We get the results from the previous week each Tuesday, so we just received the 73% news today, and they did a blood draw to find out where the number is now. The stabilization of numbers is VERY good and we pray that it continues to hold steady. If his numbers are dropping, there is risk that HLH could reactivate. So, if they see the numbers falling, they would do a procedure called a Donor Lymphocyte Infusion (DLI) that they can do to “boost” the donor numbers, before risking the HLH flaring again. Caid would have his blood drawn and they would separate out the Lymphocytes, and give Ian an infusion of them.
This procedure can increase the risk of developing Graft vs. Host Disease. The main difficulty with DLIs is that there isn’t a lot of information for when exactly they should be given (in terms of what the chimerism numbers are doing). The is evidence of some kids with HLH who have very low percentages for their chimerism numbers, but as long as they are holding the numbers steady, they do not have HLH flare up and may not need any DLIs.
So, if you would like to pray that his numbers hold steady and we can avoid the whole thing entirely, that would be appreciated!
Henry had an immune function workup at CHOC, to perhaps give us more information about his risk of having HLH. When we found out we didn’t have any genes identified for the mutation, we knew that we couldn’t have any definitive answer, but these tests were offered as something we could do to get as much information as possible to find out if his immune system is functioning normally. These tests were also done on Caid as the donor, and results came back normal for him. We are still waiting on Henry’s results.
Ian has been doing extremely well with his physical therapy. He has a physical therapist who comes twice a week to work with him, and he has been making great progress since being out of the hospital. He just got orthodic inserts for his shoes this week (they are the cutest!), which we are told will likely help him with his balance by helping everything be aligned properly. He also has speech therapy once a month, and has been saying more words recently.