enough. It seems like an eternity.

I can't blame him. Poor thing has been in isolation for a year. He's missed out on friends, school, family events and gatherings. He seems at his breaking point, but I have to keep him going. I have to show him the future that we have all worked so hard to create for him. The future that is free of daily medications, shots, doctor's visits, hospital admissions....

I keep coming back to the positives. This past year has shown us what determination and strength is. It has shown us the importance of family and close friends who stepped up, traveled across the country (sometimes at a moment's notice), stayed in our home and took care of our kids. It's the grandparents, aunts, and cousins that bonded together and got us through the toughest year of our lives. It's the dear friends that sent care packages to Jaden and uplifting words to us that showed us that it truly does take a village to raise a child. We have all endured so much, grown so much, and learned so much...but we've done it together.

I want to acknowledge each and every one of you, without who's support we would not be at this pivotal point in our journey with Jaden. Although I know there are many bumps in the road ahead and I'm not even sure if this road will ever be smooth, I know that if we got through the past year, we can get through just about anything.

Next week Jaden and I leave for Durham once again. We will be back in clinic at Duke. Back to familiar surroundings. Back to the comfort and safety of our new home away from home. I'm excited to show the bmt team how far Jaden has come. I'm anxious to hear what Dr. Prasad thinks of the latest findings and what he projects for the coming year. Most of all, I'm amazed that we will have gone full circle--back to where it all began.

Stay with me. I can't wait to see what the next phase of this journey holds. I can't wait to share it all with you...

Day +329: Catching Up

2010-06-02T22:35:00.001-07:00

It is nearly impossible to find time to sit down in front of the computer and blog. Mornings consist of getting up about 6 or 6:30am with Gia. Then it's getting the boys' breakfast, making sure Devin gets off to school on time, and then switching to Jaden and his meds while keeping a close eye on Gia, who brings TROUBLE wherever she goes!

It's been a challenge keeping Jaden entertained. To be honest, I've just had to let him watch TV and play video games, much like our time in Durham. I'm frantic just trying to keep up with everything and there just doesn't seem to be enough hours in the day to get everything done.

We continue to go to clinic every 2 weeks, although when Nurse Sherrie confirmed that Jaden had CMV again, we went back to weekly checks to monitor the virus closely. As stressed as I was to hear the news, I was elated when I was told that Jaden was being put on oral Valcyte (Valgancyclovir) once a day. This makes our lives so much easier--it's just the addition of one and a half rather large pills once a day. I was so relieved that he didn't need to get IV meds for it because it would have been near impossible to administer it myself, or worse, take him into clinic twice a day.

Jaden has had his share of bumps, bruises and close calls. Just last weekend, he bumped his knee pretty badly as he dove for a ball in our backyard while playing baseball with Guri. Luckily, once the knee was iced, the swelling went down fairly quickly. Guri tells me the bump was size of a half-dollar!

Then there was the big blister on his index finger from holding the golf club too tightly. Guri took the boys to the driving range and has done an absolutely amazing job keeping Jaden active and entertained. I don't stand a chance when it comes to athletic ability or sports knowledge. I've been told by Jaden that I pretty much "stink" at most sports (or at least am not at par with his expectations!).

To top it off, we had to run an errand at the mall this weekend (i know, i know--mall on Memorial Day weekend was a big NO NO, but we went Monday evening hoping for low crowds) and while I stood in line waiting to pay, I saw Jaden walk up with a half-empty glass of Strawberry Frapuccino from Starbucks. I was terrified because he is not allowed to have any drinks from public places that use blenders or other equipment. What's worse it that when I told Nurse Sherrie, she first reassured me that he wasn't the first and won't be the last to have done this, but then reminded me that the bigger concern was the STRAWBERRIES in the drink. Berries hold a high risk of infection since they cannot be washed or peeled. They are the last fruit Jaden will be able to have. Jaden still claims he was unaware of this restriction, but I think it's his way of pushing his limits and revolting! Since this little incident, I have been asking Jaden multiple times a day if he feels okay. So far so good, but we're not out of the woods yet. He has been complaining of tummy aches, but luckily they seem to disappear once he goes potty!

So, lots of activity, and this was just the latest from this past weekend! As far as labs go, Jaden still completely melts down when they try and access his port. I do put Emla numbing creme on the site at least an hour before he's poked. Jaden still tells me he feels the poke, although I think he's more afraid of the notion than the act itself. He works himself up pretty well each week--tears and all.

Jaden's counts continue to look good. His chimerism was checked the week before last, but only a high level test was run. Apparently the HLA lab at Children's Oakland is having some issues with the DNA samples sent over from Duke. So, all I was told was "things look pretty much the same". When I asked about the lymphocyte count, I was told they didn't have the breakdown, sending me into a complete downward spiral. What's the point of running this test if we can't get the exact data we're after? We are looking at a very specific subset of cells, mainly the lymphocytes, so getting an overall number is pretty useless in my mind.

Luckily, Dr. Walters happened to be in clinic that day and said he would like the test re-run as soon as possible. Given the fact that we had to draw labs again this past Tuesday for CMV and other testing, we were able to re-do it at that time. Nurse Sherrie even came in to do a cheek swab for DNA on Jaden to get a better sample for the HLA lab. She said if it doesn't work, we'll have to bring Gia into clinic and do cheek swabs on her. Just try it, sister! You haven't met my little girl yet. I can't imagine trying to put what looks like a miniature bottle cleaning brush into her mouth. She'll go postal and start smacking everyone!

Jaden has also started home-schooling as of last week. We were told that he needs to be in school while it is in session for legal reasons. Fortunately it's just for another week and a half. Once again, his teacher thinks he's well beyond first grade level. She is also a substitute teacher and said the work in first grade would bore Jaden. She told me today how quickly he picks things up and how he wants to go from one task to another, absorbing everything on his way. I asked if she thought he was a candidate for GATE (Gifted and Talented Education) and she told me he was. I've always had a feeling about Jaden. Not that Devin is any less brilliant, but Jaden has the patience and focus to get tasks done. Devin is still working towards that goal.

Speaking of Devin, I am so impressed with his progress in school. He's been bringing home lots of perfect and near perfect scores on his assignments. It's good to see him really taking school seriously and even enjoying the process of learning. He's always been a very inquisitive child and he absorbs everything around him. He's also ultra sensitive, so I have to be extra careful with him. We've been butting heads lately, mainly because I'm trying to instill a valuable lesson about time management into him, especially with all the year end assignments and extra-curricular activities coming to a peak. Unfortunately, I've stooped to screaming on many occasions just so I'm heard. This just causes him to rebuttal and leads to a shouting match. I've got to rethink my strategy with him. He's a great kid with a great big heart.

Getting back to Jaden and his constant chants of "I'm bored!", it's been quite a challenge balancing all the restrictions placed on him with the need for him to get back to his "normal" routine. He has made friends with some of the siblings on Devin's baseball team and has a good time playing with them as his older brother and his teammates get through 6 innings. Jaden is also pushing his limits. Not only does he refuse to wear the "duck mask" (tighter fitting mask recommended by CHO), I frequently see the basic "Mickey Mouse" mask on his chin. He remember to put it over his mouth and nose as he approaches me, unaware I've been watching him all along. I have to continue to explain to him that he is risking his health for short-term benefits. This is a difficult lesson to teach a 7 yr old. I'm just praying that the frequent hand washing is enough to keep the infections at bay. I hold my breath each time I see him playing with more than 2 kids, even though it's outdoors and he has clearance to have play dates. He's just not allowed to be in "crowds" of people. I just think I'm ultra-paranoid and that the word "crowd" is subjective!

I finally did take both boys to see How To Tame A Dragon in the movie theater last Wednesday. The 2pm show was ideal in that there were only 2 or 3 other people in the theater. When I asked the attendant about slow times, he told us we were in the midst of it. So, Wednesday afternoons have now officially become movie days--at least until school gets out in the middle of June. There's so many great children's films being released over the next few months. I look forward to sharing this time with my boys, even though we'll have to wait several weeks before we can see the predicted blockbusters.

Meanwhile, with Guri's mom leaving for LA in another week and a half, I've been frantically looking for a regular babysitter to help me a few hours a week. I'll need the help so I don't have to schlep all three kids to clinic on Mondays and I'm also hoping to be able to get back to my workouts at the gym one of these days! We've been interviewing candidates, but it's quite a daunting task. I don't think anyone will measure up to our expectations when it comes to taking care of our kids. We'll just have to take a leap of faith and hope we end up with someone that can not only manage all three monkeys, but also keep them engaged and entertained while he/she is here.

I'm doing my best to take care of each child, emotionally and physically. I think I really need to spend more one-on-one time with each of them. I feel the pull and clinginess coming from each individual and I need to act appropriately, although I'm so exhausted at times, I have very little left to give. I think I'll also use the sitter to manage the other two while I do the "mommy and me" individual time with each one.

We are planning our return trip to Durham for Jaden's one year studies. We're hoping to go back the week of July 12, but with Jaden still on immunosuppressants for the foreseeable future, we're at the mercy of corporate flights once again. I'm hoping we'll luck out and the flights will be available when we need them. I don't know how all the testing will be scheduled at Duke with all this uncertainty.

That's about it for now. Lots going on. I'll try to update as often as I can. Looks like my original plan of daily has turned into once a week and now once every two weeks. Hopefully as things settle down and we get back to our regular routine, I'll free up some time to "chat" with you all!

Until next time, keep Jaden in your prayers. We cannot wait until he's able to do all the things he was able to pre-transplant. I want to see him hitting those balls out of the park, taking that last shot before the buzzer rings, and catching up with the rest of his Tae Kwon Do class as he works towards his black belt. Most of all, I pray that his lymphocyte counts skyrocket so that he can start school with all his friends this Fall. That would give Jaden a much-needed morale boost and assure him that he will once again lead a "normal" life!

Day +310: Celebrations and Roadblocks

2010-05-14T10:02:00.000-07:00

Wow! It's been nearly two weeks now since I put my thoughts down. My apologies to those that follow my blog regularly, I'm as anxious to write as you are to read my entries! I need to do a better job carving out some time to do this for myself...

Last few weeks have been fairly uneventful. Jaden has gone to all of Devin's Saturday baseball games. We take the entire clan and it's a good day out for all. It's one of the few times that Jaden can be out amongst people (with his mask, hat and sunblock, of course). I've also taken him and Gia with me to the grocery store and Target. Not very exciting, but an outing nonetheless. I also tested the waters with two play dates. The first one was at my friend's house and even though her son was careful not to run around too much with Jaden, my little guy still was exhausted. After the two hour visit, Jaden asked if he could nap in the car and slept until 7pm. I was so stressed that he was going to get a fever, but he stayed at 98 degrees all night.

The second and most recent, we had friends over to our place. Their two boys and ours ran around from basketball in the backyard, to video games, to Legos and everything in between. Jaden didn't get to bed until 10:30pm and I was sure he would be running a fever. To my surprise, he did wonderfully. No fever, no over-exertion. I think we're turning the corner!

We had clinic last Monday and labs were drawn as usual. We could not do chimerism tests on Jaden because I was told by Nurse Sherrie that Duke had not sent Gia's DNA samples yet. This was surprising to me because the team at Duke is normally so responsive. It took one email from me to Dr. Prasad to get the ball rolling and withing 24 hours Jaden and Gia's DNA samples were at CHO! Seamless--that's Duke for you! I swear I should be in an infomercial for them with Jaden as the poster child. I am still so impressed with that place!

It was a quick visit and we didn't even wait for our lab results. I hoped everything would be fine since his counts had been stable for several weeks. Well, I got a call from Sherrie a day or two ago telling me that Jaden's CMV test had come back positive this time. Of course I was worried. I wondered if I had exposed Jaden to something, but Sherrie assured me that Jaden already carried the CMV virus in his body. The immunosuppression Jaden's been on has allowed this virus to resurface. We will need to go back to clinic this Monday to redraw the labs. If they are positive again, Jaden will be put on a course of Gancyclovir again for several weeks.

My concern was that now that Jaden has a port, how will I administer IV medications? I'm not comfortable accessing/deaccessing the port and I don't want to admit him for something so simple as new medications. Sherrie told me that indeed Jaden would need IV Gancyclovir because the oral form is not as potent. He will receive it twice a day for two weeks and then once a day for another week or so. If the test comes back negative at this point, they may do another week just to be safe. If it is still positive, they will have to switch to another medicine, possibly Foscarnate. Okay, STOP right there. We are NOT going to give him Foscarnate. This was the medication that caused the severe kidney inflammation and excruciating pain--possibly the worst side effect Jaden faced. HELL NO, we're not doing that again! Sherrie said that we'd cross that bridge if we came to it. She didn't want me to worry just yet because the second test could be negative. It has happened before...

Okay, so telling me not to worry isn't really the solution. I have the issue in my mind now and all I do is worry. I worry about logistics. Could I be trained to administer IV meds via his port at home? I had done so many IV meds via his central line back at the apartment in Durham. How much harder could this really be? What if I couldn't do it? Would I need to take him to Oakland (30 min away, without traffic) twice a day to have this done? Or worse, would they admit him? But for two weeks or more? That didn't seem reasonable. More importantly, just as I was thinking of easing my grip on Jaden's activities and allowing him a little more leeway, a new problem has arisen...and so these thoughts circle around and around in my head.

The good thing about going in for labs this Monday is that we can now check Jaden's chimerism again. Last check his lymphocytes were at 34% or so, up from the mid twenties. I pray that they are continuing to go up. I need to see a positive sign that we can wean the immunosuppressants soon, meaning Jaden can start to do a few more things.

On the flip side, we celebrated my little warrior's 7th birthday on the 7th. It was a very low key day, with a cake and just us plus my sister and nephew here. I had planned to have two of his friends over for a mini-celebration a week later but it keeps getting postponed--either due to schedules or someone or the other being sick.

We tried to make the day special for Jaden. Guri got some balloons and we decorated the house. I made a poster for his room. We also got him a few things on his list. Guri and I took him to lunch (what else, McDonalds!) and then my little fashionista actually wanted to go shopping! He is one of the few boys I know that actually enjoys picking out his clothes and has a very definitive style. So, he went to the mall and picked out some very cool tee-shirts and shorts. The boy is stylin'!

Jaden has been complaining once again of being bored. He watches TV and plays video games most of the day. When Devin comes home from school, Jaden will turn off the TV long enough to sit down at the table and do his Kumon, just like big brother. Then it's off to the backyard for basketball and baseball. Devin has been really good about understanding that Jaden needs play time and does his best to spend some time with his little bro. Of course, there are still the usual brawls and fist fights on occasion, but that's nothing new. They know mom will punish them both, so they're actually starting to work things out on their own ;-) I've also spent some time with Jaden playing basketball in the backyard. I'm pretty good if you ask me, but Mr. Jaden feels there is much that needs improvement!

Yesterday, I took Jaden to a movie theater to see Furry Vengeance. The movie was nothing to write home about (even Jaden complained it was boring throughout). The beauty was being in an actual movie theater--out of the house. Jaden couldn't have the popcorn or the sodas, because they were sitting out and from a fountain, but I did let him indulge in the biggest box of Nerds candy you have ever seen. I also snuck in a can of soda from home so he could have a drink. It was just good to be out of the house and doing something different. I picked the perfect time--2:20pm. The kids weren't out of school yet and we had the theater all to ourselves, except for one other set of boys. It was ideal as far as outings go. I did Purrell his hands as soon as we got back to the car and had him wash them when we got home.

The boys both want to see the animated movie How To Train Your Dragon in 3D. I have to check with the theater to find a slow time to take them. I offered to take them separately, but they want to go together. Luckily it has been out for a few weeks already, so I'm hoping the buzz is slowing down. Once again, I'll have to deal with Devin's request for popcorn and soda, knowing Jaden cannot join him. It's been a delicate balance...

Another challenge will be Devin's upcoming birthday. We don't want to restrict him because he's been through a lot this year as well and it just wouldn't be fair to deprive him of a celebration. However, we need to figure out how we will include his brother when Devin's choice of activities is a laser tag place-somewhere Jaden is not allowed to go.

There's also a great play in the city (San Francisco) that I wanted to take them to. Peter Pan is playing in a rotunda style theater. What fun it would have been for everyone, but again, Jaden will not be able to go. I'll have to do a special day with Devin and Guri will need to find something he and Jaden can do together. As disappointing as it is, I have to remind myself we've come a long way. I just keep telling myself that hopefully by this time next year, Jaden will be over this hurdle as well and our lives will be hopefully getting back to the way they were with both boys on the baseball field, surrounded by friends, having a blast as only boys can.

It's only another year, but it seems like an eternity...

Day +299: Where Does The Time Go?

2010-05-03T22:34:00.001-07:00

I can't believe it's been a full week since I've posted. It seems nearly impossible to get some time to sit down at the computer these days. We are working on "streamlining our processes" to get into our rhythm as a family of five. It's been a challenge to say the least, more so because Jaden can't really go out anywhere. I always have to think about who's going to stay home with Jaden as I run Devin to and from his activities. We've been lucky so far because Guri's mom has been here. She left last week for a brief period to attend to some business and it gave us a good indication of how things will be in another month or so when she returns to LA for good. Let's just say we have some work to do.

Even with Guri and I working as a team, we are both exhausted by the end of the day. Between laundry, meals, activities, naps, clean-up, homework, etc. there's not a free moment to sit down and take a breather. Gone are my days of 4pm coffee and Oprah. That is a luxury in what seems like the distant past. Don't get me wrong. I'm not complaining. I love having us all under one roof. I just wish there were more hours in the day to get everything done.

We're working with Devin to make him more independent and he's really rising to the occasion for the most part. He gets up and gets himself going in the morning and even started to make his bed (BIG accomplishment!). I'm now leaving the boys' clean, folded laundry on their beds and having them put everything away in its proper place. The hope is to have Devin completely self-sufficient and Jaden nearly there, leaving Gia as the only child that needs me 24-7. And in her case, I mean TWENTY FOUR SEVEN! She is a little terror--into everything and constantly needing to be watched lest she puts something in her mouth or otherwise finds trouble. You need one dedicated person watching her at all times. She's so smart, she's already figured out how to open the playroom door and get into the boys' Legos (which leads to lots of "MOM! Get her OUT of here!" rants from her big brothers). Gia is now nearly at the point where she can open the other doors, leading to the bathrooms and even out to the backyard. Like I said, where she goes, trouble follows!

The first few weekends were dedicated to cleaning--garage, closets, bathrooms--you name it, we purged it! There is still more to be done, but we made good progress. I think I finally came to the realization that there is so much to be done that it will need to be taken care of gradually, over time.

We have been very careful with Jaden, especially since he fatigues so quickly. He's also trying to do more and stay up later, which ultimately leads to body aches, exhaustion, and low-grade fevers. I've had to give him Tylenol for the past few nights because he was so tired and achy. Guri also thought it was based on the fact that Jaden is not drinking anywhere near the 60 ounces he's supposed to consume on a daily basis, especially since it's getting warmer out here. Guri really pushed fluids all Sunday and even with moderate activity levels, Jaden didn't run a fever and he wasn't as exhausted as usual. So, it's now our mission to follow him around, prodding him to drink whatever liquid we've put into his hands at the moment. He lashes out with "Stop telling me what to do!" and frequent "No! I will NOT!"--to whatever it is we are asking him to do. I can totally understand where he's coming from. He's been under a watchful eye and on very strict guidelines from his medical team since his transplant last July. He's now at a point where he wants to reclaim his freedom--freedom to do as he pleases, eat what he chooses, and go where his heart desires.

Frankly, since he's nearly one year post transplant, I would have thought he would have been very close to getting back to "normal". Dr. Walters tells me that it's because Jaden is on immunosuppressants that we have to be so cautious. Once his counts are stable and he is weaned off these medications, he should be able to resume most of the activities he was used to pre-transplant. This seems so far off. The plan is to be on immunosuppressants until September and then begin to wean slowly off of them, one at a time. I haven't told Jaden about this time frame because to his six year old mind, September would seem like an eternity. I keep telling him that as soon as his counts look good, the doctor will start taking him off of these medications.

