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.
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