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

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!

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!

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?

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

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!