Today was a stressful day as the start of our transplant process. Duke’s team couldn’t have been better, but I think there was really no way around our being a little tense at the outset of this.
Among the topics discussed was the possibility of a Reduced Intensity Conditioning regimen. Originally we had thought this was ruled out, I brought it up specifically at our transplant Q&A, but it has come up again. Through discussions with Dr. M and closely following Maya G’s story, as well as some discussions with other parents via email, we continued to stir the pot a bit about the possibility of Zoe being a candidate for RIC.
As it happens, Zoe was a big topic of conversation in the PBMT team meeting, and one of the docs had recently heard Dr. Filipovich speak on the subject. Between our agitating and this coincidence, we’re now back to considering this procedure.
There is a lot to learn, and we have a big decision to make if she is a candidate. We’ll know more later in the week and I will cover the details, but in the meantime I am working through two journal articles on the subject for those hearty travelers who wish to follow along:
The Use of RIC in HLH and LCH Patients (2008 study)
RIC and ASCT in children with malignant and non-malignant diseases (2008)
Invigorating reading, let me tell you.
Evan, I continue to be amazed, but not at all surprised, by the quality of your thinking and your blog. I told Michelle you would be a thorough, smart, and compassionate doctor! It will be a long week, but such thorough preparation will help Zoe make her way to a great outcome. I agree that she has what it takes. Love to all, Mara
Wow. The fact that the dr’s are looking into things because of your research gives me more faith in our systems. take the good ideas wherever they come from and run with them.
The maya g.link took me to
http://hlh.evanz.org/2010/04/hlh-a-simple-description
not sure if it was supposed to or not.
i will be wishing the best for your family harder then normal this week, Evan and Michelle!
Oops! Not sure why it went there but should be fixed now. 🙂
my son will start his conditioning tomorrow i will let u know the process up until the transplant day on september 30 he was diagnosed with hlh familal in april 2011