Enjoying cupcakes in the quad at the Back to School picnic
Goofing off with his buddy Thomas
Sneak peak into his classroom with Mrs. Johns
First day of school--backyard photos
Water play date with his buddy Nicholas
Mugging next to the tile he made for his school's 10th anniversary
First music lesson: Jaden chose drums!
Water gun fight in Gunu bhua's pool!
Finally in LA for the first time (with his cousins Saira and Armaan)
Road trip with Devin and Daddy: LA, here he comes!
Dr. Garcia also reviewed Jaden's one year studies from Duke with me and basically concluded that things were looking good. All organs were functioning normally and his electrolytes were also normal. Jaden's chimerism (the last ones from CHO) also were the best they've ever been. His whole blood count was at 90%, his lymphocytes (CD3) were at 60% (consistently improving since we started the immunosuppressants) and his granulocytes (CD 33) were at 100% now! He was very pleased with these results and said he would check chimerism every month for the next 3 months. If the counts remained stable, we could start the gradual weaning of the immunosuppressants. However, if the counts continued to rise, we would hold on the current dosing. Our goal, after all, was to be at 100% in all three areas.
After the clinic visit, Jaden also had an evaluation with Dr. Aguilera, a physical therapist at CHO. I wanted to know if Jaden truly needed physical therapy, whether it was more lung issues, or whether he just needed to rebuild his muscles over time by playing. Dr. Aguilera performed some simple tests and told me Jaden did not need to start physical therapy. However, she did assess that his core was very weak and his muscles were stronger on the right than his left (which was the reverse of what should be the case if he is truly left-handed). She noticed that his thumbs were fairly strong--I attributed that to all the hours on his D.S.! She mentioned that the best thing for him was Martial Arts. Other activities like yoga, gymnastics, walking/running, dance, and activities requiring balance were also good for him. What? Wait a minute...Jaden has been doing Tae Kwon Do for several years now. He hasn't been able to return to class yet and feels horrible every time he watches Devin at his TKD class. All I've heard is "If I hadn't stopped MY classes, I'd be a red belt by now!". Since Jaden can't be in a group setting just yet, I was actually contemplating private classes with his instructor, but thought the cost would be prohibitive. I asked Dr. Aguilera if she would document her recommendations in a letter that I could use with the insurance company, or even through the transplant fund, so I could see if I could get Jaden back to his martial arts training. Dr. Aguilera readily agreed and I felt a little better about things.
Our next appointment was with an endocrinologist. The BMT team felt that we need to look at weaning Jaden off of the hydrocortisone and for that we needed to consult a specialist. We had our initial appointment last week with Dr. Ahmad (also part of the CHO network of medical professionals). Once again, I was completely perplexed by how communication is NOT transferred within this organization. I had to review Jaden's case yet again and let Dr. Ahmad know why we were there. He didn't even have enough information to formulate a treatment plan, but told us that he would check with the bmt team at CHO to see whether Jaden needed to be on the steroid for any reason. In the meantime, he wanted to start by cutting Jaden's hydrocortisone dose in half. I asked how long it would take to wean him off completely and Dr. Ahmad told me it normally takes a month or so, but because of Jaden's situation, it may take several months. This seemed like a drop in the bucket considering all Jaden's been through. We then discussed Jaden's growth. Again, Dr. Ahmad had no data, so he did a height and weight measurement on both me and Jaden (luckily, I was able to get away with height only!). The doctor said he would track Jaden's growth and ordered a bone scan to check for Jaden's "bone age". This was basically an x-ray of Jaden's left hand, but it would allow Dr. Ahmad to know if Jaden's growth was on track so far (i.e. do his bones look like those of a 7 yr old?). Dr. Ahmad handed me the order for Jaden's x-ray and told me that he would email me once he heard back from CHO.
Well, a few days later, I got word from Dr. Ahmad that Jaden's bmt team had given their go-ahead to begin the wean. What caught me by surprise was the speed of the wean based on Dr. Ahmad's plan. Jaden was to decrease his dose, nearly in half each time, week to week until he was completely off of hydrocortisone. This was all to happen over the next 3 weeks and he wanted a cortisol stem test by mid September to see how Jaden's body was doing. Dr. Ahmad had warned me that should Jaden exhibit any symptoms such as extreme fatigue, diarrhea, vomiting, or a fever of 100.4, I was to give Jaden a stress dose of the hydrocortisone and call the team immediately. We would then slow down the wean (or essentially start again).