I cannot wait until the day that he is able to run around like a "normal" 7 year old (his birthday is on the 7th!), playing baseball and basketball, swimming, and joining his cousins and friends for playtime. I know that day will come and we must be patient. Honestly, I thought being cured of CGD was a miracle. I didn't anticipate that Jaden would still be on all these restrictions so far out from transplant. I have to remind myself that he's been through an incredible journey and that he is still recovering. He looks so good that we forget all he's been through and continues to go through. Jaden is still our little warrior, taking everything that's thrown at him in stride.

Today was a little strange in that we didn't have to go to clinic. We are now on an every-other-week schedule. I am always nervous about not having the security blanket of the medical team checking on him weekly, but I'm also thankful that his counts are stable and that he doesn't need to be seen as often.

The summer will pose its own unique challenges. I'll have all three kids at home with me. All the children in the area will be out of school, which means what I can do with Jaden is even more restricted. Our plans of just hanging out with family in LA for several weeks has now been bunked since Jaden is not allowed to leave the area and also needs to be wary of crowds. Guri and I will take turns with the other 2 children attending our cousin's wedding. I feel so badly for Jaden. I know he would have loved to play with all his cousins and enjoy the wedding festivities. It must be a horrible feeling to know everyone else is having fun and you are confined to your home. Guri and I will do our best to entertain him and keep him active. Hopefully, Jaden's counts will surge and he'll be off these nasty medications. Hopefully, he can return to "normalcy", whatever that word now means, soon.

I was hoping to take the family away for some sort of summer vacation, even if it was nearby--just away from home. It's been a long and difficult year for all of us and we so deserve to have some downtime with our crew. I'm just having a tough time thinking of where we could go given Jaden's restrictions. Napa sounded good, but Jaden isn't allowed to swim and I don't know what else he would do there. Maybe Carmel? Nope--ocean and excessive sun, both restricted. Everything I can think of that might be fun for the kids involves crowds or swimming--both of which Jaden is to stay clear of. I'll have to rack my brain and try to come up with a creative solution. I don't want to have this summer pass without some dedicated time to reflect on the past year and all we've been through. I want to celebrate how far we've come in this journey and give the kids an opportunity to just let loose. Anyone have a good suggestion? I would love to hear it! I am determined to bust out of here and find a way to reward ourselves...

Day +292: Say It Isn't So!

2010-04-26T11:54:00.000-07:00

Out in the boonies, playing it safe!

Dying to get into the game!

Big Bro Devin in action

Gia was loving being out in the fresh air

The weekend went by so fast. Saturday was consumed by Devin's baseball game. Jaden wanted to go, so I made sure we took every precaution possible. He had on plenty of sunscreen, wore his hat and long-sleeved shirt (luckily he wanted to suit up in baseball gear as well, so it wasn't a tough sell). Guri took him out in the middle of the sports field with no one around and had him on a lawn chair under an umbrella. I was pretty happy about the protection, but Jaden was so bummed about being so far from the action. Like I said earlier, he's used to being right by his brother's side, just outside the dugout.

He was sitting out on the lawn, in the sun, when I walked up. I tried to get him back under the umbrella, but he said he was cold. Considering he had on a baseball cap, I hoped it would be okay. Jaden would also use the excuse of checking the score board and wander back by the dug out to get a closer look. After waiting a few minutes, I would have to gently coerce him back to his spot. He was not happy with me. Complaints of "What's the point?" and "I thought this was going to be fun, but it's NOT!" filled the air. I felt so bad for him, but Guri was wonderful about coming back and playing some catch with Jaden out in the field.

Sunday was dedicated to getting things organized. I'm happy to say that the house is starting to get back in shape. We are working slowly on putting things back in place, which in turn leads to peach and tranquility for both Guri and me. Jaden worked very hard helping me clean and organize his closet. He is so meticulous and orderly--it was a task he jumped right into and enjoyed quite a bit. You can't say that of many 6 yr olds!

Jaden also went outside with Guri and Devin to shoot some hoops in the backyard and also found his collection of baseball cards to organize. By the end of the day, I could see the fatigue in his face and he complained that his body hurt. I went into panic mode and had him rest and hydrate himself. I gave him some Tylenol before bedtime for his body aches and massaged his legs, but I was afraid to take a temperature. He felt a little warm, but I prayed that it was fatigue-related again. I knew if I took his temperature and it hit that 100.4 mark, I'd have to notify the MD on call and deal with an almost certain admission to the hospital. I'm just not ready. It feels almost childish, but I guess I thought that If I don't know what his temperature is, I won't have to deal with the reality of admission, something I'm not ready to face again just yet.

Guri and I tag-teamed as usual for the evening routine as we got the kids bathed, fed and in bed. We watched a little TV together and finally dozed off. I'm such a light sleeper these days that every little thing jars me from sleep. This morning, I had the pleasure of Mr. Jaden waltzing into our room at 1:45am. Of course the first thing I thought was that he was running a fever or not feeling well. As he climbed into bed with us, I felt his forehead and it was cool. Okay, buster, what's the big idea? Then I thought, just let him be for a while. Well, Jaden decided to take the liberty of stretching out across my side of the bed, which left me sandwiched between him and Guri. I couldn't move to either side but figured I was so tired that it wouldn't make a difference. That worked for about 15 minutes until I finally got Jaden up and back to his own bed.

At 5:15am I heard Gia crying. Mom had the monitor tonight and I knew we had talked about why Gia kept waking up so early. Mom had suggested we let her cry it out for a bit. I didn't hear her any longer so I assumed she went back to bed. Mom told me later that she did go give Gia a bottle but that she fell asleep right away after she drank her milk, which is exactly what she did with me the other night. Can she really be that hungry? I feel like we stuff the little munchkin until she nearly explodes every night in hopes of getting her to sleep in a little bit!

Guri woke me up about 6:30am so I could get going. Today was Monday so it meant clinic day. I was warned that it would be a longer day because Jaden needed IVIG (immunoglobulin) since his IGG level was below the 500 threshold last week. Guri got Jaden going while I got ready to go.

It seemed harder to get myself out of bed and out the door today. I decided to swing by Starbucks for a caffeine rush as we headed to CHO. As soon as we arrived, I let the nurse know that I was holding Jaden's meds until his lab draw, in hopes of moving things along. It was still half an hour later before things got moving and the nurse came in with all the supplies.

Jaden of course went into meltdown mode. He starts to cry and grabs my arm as he screams "Mommy, NO!". It kills me to hold his arms in a big hug as the nurse jabs the needle into his port. Surprisingly, when it was all said and done, Jaden said he didn't feel it this time! See, Jaden, the nurses at Duke told us that it would get easier as the site healed. I was relieved since he already was so upset that the clinic TV did not have Nickelodeon or Disney Channel AND the PS2 wasn't working or if it did work, there were really not many games to choose from (did I mention that we were spoiled at Duke?). But I came prepared and he was able to play games on my laptop.

Nurse Sherrie came in and briefed me on the days events. Jaden would get IVIG after his lab draw and then she would come in to show me results as they came in. She also showed me a draft of a medication checklist that I had requested. I was surprised at the effort involved as it looked like it was created from scratch and the nurses wanted my feedback on layout and content. I pointed to what I was using currently. Again, it was an application Duke used called MyMedChecklist. It was very straightforward. The nurse had given me access to it so I was able to see Jaden's schedule and print it myself. The CHO copy paled in comparison. I told Sherrie that it might save them some man hours if they just used what was already set up. Sherrie looked intrigued and said she'd look it up right away. She later returned to tell me that their group would have to sign up for the application and that she would bring it up at their next meeting. oookay...

In the meantime, I asked how long the IVIG would run and was shocked to hear FIVE HOURS! WHAT???? Why that long? I knew it took a while but never remembered it taking most of the day. I'm horrible in that I just pick up my phone and call Duke clinic to verify. I found out the rate of infusion, how it's ramped up, what dosage is given, etc. I'm sure the nurses at CHO must love me for it! But, I have to cover my bases. They are still getting to know Jaden and his routine. I need to ensure there are no mistakes.

I found out from Duke that Jaden receives 10g of IVIG and it's ramped up based on some formula the nurse gave me (I wasn't going to go that far). When I asked what the dosage was for Jaden, I learned it was DOUBLE the dose. No wonder it took so much longer. Why the difference? No one seemed to know, but the dosage was based on 1g per kg of Jaden's weight, so it was "protocol" at CHO. As much as I wanted to email Dr. Prasad, I knew I had strict guidelines about Dr. Walters and his team being fully in charge of Jaden's care. I'm still planning on getting to the bottom of this...maybe I'll unofficially ping of of Jaden's nurses and pose the question. I would think the guidelines for this med are standard across organizations.

Alicia, our nurse, also asked about premedicating Jaden with Tylenol and Benadryl. What? Premeds for IVIG? I don't remember that...I'm pretty certain the premeds were for blood products (red blood cells and platelets) only. The nurses didn't seem too sure, so I told them to err on the side of caution and Jaden received both medications. Of course as soon as he got the Benadryl, he started getting sleepy. This med knocks him out and Jaden slept for several hours, which was a blessing in this case because he had already started the "I'm bored! This place really stinks!" chant soon after we arrived. I did end up calling the Duke clinic once again and was told they had no records of Jaden receiving premeds for IVIG--oh well, better safe than sorry.

It was just past noon and Jaden's lunch sack was delivered to the room. I must say this is a wonderful perk at CHO. Unfortunately, Jaden was out cold, so I just had them set it on the table. Soon Dr. Walters came in and introduced himself. He started asking about Jaden's fevers and I told him he only had it once and I was certain it was fatigue related. I also asked if this was normal. Dr. Walters said fatigue is common, but not the fevers. Once I told him that Jaden was about 88-89 degrees, Dr. Walters didn't seem too concerned. He said it would even if it was low 100, he wouldn't be bothered, especially if there were no other symptoms.

I went on to ask about Jaden's ability to attend a family wedding this summer. Dr. Prasad had initially given us the green light, but more recently was hedging, so I wanted to ensure it was safe to take Jaden. Dr. Walters confirmed what Nurse Sherrie had told me: normally patients are NOT allowed to leave the local area while they are on immunosuppressants. However, since it was close family, he felt that we may not be able to keep Jaden from "normal" events.

Having said that, Dr. Walters stressed how it was critical to keep Jaden away from crowds right now. Great...this is an Indian wedding. We're talking a "small" one hundred person ceremony followed by a more traditional 300 or so guest reception. I tried to get a buy-off by mentioning that the ceremony itself was OUTSIDE on the rooftop garden of the hotel. Dr. Walters cautioned that with 100 people, Jaden would have to wear his N-95 mask (not just the little Mickey Mouse one) at all times. With the reception indoors and the crowd swelling to 300 or more, Jaden would have to be even more careful. The mask would need to stay on and under no conditions was ANYONE allowed to touch or hug Jaden. Er...did I mention we're Indian? Hugging is a cultural thing, how do you NOT hug someone when you greet them? It's in our blood...we're just huggers by nature!

Dr. Walters reminded me that while Jaden is on immunosuppressants (mainly Cellcept and FK-506), he is incredibly immune-compromised and very susceptible to infections. How could I be sure no one in a crowd that large was ill or hadn't been around someone that was ill? Someone may have a virus that they are immune to but one that could be very serious for Jaden. I started to panic. I never thought of NOT taking Jaden down to LA for this event. I just assumed we'd have to be extra careful. Now, I was stressed. Dr. Walters continued. Was it worth Jaden getting sick and hospitalized for several days? I mentioned that Guri's parents lived close to Children's Hospital Los Angeles. Dr. Walters clarified that Jaden was just barely transitioned to CHO. The doctors and staff were just getting to know him and he had been to clinic several times now. Although Dr. Walters would arm us with a letter detailing Jaden's condition (and I already had one from Dr. Prasad), he felt we were relying on a piece of paper to fully convey what Jaden's conditions, medical treatment, precautions, premeds, etc. were SHOULD there be an emergency. Were we comfortable that the staff at the new facility would be able to comprehend and absorb all of this information while they attempted to treat Jaden's urgent needs? Good point. Now I was really distressed. I could feel the beads of sweat forming on my brow. I had to ask myself "After everything Jaden's been through, was I prepared to subject him to more? Was I willing to risk his health over this one event, as important as it was?" I knew the answer in my mind. I was just in denial. I so wanted Jaden to go to LA and have fun with all his cousins. He had been talking about it for such a long time. I didn't know how I was going to break the news to him.

I then got another shocker when I asked Dr. Walters whether Jaden could swim in family pools. I was looking for confirmation to the approval I had already received from Dr. Prasad, but Dr. Walters again said NO. Regardless of the pool and the amount of chlorine used, there is always some bacteria there. Jaden cannot risk it. HOLY SHNIKEES! Jaden is going to be crushed. I do not want to be the one to pass this piece of information on to him. We were making all sorts of plans around Gunu bhua's pool and all the time Jaden would be spending lounging with his cousins. Now what?

Dr. Walters asked how long I was planning to go down to LA for--a few days he assumed. I told him I was planning on being down there with family for a few weeks. Well, I got the KABOSH on this as well. IF we were going to go at all, we could not keep Jaden out of the local area for more than ONE WEEK-tops! Beyond that, Dr. Walters felt we were just tempting fate. It was too big of a risk. Okay, there go my summer plans....I should know better to make long-term plans at this point!

I kept going with my questions. Could I assume Jaden would return to school for second grade in the Fall? My jaw dropped as Dr. Walters shook his head once more. WHAT? WHY NOT? This would be the nail in the coffin...I can't tell Jaden this. I WON'T burst his bubble! He's so excited to be back in school with his friends and teachers. Dr. Walters just said he will still be on immunosuppressants. Okay, the next obvious question is "how long will he be on these meds?". Dr. Walters told me the plan was 6 months at least. Jaden started in April, so he'd go until September. If everything looked stable (no more lymphocyte decline), he'd start to slowly taper one of his medications. If this went well, he would slowly taper the other. Dr. Walters said that at this point, we should assume Jaden would be home-schooled through second grade. I'm not going to share this piece of information with him just yet...it would devastate him!

Dr. Walters must have seen the color fade from my face because he gave me a ray of hope. He told me it would just depend on how Jaden responded to the immunosuppressants. He had one patient that had some rare small virus and once the immunosuppressants were administered, the patient showed immediate turn around-to the point he was completely back to donor cells within 3 months. I prayed this was the case. Hopefully Jaden's cells would also respond well. It would be wonderful to start tapering by June or July, so that he's ready for school in August. Please pray that this is the case.

It's already going to be a long few months for my little guy, I'd hate for all this to drag until the end of the year, or worse, into the new year. Jaden's morale is already low. I don't know how he will respond to all of this. I have to find things for him to do. I have to give him some sense of normalcy. I ran a few ideas by Dr. Walters. Could I take Jaden to the movies? Dr. Walters confirmed this was okay, again, as long as it was a weekday afternoon matinee when all the kids were in school. Should I take my Lysol wipes for the seat? Should I put a sheet over the seat? Dr. Walters told me this was not necessary. Most of the germs were transferred by people. I asked if I could take Jaden to a museum or other venue under the same guidelines. Dr. Walters muttered "Those are great ideas!". Okay, at least I had something to go on...

Dr. Walters examined Jaden, who opened a groggy eye and then went right back to sleep. When he awoke, he was cranky and wondered how much longer still. Luckily, we were in the last hour of the medication. I got him to eat a few bites of the orange, but then he said he wasn't hungry. He didn't want the lunch. I asked the nurse if I could go get him something from McDonald's and she said that would be fine. WOW! This was so different from Duke, where I wasn't allowed to leave the premises without Jaden. I could only go as far as the cafeteria and I couldn't even do this if he was in the middle of an infusion. Drastic change!

Before I left, I offered Jaden a banana, which he gladly accepted. I fed him a few bites and then ran to ask Nurse Sherrie if he was allowed to hold the fruit himself. She gave me a strange look as she gave her approval. I told her that post-transplant, I was told Jaden could not touch the banana peel and that I would have to peel and cut the fruit for him. Sherrie must have thought I was some deranged lunatic as she reiterated "It's fine for him to have his banana". Once again, I asked "So, it's OKAY for JADEN to HOLD the banana HIMSELF?" She nodded a firm YES. Okay, just checking. So, shoot me for being ultra-cautious!

It was just past 4pm when we left the hospital. I knew Devin would be livid because Tae Kwon Do class started at 4:40pm and I knew I was going to make him late, which he detested (mainly because Ms. Claudia would give him a hard time). I called home to let Devin know I was on my way and we rushed out the door.

Just as I suspected, Devin was not happy with me (I'm seeing a common theme here). He raced to the car to tell me he's not going because it was already time for class to begin and we hadn't left home. I told him to hop in the car (as I hurried Jaden into the house) and promised to take the blame with Ms. Claudia.

Finished class and came home to start the night time routine. Another day done. Guri and I need to strategize about today's events and come up with a plan. Who will go to the wedding? How will we break it to Jaden? How will we make it up to him? We got a lot of 'splainin to do!

Day +289: In the throes of chaos

2010-04-23T22:33:00.000-07:00

I can't believe it's been nearly a week since I was able to blog. I don't know where the day goes. I haven't been sleeping well and I'm not sure why, so I'm still chasing that one good night's rest. I'm out of bed around 7am to get Devin's breakfast ready before school. Gia has been up much earlier than that but thank goodness Guri's mom is still here helping us out (until the end of the school year). She has been a God send, waking up with Gia in the morning, making dinners, doing laundry. I'm so overwhelmed with just the unpacking and reorganization of the house and my time is consumed with Devin's after school activities and Jaden's meds (with Gia and her clinginess thrown in as well). Once I get things in their proper place, I can start thinking about taking over the other things.

I had an initial burst of energy when we got home and was able to attack my closet and shelves. It was downhill after that. All I saw was STUFF and lots of it--spilling out of every drawer, closet, bedroom. By Wednesday, I felt like I needed to escape or I might do someone bodily harm! Girlfriends to the rescue....I had a relaxing dinner with them and was able to get a fresh perspective on things.

Jaden is doing well. I am now officially his least favorite person in the house. He associates me with all the things he can't do and has frequent meltdowns. It's difficult for his 6 yr old mind to understand why he can't go places and do things--especially if he offers to wear his mask. He feels like a prisoner in his own home. I guess he thought that San Ramon meant freedom, when in reality it's just a bigger cage. I am too paranoid to take a chance and I clear everything with his medical team at Children's Oakland.

We returned there on Wednesday for what should have been a quick FK-506 lab draw. It turned out to be several hours as we once again dealt with the ominous "poke" and Jaden's crying, more discussions with nurses, and waiting for his refills. The nurse told me that it's not pain Jaden feels when the port is accessed, it's more pressure and the FEAR of pain. I don't know about that. Jaden claims it hurts and I'm on his side. Hopefully it will become less stressful as the weeks go on.

I was finally able to meet Sherrie, the nurse practitioner that I had set things up with from Duke. She said we would return on Monday next week for another lab draw and mainly to meet Dr. Walters. It seems he is very elusive since he travels and has meeting engagements on top of his regular patient load. Sherrie felt that since Jaden's counts continued to look good (not much change from the last go round at Duke), we may be able to draw labs less frequently. On Monday, she will review the schedule with us and let us know how to proceed in the coming weeks.

I asked her all sorts of questions about where I could take Jaden, what he could eat, etc. Surprisingly, he can have tap water now, although all the berries Jaden loves are still forbidden fruit. This just aggravates Jaden more. He craves strawberries and blueberries, two of his favorites.

Many of the other answers were similar to those we've heard from Duke. He can go to the movie theater, but not when it's crowded (such as opening night). He can eat at restaurants as long he is seated away from the main dining area and groups of people. He can even go to Devin's baseball game as long as he is protected from the sun and sits away from people and especially other (younger) kids. He is not allowed to be anywhere near the dug out and Sherrie reminded me that as the weather gets warmer and the dirt starts flying, I'll have to be especially careful. Try telling that to a kid who's used to being "bat boy" and hanging out in the dug out with his big brother and friends!

