I am woefully behind on posting on here, so bear with me as I try to bring everyone up to speed.
First off, aren’t those paper cranes beautiful? Our son’s fifth grade class (or at least the class he attended before he had to switch to eSchool) has been making 1,000 paper cranes since September, and Darren’s teacher delivered them to us last week. I can only begin to guess how many hours were dedicated to this immense act of love. (If you aren’t familiar with the story of the paper cranes and what they represent, you can read about it here https://en.wikipedia.org/wiki/One_thousand_origami_cranes.)
Last Friday Kendall started his IVIG treatment, and we also had several appointments with different doctors including the head of his transplant team. We learned that the transplant team has located four different donors who are 9/10 matches for Kendall. We don’t know anything about them except that they are all male and live in the United States. The transplant team is currently in the process of trying to contact them to see if they are still available, if they will still be good matches after further testing, and if we can make the timing line up correctly. As of right now Kendall is scheduled to be admitted for his transplant on January 13th. That is lightening fast when it comes to a transplant, but we are in a bit of a race against the clock because…..(drumroll, please):
As of Friday Kendall is considered to be in remission. !!!!!!! I know, right? As far as they can tell they have killed all of the cancer in his body (no more mass in the hip, spine looks clear, lumbar taps have come back clear, etc.). The type of leukemia Kendall has is very aggressive, however, and often relapses. Because of his immune neuropathy (which we learned was, no surprise, very rare) Kendall is not able to do the neurotoxic chemotherapy treatments the doctors wanted to do up until his transplant, so they need to act quickly to do the transplant before the leukemia comes back. He is taking daily oral chemo pills, and receiving some other chemotherapy infusions (intravenous and through lumbar punctures) that are not neurotoxic. Kendall will also start radiation on Tuesday, to make sure there aren’t any cancerous cells the scans didn’t show. He is currently tattooed and ready to go. (How did I not know/remember that people are tattooed prior to undergoing radiation?)
There are actually quite a few things that need to happen before Kendall’s transplant. We need to confirm a donor, of course, but we also need to make sure that the fungal pneumonia in Kendall’s lung is completely cleared up. He also needs to get a lot stronger than he currently is. We’ve already seen some improvement in strength and mobility since Kendall started the IVIG (and even a little hair growing back!), and he is also doing intense physical therapy each day with the hope that he can regain enough strength to be able to withstand the transplant.
There are a lot of things we are learning about what the transplant will entail, but I’ll wait to post details until after the mandatory transplant class I will be taking next Monday. There are quite a few members of a transplant team, and we are meeting with each of them as we move forward with this whole process.
We’re grateful to have Kendall’s mother here in Utah for another week, and we’re working on figuring out how to do without her (she’ll be missed!) after she leaves. We’re also getting ready for a quarantine Christmas. It’s been a strange Christmas season, with some traditions set aside for this year, adapting some others, and creating a few new traditions all together. Kendall and I will up at the hospital tomorrow on Christmas Eve, but as of right now Kendall does not have ANY (!!!!!) procedures or treatments scheduled for Christmas day. Let’s hope it ends up being just a quiet day at home. We hope everyone has a wonderful Christmas!