Ginger here, checking in with an update on Ian’s progress. Things have been very good, not a day goes by when I am not grateful for being able to do normal things with the boys, like the park, the zoo, another park, more parks.
I am very germaphobic, so we are still sticking to mostly outdoor activities, since it is flu season. Despite that, Ian (and everyone else) picks up their share of germs and I am learning that Ian is still susceptible to developing pneumonia. We all got a little something at the very beginning of the month and Caid and Henry got through it with runny noses, a cough, but Ian’s turned into pneumonia in both lungs. We avoided the hospital, but had to spend several hours in the pediatrician’s office for several days getting antibiotic injections and breathing treatments.
Ian has permanently damaged lungs from the pneumonia and HLH flare that caused his respiratory failure and almost took his life. Our pediatrician encouraged me by saying that as he grows (and therefore as his lungs grow), the percentage of the damage will become smaller in proportion to his lungs, so he may be able to overcome some of this difficulty with developing pneumonias frequently. He said he may not be able to participate in sports that require a lot of exertion, we just have to wait and see how he does. And when I asked if this means that Ian should definitely not smoke, he was adamant about his agreement. 🙂
We had our monthly checkup at CHOC for blood work and Ian gets to take a break on vaccines for 9 months or so. One has to be completely revaccinated post BMT, because a BMT wipes out the immune system and replaces it with a new one. So, another thing poor Ian has to endure. When strangers comment on how he is so much “less friendly” than Henry, I don’t go into why, because they don’t really want to know; they just think they are making an observation about how “twins are always so different”. Which they are. But still…
Anyway, so because it is the height of flu season and we are going to the cancer clinic where every kid is immune compromised from chemotherapy, CHOC asks that only the patient and parent come to the appointment. Luckily, Papa Steve is close to CHOC and has been able to meet us there to watch Henry for the approximately 2 hour appointment.
So we received his latest chimerism number (the percentage of donor blood system) which was 57%. I know, that sounds bad, but his previous was 53%. When the doctors got the 53% number, they sent a T-cell chimerism count in addition to the regular chimerism. Basically, T-cells are the important thing with HLH. The donor T-cells are the thing you need to keep HLH from “re-flaring” (if that is even a word!) The T-cell chimerism count came back as 100% donor, which is excellent news. So we don’t worry about the 53% or 57% chimerism numbers, we just keep watching it. Â Why don’t they just do a T-cell count every time? My guess is, because it is ridiculously expensive and specialized. So they just do it when they are worried about dropping chimerism numbers.
So yay for that news! I am daily reminded of how fortunate and blessed we are to have Ian, and to have him doing so well. As I have learned more about HLH, I really see how many obstacles there are, not just with the diagnosis and the disease, but with bone marrow transplant. And we have been incredibly blessed with so much support from so many!
They also weaned his sedation and pain medications a bit. This is so he would begin to initiate breaths, which he is now doing, so he is on a different setting on the ventilator which gives him extra pressure with each breath.
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