He still cannot go to his Tae Kwon Do classes because of the number of "sweaty" students and the enclosed space. I was even shocked at Sherrie's hesitation about attending school in the Fall. Jaden will be 13 months post-transplant by then, but the nurse felt it would depend on whether he was still on immunosuppressants and his immune function testing results. I'm not going to even think about that. Jaden would be devastated if he knew that he may be isolated that long!

Guri and I talked about how to manage the restrictions and Guri promised Jaden he would be home by 1pm to play ball with him (I have offered but was told I "stink"!). They had a great afternoon starting with lunch at Max's Diner. Of course I armed Guri with the Lysol wipes for the table and reviewed all the precautions with him. They came back and played basketball and even a little baseball in the backyard. Judging by the smile on Jaden's face, I take it he felt a little more "normal" today.

In the meantime, I met with various educators and caught up with Devin's progress. I was able to bring Kumon packets back for Jaden so he could get back on track. I've never seen a kid so excited about math and reading packets! I think it will give him something constructive to do during the days, other than play video games and watch TV. Mrs. Zamani, the center director, told me she would decorate the entire center with balloons the day Jaden can return on site. I'm sure Devin will LOVE to hear that. He's already feeling that his little bro gets all the attention and privileges.

I'm doing my best to give Devin extra attention and reassurance and it seems to be working. He's starting to do a much better job listening and I've just seen such growth in him since I left last June. He's so much more focused and dedicated at school (complete shocker from my high energy bundle of joy!). We're having a great time catching up and having our long talks. I've missed him so!

Our littlest one is thriving on all the attention and kisses she's getting, especially from Devin, who thinks she's the "cutest baby on earth!". Thank God she's easy going, although she's started smacking us all if she doesn't get her way. And she'll look you right in the eye as she does it as if to say "so what are you going to do about it?". She's been pretty clingy but it's probably because she sees me coming and going throughout the day as I'm dropping off and picking up Devin from his various activities.

That's really about all. We are still in the throes of transition and one day (hopefully sooner than later) things will be in their place and we will restore peace and tranquility to our little abode.

Day +285: Starting Again...

2010-04-19T22:46:00.000-07:00

It was a long night as I watched over Jaden's fever. I woke up periodically to check to see whether it was getting better and by 3am, it was within normal range.

The day was hectic as ever. I had an appointment this morning and then ran back to take Jaden to clinic at Children's Hospital Oakland. It was our initial consultation and both Jaden and I were apprehensive. I noticed the difference the moment we walked into the Day Hospital, although Jaden was a little more vocal than I was. The facilities were definitely in need of updating. Jaden was excited to see the TV and the PS2 in the isolation room, however when he couldn't get either to work and found no games with which to play (not to mention his remote control failing to function properly), he let out a loud "This place stinks!". I tried to convince him that it would get better and we just happened to be in a room where the PS2 controller was not working, but it didn't help matters much. Jaden threw himself on the bed (which was archaic in its controls and the bedding was also showing it's years of use) with a big huff and a furled brow.

Even though the facilities may not have been as nice as those at Duke, the medical team was definitely very patient. Dr. Bindu, one of the three Attendings, came in and introduced herself. She said the purpose today was to get to know more about Jaden. She was impressed with the information Duke had sent over and even more impressed with our decision to go there. Once she learned that we had utilized Pre-Implantation Genetics (PGD) to conceive an HLA-matched sibling for Jaden's transplant, Dr. Bindu was even more excited with me. She asked me several questions about my decision to go to Duke and then told me that there were very few patients as educated about Jaden's medical needs as I was and that we had done all the right things to ensure Jaden had the best possible chance of success with his transplant. She went on to say that Duke and Dr. Kurtzberg's cord blood transplant program was the best in the country and that she was thoroughly in awe of Dr. Kurtzberg's work. Apparently Dr. Kurtzberg had multiple clinical trials running nationwide and was at the cutting edge of transplant medicine. This made me feel so validated in making the decision to go to Duke and I told Dr. Bindu how impressed I was when I spoke with Dr. Kurtzberg during our initial phone conversation.

Not much took place today in clinic. Jaden's port was accessed and he had a major meltdown stemming from his fear of the needle. The nurses were supportive, but not quite at the level of the Duke team at comforting Jaden. Okay, I hate to compare, but when you've been at the best, it's hard not to notice the differences! He openly told them that it hurt more than it did at Duke and that he was not happy with any of them. This may have been due to the fact that the EMLA cream sat on top of his steri strips so I'm not sure it was absorbed completely into the skin.

Regardless, we got through it with lots of tears and a command to not speak while the port was being accessed. "Two words: Don't talk! Do you get it?" Jaden screamed as tears rolled down his little face. I was holding him in my arms as his hands clutched mine. The labs were drawn, including a culture of the port, and we moved on with our visit.

Dr. Bindu examined Jaden and said his chest sounded like wheezing and crackling. I told her there was a baseline crackling that Dr. Prasad always referred to, but that we needed to follow-up with a pulmonologist long term for Jaden. Dr. Prasad was going to initiate this request. Dr. Bindu then decided to get a chest x-ray so they had some baseline information, even though I told her that Duke had records galore when it came to chest CTs and x-rays. I also told Dr. Bindu about getting a physical therapist involved and she said she would make the recommendation.

The doctor then told me about protocol at CHO. If Jaden developed a fever again of or greater than 100.4, I would need to call in and more than likely he would be admitted for the standard 48hrs while IV antibiotics were administered and until the lab cultures returned. I found it odd that even if Jaden needed antibiotics in clinic, they would need to be administered on the unit. Dr. Bindu said they weren't taking any chances since Jaden's immune system was not completely reconstituted yet. CHO would be drawing their own labs to see how these cells responded to various chemicals (simplified wording for what Dr. Bindu described--I guess she assumed I had medical knowledge when she went into in depth description of the types of cells used as controls, etc.).

Even with the old-school radiology (films) department and the dilapidated rooms, the one thing CHO had over Duke was food delivered to the room while we waited. Jaden received a nice lunch of a hot dog, Goldfish, chicken noodle soup, water bottle, etc in bags that resembled those of a certain fast food chain Jaden loves to frequent. He was actually a bit disappointed to learn it was not what he had imagined, but I was impressed that he actually got the bag lunch (I guess I notice food more than most people--definite brownie points for this effort!).

Since Jaden takes his FK-506 at 9am, we were not able to draw a level today. I was to bring Jaden back on Wednesday morning for this set of labs. I asked if we could come to clinic on Monday mornings moving forward, so we could take care of all the labs and the clinic appointment at one go round and the nurse happily accommodated my request.

The nail in the coffin for CHO as far as Jaden is concerned was when the nurse brought in the "duck masks" for Jaden. These were the same ones I wore overnight during Jaden's Ribavirin treatment at Duke and they are not comfortable. The nurse told us that CHO recommends these masks over Jaden's little Mickey Mouse ones because they actually filter out the air and don't just block it from the front like his current ones. Jaden would be required to wear it any time he goes outside, even if no one is around. Jaden's response "I guess I'm not going outside anymore!". Needless to say, he was not pleased with his new clinic and couldn't wait to get out of there.

We finished up at CHO and I took Jaden home. I swapped out the kids in the driveway so I could take Devin to his Tae Kwon Do lesson. I'm doing my best to pay special attention to my oldest and to make up for some lost time. Once the lesson was complete, I dropped Devin off and picked up Gia, who now screams when she sees me pick up my purse and keys. I had asked the boys for their dinner preferences for the week so I could do a grocery store and Trader Joe run and stock up. I brought Gia along to get her out of the house and show her I wasn't leaving her yet again.

Of course, social butterfly that my little one is, she waved and said "Hi!" to everyone at each store. She had a blast and we got home a little later than I wanted. Mom had made the boys their taco dinner and I plated it up for each of them while I took Gia up for her bath. It was then bath time for Devin. I was able to snuggle with him for a bit and calm his fears about some standardized testing in school this week. He always over-thinks things and was concerned about his current teacher letting the class know that these tests are evaluated by the teachers in 5th grade to see where students should be placed. I had to assure Devin that he would do well and that he just had to focus on not making silly mistakes. I tried to downplay it and assure him he'd do fine.

It was then back downstairs to give Jaden his night time meds and eat dinner. He stayed up with Guri and watched some sports as I caught up on email and finished my blog. It was an exhausting day overall, but I'm hoping we'll all soon get into the rhythm of things. I've got to figure out how to run this house like a well-oiled machine. Right now, we have lots of squeaky parts!

Day +284: Home At Last!

2010-04-18T22:24:00.000-07:00

I know it's been several days since I posted. We were having Internet issues at home and I had no access until now.

Let me start with our incredible trip home. The wonderful people at Heinz corporation treated Jaden like royalty (and I got to tag along for the ride). It all started when we arrived at Landmark Aviation in Durham and were met by the pilots of the small jet that took us to Pittsburg. They were so warm and welcoming and spent time talking to Jaden. It was part of the Corporate Angels flight, so we were the only 2 passengers on board. The pilots joked how Jaden would REALLY enjoy the bigger jet that took us home.

Once we arrived at the hangar in Pittsburg, we were met on the tarmack by a shuttle van that took us immediately to the Heinz hangar. There, once again, we were met by one of the pilots who escorted us into the lounge area. Once in the lounge, we were greeted by the flight attendant Marsha Lee. She was incredible gracious and welcomed Jaden with a gift bag full of Heinz logo wear, including a red baseball cap which incidentally matched perfectly with his outfit! The gift bag also included 2 movies she had hand-selected especially for Jaden: Alvin and the Chipmunks, the Squeakquel (which Jaden had wanted to see for some time) and Mr. Majorium's Wonder Emporium.

Jaden and I were escorted on to the Gulfstream 4 jet while our bags were taken to the rear of the plane. Captain Jerry Pearson and Captain Greg Gillooly showed Jaden around the cockpit and took lots of pictures as he "flew" the plane from the pilot's seat. I have several of my own, which I will come back and post once things settle down at home. Captain Jerry even asked for my email so he could send me the pictures he took, which were waiting for me in my inbox the next day!

As for the interior, let me just say WOW! is an understatement. We're talking cushy leather sofa and lounge chairs, which Marsha told us all convert to full beds for trans-Atlantic flights, along with paneled wood interior detailing. Marsha got Jaden cozy on the couch (diwan) with a pillow (think down, not synthetic) and blanket and turned on the chipmunks movie for him while we waited for the corporate executives to arrive. We would be traveling with the CFO and the officer in charge of investor relations. Both were incredibly friendly and greeted us with genuine warmth. Of course I thanked everyone profusely considering we would not have been able to make our trip home had it not been for the kindness of this group.

As we took off and reached a cruising altitude, breakfast was presented in the finest china. I'm not talking about reheated airline food, I'm talking about made-to-order egg white & veggie omelets with yogurt parfaits served in a wine glass. I was in HEAVEN! Even Jaden enjoyed his Cheerios in a magnificent china bowl. I could definitely get used to traveling in this manner. As a matter of fact, I don't think I'll fight Dr. Prasad for our corporate flight back to Durham for Jaden's one year studies! You should all experience this mode of travel at some point in your lives--it's well worth the expense. The Corporate Angels representative was spot on when she said once Jaden travels in a jet, he will never want to go back to the commercial airlines.

We arrived at a hangar near SFO in record time, although it was later than scheduled due to strong headwinds and the flight path into SFO (we circled over Nevada for a little while!). Guri was waiting for us and Jaden ran and jumped into his arms. I wish I had my camera out! Even though Guri did not bring a Hummer limo as Jaden requested, he did decorate the entire house with Devin's help in balloons, streamers and lots of "Welcome Home Jaden" signs. It was a sight to see!

Jaden was thrilled beyond words to be home. After being in an apartment for 10 months, the house looked so BIG and roomy! We took our time reacquainting ourselves with the once-familiar surroundings. I saw Gia, who greeted me with the loudest "MAMA!" and the biggest hug I have ever received. It was good to be home at last!

I was equally thrilled by the hug Devin gave me when I picked him up from school. I met several good friends on the way to school and it felt so good to be among familiar surroundings.

I wish I could say the day went smoothly, but Jaden insisted on playing baseball with his dad and big brother later that evening and ultimately ended up with a low-grade fever. I was nervous as heck. I knew I was exhausted after the sleepless night and long travel day, so I couldn't image how Jaden must be feeling. Add to that fatigue the physical exertion of playing ball and no wonder his little body responded as it did.

I was in a panic. I hadn't even met the team at Children's Hospital Oakland yet, but thankfully I had introduced myself and Jaden via a phone conversation with the nurse practitioner. So, when I called Sherrie to let her know about Jaden's fever, it wasn't completely a "cold call". I had a feeling it was fatigue and since his fever did not reach the threshold of 100.4 (although it did have this reading at one point, but Guri and I decided to continue giving Jaden fluids and the fever came down on its own), we did not have to go in to the hospital. Sherrie did send out an email to the on-call team to let them know about Jaden and pass along his discharge docs from Duke.

The next few days I was extra careful not to let Jaden over-exert himself. He was so bored and frustrated. He probably thought coming home to San Ramon was his ticket to freedom, but little did he know it was just a larger cage. He is still very much restricted in what he can do and since I am the gatekeeper of his activity levels and therefore say the word "NO" quite frequently, I am not in Jaden's good graces (not that I have been the past few months anyway!).

Soon, Jaden was running around the house and back to himself. Once he realized that he was limited to the house, our backyard, and the "grass park" or greenbelt next to our house (provided not too many kids were there), he became quickly bored and belligerent. "I can't DO anything!" He cried often and rebelled quite a bit. I had to hold firm until of course dadaji came to town.

Today, Jaden convinced his dadaji (Guri's dad) to take him to Target and came home with a bag full of Legos and other treats. He then told Guri his baseball glove didn't fit and ended up with a new one from Big 5 Sporting Goods. What I didn't know was that Jaden and his dad played baseball in the back yard for a bit. This was followed by a play date at the "grass park" with Jaden's best friend Josh.

By the time we got to the park, I could tell Jaden wasn't feeling like himself. Considering he hadn't seen Josh in nearly a year, Jaden was very quiet. They played soccer for a few minutes, but Jaden just wanted to sit down. He then said he was cold and went into the sunny part of the sitting area. FLASHING RED LIGHT!!!!

About 45 minutes later, Jaden asked to go home. I was already concerned, but now I was downright paranoid. Jaden went home and said he was cold and very tired. I had him sit down on the couch and gave him a blanket. Guri and I began giving him fluids and took his temperature. It was over 100. I really panicked at this point. Guri suggested we continue giving him fluids and recheck it in a little while. Well, after about an hour, the temperature actually went up to 101! Concern turned to panic as I prayed frantically that this was just overexertion and that Jaden would rebound quickly as he did a few days ago. I promised God that I would watch more carefully over him and keep him safe, if he just made Jaden better this one time. I knew I could not go through another admission this soon after returning home.

At a minimum I knew I had to notify the Hematology/Oncology doctor on call. She was wonderful and was very comforting on the phone. I asked about their protocol and she said she had received the update from Sherrie via email. At CHO, they generally admit a child into the hospital with a fever over 100. The child is kept inpatient over 24-48 hrs while IV antibiotics and fluids are administered and until the blood cultures results are known. Hearing this made my heart stop. I DID NOT and COULD NOT go through another hospitalization. I just didn't have it in me. I prayed again and again for Jaden's fever to come down. I told the MD on call that he did not have any other symptoms and I felt he was just fatigued. She agreed to let me continue with his fluids and call her back when I retake his temperature, which I planned to do at 9pm when I gave him his evening dose of medication.

I was a nervous wreck the entire time. Guri stayed by Jaden's side as he slept in our bed. He blamed himself for overexerting Jaden during baseball. He worried about how our son would make it through the daily grind of second grade when he seemed so weak. We checked Jaden's temperature multiple times, finding a huge disparity between the ear and axillary (under arm) readings. I was pleased that ultimately his fever was coming down, although not by much. By the time I woke him up for his 9pm meds, his ear reading was 100.9 and his axillary temp was 100 even. I notified the doc of this update and she said that she felt okay with Jaden at home since his axillary never reached 101. As long as we kept a close eye on him and called back with any changes, she would just note our discussion and release us to the clinic visit tomorrow. She knew Jaden would have labs drawn at that time and a very thorough examination, given it was his initial visit at CHO.

I thanked God and continued to pray for Jaden's fever to go down. I wanted to see my little guy back on his feet and running around the house. I think, at a minimum, this little scare opened our eyes once again to just how fragile Jaden's health is right now. It also woke Jaden up to the reality of pushing himself too much. I could literally see the fear in Jaden's eyes of being taken to the Emergency Room at CHO tonight. He kept saying that he was "fine" when asked how he was feeling, even though it was painfully obvious that he was not feeling this way at all.

As good as Jaden looks physically, his little body is far from "normal". I have to remind myself that he is still on immunosuppressants and highly susceptible to infections. It's time to play "bad cop" again and I plan to take my job very seriously. I know Jaden doesn't know or understand all the limitations which are placed on him right now, but I plan to keep him safe and infection free, even if means hearing things like "You're the worst!" or "It's all YOUR fault I'm stuck here!". I'm okay with it, as long as Jaden is safe and healthy.

Day +278: It never ends...

2010-04-12T20:21:00.000-07:00

Jaden's last workout with Lynn!

Sunday was very low key. I wanted to ensure that Jaden rested and kept his activity (and potential fever) to a minimum. I thought I had conquered most of the packing and clean up, so I took a little time to hang out as well. Bad idea....

We spent the morning today getting ready for Jaden's lab draw in clinic. He was so incredibly nervous. When the time finally came to draw from his port, he started to have a meltdown and literally screamed and sobbed. He wanted to see the needle and then was even more afraid. I kept telling him the needle would go into his port and not into him. I tried to remind him about the port he played with in the pre-op appointment, the spongy top, the tubing..it was not helping at all. Jaden acted like he was hyperventilating and clutched on to me and pleaded. Even the nurses tried to explain what was going on. They were so very patient with him and let him take his time and deal with his anxiety.

Ultimately, we had him lie down on his back, I was holding on to him while one nurse prepped the site and the other held his hands. She very calmly explained that the reason she was holding his hands was so that he wouldn't grab at the sterile site, much like when they cleaned and changed his dressing. Nurse Jennifer went on to explain that since he just had his port inserted on Wednesday, he may be a little sore which was why he felt a little tender when the other nurse felt around for the opening of the port beneath his skin.

After it was all said and done, Jaden admitted it wasn't bad at all. Nurse Jennifer reassured him that even the soreness he felt would get better as the port site healed. All I could think of was "Thank GOD he decided on getting the port!". I couldn't even imagine what it would have been like if this episode revolved around an actual poke in the arm to draw blood (and then repeat that by the numerous times he'll have to be poked for lab draws in the coming months!).

Nurse Jennifer gave me some insight into the size of needle, what type and how much Heparin and Saline is used to flush ports, how often it should be done in clinic, etc. I took notes on everything and felt much more informed about the device, which will help me when it's accessed again at Children's Hospital Oakland. I pray the nursing team there is as patient and loving as these nurses have been.

Melissa had driven us to clinic this morning but since they had just arrived, we decided to walk back to the apartment. It was a beautiful day and I kept reminding Jaden to soak it all in because in another day we'd be begging to see the sun. Guri tells me it's been pouring back home. I'm so enjoying the warmth here that I'm not looking forward to the weather at all!

As Jaden walked, all I could think of was Dr. Prasad's comments on Friday. Jaden was feeling good and looking great. I looked at the sun and thought about what Dr. Prasad had said about keeping him protected. Sun exposure can lead to Graft vs. Host Disease so we have to use sunblock, hats, etc. I had forgotten to bring a hat with us to clinic for Jaden and was feeling really bad about it. Like I said, the man has made me completely paranoid about everything...Melissa and I were talking about how we thought the transplant was supposed to let the boys be free of restrictions and live a better quality of life. At this point, there were nothing but restrictions. I guess that too will come in good time...