As excited as I was to have Jaden off steroids completely by mid-September, I just didn't feel right about weaning so quickly, especially considering the length of time Jaden had been on steroids over the past few years and all that his body had endured. Luckily, we have many medical professionals in the family, so of course I got in touch with one of our cousins who happens to be an endocrinologist in LA. He reviewed the plan and agreed that the timing seemed to be too soon. He recommended that given Jaden's history, we should wean him gradually--taking the dosing down a notch every 4-6 weeks. Once I got confirmation of this, I immediately responded to Dr. Ahmad's email, asking him to slow the wean down. I can only imagine the doctor's shock when he reads it--I'm not sure if he's used to patients dictating their treatment plan, but he obviously hasn't gotten to know me yet ;-)
Now on to the social aspects of healing. Jaden is still incredibly lonely. As much as I am trying to get him involved in things, he is ultimately lacking what he craves the most--the company of other children his age. To get him out of the house (and therefore the TV/video game cycle), I've enrolled him in his first music lessons. Jaden chose drums and seems to be enjoying the experience. I had the conversation with his instructor about wiping the drumsticks down and making me aware of any students' illnesses. Mark assured me that as a working professional (he plays with a band in the evening), he cannot afford to be sick either so he is very stringent about the "stay home if you don't feel well" rule.
School started this week and I could tell Jaden really wanted to be with his class. As is tradition in our family, Guri took loads of "first day of school" photos. However, Jaden kept whispering "it's not MY first day of school. I can't even GO to school yet..." It broke my heart. Luckily, Jaden's 2nd grade teacher is the same one Devin had, and she is outstanding. Even better is the fact that there are several kids from Jaden's kindergarten class in his 2nd grade class, so the transition back to the classroom (hopefully by spring) should be relatively easy.
Every year on the Friday before school begins, the school hosts a "welcome back" event in the quad. This time, I decided to take both boys. I figured it was outdoors so it shouldn't be too bad and it would give Jaden the opportunity to meet his teacher and hopefully run into a few friends along the way. I probably should have cleared it with the bmt team first, but at this point, I have learned it's better to ask for forgiveness than to ask for approval ;-) Yes, ideally, we can keep Jaden in a bubble until he's completely weaned off all immunosuppressants and that's the best approach to ensure he doesn't get any infections, but it's not reality for a 7 year old boy who's been in captivity for nearly 18 months. So, I give him more leeway than the medical team would. I let him run around outside without his mask. I let him have play dates, without his mask, and I let him have the occasional piece of cake from Starbucks (as long as there's no cream on it that could spoil on the shelf).
You should have seen the look on Jaden's face as he entered the school campus. His eyes lit up, he was grinning from ear to ear and he let out this squeal of delight as soon as he saw his buddy Thomas. We even found the tile he had decorated for the school's 10th anniversary project on the steps of the school. Jaden and Thomas ran all over campus and then I introduced him to Mrs. Johns, who was as wonderful as ever. I warned her that Jaden's "kinder posse" was in her class and that she would need to keep an eye on them! She was thrilled and shook each of their hands. I asked if the classroom was open and of course it wasn't, but Mrs. Johns had the key and was more than willing to let Jaden take a peak.
Jaden was so thrilled to be inside a "real classroom". His last experience was in kindergarten, where they didn't have individual "big kid" desks, so he just walked around and took it all in. Mrs. Johns was kind enough to indulge us in a few photos. I wanted Jaden to have the memories of his first day of school, even though he wouldn't actually get to experience it until next year.
Then Mrs. Johns and I went to work thinking of creative ways to keep Jaden engaged with his classmates. I suggested Skype and she mentioned podcasts. She said she would work with the computer teacher to get set up. I ended up going to Back to School night and when I saw the break-out sessions listed on the class schedule, I had a brilliant idea (well, I guess all my ideas are brilliant, so I should just say I had "another idea" ) ;-). I wondered if Jaden's medical team would allow him to attend any of these sessions. There was Library time on Mondays, Computer Lab on Tuesdays, PE on Wednesdays and Fridays....or how about Music on Wednesdays? I had to get Jaden into the classroom, however brief the time period may be. There were also two field trips this year: one to a local grocery store and the other to a wildlife museum. I had already gotten approval for Jaden to attend the field trips, but knew that the second one was probably out of the question at this time.