Once back at the apartment, I got Jaden his lunch and started sorting and packing again. There is still so much stuff. It was pouring out of every cupboard, every shelf, every nook and cranny of this place. Lyndsey from Family Support said she's swing by and pick up the stuff I had set aside for donation. She later told me that there was an apartment that was used by the Ronald McDonald House here in The Lofts. The family there could use some of the food items and supplies. I met them downstairs in the lobby and was happy to help. We then loaded up the rest of the stuff in Lyndsey's convertible (?!) and away she went.

Lynn, Jaden's physical therapist, showed up just as we were loading up the car and I told her to go ahead with their session. I found them in the Aerobics room and took the opportunity to go up and grab a quick lunch while they finished up. Lynn and Jaden came back upstairs and Jaden and I presented her with our cards. She also had a plastic racket and ball set for Jaden (one more thing to pack!). I took some pictures and we finished the session. Jaden was making his goofy faces so Lynn had to tickle him with her hand to get a good smile/laugh out of him for their picture. One more goodbye to our friends in Durham.

Jaden started to play video games as I frantically packed the rest of the things. The furniture company had called and they were coming about 11am. I had scheduled the cleaning ladies to come at 12:30pm so I could do the final walk through with the apartment about 2pm. This may be cutting it close, but I knew we also had to be in clinic to see Dr. Prasad before we could head over to the hotel.

I continued to empty cabinets and drawers. I ended up shipping 2 more boxes back home, even after all the donations were done. Lyndsey was going to come back tomorrow to pick up the toaster oven and anything else I could dig up by then. I literally was packing and cleaning up until 11:30pm. I was so exhausted and knew I would need to get another early start tomorrow to finish up before the furniture people came to get things rolling. I only had 2 very small suitcases to work with and let's just say I did some very strategic packing!

If all works out, tomorrow should be a very busy but otherwise easy day. I don't think I'll take a breath until I reach the hotel and ultimately am on the plane. I want to make sure I keep Jaden healthy and get everything and everybody on board that jet!

So much for catching up on my sleep the past few days...it's all good. I can't wait to see the baby and Mr. Devin and of course my hubby! One more day and then it's lift off!

Day +276: Are we ready for the REAL World?

2010-04-10T17:27:00.000-07:00

Keeping busy while waiting for Dr. Prasad in clinic

Jaden looks so much like himself again!

Jaden with Dr. Prasad

Saying goodbye to our favorite physician!

Tracking down Dr. Priti on 5200!

She will make a great transplant doctor one day!

Gia with her girlfriends in the Leasing Office

The bulk of yesterday was spent in clinic. Jaden had to redo his Pulmonary Function Tests. I was ON the tech about technique. I'm sure Jaden is not doing something correctly because his PFTs never correlate with how he looks and feels. The tech told me that the tests are definitely effort dependent, so this time I was watching Jaden and having him seal his lips around the device and give it his all. Results showed improvement. Dr. Majure, the pulmonologist, will review all Jaden's scans and PFTs and then come up with a treatment plan. I'm hoping he actually examines Jaden over the next day or two so he has a real idea of the PERSON behind the data. I would feel more comfortable taking this step with Dr. Majure before we are transferred to the pulmonology team at Children's Oakland.

The tests ran for over an hour and Jaden was so tired and cranky. He started to cry and scream that he wanted to go home. They did a complete evaluation with all kinds of testing pre and then post an albuterol treatment. I noticed there was no change in data with the breathing treatment, but Dr. Prasad later reminded me that Jaden is on the breathing several times a day, consistently, so he already has the stuff in his lungs.

After testing, we headed up to the 4th floor clinic. I had bought some Dunkin' Donuts for the front office staff as well as the PBMT nurses in the back. They have been so wonderful and really treated us like family. I will truly miss this place. Everyone was so excited that we were finally going home, but for me it was bittersweet. I am completely ready and elated to be going back to San Ramon. However, I am so nervous about leaving Durham and our Duke family. The folks have truly been a family for us. Ever since we arrived, we have been accepted with open arms and big hearts. Not only is this a phenomenal medical facility but it is also unsurpassed in its quality of care. Everyone from the doctors to nurses, family support, social workers..you name it...EVERYONE is highly skilled but more importantly they truly make you feel well taken care of. It's not many places that can boast exceptional protocols AND bedside manner to boot! My hats off to Dr. Kurtzburg for leading such an amazing team of people with such a well-rounded program. We are blessed to have Jaden treated here!

Okay, I think you get the point. Needless to say, I was teary-eyed and choked up many times yesterday. We finally did see Dr. Prasad. He commented on how FABULOUS Jaden looked. As a matter of fact, he commented on how Jaden looked HEALTHY--not like he'd been through a MAJOR medical procedure.

He handed me Jaden's labs, which still looked great. One point Dr. Prasad did make was in regards to Jaden's cortisol levels. They were very low (.4 where the reference is 5-25 mcg/dl). Dr. Prasad said that Jaden's adrenal function was still not normal from all the steroid use. It was CRITICALLY important that we give Jaden a "stress dose" of hydrocortisone should he present any abnormal symptoms (fever, vomiting, loose stools, etc). He mentioned how one child recently came in (4 yrs post transplant) and was unconscious. His parents had forgotten to give him his hydrocortisone. Dr. Prasad stressed that if Jaden gets sick, he will need a stress dose of hydrocortisone or his systems will shut down, one at a time and he will be unconscious. This scared the ^%#$@&@& out of me. I'm scared to death about going home without our security net down the street and now this piece of information! Dr. Prasad also mentioned that if Jaden is vomiting, he will not be able to keep the meds down and we will have to administer the stress dose via intramuscular (IM) injection. I was nearly ready to pass out myself. Luckily, Guri was with me and took good mental notes as well.

We moved on to the transition plan. Dr. Prasad had spoken to Dr. Walters at Children's Oakland. Dr. Walters was ready to accept Jaden into his care with the understanding that HE (not Dr. Prasad) would now be Jaden's primary doctor. All major decisions would be made by him and stressed that we needed to understand that. I knew Dr. Prasad had know Dr. Walters PERSONALLY for a long time. I was hoping they would consult on Jaden's case.

I asked Dr. Prasad if Dr. Walters was on the same page as him. In short, I got the impression that Dr. Walters is not as conservative as Dr. Prasad (is anyone?) and he may do things a little differently. I told Dr. Prasad that as long as he was comfortable with Jaden being in Dr. Walter's care, I was fine as well. Children's Oakland was also logistically easier for us than UCSF, especially in case of emergency. We all agreed to move forward with Dr. Walters and Dr. Prasad said he would confirm the transition to CHO.

The immune function testing results were not in yet and that was of most interest to me. So in the meantime, I asked about protocol at home and who Jaden could see, when he could visit with friends, if he could go with me to pick up Devin from school, etc. Basically, we need to use good judgement. We need to limit visitors to just family and maybe a close friend. Jaden must wear a mask and wash his hands. Visitors must also wash hands and be healthy. They cannot have been sick or been around anyone that was sick for 5-7 days. In other words, once there are NO more symptoms, the visitor must wait an additional 5-7 days before coming in contact with Jaden. This is very important. Dr. Prasad kept stressing that Jaden CANNOT get a respiratory infection. His immune system is immature, he is on immunosuppressants, and his lungs would not be able to take it. IT IS CRITICAL we keep Jaden healthy, especially from a respiratory infection standpoint.

Okay, this again scared the SH*T out of me! I'm now officially afraid to go home. Afraid to expose Jaden to ANYBODY. Afraid to take him out of the house. Afraid to go out myself. Afraid Devin will bring something home from school. Afraid Guri will bring something home from one of his patients....just afraid of EVERYTHING.

How will I transition my son home, back into a life of normalcy, when I know how weak and susceptible he is to infection? Jaden looks so much like himself physically now that it will be that much harder to remind ourselves that he is still very fragile. How will I let him see the friends he longs to see so badly, the friends I have been waiting to see for nearly a year, the extended family we all missed so much?

Guri and I discussed it and decided that we will literally keep Jaden in hiding at home, with no visitors, until at least the rainy (flu/cold) season has passed--probably until the end of the school year. Jaden has been through too much and we just can't risk it. He has the playroom downstairs and the backyard with his basketball hoop to keep him busy. I can also take him to the little "grass park" next door when the kids are in school and kick a soccer ball around with him or throw a baseball with him. It will be hard for all of us, especially Jaden who is tired of being isolated and alone, but it will be for the best.

Dr. Prasad wrapped up by telling us that he wanted Jaden to come in for an FK-506 level on Monday and a check with him on Tuesday afternoon, when he was in clinic. He wanted to examine Jaden one last time before we left early Wednesday morning. Monday was great because I wanted someone to remove Jaden's dressing and check his port site to make sure it was healing. However, I was nervous about having his port accessed so early after it was inserted. The nurse practitioner assured me it would be fine. I would need to remove the dressing myself and put on the topical Emla numbing cream about an hour before we came in. This would ensure that Jaden didn't feel the "poke" when the port was accessed.

This all was fine, but Tuesday afternoon for a check-up? You're kidding, right? As it is, I have the furniture pick-up, the cable disconnect and modem pick-up, the cleaning, the apartment walk-through...all on Tuesday afternoon. Now we have to go to clinic? To top it off, Guri returned the rental car on his way back to the airport this morning, so we are car-less! Once we return the apartment keys, we have to get to our hotel near RDU. Luckily, I asked Melissa and Chris and they were kind enough to say they would take us to clinic on Monday with them and also drop us off at the hotel on Tuesday afternoon. Thank you guys! I owe you one!

We ended our clinic day with lots of hugs with Dr. Prasad and giving him the notes/cards we had written for him. To my surprise, Dr. Prasad would not accept the gift certificate we had gotten for him to a local hotel/restaurant. He stressed that the cards were what he really wanted, especially the one Jaden wrote for him (which I must say brought tears to my eyes--Jaden thanked Dr. Prasad for curing him of CGD!). Try as hard as I did, I couldn't convince him to keep the gift. I now had another dilemma. Guri and I wouldn't be in Durham alone to enjoy it. Who could we present it to now?

We also went to 5200, where Dr. Priti (the Fellow) was on duty. We said our goodbyes to the nurses and gave Dr. Priti hugs as well. She has been a wonderful asset to Dr. Prasad. She really went from being his shadow to taking full responsibility for Jaden (seeing us before Dr. Prasad came in) in the months that we've been here. I'm sure she will do well in whatever career path she choses from here (possibly another Fellowship, I hear).

On our ride home, I started thinking about what Dr. Prasad had said in our visit. The more I think about the hotel, the more nervous I get. It makes sense to be close to the airport on Tuesday night since we need to be at the airport by 4:45am Wednesday morning (and there is NO WAY we're missing this flight!). However, all I can think of are all the hotel germs. Germs on the TV remote, germs on the chair, germs on the linens, bed sheets, etc. I can take my box of Lysol wipes, but what about the sheets? Okay, I'm seriously paranoid after our discussion with Dr. Prasad!

To top things off, Jaden told us he wasn't feeling well. He kept saying he was hot, even in clinic but when the nurse checked his temperature, it was normal. He started running a low-grade fever when we got home and I went into panic mode. I tried to stay calm, assuring myself it was just fatigue. He had been running around with everyone and getting up super early. All he needed was rest and some Tylenol. Guri kept checking his temperature and luckily it was normal by 11pm. I prayed and prayed all night that Jaden would be okay. I couldn't take a re-admission to the hospital and miss our golden opportunity to go home. God was kind and Jaden woke up feeling fine this morning.

The rest of the day was spent packing and getting Guri and the crew ready to leave this morning. Once again, every single suitcase was packed to near bursting. We even had to ship 2 boxes home. As it is Guri is a nervous traveler. He has to be at the airport way early (we've had many a meal at SJC and OAK airports!). He stresses about getting everything checked on, getting through security, being at the gate, getting on the plane...you get the drift. With three very-full suitcases, Devin, mom, Gia, a stroller, 2 car seats, a rental car to return, I have to say his stress was justified this time. Guri insisted on leaving home at 8:15am--for a 10:45 flight!

This morning, we were both up at 6am. Guri showered and got the car packed. I stuffed as much as I could into the last suitcase, packed Gia's diaper bag, and got her fed and dressed. She is such a daddy's girl. All day it's "dada"! Guri is loving it. I was getting a little nervous about not seeing her for 4 days and then Guri curtly reminded me that he has missed out on most of her first year of life. Okay, point well made. He is looking forward to spending some time taking care of her and enjoying her little habits (like when she raises her arms and opens and closes her hands in a "pick me up" gesture). She just needs "dada" near her and I know she'll be fine. It was great that she got to spend a whole week with them before she goes home. It will make the transition for her so much easier.

We finally got them out the door as scheduled. I started to miss Gia immediately, but kept reminding myself it was only 4 days (and counting). I was worried Guri's mom would be completely run down by then--the baby is such a handful. Hopefully, she'll be able to get some help. I have forbidden my mom to see or come near them since she is in the middle of a full-blown flu episode. She asked if she could stand outside and wave to Gia and say hello to everyone when Guri came from the airport to pick up the car, but again, I'm not taking any chances. Call me crazy, but I cannot risk it.

I spoke with Guri and he said Gia was a terror on the plane. She was all over the seats, taking magazines out of the pockets, and generally creating chaos. It's tough to keep a 14 month old in a confined space for that long. But, we have to admit, she is otherwise a very easy baby. She loves people, adapts to situations easily, and is just a joy to be around (when she's not throwing a tantrum and smacking people!). Guri was thrilled to bring her home, although he did say it was cold and raining (big change from the 80s we're lucky to enjoy here in Durham!).

On my end, I spent the day cleaning out closets, pantry, and anything else I could find. I wanted to keep just the bare minimum, things Jaden and I would actually use or consume over the next few days. I knew once Monday rolled around, things would get crazy and I wanted to be on top of everything.

In the afternoon, with the weather as nice as it is, the pool was FULL of residents (ie college kids). They were very loud and screaming. I looked out there was beer everywhere and lots of "games" involving it. I suggested to Jaden that we take a nap--good time to catch up on sleep. He resisted but ultimately fell asleep as I read a magazine. He took a good, nearly 3-hour, nap. It was tough to wake him up once he fell asleep, but by 6pm I thought it was time to get him up.

Jaden asked for cookies for his snack and I took it as a good opportunity to get through the cookie mixes we had left in the pantry. This is not helping my weight loss or diet whatsoever! I later gave him dinner and took a nice hot shower. We planned to wind down and watch some TV before finally turning in.

With Gia back home, the King size bed was calling my name--in the bedroom with the ACTUAL door, no less! Jaden and I were planning a long, restful night. We both deserved it!

Day +274: Where did all this stuff come from?

2010-04-08T18:56:00.000-07:00

I've been frantically cleaning every closet and spare space over the past two days. It's incredible how much stuff we've accumulated over the past 10 months. We already sent off one fully loaded suitcase with my mom last week, the van was packed to the point of bursting and we dropped off bags and bags of things this afternoon to PBMT Family Support in hopes they could distribute it between the Durham Mission, Ronald McDonald House, and 5200. Even with all this STUFF gone, we have a ton more still in the apartment. Even between the three remaining suitcases Guri and crew will take back, we still have overflow! I think we'll be shipping some boxes back as well! How did all these things get into our apartment? Where did all this stuff come from? I'm truly at a loss...

The bulk of yesterday was spent in Jaden's surgery. I was very nervous because it took much longer than anticipated, but everything worked out and Jaden is recovering well. He has some soreness at the insertion site and really complained about his throat hurting yesterday (they usually intubate him because of all his previous breathing issues), but things seem to be better today. He didn't even ask for Tylenol today. It's bizarre not seeing those three lines dangling from his chest and having to keep them out of Gia's reach. Jaden is supposed to keep the dressing on it for 3-5 days and then I can remove it. Dr. Paddock told us that since Jaden is still on steroids (hydrocortisone), the normal healing time will be prolonged and it will take several weeks instead of the usual 7-10 days. I'm just looking forward to giving him a shower without having to tape and seal his lines and dressing. It will be so much easier! Jaden is not supposed to get the area wet for several days, so I'm holding off on his shower until we get home (just to be extra safe). I'm sure by then, he'll be ready for a long hot shower! With the external lines gone, Jaden can now shower daily. This seems inconsequential, but it's a major milestone for him. I'm thrilled that we've crossed off yet another hurdle between us and going home--we're now one step closer!

Today was crazy in getting things packed and cleaned up. Tomorrow will be spent in clinic and Jaden also is scheduled for yet another round of Pulmonary Function Testing in the morning. I'm convinced there is some technical difficulty in administering these tests. If you look at the results, you'd think Jaden was having all kinds of lung issues right now. Yet he seems to be doing better than ever. When they check his pulse ox in clinic, he's usually at 97% or higher and I don't see any visible issues. Hopefully Dr. Majure (the pulmonologist at Duke) will be able to sort through all the scans and tests results and come up with a treatment plan for Jaden before we leave Durham.

I have come up with a whole list of questions for Dr. Prasad. It contains everything from "how much longer does Jaden have to wear his mask?" to "when/how many visitors can Jaden have at one time?" to protocols for emergencies. I'm so so nervous bringing Jaden home but know we need to take this step. We can't be in Duke's cocoon forever, can we? We can't wait to see everyone when we get home, but honestly I'm so nervous, I'll probably be ultra careful when we first get home. So, as much as we want to reconnect with each of you, we'll probably be hibernating for a while. Given this past week with our gang together, I'm anticipating some readjustment time will be needed as we all regroup as a family unit. I also know it's still raining in San Ramon and flu season is not quite over. I will be ultra protective of Jaden during this time. So, please don't take offense. As soon as he adjusts to being home again and the weather (and therefore threat of viruses) clears, we will be getting in touch with all of you! Really can't wait! We've just come too far and overcome too many obstacles to be lax at this point.

That's it for now. I'll update tomorrow after our final (sniff! sniff!) clinic visit at Duke with our favorite primary doctor. Then it's four days of just me and Jaden until we're finally home! I'm getting goose bumps just thinking about it! Still praying everything is on track...

Day +272: We're Going Home...I think!

2010-04-06T19:43:00.000-07:00

Mom and Dad--Dinner at Ruth Chris near Southpoint

Me and my crew, sans the photographer of course!

Helping Dadaji blow out the candles

Celebrating the BIG 8-0!

BEFORE....Getting ready for his first post-transplant cut!

I wish we had these sports places at home-Jaden was in heaven!

AFTER...as close to Kobe as he's gonna get!

Double the fun--dadaji had his haircut too!

Celebrating with ice cream!

Quiet time with Gia...Devin really dotes on her!

We had a great dinner at Ruth Chris steakhouse with Dad and the family on Sunday night. They were so wonderfully accommodating. I had called ahead to tell them about our situation and ask for a table away from everyone. They really went above and beyond by giving us our own private dining room. We were the only table being served in that room and had our own staff. FABULOUS! Needless to say, Guri left a very well-deserved hefty tip! I would highly recommend this place to you locals--the food and especially service was outstanding!

Monday was busy with Jaden's nine month tests. Devin came along and was very patient going from floor to floor with us. He even carried my laptop case and Jaden's snack box. I think he was trying to earn some brownie points to earn back his video games! We finished much earlier than expected and headed home for lunch and time by the pool.

I received an email from Dr. Prasad last night regarding Jaden's lab draws yesterday. Apparently one of the tests was drawn in the wrong tube and we would have to go in to clinic this morning and redo them. We got to clinic later in the morning and of course there was a good wait time, but I got to see a few friends so it wasn't all that bad.

Our nurse came in with two tubes and seemed a little unsure of what or how to draw. I quickly went into my email and made sure she was drawing for the right test. She said there were some instructions about drawing for a control and since she couldn't find specifics, she would draw TWO tubes from Jaden just to be safe. I told her that we had the DHR test done before and I was pretty certain that she needed a sample from Jaden but also a sample from a control (ie a person not affected by the disease). The nurse pushed on for drawing 2 tubes from Jaden and I asked that she go confirm with one of the doctors or nurse practitioners on duty today. She came back with a sheepish grin and of course confirmed that my hunch was correct. Thank goodness! I would hate to have to come back a third time and redraw for this test, especially since Jaden's line is coming out tomorrow.

Speaking of his line, Jaden will have his line removed and his port placed tomorrow morning at 11:30am. We are to arrive at CHC by 9:30am. Dr. Prasad called to talk about a few issues, one of which was an air bubble that showed up in Jaden's chest CT on Monday. I'm not sure why air is leaking from his lungs to the central part of his chest, but Dr. Prasad doesn't seem too concerned. I questioned whether this would prevent Jaden's procedure tomorrow because the last time we saw this on a scan, the anesthesiologist was nervous and wanted to wait. Dr. Prasad said he had spoken with Dr. Eck today and the doctor would review Jaden's scans and discuss with Dr. Prasad in the morning. I'm hoping there are no issues and we can move forward with the procedure.

Dr. Prasad also told me he has finally been able to get a pulmonologist at Duke to treat Jaden. Dr. Majure, one of the doctors I've heard wonderful things about here, will be reviewing Jaden's scans and PFTs and will develop a treatment plan for him. Dr. Prasad said that Dr. Majure also wanted Jaden to repeat his PFTs from Monday because they seemed very low. I told Dr. Prasad that it may just be technique and because Jaden doesn't get good results, the techs have him doing the test multiple times, leading to a poor end result. I know Dr. Prasad wanted to have Jaden set up with a treatment plan and initiate therapy here in Durham and I completely agree with him. I'll taken Jaden for a retest of his PFTs on Friday and hopefully we'll have a better outcome.

Dr. Prasad has also been following up on Jaden's transition to Children's Hospital Oakland with Dr. Walters. Apparently Dr. Walters is very reluctant to accept Duke patients because they are so "in bed" with Duke that they prefer all decisions be made by the team at Duke, leaving Dr. Walters to simply follow instructions made by another transplant team. Dr. Prasad said that he will personally call Dr. Walters, whom he knows very well, and see if he will take Jaden under his care. If not, he'll go to Dr. Mort Cowan at UCSF for Jaden's follow-up care.

Once we came home from clinic, everyone had lunch and Guri took the troops out for some fresh air. It was almost time for Gia's nap, so I decided to stay home with her. I wanted Jaden to go get a haircut because his hair is growing back so crazy. It's all over the place and completely out of control. I had already cleared it with Dr. Martin who I saw in the hallway at clinic today. I told Guri to ensure that the instruments were sterilized extra-well and that the person cutting his hair wash her hands before starting. Guri took Jaden to Sports Clips and even Dad got in on the action, getting a trim himself. Jaden insisted on getting a Kobe Bryant haircut. I have to keep telling him that he is Indian and will never have the type of hair Kobe or any of his other favorite basketball players have. Jaden quickly gave me an ultimatum "It's Kobe's hair or a mohawk with different colors. You chose!". Okay, Jaden, the Kobe cut sounds great! With all the excess hair on his face removed and a nice neat cut, Jaden looked like his old self again. I'm sure he was relieved as well. Of course everyone celebrated with a trip to Cold Stone. Jaden isn't allowed to eat from open containers like those in ice cream parlors, but once again the place was so accommodating. They offered to open up a new container of Cotton Candy ice cream from the freezer so Jaden could have some.

Back home I received the best news ever. Corporate Angels called and although they had told me yesterday that the April 10th flight from Greensboro to Oakland was full and not open to medical patients, they informed me today that there was a flight from Pittsburg, PA to San Francisco leaving next Wednesday, April 14. It left at 7am from Pittsburg, which meant we'd have to leave from Durham around 5am. Corporate Angels actually asked if it was OKAY for us to travel that early!!! Are you kidding me? I'd pull an all nighter any time if it meant getting back to my home and familiar surroundings.

A little while later, the representative from Corporate Angels called and said Jaden and I were all set for April 14th! I could hardly believe my ears. She gave me all the details: Corporate Angels would use their own plane (via Net Jets) to get us to Pittsburg. From there, we would be boarding a Gulfstream jet to SFO. This plane can accommodate 13 passengers, but there will only be 2 executives and the two of us on board! She went on to say that the corporation had asked what Jaden prefers for breakfast! Seriously? A complimentary ride on a jet and breakfast too? This was too good to be true! I gave them Jaden's normal breakfast (a hard boiled egg and maybe some Cheerios) for now anyway, it changes every few weeks. The rep told me that the corporations are really good to the kids they take on board. They have inflight movies, games, and were even preparing a gift basket for Jaden! I decided to keep this info from Jaden so he could be surprised with all the cool things he would see and do that day. Corporate Angels told me that once Jaden rides on this jet, he will not want to fly commercial airlines again. I don't doubt it! After the star treatment, who would?

As soon as I got off the phone, I hustled to get the wheels in motion for the remaining few items. The van was shipped home today and all the oxygen equipment was also returned. I called the furniture rental people to set up a time to have everything removed, scheduled the utilities shut down, and also set up a final walk-through time with our apartment building. As of now, everything should be taken care of on Tuesday. Once we have the final walk through with the apartment and turn in our keys, Jaden and I will head to a hotel at RDU. They have a shuttle and will get us to the airport by the 4:45am time we were given on Wednesday morning. I'm just keeping my fingers crossed that everything goes smoothly from here on out and there are no more setbacks. I'm determined to get us on that plane next week!

The timing actually worked our perfectly. This gives Jaden a good week to recover from his procedure before we put him on a plane. It will also give Guri and mom a chance to settle back into the house with one more addition (Gia will be going back with them on Saturday). Guri will then come back and pick Jaden and I up around 8:45am on Wednesday, when we arrive into a small airport near SFO. I just hope little Ms. G is okay without me for a few days. I know she has her dada and big bro, not to mention dadima (who she calls Nani!) there to take care of her. This also worked out well because she has this week to get used to being with them so the transition home should be easier for her.

Once I thought I had covered all my bases, I went downstairs to join the rest of the family by the pool. It was so pleasant down there with a cool breeze flowing through the courtyard. Devin was having a blast playing football with Chris (Rocco's dad) in the pool. I could tell Jaden was jealous and desperately wanted to swim as well. Unfortunately, he still had his line AND it was a public pool, so he couldn't join them. Guri sensed Jaden's feelings of being left out and suggested they play in the aerobics room or the PS3 room. Both took off and then mom went upstairs as well to get dinner ready.

I wanted to make sure Jaden got a good meal in tonight because he would be fasting before his procedure tomorrow and it wasn't until midday. Of course he said he wasn't interested in the Indian food mom had made and wanted McDonald's. I reminded him that he should enjoy his preferences for the next few days because once we're back in San Ramon, everyone will be eating the meal that's made! Guri went to get the boys their fast food and of course Ms. Gia had to go along because she can't bear to be left at home when she sees someone heading for the door.

The evening consisted of the usual routines with baths for all three kids and their bedtime activities. Once Gia was asleep, we all watched American Idol together and once Jaden's meds were administered, we were off to bed.

I have been sensing that Jaden is worried about tomorrow's procedure. As he does before anything he considers "major", he snaps back and is very short with everyone. I decided to sleep with him tonight so he would feel more at ease about tomorrow. Please pray that the anesthesiologist is okay with the little bubble in Jaden's chest cavity and we are able to safely move forward with the line removal. This will put us one step closer to home. And we can't wait to actually, finally GET home!

Day +270: Fun to be a family again

2010-04-04T07:44:00.000-07:00

Getting comfortable with his port

Hoopin' it up at CHC

Last few days have been pretty busy. Friday Jaden had his clinic visit and his pre-op appointment for his line removal/port insertion. I was completely taken back by what the port looked like. My vision was a small tube that just sat inside his vein. I was only partially correct. The tubing has a good size metallic device at the end of it. The device has a soft top that the needle is inserted into, thereby accessing the vein directly. I didn't want to say anything to Jaden but it looked big and uncomfortable. I hoped it wouldn't be too unbearable for Jaden, although I've been told that ports can remain in your body for several years without issue. Realistically, Dr. Prasad said Jaden would have it in until he no longer required frequent blood draws. Although Jaden will still get poked to access the port, he will not have to endure the "finding a good vein" part of the lab draw. Once the needle is inserted through the top of the skin into the port, blood draws are very similar to those with a central line (or so I'm told). Even the poke can be made painless by applying a topical creme like Emla to it.

I asked if there were any precautions with the device and was reminded that it is metal, so I'd have to carry something with me when we travel letting airport security know that Jaden has a medical device. Jaden will beep when we go through security!

Once we finished our discussion, we headed home and prepared to pick up Devin, Guri, and mom from the airport. Jaden was so so excited, shouting out the hours and minutes remaining until everyone arrived. It was wonderful seeing everyone. I swear Devin grows a foot each time he goes home! We had a great evening catching up and bonding, although Devin did have a meltdown reminding me that we will have quite a time with the transition home. I had to go for a very long drive when I went to get Jaden's McDonald's just to remind myself to stay calm and give each child individual attention. I'm going to need a weekend to transition myself from the routine in Durham to our routine in San Ramon. Devin seems very needy and clingy and I'll need to recharge so I can give him all the attention he deserves.

Saturday was fun as we did lots of things together. Guri and I took the boys to CHC to play basketball and we all had so much fun, barring the usual argument or two! We then came home and all went to lunch. It was a beautiful day outside and we sat outside Chipotle (what else with Devin here!) enjoying the breeze and the unusually warm summer-like day. We also slipped in an errand or two. Devin also insisted on swimming at the apartment pool, even though we reminded him it wasn't heated. So, at 6pm I took him down for a swim. He finally admitted he was freezing, but decided to keep jumping in until he was somewhat warm.

I was starting to worry about Jaden because he kept saying his legs were hurting. He looked completely exhausted and I knew he needed to rest because he had done more today than we do in a week! I wanted to have him go to bed early, but with the boys in town and the big Duke basketball game on tonight, I knew that would be near impossible.

In preparation for the game, we had reserved the PS2 room for the game and picked up pizzas from Enzo's (the new pizza place in the plaza next door). The boys settled in downstairs and mom, Gia and I headed upstairs to get the baby ready for bed. Devin got some grief when he came upstairs because he wasn't really interested in the basketball game. He and mom watched some TV while I put Gia down for the night.

I had to call Guri to bring Jaden up by 10pm because I was really worried he would overexert himself and get sick. Luckily, I was able to use his 10pm FK-506 dose as an excuse. Jaden was not happy with me and cried himself to sleep. This was further indication of just how tired he was but thankfully Jaden was knocked out (and snoring) in a few minutes.

Everyone was beat, so we all went to bed. Devin (Mr. high energy) was still bouncing around in bed. Since both boys wanted to sleep with me, we were on the floor on mats and I was afraid Jaden would wake up. Devin was stuck to me like glue the entire time and all I wanted was to stretch out and get a good night's rest. I woke up periodically to ensure the boys had blankets on them and were warm enough (both kick off their covers at night and it was pretty chilly with the air conditioning and the room fan on).

Today is Dad's 80th Birthday! HUGE HUGE Milestone and we will be celebrating with a nice steak dinner for him this evening. I hope Ms. Gia behaves and we are seated in a secluded area as I requested.

The rest of the day will consist mainly of packing up the apartment. The van is being shipped back home tomorrow and we're trying to put all the big stuff in there. I should hear back from Corporate Angels tomorrow as well. On Friday I was told there was a flight from Greensboro to Oakland on the 10th, which is ideal for us since this is also when the rest of the troops go home. We won't know until tomorrow if the flight is confirmed or whether there is room aboard the plane for us. I'm hoping everything will fall into place and Jaden and I will be headed home next Saturday. Keep your fingers crossed!

Day +267: All Choked Up

2010-04-01T19:45:00.001-07:00

Marshall & Jaden--Saying goodbye...

Woke up today to the usual routine of meds and breakfast for Jaden. He had school at 11:30--his last day at Hospital School. Tomorrow is the start of Spring Break here and we hope to be home soon after that.

By the time I got my act together and Gia had her breakfast, it was already 10:30am and time for her morning nap. I felt bad for missing our morning walk. I really do enjoy this special time with her.

I got Jaden to school and Marshall was waiting for us at the hospital circle. We exchanged cards and I took some pictures of Jaden and his teacher. Marshall and I hugged for a long time and I was really getting choked up. She is probably the person I'll miss the most in Durham. Not only is she a fantastic teacher but she has become a good friend as well. We promised to stay in touch. Thanks to Facebook and email, I think we'll be keeping tabs on each other for a long time to come!

It was such a beautiful day outside today, unusually warm for Durham this time of year, but a blessing to see the sun shining so brightly. I asked Jaden if he wanted to walk home and he shook his head eagerly. I had forgotten that Marshall was going to give me all of Jaden's work since he started working with her. Luckily, it turned out to be only a few tightly sealed packets, so there wasn't too much extra baggage to weigh me down.

Jaden and I thoroughly enjoyed the walk back to the apartment. The sun felt so good on our faces. I had brought a baseball cap and water for Jaden, knowing he would need it. I was shocked that he was able to walk all the way back without a water break or even stopping to catch his breath. He did drop to his knees once, scaring the heck out of me as he grabbed his side, but he was back up and walking after a few seconds.

After Gia's evening nap, we all headed to the Duke bookstore. Mom was going home on Saturday and she wanted to get a few things for my niece and nephew. Gia was an angel as usual, just hanging out and enjoying her surroundings, even though we were a good 30 minutes past her dinner time.

We got home and mom fed Gia as I figured out what the rest of us would eat. I decided on pizza and after I picked it up, I got Gia in bed. I was able to get Jaden in bed shortly after 10pm, even though he didn't fall asleep until a good hour later.

I had prepared Jaden for our busy day tomorrow. I would be getting up early to take my shower and get things going. We were due at clinic at 9:15 for Jaden's pre-op appointment and then we would head to the PBMT clinic for our usual Friday check up with Dr. Prasad.

We were both excited about tomorrow evening when Guri, Devin, and mom were coming in. Even Guri's dad was arriving later tomorrow evening so he could spend time with the kids (all planned well before we realized we'd be going home soon). Next week should be wonderful with everyone here and hopefully tomorrow we'll get some good news from Corporate Angels regarding our trip home!

Day +266: Tough to say goodbye

2010-03-31T20:04:00.000-07:00

Jaden with Spencer

I'm going to miss you, Best Buddy!

Getting color on more than just the eggs!

Proud of my pastel rainbow!

Let's get on with it already...

Heading out with his loot

Oh, my aching back!

I told you I ROCK at this! Look at all this stuff!

Jaden with Katie and Caroline from PBMT Family Suport

Look, there's Skittles in one of these eggs!!!!

I asked mom to wake up with Gia this morning so I could get a good night's rest and recharge. Well, to my surprise, the little stinker didn't wake up until 7:30am this morning! Figures, the early morning wake up calls are always on my shift. I was ready to get up myself at that time, but I stayed in bed for another hour because I didn't want Jaden to wake up.

It was a busy day overall. Gia and I went for our usual morning walk. It looked warm outside, but there was a very cold breeze in some areas. Luckily, I always keep Gia's sweatshirt in her stroller so she was bundled up well.

Jaden had school with Marshall, but before that I took him to CHC so he could enjoy the sunshine and play some basketball. It really warmed up and Jaden enjoyed being able to wear shorts and a jersey without bulky sweatshirts or jackets (even though I made him leave the house with one).

Marshall and I talked about our little predicament regarding our flight home. She made a call to one of her friends that's a corporate pilot (didn't realize so many of you are connected in one way or another to this profession!). Unfortunately, he was booked solid for the next several weeks with company business otherwise he would have helped us out. He mentioned Netjets, which another friend of ours had pointed us to. Come to find out it's owned by Warren Buffet, who also owns the company Sonia works for. Talk about six degrees of separation! Of course, I called Sonia right away and asked if she had any strings she could pull. She is trying to work her magic, but who knows if NetJets will respond or not?

While Jaden was in school, I ran to Kroger's to pick up a Thank You card and gift card for Spencer, Jaden's best buddy. Considering that Guri and Devin will be here for the next week and we hope to go home soon after that, today was Spencer's last day with Jaden. He is such a sweetheart and he did such a great job with Jaden. I know Jaden will miss their weekly "play dates"--it was the highlight of his week!

I picked up McDonald's for Jaden on my way to CHC so he would at least eat something before Spencer arrived. His buddy had barely sat down on the couch when Jaden walked over with the XBox remote. Um, Jaden? Why don't you ask Spencer how he's doing or if he'd like something to drink or eat before you shove the controller in his face? This got a good chuckle out of Spencer!

I left them to their video games and played with Gia. Before long it was time to head to the PBMT outpatient Easter Egg Hunt. I RSVP'd for this event early because I know how much Jaden LOVES his egg hunts! We've been lucky enough to have Sabrina Bhua and Gunu Bhua host them in LA for the past two (?) years so Jaden has very fond memories of running around Gunu's backyard fighting his cousins for the gazillion eggs that are scattered all around.

I really wanted to bring Gia, but it was her nap time shortly after the event started plus I knew Jaden would have had a fit if I hadn't focused on him completely. I wouldn't have been able to take pictures because little missy would have been all over the place. I felt so bad because as soon as Gia saw me grab my purse and keys, she fell to the floor crying. I kissed her and told her that it was nap time and that I'd take her for a walk later. Jaden made sure to say "Bye, Gia" several times with a smirk on his face as he walked out the door. Thanks, bud!

Well, the PBMT event at Duke Gardens was wonderful. I'm told there were close to 1000 eggs so each child got plenty. Jaden had his strategy mapped out. He skipped the Easter basket and opted for the largest plastic bag he could find. He then surveyed the territory and prepared to pounce on his reward, shouting "I'm going to kick butt at this!" the entire time. Sure enough, little man had more eggs than he knew what to do with. He had a hard time hoisting the bag, which looked heavier than my little boy himself, over his shoulders and would shout out things like "Oh, I hurt my back!" or "I'm so tired!". What a ham! At least the stooping to pick up all the eggs gave him a good workout.

Once back at the apartment, I got Jaden his snack and let him relax with some TV as I headed downstairs for my coffee and quiet time. I was completely unprepared to have my sanctuary that is the PS2 room occupied. Do people NOT have a clue about my coffee hour? Work with me, folks! I ended up browsing the Internet while I finished my coffee and then I headed back up. Definitely not the break I'd imagined!

By the time I got upstairs, Gia was up and running around. I love the way she says "Mama?" when she hears the keys in the front door or hears it opening. I was planning to take her to Kroger's with me so I could pick up a gift for Marshall, but she seemed hungry earlier than usual, so I decided to give her dinner. One thing led to another and before I knew it, it was already bath time.

I got Gia situated and then headed out. Couldn't find anything that seemed appropriate. Marshall works so hard and gives so much of herself, I wanted something personal that would be meaningful to her.

It was already 10pm when I returned home. I gave Jaden his meds and figured it was too late to eat a "real" dinner. So, my meal consisted of a banana, a piece of toast, and a granola bar. I figured I had plenty of reserves to keep me going until morning!

Tomorrow is Jaden's last day of school with Marshall and then Mom wanted me to run an errand with her. Friday begins the "changing of the guard" with Guri, Devin, and Mom coming in and my mom flying out the day after. Only difference is that my mom won't have to use her return ticket this time around! I'm still hopeful that Jaden and I will be close behind...

Day +265: How Can This Be So Hard?

2010-03-30T19:20:00.000-07:00

Gia was up at 5:30am again this morning. Dragged myself out of bed and got her a bottle. Luckily, she slept for another 45 minutes or so (too bad I couldn't do the same). By 7am, she was bringing books for me to read to her. She likes to get her favorite board books and then sit in my lap and have me read to her. I've read all the books so many times that I can recite the stories without cracking the covers open! By 8am, we were out the door doing our usual stroll of the lobby.