I called up Nurse Sherrie and told her about my dilemma. Jaden really needed face time with his peers. He needed to feel normal again and I had to do whatever it took to give him that. I wasn't ready to compromise his health or delay his progress, so I needed some guidance. I reviewed all the options with Sherrie and she went over pros/cons of each. Sherrie recommended that we try ONE activity a week first to see how Jaden did. Of course, Mrs. Johns would need to call me ahead of time to let me know if there were any sick kids in class that day (especially if a rash or chicken pox was involved). Sherrie suggested we try computers, but I felt that Jaden looked at a screen for hours on end already and it was the interaction with kids he really missed. Sherrie then suggested Music. Like everything else, there were restrictions. Jaden should not arrive or leave the classroom with a group of children, he needed to sit at the back of or in front of the group (i.e. not in the middle of a group of kids), he needed to wear gloves to handle any instruments and then wash his hands immediately afterwards, and he had to wear his mask in the classroom. These were tough guidelines and I knew Jaden would feel self-conscious with the rules, especially having to wear the mask and gloves in front of his classmates, but I hoped the ability to get out of the house and into his classroom outweighed the restrictions. We then discussed the field trips and Sherrie confirmed that the wildlife museum was out of the questions. She was familiar with it and said that the animals were often taken out of cages and handled by the kids. Sherrie suggested I do something special with Jaden and a few friends that weekend to compensate for the missed field trip.
With the approval from Jaden's medical team, I quickly sent off an email to Mrs. Johns reviewing our plan of action. I was so excited that Jaden would be able to be with his classmates, even though it was only a half hour a week. I was equally anxious about the experience. Was I exposing Jaden unnecessarily to other kids, and therefore more germs? Was it too soon? Was I pushing my luck? Jaden was doing so well, I really didn't want to impact his recovery, yet I felt he really needed to get out with friends. What if Jaden got an infection and was then quarantined even further? Would I forgive myself? Would Jaden forgive me? Is it better to just wait until he's able to attend class regularly, even though that could be months away? Sherrie had also mentioned that Jaden would be pretty tired when he starts going back to school. He hasn't had to focus for long periods of time, certainly not a full day, for nearly a year and half. She even said we may eventually have to consider an independent study program until Jaden is MENTALLY ready to resume school full time. More things to stress about....but knowing the fighter that Jaden is and how determined he is to get back into the classroom, I'm sure he'll pull through just fine.
As I said, I've been trying to squeak through as many priveleges for Jaden as possible. He was so upset he couldn't go to the family wedding in July, especially since Devin came back with stories of all the fun he had with his cousins. I had promised Jaden I would ask if he could go down and see his cousins just for a weekend. Luckily, I got the green light and Jaden enjoyed his first trip back to LA with Devin and Guri. Initially, he threatened that he didn't want anyone (ie his siblings) coming with him. I think he wanted to bask in the attention all by himself. Ultimately Devin, being the smooth talker that he is, convinced Jaden that he needed a body guard and personal assistant and so was allowed to tag along.
Jaden had the time of his life in LA. He saw his grandparents and told me how different everything in the house looked. He also visited with Gunu bhua and his cousins. I heard he wanted to be there from morning to night every day and Guri had to drag him back home at the end of the day. I swear he and Gunu bhua have a special bond. He even pushed his limits, dunking himself once in the family pool, even though I had given strict guidelines that "no oriface be submerged in the water!". He had water gun fights, went to a pottery studio, ate and drank and generally got to forget about the doctors and medical procedures for a few days. In short, he was in heaven.
Seeing how elated he was, I kept asking for more. Could he go to LA for Thanksgiving break? Would he be able to attend Thanksgiving dinner? I was waiting for the "NO", so I was shocked to hear Dr. Garcia say he had no issues with it. I was floored. Really? But, my husband has a very large family...there will be lots of people there...everyone will be in close quarters???? Dr. Garcia told me that in this situation, all of those people were family and therefore knew about Jaden's condition. I'm sure they will all wash their hands and tell you if they have the slightest cold. Where the bmt team gets concerned is when Jaden is in a crowd of people where we can't control exposure. We don't know if anyone is sick and don't know if they have been exposed to others that may have been sick. I totally get this and it makes me so happy that most of what Jaden wants to do, he will be able to (as far as visits with family and close friends). This also gives me the green light for all the holiday get togethers! I'm so thankful Jaden can participate. He's been dying to get out of the house. He doesn't want people over as much as he wants TO GO to their place, any place, just not THIS place! I have to remind him we can't just invite ourselves over to everyone's home, to which Jaden responds "why not?". Ahh, the innocence of youth... can't wait to start the meet and greet this season!
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