I checked the weather outside and it was a bit chilly but not freezing so I decided to take Gia outside for a walk. We had lots of fun on our usual route and I brought her back by 9am to give her breakfast. When I got upstairs, Mom was in the kitchen but Jaden was still sleeping, so I had Ms. Loud Voice wait in the hallway with mom while I grabbed her breakfast "to go".

I did a few laps around our floor while Gia finished her Cheerios and blueberry muffin. I then took her inside and snuck her into her room. Mom was folding laundry on the bed and I was just about to get Gia some fruit when Jaden walked in still looking sleepy. Shift change....I asked mom to take over with Gia as I got Jaden's meds and breakfast going.

Soon it was time for school with Marshall. I can't believe we only have 2 more days with her (that's assuming we can actually get a flight out of here in the next week or so!). Spring Break begins Friday, so we won't see her after that. She has been such a blessing and so wonderful with Jaden. We will truly miss seeing her smiling face every morning. She has such positive energy and is a joy to be around.

As for the flight situation, I spent quite a bit of time on the phone today exhausting all the possibilities. I even tried calling Customer Service for Southwest Airlines to see if they had a private plane they could help us with. No luck. The agent didn't even know where to direct me. I called the Air Care Alliance and was told that Angel Flight is a possibility, but the volunteer pilots are using their own aircrafts and bearing all the expenses, so they like to keep the routes below 1000 nautical miles. We definitely don't qualify for that. Moreover the planes used are very small, basically 4 or 6 seaters. This frightens me...

I ended up calling Corporate Angels once again just to get a heads up on the likelihood of them actually being able to fulfill our request. When I spoke with them last week, they told me that there was only 1 corporation that flies from Durham to the San Francisco area and it would depend on whether this corporation had any business near SF and had the space for Jaden and me. Today, the lady told me that she couldn't give me a percentage for the likelihood of helping me. She did say that they had taken other passengers coast to coast but again it depends on if the company is flying our way when we want to go home. I had visions of being in Durham for an eternity...

I really hope we can get home soon. I know several of you are trying your best to make this happen for us and we really do appreciate it. Between your efforts and those of Corporate Angels, I'm hoping we'll find a solution to this seemingly difficult situation. I was told to call Corporate Angels back on Friday and they would know if there are any flights headed our way within the next week...keeping my fingers crossed! I thought getting the go ahead from Dr. Prasad to go home was the difficult part. I never imagined actually getting home would be this much work!

The rest of the afternoon was pretty much like any other. Mom took Gia for another walk in the afternoon before her lunch. She then went to go run some errands. I put the baby down for her nap and when mom returned, I headed downstairs for caffeine jolt number two. I was downstairs for a while and got to catch up on some phone calls.

That was pretty much it. Evening was the usual routine. I did email Priti to see if we could move up Jaden's surgery schedule. We have the pre-op meeting on Friday afternoon and he's scheduled to have the line taken out next Wednesday. I really wanted it to happen this week so Jaden had time to heal in the event we had a flight home by next weekend. Priti went back to the surgery scheduler again, but they were booked solid. She did assure me that kids generally tolerated the procedure well and only needed Tylenol for a day or so. The good thing is that he will have his central line for the BIG lab draw on Monday as part of his 9 month tests and avoid being poked.

I'm keeping my fingers crossed that everything goes smoothly. The last thing we need is another roadblock when we're so close to going home!

Day +264: Minor Details...

2010-03-29T20:13:00.001-07:00

It was thundering so loud last night I was afraid Gia was going to wake up screaming. She was up for quite a while for reasons that escape me, but I finally got her settled. I didn't want her to then wake up because of the storm.

Well, she woke up pretty early this morning. 5:30 to be exact. I stumbled over to her room and did our usual morning routine. I could tell she was still tired and luckily she fell back asleep for a little less than an hour. When she woke up at 7am, we played and read books and then I took her downstairs for our exploration of the lobby area (and my first cup of coffee). I've gotten away from the decaf and into the "extra bold" stuff just to keep myself going. I'm also up to 2 cups a day, since I hit a low in the middle of the afternoon. Yes, I'm becoming a caffeine addict!

Came back up to find everyone awake and Jaden doing his breathing. He was already changed and when I commended him on being so responsible, he beamed "I also took all my meds!". Nani got them for you? No. I took them myself. WHAAAT???? Which ones did you take? How did you know how many? I underestimate my son. He has a mind that is so sharp and a memory that's even sharper! Jaden rattled off the meds and doses he took. I walked over to my checklist to see if he got them all and saw his shaky check marks and the time he took them (just like I do). Impressive, Jaden. But, it's not okay for you to take your own meds. Mommy has to administer them and make sure you get only what you need. I was scared to death but I didn't want to make him feel bad because I know he was just trying to help. What's more, with all the commotion around the 9am meds (which he took early), I forgot to give him the 10am dose of FK-506. I didn't remember until 1:30pm when I saw the dose lying on the kitchen counter. I gave it to him right away and then emailed Priti to see if it was still okay to do the 10pm dose or if I needed to move it out. She told me it was fine and to get back on schedule tonight.

Jaden did school and we got to share our good news with Marshall. It was also Physical Therapy day and I told Lynn that we would hopefully have only one more session with her. I need to get the process defined for continuing with both services back home. Marshall explained how the home schooling would work, even though technically Jaden has completed all his requirements for 1st grade. Lynn, however, wasn't really sure of how to initiate PT back home. I emailed Dr. Prasad in hopes that he could shed some light on the issue.

Speaking of physical therapy, Jaden had a huge meltdown during his session. He's been getting more and more jealous of Gia lately, especially since I've been spending more time with her the past few days with mom being out of commission. I've seen some not-so-unintentional tripping, pushing, and generally screaming in her face with a few "stupid baby!" comments thrown in between. I reprimand him, but somehow he justifies it with "she pinched me" or "she hurt me".

All of Jaden's pent up emotions came to a head today in the middle of his session. Gia loves getting on his back and she sometimes uses his body to pull herself up (just like she does with me). I'm not sure exactly what transpired, but all I heard was an "ouch" and then Jaden pushing Gia back, causing her to fall backwards on the hardwood floor and hit her head. Luckily she was on her knees and didn't have far to go or she would have really gotten hurt. I was appalled and Lynn, who was right there to help Gia up, was caught off guard. Jaden!!! She's just a baby! I couldn't believe my eyes. Jaden screamed at me and Lynn told him not to speak to his mom that way (very softly, mind you).

That's it. Next thing I know Jaden goes screaming into his closet. I handed Gia off to Lynn and then eventually Mom as I went to go talk to Jaden. His head was buried in the pillow as he screamed "It's always MY fault!". You spend way more time with HER than with me! What? Are you kidding me, Jaden. I've hardly spent any time with her. Just the past two days because Nani was sick, I've been getting up with her in the morning. I sleep with YOU, I hang out with You all day, I'm with you in clinic...when do I see Gia except in between those times.

This was like deja vu. I remember when Jaden was a toddler, I watched Devin do the same "unintentional" things. Only with Devin, they were pretty obvious like arm twisting, pillow on Jaden's face, and quite a few tackles that made poor Jaden's head hit the carpet with a thud. I think the realization that mommy is shared amongst his siblings was a big wake up call for Jaden these past few days.

I had to explain that I loved all three kids equally. I reminded Jaden that before Gia was born, I talked to him and his brother about all of us helping the littlest one because she couldn't do much for herself. I once again told Jaden how Gia didn't understand yet, she didn't mean to hurt Jaden, she just was pulling herself up. She sometimes squeezes my skin too when she does it, but she really doesn't mean it. Gia loves you sooo much, Jaden! You make her laugh and you play with her. She looks up to you. Remember, we have to take care of and protect the ones that are younger than us. Devin will protect you and you need to protect Gia....

I finally got him up and back to his physical therapy session. Man, I'm going to have to talk to these boys again and re-establish guidelines when we get home. Jaden finished up while I took some calls and made arrangements for our van to be shipped back home.

I also hadn't heard from Priti so I pulsed her about Jaden's central line removal this week, per Dr. Prasad's request. I was surprised when I got a response that showed our pre-op meeting for Friday this week but the actual surgery for NEXT Wednesday. I told Priti that we were waiting for a flight home and if Corporate Angels had an organization that was leaving middle or end of next week, I didn't want to miss my window of opportunity. It sounded like there was some miscommunication between what I heard and what Priti heard last Friday from Dr. Prasad. I was pretty certain Dr. Prasad recommended we take the line out this week because the surgery schedule was light. I also stressed to Priti that I wanted to give the line insertion site time to heal before we jumped on the plane. It made me very nervous to have the line taken out Wednesday and for us to get on a plane next Saturday (best case). I'm hoping she won't take too much offense to my pushing back and asking for a slot this week. Priti also mentioned that Dr. Prasad wanted us to be there Friday to discuss 9 month study results.

From what I recall from previous sessions, I'm not expecting any earth-shattering revelations from this study. It'll be interesting to see where Jaden's immune function is, but other than that, I can't imagine anything else that would be pressing. Out of the lab draws, the echocardiogram, the chest CT and the Pulmonary Function Testing (all of which take place on Monday), I'm most interested in the last two. We'll have results for those immediately, so if there are any issues, I'm sure Dr. Prasad will not wait until Friday to discuss them. Also, should the planets align and we actually do manage to get a flight out a day or two early, I'm sure Dr. Prasad would be flexible enough to meet with us a little earlier so we could make the said flight. We'll just have to see what transpires...

I headed out to pick up a few things from the grocery store and from the pharmacy. Jaden asked what was for dinner and since I haven't had much energy to cook, I offered to bring him a Rotisserie chicken from Whole Foods. At least it was healthy and I knew Jaden would love it. He readily agreed and ate well.

I've been keeping a food log for Jaden per Dr. Prasad's recommendation and it looks like he's eating fairly well. I don't see a lot of fatty foods and maybe that's his issue. I need to add more junk food into the mix! I think the boy could use a few cupcakes and Doritos (wish I could say the same for my diet)! It'll be interesting to see what his weight will be on Friday. Hopefully, he continues to move up the scale (oh what I wouldn't do to have THAT problem!).

With everyone fed, I bathed the kids and then did the nighttime routine. Again, I didn't get to take my shower until well past 10:30pm. Jaden was still awake, for reasons that still puzzle me, and I was starting to lose my cool. When I crawl into my bed after my hot shower, I want peace and quiet. I want some time to think and relax. Jaden did finally fall asleep about an hour later.

I'm praying Gia sleeps in till 7am tomorrow. I could use the extra hour or so of shut eye. Oh well, I know we're in the home stretch. It's just minor details that are left (like the ACTUAL plane ride home ;-), until we are back in Cali. Actually I just have to make it to Friday, when "fresh blood" arrives for backup. It will be nice to have the crew back in town for the week. I know I'm planning to use the time to pack everything up while the grandparents can have free reign with the kids! This could be dangerous...

Day +263: Can I really do this?

2010-03-28T20:00:00.000-07:00

Gia was up at 6:15am this morning and since Mom was still wiped out, I turned my pillow against Jaden's back, gave him his bear to snuggle with and headed to Gia's room. I'm having so much fun spending quality time with her finally. As exhausting as it is, I really look forward to it now and she always greets me with a big smile (after the initial scream that is).

Gia LOVES to be read to, so we spend an hour if not more just reading her books over and over again (can't remember doing it to this extent with the boys!). Then she gets really frustrated being cooped up in the room, so I quietly sneak her out and downstairs to the lobby. This morning I was pretty beat, so I had to help myself to some coffee as soon as we got downstairs. For those of you that were wondering, the lobby is completely empty at 8am! The cleaning crew was doing a good scrub down of everything and after doing a few laps, I brought Gia into the PS3 room where I could sit and have my coffee while she was contained.

I saw the leasing team all coming in around 8:30am which was bizarre because the leasing office doesn't open until noon on Sundays and there's usually only one agent here on the weekends. Come to find out the newly admitted grad students to Duke's MBA program were coming through to check out potential housing options here. I guess a stop to The Lofts was part of the final push by Duke to get them to commit to their program. Of course this property was rolling out the red carpet for the prospective students as well. I'm talking about a nice spread for breakfast and individual gift bags. Considering proximity to campus and all the amenities of this place, I'd be sold if I was on one of the two buses coming through! I am going to miss this place. I know Gia will miss the seeing the girls in the leasing office as part of her daily routine as well. They've become family to us. I know them all by name and they know me and my clan too.

I took Gia back up and slowly opened the door to the apartment but the lights were still all off so I guessed that Jaden and Mom were still asleep. I rolled Gia quietly (as quietly as I could with this little girl's big voice!) into the entry and grabbed a waffle and some milk for her. We headed back out. Before I could finish one lap of our floor, girlfriend had already scarfed down the entire waffle. Hungry, Gia? Luckily when I opened the door to the apartment again, everyone was up, so I could finish her breakfast without doing more laps.

I could tell Gia was getting tired so as soon as she finished her fruit, I put her to bed. I was really exhausted an it was only 10:30! I told Jaden to turn down the TV and I cleaned up and finally had a bite to eat. Jaden started to tell me something about the game he was playing in his usual loud voice (do you see the pattern here with my kids?) and the next thing I know, Gia is up crying. (*$&#&@^!!!!! It has barely been an hour! I'm not ready to get back on baby duty yet! I glared at Jaden and crouched down next to the monitor to see if Gia would fall back asleep. No luck, she's still screaming. Okay, I'll go get her.

Somehow I made it through to the afternoon and her next nap. I made sure there was pin drop silence this time or my roommates would be facing my wrath! Mom thought it was very amusing how all of a sudden I cared about noise when Gia was sleeping. I swear I saw a smirk on her face as she banged around in the kitchen for a snack!

While Gia slept, I told Jaden the TV needed to stay off and he needed to use his softest voice. I grabbed my second cup of joe and settled in with a magazine. I told Jaden that this would be a good time to make his Thank You cards for his doctors, his teacher, his physical therapist and his best buddy. I was surprised when Jaden asked me to spell words like "endurance". Wow, Jaden, that's a big word. Do you know what it means? Of course he didn't but had heard me use it multiple times with Lynn. I explained to him what it meant and he wanted to use it in his card. Needless to say, I think he's going to impress a few folks with his vocabulary ;-) Jaden read me each of his cards and I was so impressed with his sentiments and his ability to express his thoughts and feelings into words. I always tell my boys that it's much nicer to receive a few handwritten words than a Hallmark cards with their bare signatures on it. It's also important to acknowledge those that have helped you and made a difference in your life. I think it's finally sinking in, at least for Jaden!

Gia woke up and we called Sabrina and Gunu bhua to Skype. Sabrina had called earlier but knowing how excited (ie loud) Jaden gets when he Skypes, I decided to wait until Gia was awake. Jaden had lots of fun reconnecting with his LA cousins. They got to talk about their summer plans and hanging out and going to Legoland and lots of other fun trips. Given that our beach vacation turned amusement park vacation is now going to be a STAYCATION since Jaden is not allowed to swim in public pools (hence no need to stay at a hotel with a nice pool), we'll probably be doing more day trips than anything else. I'm still hoping to squeeze in my nice relaxing beach vacation before year's end (maybe xmas break?)!

Speaking of Skyping, every time Gia sees me on the computer (or on my phone for that matter), she thinks it's her Dad. She runs over and say "DaDa?". I know she's really going to have fun with Guri and Devin and they will enjoy all her antics. So excited that we can go home with or soon after they leave this time around.

Gia was getting fussy again while Jaden was talking to the LA crew, so I decided to take her downstairs for another spin around the lobby. There were a lot of students downstairs watching the Duke basketball game and I could hear the cheers coming from down the hallway. I took Gia into the conference room and we played Peek A Boo around the chairs and I tried to wear her out. I think she actually got the best of me instead!

We headed back up for dinner time. Made dinner for both the kids, fed them and put Gia down. By this time, I was beyond exhausted. Once again, by the time I finished my dinner and Jaden's meds, it was well beyond 10pm and I still had to shower. I really started to think of life back in San Ramon with all 3 kids. Was I really going to be able to manage this? But then I thought about the boys and recruiting them to help.

Luckily, Mom seemed to be getting back to herself tonight as well so I was relieved on two counts--that it was indeed fatigue and not the flu and also that I had another pair of hands to back me up next week! At least I was set for the short term!

Day +262: Pushing through to the finish line

2010-03-27T19:44:00.000-07:00

Mom had asked me last night to take care of Gia today because she was just exhausted and felt like she was coming down with something. This terrified me because in no way, shape or form am I willing to take any risks this close to getting home. So, I told Mom no worries that I would manage the kids tomorrow.

Ms. Gia woke up at 6:30 (and Jaden got up right with her to see where I was going!) and I went straight over to her room. I haven't slept well in ages so I actually wasn't any more tired than usual when I got up. We played and read lots of books but she showed no signs of going back to bed.

Mom came in about 9am and she still looked beat. Surprisingly, Jaden was still sleeping but mom told me he had asked her to come sleep with him when I went to take care of Gia. All I can say was that by the end of the day, I was completely exhausted. I have a new appreciation for what Mom has been going through these past months. My focus has been primarily on Jaden and I've played with Gia as time permits in between clinic visits, procedures, and med schedules. Today was the first time in a long time, I took care of her exclusively and let me tell you she is a handful. Especially now that little Miss G is mobile, she is in all sorts of trouble on a regular basis. You can't turn away for a second or the little devil is pulling toilet paper off the roll in the bathroom or picking something off the floor (or worst the trash) and putting it in her mouth. I was burned out at day's end and I'm much younger and supposedly more full of energy (?!?!) than Mom.

Jaden was pushing buttons early and often, so he pretty much lost video game privileges before noon. By the time I put Gia down for her afternoon nap, I had made him turn off the TV as well. He's so addicted to the tube, he doesn't know what to do with himself if it's not on. I told him to go read books or color or do a project from the myriad things in his closet. Of course, Jaden said no to all of them, but decided to take a nap. Great idea, Jaden. I know he's not getting restful sleep, so he must be tired much of the day which in turn leads to his short temper and outbursts.

By 4pm, the entire house was asleep. I was so excited for the quiet time, and I didn't even have to leave the apartment! I went downstairs to get my usual cup of coffee and settled in to catch up on email and of course Facebook (yes, I think I'm addicted!).

No sooner had I got things situated than Gia woke up again. She had barely slept for an hour! I went into her room to see if she would go back to sleep but no such luck. She was screaming with her eyes closed and I later realized she probably had to burp. In any case, it was tough keeping her quiet in her room. At least she loves to read and we read all her books OVER and OVER!

Jaden came in about 6pm, just in time because I was going to go wake him up. He had a good 2 hour nap and seemed in better spirits. Mom was also up and I asked if she could watch the baby while I ran to the clinic to pick up Jaden's meds and pick up some milk from Kroger's. Of course she said she would.

So, here's another example of what I'm going to miss when we go back home. In all of the day's excitement on Friday, I forgot to pick up Jaden's FK-506 refill. I was in a panic because I was down to the last dose and this is one medication Jaden cannot miss. I started calling 5200 and they referred me to clinic since we are outpatient. I ended up calling the Day Hospital and the nurse practitioner, (YES the clinic/day hospital is open SEVEN DAYS A WEEK, until about 7:30pm!) arranged for me to pick up enough doses to get me through the weekend! They really came through for me once again!

Of course this made me think of our resources at Children's Hospital Oakland. I found out on Friday that clinic is only open 5 days a week, more like banker's hours too. I don't think I'd get this kind of service back home--one of the reasons we came to Duke to begin with! I do get nervous thinking about giving up all of our security blankets here. There's no rushing to 5200 if there's an emergency back home. We'll talk to the Fellow/Attending on call after hours and if Jaden needs to be admitted, he'll still have to go to ER, although I was told he would be taken back to an isolation area fairly quickly. Still, we have to go to ER--with all the people who are SICK and waiting to be seen. I'm ultra-paranoid now and really spoiled as well. We have had such wonderful facilities and medical teams here. Everyone knows Jaden when I call or when we walk into clinic. They know his history, they know why we're there, they know how he likes things done. We'll be starting all over again back home, but I know we have to make the leap at some point and don't get me wrong, we are more than ready to get started.

I got back home with Jaden's meds and a few necessities and began the bedtime routine. I made Salmon for Jaden and me and a little rice for Ms. G. Luckily, mom was feeling a little better and fed Gia while I finished up Jaden's food and gave him dinner.

I finally cleaned up, gave Jaden his meds, and then headed to the shower about 10pm. I was ready to read a little and then hit the sack. Unfortunately, Mr. Jaden had other plans. Thanks to his 2 hour nap, he was not tired at all. So, he spent the entire time GLUED to my side. I finally had to yell for him to get off of me (literally how I felt) and give me some breathing room. It had been a long day and I just wanted a little down time before bed. Hopefully Gia would sleep through the night and cut me a break in the morning by not waking up before 7am.

Right now we were all exhausted but knew we had to push through these last few weeks. We could finally see the light at the end of the tunnel and it was just a matter of holding on until we got through to the other side...

Day +261: Could this day GET any better?

2010-03-26T19:29:00.000-07:00

None of us got any sleep last night. Gia woke up crying around 12:30am and I just let her be for the minute or two she was up and then she fell back asleep. Then around 2:30am, our upstairs neighbors were running and jumping around, and I was jolted out of bed by the sound of a loud thud (followed shortly by mom and then of course Jaden). This has been happening for a while but I've just let it go. I was so irritated, that I decided to call the building security on them.

It took forever to fall back asleep because all I could think about were the results for Jaden's tests today. I did manage to drift off, but once again was awoken by Gia crying at 5:30am. Mom was knocked out and I felt really bad waking her, but if I went to Gia, Jaden would be up and following me. I knew he needed his rest. Mom went to see Gia and just as I predicted, Jaden stuck his head up to see what was going on. I had to climb back in bed with him to get him to go to sleep.

I was also nervous about not getting to clinic on time, so I woke up just before 8:30am, even before my alarm went off. I decided to get up and get going. No sooner had I crawled out of bed and into the bathroom then Jaden sprung up as well and went to play with Gia.

I got the morning routine completed, including lab draws, and we were on our way to clinic by 10am, just as planned. We got upstairs and were ushered into an exam room. Priti came in shortly after and knowing what was top of mind for all of us, she immediately said she didn't have any results but had called the lab several times this morning and they knew we were waiting for them. She talked to me about meds and a little about Jaden's 9 month testing and then said she would return with Dr. Prasad when they had more info.

I had let Marshall know that we were in clinic, so she had already arrived to do school with Jaden. They worked diligently while I caught up on some emails. Just as Marshall finished, Dr. Prasad arrived. The minute he opened the door, he looked at Jaden and asked "Do you want to go home?". I wanted to get excited but was afraid to do so until I saw the results.

Dr. Prasad handed me the spreadsheet and most everything looked the same as last time. I did notice that the lymphocyte count had gone up by a few percentage point. I was very upset. So, the immunosuppressants didn't do much, huh? Dr. Prasad quickly told me to look at the trend. He said the lymphocytes were on a continual decline, but the medication had not only stopped this decline but turned it around, regardless of how small the change. He said he wanted Jaden on the immunosuppressants for several more months (6 to be exact), but since he looked great, there was no reason to stay in Durham. Okay, THAT was what I needed to hear.

I could hardly contain myself. Jaden blurted out "We can go home--not to the apartment--but to San Ramon?" Dr. Prasad nodded and Jaden let out the loudest scream I have ever heard. We were high fiving each other and just thrilled to bits.

Dr. Prasad sat down and I flipped past the list of questions I had created last night titled "Boost Needed" and went straight to "Going Home". What a list I had. I was thrilled to be going back to familiar surroundings, familiar faces, and most importantly having our family under one roof again. However, the more I thought about it, the more stressed I became about exposing Jaden to the real world. We had been in our little cocoon for so long and although we had our share of complications, they were minimal. We were now going back to being surrounded by people. People that went to school and worked and were surrounded all day by other people that probably had no clue about Lysol wipes or the number of times we Purrell our hands every day! How would I keep Jaden safe? How would I ensure he didn't end up in the hospital again?

I went through my concerns with Dr. Prasad and he patiently answered all of them. He said he would transfer Jaden's care to a local facility, either Children's Hospital Oakland or UCSF. He had mentioned that he knew the director of transplant at CHO personally and that held a lot of weight with me, but I still needed to research both and come to that conclusion myself. Dr. Prasad said he was fine with releasing us to either facility.

Jaden was scheduled for his 9 month studies on April 5 and Dr. Prasad suggested we leave the weekend after (April 10th or so). We also talked about Jaden's central line. Jaden started asking what hurt more, to have a port or to not have anything at all. He knew by now that he would be poked in either case. I told Jaden the question he needed to ask Dr. Prasad was how often he would need labs drawn. Dr. Prasad said every few weeks. I suggested that Jaden go with a port and Dr. Prasad agreed. Priti then suggested that we wait until the labs were drawn for the 9 month studies, since they were extensive, but Dr. Prasad told me that getting on the surgery schedule can be tricky, even for something as simple as the removal of a central line. He had checked next week's schedule and it seemed fairly light. I told Priti that I would rather go with surgery availability than wait for the 9 month studies, after clearing with Dr. Prasad that it would not be too difficult to access the port vs. the line for Jaden's labs. So, Priti said she would confirm when we could have Jaden's central line replaced with a port on Monday and get back to us.

I knew I had a ton more questions and Dr. Prasad just said to ask him as they came up. With that they left, and our giddiness began! Jaden and I were literally jumping up and down in the exam room. We hugged longer and harder than we had ever done before. Jaden was elated. He couldn't stop smiling and we immediately texted Guri and our sisters to give them the good news. Within minutes, I was getting texts and phone calls sharing in our joy.

The nurse came in to do Jaden's dressing change and I took the opportunity to start on my tasks to ensure we would get the heck out of Durham as soon as possible. I had already made a master list a few weeks ago and I knew the most important thing was to register with Corporate Angels. This non-profit provided transportation via corporate jets to or from treatment. There were several caveats, the most important being flights were not guaranteed when we needed them. Moreover, should the meeting schedule change for the corporate officers, they may cancel the flight at the last minute. This is why it was mandatory to have a flight scheduled as backup. Okay, here's our issue. Dr. Prasad will not let Jaden travel on a commercial airline, so essentially we have NO backup. We are at the mercy of the corporations and their travel schedules. I made this clear to the agency and she said she would do her best to get us a flight. She did not have the corporate schedules until a week in advance and once she learned we were going cross country, she told us there was only ONE company that traveled that route. I was really upset at this point. The representative told me someone would be in touch with me when something became available.

Jaden and I packed up and headed home. We were bursting at the seams to tell anyone and everyone that crossed our paths our phenomenal news. As soon as we got home, I got to work. I went downstairs and turned in our notice to vacate to the leasing office (like I said, I had already done much of the leg work a few weeks ago). I made some more calls, looking for alternate carriers or companies that may be able to help us with the flight home. By the end of the day, I had already scheduled the van to be shipped back, spoken with UCSF and CHO and decided I was more comfortable with the latter and left messages for numerous flight options.

The good news traveled fast. I was getting texts and emails and Facebook postings congratulating us on our wonderful news. To add even more joy to our day, we learned that our friend Rocco got his chimerism results this evening and learned that he was also cured of CGD!!!! I was so emotional it took everything I had not to break down in tears. God is wonderful and has blessed us all in so many ways. We wait patiently for our other CGD families (Kobe, Lukas...) to also get the good news that their boys are CGD free. I know it will happen soon.

Although I had done everything I could possibly do for now, I still felt like I hadn't accomplished anything. The really big piece of the puzzle is our flight home. Ideally, we'll get confirmation from Corporate Angels for a flight on April 10, the same day Guri and Devin leave for San Ramon. I am planning to send Gia back with them because I'm sure she would be disruptive to the executives trying to conduct business on their flights. So the plan is for Guri, Devin, Gia and Guri's mom to go back on Southwest as scheduled. Jaden and I will stay back until we can get a flight home. If any of you have corporate contacts or know individuals with private planes and can help, please let me know. You all have been so wonderful and generous in your prayers and good wishes, I know you'll see us through this last hurdle as well.

It is through faith and friendships that we have had the strength to get through our journey thus far, and it is these things that will pull us up and see Jaden through the rest of the way.

One more piece of good news, Dr. Prasad examined Jaden and said he still had some crackling in his lungs, but we could cut down our Albuterol treatments to 3 times a day. To top things off, since I told him that Jaden had been satting well above 90% when he slept for weeks now, Dr. Prasad said I did not need to monitor oxygen any longer. WOW! This was the most bizarre feeling at bedtime. I am so used to getting all the probes, monitors, tanks, tubing ready. It was absolutely surreal to go to bed. PERIOD. I didn't have to wait for 90 minutes to check for desatting. I didn't have to go to bed with Jaden. I actually got a few minutes to myself after I put him to bed. Can this day GET any better?

Day +260: Neighborhood Adventures

2010-03-25T19:24:00.001-07:00

WHOA! Careful-she's not a toy!

Striking a pose!

Just Chillin'

Made it up the slope to the neighborhood. I'm DONE!

Flat ground, at last!

Hi, squirrel (in the tree)!!!

I can't ride anymore. Let's get out of here!

Water break

Our big event today was heading out to the neighborhood where Gia and I usually go, this time with Jaden in tow. Mom had gone to Southpoint Mall to get some fresh air and I told Jaden he needed to come with us since I couldn't leave him alone. Mr. Jaden decided he wanted to ride his bike and, going against my better judgement because the area is not completely flat, I allowed him to bring it along.

It was really pleasant outside, although mostly overcast. It looked like it was going to rain but the rain never came. I made Jaden wear his helmet, which he kept telling me was hurting his head. No option, Jaden. We're riding near a busy street and it's not safe. So, I grabbed some water bottles and the three of us headed out on our little adventure.

Little did I know just what an adventure (and a real workout) for me this would be. We started off at the adjacent strip mall which has outdoor eating areas and a fountain that Gia loves. I had the kids get off their bikes/stroller so they could explore. Jaden asked for a penny to throw into the fountain, but I did not bring my purse. Sorry, Jaden, I don't have any change on me. Jaden looked up at me and said "I was going to wish that we find out we get to go home tomorrow." My heart just broke. I'm sure we'll go home when the time is right, Jaden. After a few pictures, we continued towards our neighborhood. I call it "our" neighborhood, because I feel Gia and I discovered it and it's our special little place to go now.

Jaden started cursing at his bike and complaining before we even got into the neighborhood. I had him get off the bike and walk it on the sloping areas. It was a little slope to actually get up to the circle we walked around. Just as Jaden got near the top, he sat down next to his bike and said "STUPID BIKE! STUPID HILL! I'M DONE WITH IT!" Jaden, we haven't even started yet. The circle is fairly flat so you can ride this part. Let's look around and enjoy the things we see.

Just then Jaden squealed "Is that a RED bird?". I looked up in the tree and sure enough, there it was. Jaden suddenly forgot about his aching body. He got on his bike and started to ride. I pointed out the birds and squirrels as well. Jaden loved watching the squirrels. Can I go near it? Can I touch it? Jaden, you can go near it, but don't touch anything please. All I could think of was another set back because he got attacked by a squirrel. What a great story THAT would be to tell Dr. Prasad tomorrow! Unfortunately, as Jaden got close the squirrel ran up a tree. Jaden just stood by it and waved "Hello, squirrel!". It was nice to see him acting like a normal 6 yr old. Most of the time, he acts mature well beyond his years, so it's nice to see glimpses of the little boy in him.

We continued to ride and I could tell he was getting tired. He was in a foul mood, so I told him I would pull his bike and he could just walk along. So picture me, pushing Gia in her stroller (which, by the way, was fully loaded with water bottles, jackets, and an umbrella in case it rained) with one hand and pulling Jaden's bike behind me with the other. I'm also watching Jaden to ensure he doesn't run into the street.

When we got to the bottom of the slope, I asked which way he wanted to go and Jaden pointed towards the back lot. If we cut across the parking lot for the adjacent complex and crossed the street, it would put us at the back of our apartment complex.

I got everyone and everything across the street safely (breaking out in a huge sweat no less!) and Jaden got back on his bike. He was really complaining about it now, telling me how it was MY fault for dragging him along. Okay, Jaden, look at all the beautiful things you saw on our ride and how you got out of the apartment and into some fresh air for a change. Nope. Not working. Jaden was so upset with me. I tried to see if we could cut through building 2 somehow to get to our building, but there was no easy way. Instead of going around a blind turn with the kids, I decided to take them through the "nature area"--a gravel trail that took us back up to the front of our building.

Well, it was another slope and of course Jaden protested. So, once again, I pushed the stroller and pulled his bike behind me. Towards the top, even I had to think of plan b. I took Jaden and Gia up to the level area and then came back down to get the bike. Phew! We were finally just a short walk from our lobby.

Once inside, I grabbed a coffee in the lobby (anticipating that I would need some comfort after I put Gia to sleep) and we all headed upstairs. Gia was tired too and she fell asleep right away. Jaden slumped into his favorite chair and turned on the TV and I grabbed my coffee and headed to my room. We were all completely spent!

Mom came home just as Gia woke up and after changing the baby, I gave her to mom so I could run to Trader Joe's to get Jaden's chicken nuggets. I swear this boy goes through box after box of the stuff.

Came home, did the bedtime routine and got things ready for the morning. I had to draw labs and the goal was to get to clinic by 10am or so. I had an email exchange with Priti and Dr. Prasad yesterday. She had mentioned how busy Fridays had been lately and that Dr. Prasad was at clinic until 8pm every week. She suggested we come about 10am, when Dr. Prasad usually arrives, because he always asks if anyone is ready to be seen. Since most patients don't arrive prior to 11am, this would give us a good chunk of one-on-one time with him. My only concern with this scenario was whether the test results would be in by then. There was really not much to discuss if the results weren't available. Priti felt that she should have them by morning, so I agreed to arrive early. I laid out everything and got Jaden in bed, but surprisingly he didn't crash. He did ask for Tylenol, which I gave him to help with any muscle aches or fatigue.

Tomorrow we get the big news about chimerism. I'm so hoping it will be what I've waited so long to hear. I know all of you have been praying for us and I know GOD will answer our prayers. I'm still trying to be realistic though and not get my hopes up too high. I am planning to make 2 lists of questions tonight--one in the event we can go home and the other in the event Jaden needs a boost and we're here for a while longer. I'm really hoping I won't need the latter. Keeping my fingers crossed and praying for the best outcome!

Day +259: Follow-up

2010-03-24T19:38:00.000-07:00

Nothing really exciting to report today. Jaden had school with Marshall as usual and then we went straight from there to his post-op appointment (sinus surgery) with Dr. Hulka. He had a hearing test and the nurse doing the test said Jaden had "perfect hearing". I had suspected as much but I now had proof. I told Jaden that there was no longer a reason to BLAST the TV since the nurse just told us there were no issues with his hearing. I told the nurse what volume level he uses at home and she playfully negotiated down to "12" on a normal basis, but upped it to "17" when he had his breathing treatment because he couldn't hear over the noise of the nebulizer.

Dr. Hulka came in shortly after and checked Jaden's ear tubes. Everything looked fine and I asked him how long I would need to use ear plugs when giving Jaden a shower. Dr. Hulka told us that we could go ahead and stop, but some kids find that there is a stinging sensation when water gets into the tubes. I could see Jaden's eyes grow wide. He immediately said "We're using earplugs! I don't want to feel stinging in my ears!". I asked him if he wanted to try it once and see if he really felt the stinging but Jaden refused. Alright, I'll give you this one. I wish I could buy the putty-type earplugs from Costco in bulk!

Dr. Hulka also examined his nose and I told him that I was afraid that the sinuses may be filling up again. Jaden seemed a little more congested and on some evenings I had him blow mucus out of his nose. I don't know if I'm just paranoid now or if I should truly be worried. Dr. Hulka reminded me that with a "normal" person, even if all the sinuses were full, if there were no symptoms we would just leave things alone. We went in to drain because of Jaden's congestion, but mainly because he was a transplant patient and Dr. Prasad wanted to avoid risk of future infection. Dr. Hulka basically told me to let things be unless of course Jaden presented with clinical symptoms.

Jaden didn't need to come back for a follow-up for 8 months, but given that we didn't plan to be back in Durham (if we ever get to leave, that is!) until his 12 and then 18 month check-up, Dr. Hulka felt we could see him at the latter milestone. There is no hard and fast rule for the follow-up.

Dr. Hulka also mentioned that we could be seen locally by a pediatric ENT, but didn't know of one off the top of his head in our area. There are issues with going to the "best" or those that claim to be the best because the wait time for an appointment might be months and in our case, if there were an issue, we would want to be seen within a day or two. Dr. Hulka thought the best resource would be our pediatrician but told me he would look into it as well. I of course asked if I could email him should I have any questions and was completely surprised when the doctor pulled out a card and wrote the office and his cell phone number on the back. He said he doesn't check email frequently and he'd much rather discuss any issues via a quick phone call. WOW!

With that, Jaden and I headed back to the apartment. It was an absolutely BEAUTIFUL day in Durham today so Mom and Gia went for a walk. I got Jaden lunch and then got a few things done. When Gia got back from the walk, I put her down for her nap. It's funny that she associates me mainly with naps and bedtime. When I say "Gia lets go nee nee (sleep)", she takes off in the other direction. I have to chase her down to get her into the room! Once she was in bed, I reminded Jaden that this would be a good time to get his reading and homework done since he wouldn't have to worry about Gia grabbing at his stuff and making noise. Jaden agreed and I went down to get some coffee an do a little Internet research on the state of our public schools back home. I have been really worried about all the budget cuts and have been evaluating options for Devin, especially since he's nearing the middle school years.

Learned a lot in the hour or so I was downstairs and I came back up to find Jaden doing his scheduled hour of video games. I wanted to take everyone to the American Tobacco Trail for a walk/bike ride, but it was impossible getting Jaden out of the house. He needs to follow a specific routine and if you disrupt that it really turns his world upside down. He's been like that since he was a baby. Jaden had already told me that he was going to finish his homework and then play his video games from such and such a time so that he would finish by 7pm for the next basketball game. No amount of convincing would change his mind. So, I decided to take Gia out for a walk around the neighborhood.

It was such a pleasant evening that I lost track of time and our 30 minute outing turned into a full hour of bliss. Gia and I had fun going back to the little neighborhood we found earlier in the week and walking around the cute little homes. There were flowers in some of the yards and Gia looked around and took in everything. She then looked up and pointed to the moon that she saw in the middle of the blue sky. "Moon" I told her. She tried to say it back.

Gia's starting to say a few words here and there and I can tell she definitely understands what I'm saying to her. Mom and I speak Punjabi to her exclusively in hopes that she'll pick up the language. I started this with the boys when they were babies but didn't keep it up. It's too easy to use English at home all the time since we're all most comfortable with it. I hope to keep it going with the littlest addition and hope it rubs off on the other kids! Gia can already say a few words like "paan" (for paani=water) and her favorites "dahi" (yogurt) and "bahar" (outside). She also says DONE and shakes her little hands when she's finished eating or drinking something. She's such the social butterfly, I'm sure she'll be speaking sentences in no time!

Once we got back from our walk, Mom fed Gia and I got dinner for Jaden. It then rolled very quickly into the night time routine and I actually got to watch American Idol with Mom and Jaden for a change since it was on an hour later than usual. As soon as the show wrapped up and I gave Jaden his meds, it was time for bed. Jaden must have been tired because he fell asleep pretty quickly.

All I could think of was ONE MORE DAY until we know what's going on. I had already had a conversation with Jaden about it earlier in the car. He asked about the "big news" on Friday and I realized I was creating a lot of stress for him. I talked to him about just being prepared for whatever the news may be. If it means we go home, great. If it means Jaden's body needs a boost from Gia and we're here for a few more weeks, than that's fine too. Of course Jaden protested and said he wanted to go home, but I told him if we were still in Durham that it would be a lot warmer and he could wear his shorts and jerseys every day. We could also be outside a lot more and enjoy the sunshine. I was hoping to play out the worst case scenario for him so it wouldn't be a big shock if that turned out to be reality. Jaden seemed to be okay with it after a while. I wish I could say the same for me!

Day +258: Girls Day Out

2010-03-23T19:47:00.000-07:00

What a long and painful night. Mom decided to sleep in the closet because with me being up monitoring oxygen and the banging of our upstairs neighbors, she was not getting much sleep. Add to that all the early morning hours of waking up with Gia and you can see why I worry about her health.

So, we decided to give her the night off and for me to take care of Gia this morning. I finished monitoring Jaden's oxygen and then went to the other bed to sleep. Didn't get much of it though because I was so afraid I would sleep through Gia's cries in the morning. Jaden also got up to go to the bathroom and realized I wasn't sleeping with him, so back to his bed I went in hopes of getting him to sleep.

Gia was up at 5:30am and I was half awake anyway. I gave her a bottle and kept the lights off and mouth shut so as not to stimulate her. It worked because she fell back asleep for another 2 hours or so.

We started to play and mom walked into the room. She looked a little better so I'm guessing one night of sleep helped. Jaden walked in soon after. Not so good. It was only 8:30am. I knew he needed more sleep that this, but Jaden being fiercely independent as he is, announced that he awoke at 8:38am exactly! He also made both his own and mom's beds, which I was sooo proud of him for doing.

With everyone up, I got Jaden's meds going and gave him breakfast. Since Gia wouldn't be sleeping for a while, I took the opportunity to take a shower. Although it felt wonderful at the time, the hot water also made me realize how tired I was. By the time I got out of the shower, it was time for Gia's nap and for Jaden to get to school.

Jaden did his session with Marshall at CHC and on our way home, I told him Gia was still sleeping so it would be a good time to finish his homework. Jaden actually complied and completed ALL of his assignments as soon as we got home. This freed up his day for ESPN, Disney and his well planned hour of video games.

I decided to finally take Gia and have her car seat installed properly. Her little feet were pressing up against the back of the seat and it was time to have it switched to forward facing. I was able to do the installation myself and just wanted someone to ensure it was done correctly. I searched and searched for a local police or fire dept to do it, but no luck. I also called Durham EMS, which was listed as an inspection site online, but no one returned my calls.

I ended up at Pinewood Fire Dept at the other end of Durham. I was really glad I picked this place because firefighter Sean met me outside the station and was ready to help. He was very impressed with my installation and with how secure the seat was. I had to pat myself on the back. I guess I actually learned something after all these years of watching the San Ramon Police Dept inspect my car seats. Sean did mention that it is now recommended that kids be rear facing for 24 months. Are you crazy? Her feet are already mushed up toward her. Pretty soon her knees will be in her face! Sean, who had 2 young boys of his own, agreed but reiterated that this was the recommendation. Legally he could install it as forward facing since Gia was over 12 months.

With the car seat inspected and a clear conscience, I took Gia to run a few errands. We also picked up the P.F. Chang's meal that Mr. Jaden had ordered for dinner tonight. He refuses to eat any of the Indian food mom makes, but I'm going to have to crack the whip pretty soon and wean him off the fast food.

Gia and I had lots of fun, ending up at Starbucks while we waited for Jaden's food. I thought I had the perfect strategy. It was Gia's nap time, so I changed her diaper and got her some warm milk along with my usual order of Latte. I thought that with her clean and fed, she would fall right asleep on the ride home. Think again. Ms. G must really enjoy riding forward because she stayed up the entire time. Of course as soon as I put her in her crib back at the apartment, she was out like a light.

I had been plotting my escape the entire ride home. Instead of going downstairs for some idle TV time, I would go get an mani/pedi next door. I could use a little pampering and a lot of quiet time. So, I gave Jaden his next breathing treatment and pulled out his afternoon meds for mom.

I was then out the door for a little R&R.

It was the best decision I could have made. With it being a midweek early evening, the nail salon was fairly empty. The gentleman that gave me the mani/pedi really took his time and did a great job. The leg and arm massage in itself was worth the walk over there, but add the warm jets of the foot spa, the back and neck chair massager, and an issue of People I had not yet read, and I was truly in heaven. I couldn't wait until Gia was old enough to come with me on these little pleasure trips. I was really looking forward to some girl time with my daughter. I may actually make this a family affair--the boys may want in on all the fun as well. I know Jaden would do it in a heartbeat. He always talks about getting USC colors on his nails!

I went back to the apartment, feeling so much better. Mom was feeding Gia and I heated up Jaden's meal. We all sat down to watch American Idol, although Ms. Gia was getting into so much trouble that Jaden and Mom were begging me to give her a bath and put her to bed!

Halfway through the show, I gave up and did just that. By the time I came out of the room, Jaden had already set up his med tray, including the flushes for his line. He had also set up the things we needed for our bedtime routine. There it is again. The glimpse of the sweet, helpful boy I seem to see so little of these days. It's usually masked by sarcasm and back-talking, not to mention the poor listening that continually gets him in trouble these days.

It was tough getting Jaden to bed and he talked and talked and made wisecracks much of the time. He was also all over me, which drove me just nuts. Jaden--scooch over, I barely have any room! He did finally get to sleep and I was able to get a few moments of peace.

Tomorrow is supposed to be a beautiful day (today was very windy and cold), so I'm hoping to take everyone to the Tobacco Trail for a walk/bike ride. Hopefully getting the troops out into some fresh air will change everyone's mood and boost morale. A few more days and we should be in a better position to know next steps. I just hope they are in the right direction.

Day +257: The Wait Begins...

2010-03-22T19:32:00.000-07:00

Gia and her first purse...can't go for a walk without it!

Look Ma, No Hands!

Heard Gia crying at 6:15 this morning. Just couldn't sleep soundly again. Jaden was all over me, with his head on my chest or his legs on my stomach most of the night. God, I can't wait to get him back into his own room and bed!

I had set my alarm for 8:30am so I could give myself enough time to get everything ready and get Jaden to clinic by 10am. Today was the big day--chimerism test. I was really nervous and I could sense that Jaden was too. I gave him his meds and he started to tell me his tummy was hurting and he didn't feel well. I had to make it very clear to him that there was nothing he or I could do to make the test results come out the way we wanted. No amount of eating healthy, exercising, etc. etc. would make Gia's lymphocytes grow and Jaden's own cells diminish. I wanted to ensure he felt ZERO responsibility should the results not be in our favor. I told Jaden that his cells are going to do what they want and if the results tell us that he needs a boost, then that's okay because his body needs it. I think he felt better after that.

Jaden was a total clown in clinic. Natalie, our nurse, couldn't get over how much energy he had. I teased that this was the same boy that couldn't eat more than one or two bites of his cereal this morning because he felt sick and here he was monkeying around!

We finished up our lab draw and I prayed that we would get good news on Friday. I then called Marshall and Jaden met up with her for his lessons. Marshall already started talking about how she would miss us both and how Jaden was the highlight of her day. I tried not to engage too much for fear of jinxing things, but I just couldn't help it. We talked about hopefully making arrangements to go home and getting a teacher for Jaden (even though Marshall said they had covered all of the first grade topics already and Jaden would have no problems heading right into 2nd grade in the Fall).

Once they were finished, we headed out. Jaden wanted to play basketball outside and we went to the car to get his ball. He lasted the usual 10 minutes or so before wanting to go home. I told him we'd have to work on his endurance because the Youth Hoops League he wants to do next winter has 8 minute quarters and he'll probably be running most of the time. Jaden was just beat and I told him that his energy low may also be because he had not eaten anything all morning.

We headed home and I gave Jaden lunch while Mom fed Gia. Soon Lynn arrived to do Jaden's PT session. Because Jaden had been admitted, Lynn had to formally discharge him from outpatient care and then readmit him into her care once he was outpatient again. This basically means a ton of paperwork, again!

I asked how Jaden did and Lynn said he did well but agreed endurance was something that he still needed to work on. She also had him do some sit ups, which Jaden couldn't do and also do a backwards roll and come back up to standing without using his hands. Again, Jaden was not able to do this exercise. I joked that I couldn't even do that roll myself, but she felt that most 6 yr olds could so Jaden should also be able to do it without much difficulty. I then told Lynn about the chimerism test this morning and our hopes for going home soon. I asked if she felt that Jaden would continue to need physical therapy once we were home and she felt he would.

I was already planning to play basketball with him in the backyard, soccer in the "grass park" near our house, and have him ride his bike around the neighborhood. I also wanted to get clearance from Dr. Prasad for Jaden to start up Tae Kwon Do again. I felt it would really help him with his endurance and flexibility. Lynn thought that 30 minutes at a stretch twice a week may be too much for him right now. However, if the instructors could work with him to give him the option to sit out when he was tired, Jaden might be able to do it. She felt confident that Jaden knew when to push himself and when to give himself a break. I just worried that Dr. Prasad wouldn't want Jaden in a room with 15 other sweaty kids. I know Ms. Claudia and Mr. Carl would be flexible in allowing Jaden to chose the tasks he could perform until he was able to do everything again. We'll just have to wait and see...

Lynn finished up and we headed back up to the apartment. Jaden went right to his downtime of watching TV. I had already put Gia down for her nap and Mom was doing her thing on her computer, so I decided it would be a good time to break away and get some coffee.

I was downstairs for about an hour or so and then came back up to start the evening routine. Mom fed Gia while I gave Jaden a bath. I had mentioned to him that with the weather warming up, we may want to move to a shower 3 times a week instead of 2. Jaden, of course having the memory that he does, held me to my word. I was a little anxious to bathe him more because of the risk of a line infection. Jaden still has his central line which needs to be wrapped and secured and now we also have to put the putty ear plugs in to protect his ear tubes. Giving him a bath is quite and undertaking, but I could understand his need to feel fresh more often.

Once the bath was done, Jaden watched his basketball games while I tried to take a few pics of Gia running around with her purse. She has just rediscovered it (thank you Tracy mamiji and Dave mamaji!) and now when she sees me grab my purse to go, she picks hers up and WALKS to the front door saying "bahar" (outside). She walked around with it all afternoon and even started putting it in her mouth! Got a few good pics. I wish Jaden would let me take more of him. He puts a limit on what I'm allowed to take and gets very moody if I try to sneak a few extra. So, that explains why I didn't get any of him today!

Speaking of moody, I think we have all completely had it with being here and with each other. As Jaden puts it "Mom, I'm done with Durham!". Me too, buddy, me too! Right now, tempers are short and emotions run high. Everyone is on edge and ready to pounce at the slightest remark. I know Mom is ready for her break on April 3 and hoping she won't have to return, even though she has a return flight booked. I'm also hoping that we'll be able to go home with or shortly after Guri and Devin come her for Spring Break.

As much as I try to convince myself not to jump the gun, I have already started to map out the logistics of our escape from Durham. I just need the blessing from Dr. Prasad and I can have things packed and ready to go in a matter of days! As long as we can get a corporate flight out of here, I'm taking it, even if it means leaving BEFORE Guri and Devin do!

Day +256: Preparing for the BIG week ahead...

2010-03-21T19:38:00.000-07:00

Finished Design for Rainbow of Heroes Walk Quilt

I had a hard time falling asleep yet again. Mom was very tired yesterday and I kept worrying about her getting up in the morning to take care of Gia. I think last week really wore us all out. I heard Gia about 6:30am this morning and Mom beat me to getting out of bed, even though I could hear her moaning as she got up. I waited for a little while but couldn't fall asleep. I could tell that Mom was still exhausted. Around 7am, I went to go pitch in. I told Mom to go back to bed and that I'd take over with Gia, who showed no signs of going back to bed.

With Mom back in her room (hopefully) sound asleep, Gia and I went on to read some books and play. After a while, she started to bang on her bedroom door wanting to get out, so I thought I'd take her for a walk in the lobby. I threw on a sweatshirt and tried to find one for Gia, but realized that all her things were in her closet, which incidentally is in the other room. I tried to put Gia in her crib while I crept into the other room since Mom and Jaden were still sleeping, but girlfriend screamed so loud I had to pick her up. I kept hushing her and we quietly snuck past everyone and got what we needed. I didn't even attempt to put it on her until we were in the hallway.

We initially did one lap around our floor and then I took her downstairs. We walked around the lobby and then I let her walk around in the PS3 room (yes, she's flying around now with her new found freedom) while I guzzled down some java. We then did another lap around the lobby and I decided to check the weather outside. It was overcast and I thought it would be really cold, but it wasn't too bad.

So, with Ms. Gia bundled in her sweatshirt and me snug in my own, we decided to go explore. I walked her down Erwin Road as usual, but it's such a busy street and so NOT scenic. I took her by the fountain, which she loved, at the plaza next to ours. I then decided to venture down a street we had not really noticed before. Our curiosity paid off because it was a quiet street with town homes or apartments that had large yards and porches. Gia loved looking up at the birds and seeing the squirrels scurrying around the yards.

It was soon time to head back since it was almost time for Gia's nap. I walked into the apartment to find Mom making her tea and getting ready for breakfast. She fed Gia and I put her down for her nap. Jaden was still sleeping through all her screaming and hollering, so I figured he must be really tired from last week as well. I decided to give him a break and let him sleep in, knowing full well we would be behind on our morning medication schedule.

Jaden finally awoke at 11am! I let him stretch for a few moments before I hit him with the barrage of meds that I was holding onto for him. I was still exhausted and as much as I wanted to venture out with the crew, I just didn't have the energy. So, I just let everyone alone and we did our own thing. Jaden watched TV in his PJs, Mom listened to her Sunday kirtan (prayers/hymns) and I tried to find a (non-existent) quiet corner.

Not much got done today. However, I did have Jaden turn off the TV long enough to do his homework and also do his quilt square for the Rainbow of Heroes Walk coming up in May. I don't know if I've posted about this before, but this is the annual fundraiser for the PBMT Family Support team. These are the wonderful folks that provide all the activities on the unit, including art, Bingo and music therapy. They take care of the families on the unit with their Wednesday pizza lunches and catered bagel or donut breakfasts. They are also responsible for the Best Buddy program and let me tell you, having someone to come in and sit or play with your child so you can grab a quick bite or just have a moment of peace on the unit is PRICELESS. I would sign Jaden up for all the boys on the weekly schedule and he would love it when they came to play PS2 with him. It's impressive what these people can put together and how much of a help they truly are when you are on the unit. They have every detail mapped out to make a very stressful experience bearable.

Getting back to the quilt. Each child that had a transplant last year gets to create one square for the quilt. All the squares are sewn together and the quilt is auctioned off at the Rainbow of Heroes Walk. I wouldn't mind bidding on this piece myself...

I brainstormed with Jaden about what he wanted to do and he ultimately came up with what he did most on the unit--play video games. He chose to draw a picture of himself in the Playroom playing Wii, controller in one hand and nunchuk in the other. You'll notice the number on his shirt, signifying one of the many jerseys he wore while he was inpatient. He also went to great lengths to draw the shelf full of Wii games behind him, the TV and the Wii console. I think this is what he knew best, especially when he tired of all the scheduled classes on 5200. At some point, I think you've done it all and you go back to the tried and true (especially when you're on the unit for as long as we were!).

Having finished his tasks for the day, Jaden went back to watching his basketball games and I told mom I was headed downstairs for a little R&R of my own. I grabbed yet another cup of coffee and settled into my chair in the PS2 room. I would have normally taken my book, but I just wanted to find a mindless show to watch and just chill out. There was nothing on the tube, so I decided to catch up on a few phone calls, only NO ONE answered. Must have been a busy Sunday in San Ramon and Milpitas!

I was downstairs for just over an hour and then realized it was coming up on dinner time. Jaden had wanted tacos tonight so I started to make it for him. I have learned to split up the meat since he is the only one that really enjoys the tacos. So, I was able to make two different meals out of the meat I cooked. That gets me off the hook for tomorrow too!

I was just wrapping up when I pulled out the taco shells. They seemed stale to me and not wanting to take any chances, I ran to Krogers to get him some fresh shells. By the time I came back, it was rush hour. Everything was running late--dinner for Jaden, Gia's bath, my dinner, etc.

I got Jaden going, ate a quick bite, and then headed to give Gia her bath. Thank goodness she woke up late from her nap because I didn't feel so bad getting her to bed an hour later than usual.

With everyone fed and bathed, I cleaned up and went to get Jaden's meds. I was stopped by Jaden who begged for 5 more minutes before I went into the room. When he finally let me enter, I saw the medicine tray on my bed with all his meds neatly lined up. He also had the flushes for his lines with the alcohol wipes next to each flush. My med checklist was there along with his pulse ox probe and even the Coflex to secure the probe in place!

Jaden then led me into the bathroom where he had all of our night time stuff pulled out and on the counter. WOW, Jaden! Way to go! He was so proud of himself and jumped on me to give me a big hug! See, there is my little boy within that devilish exterior. He lets me see the real Jaden once in a while, although right now he's mostly abrupt and angry.

I finally got him settled (after much admonishing for messing around in bed) around 10:30pm, much later than I intended. Tomorrow was a big day and I wanted to make sure we were in clinic by 10am for his chimerism blood draw. I pray and pray that things work out in our favor and we hear good news at the end of the week. I don't know if I have it in me to stretch things out further yet again. I am completely tapped out, mentally and physically. Please pray for Jaden that his lymphocytes have regressed and Gia's lymphocytes are dominating once again. Nothing would give us greater pleasure than to finally hear Dr. Prasad give us a go-home date!

Day +255: Got To Hang On...

2010-03-20T20:04:00.000-07:00

Woke up this morning with a throat so sore I could hardly speak and muscles aching all over. Oh boy...I can't afford to get sick, so more rounds of Airbornne. Like I said, I think my body is pretty much done as far as stress is concerned.

Hung out with the kids much of the day. Gia is practicing her walking all over the place. She's really enjoying being able to stand upright and go from room to room (only falling here or there). Jaden was busy with his TV shows and video games. I limited him to about an hour of video games, but honestly didn't have the energy to patrol it today. Mom was also very tired after a week of watching Gia nonstop. So, today was all about laying low and just vegging out.

It was GORGEOUS outside. People started laying out by the pool in the early afternoon and Gia loved "people watching" from the balcony. She was trying to have full-on conversations with the folks below! I wish I could have taken everyone out to a park, but after our last little excursion and all the issues that followed, I'm not taking any more chances.

I did take Gia down for a little walk around the building and also down by the pool. We looked at the flowers, which she tried to stomp on with her new shoes! She held my finger and we cruised all around the pool area exploring.

I also took Jaden out with me to run errands. We went to the usual Target and Krogers and he was pretty worn out by the time we returned, even telling me his legs were hurting as he squatted in the grocery store!

Didn't get much of a break today, but at least the bulk of the errands are done and we're geared up for hopefully another TRULY lazy day tomorrow. Nothing planned. Nothing to be done. We are going to enjoy the weather and maybe go for a walk or two. Still looking for that perfect park where I can walk Gia in her stroller and Jaden can ride his bike alongside. If any of you know of such a place around here, please clue me in. It's a shame to spend such beautiful days indoors.

I tried to relax with dinner around 10pm, but Mr. Jaden does not have a mute button ;-)

Just ended up putting him to bed in search of some quiet time. He still was taking pangas (ie messing around) and I finally had to lay down the law! I felt bad because he got upset and turned away from me, but I just needed some peace and quiet at the end of my day. I'm feeling tons better so I'll keep the Airborne going. Hopefully we can sleep in tomorrow and catch up on some zzzzzzzs.