Bone Marrow Transplant

Trisha's picture

I know this topic has come up quite a bit lately.  Our docs have never discussed the option of doing a bone marrow transplant until recently.  We just found out that our baby boy is a match for Caleb, who is 3 years old.  We will be meeting with the transplant doc here at CHW soon and discuss the options.  I do know that they have recently done a successful "partial" transplant for a child with CGD.  (sorry I don't know the correct term as this is all new to me.) But other than that, I don't think they have done a BMT for any kids with CGD

 To be honest, I really never thought we'd be going down this road and want to make sure we make the best decision for our son.  I feel very overwhelmed.  What questions should I be asking?  Should we even be considering doing it here, since it's so new for them?  I'd appreciate any information that you have regarding this topic.   You can also email me at trishateisl@hotmail.com if you'd like.

Thank you so much,

Trisha

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Submitted by Trisha on Thu, 2009-04-23 11:24. categories [ ] login or register to post comments
bmt options--my findings
kiron's picture
Submitted by kiron on Fri, 2009-04-24 19:14.

Hi Trisha,

BMT is a frightening yet exhilarating option for our CGD kids. My 5yr old was diagnosed at 23 months. I started researching BMT on my own as a long term solution about 2 yrs ago. I read a few posts on the forum and then did a ton of research on my own.

 I emailed Dr. Malech at NIH and got his feedback and spoke with leading experts in the field, including Dr. Curnutte and Dr. Lewis (Children's Hospital@ Stanford). To make a long story short, after much research and discussion, we are moving forward with a BMT for my son this summer at Duke. My older son is healthy but was not a match. We ended up using pre-implantation genetics and IVF to conceive my daughter (born 2-11-09!). Gia is an identical match but also a CGD carrier.

 My understanding is that the best case (ie minimal complications) is when you have an identical sib match, which is why we opted for PGD/IVF. You are in a great position for bmt for your son. I would not settle for your local hospital. You want to go with a facility that has the most experience in doing bmt for CGD not just any immune deficiency. Having a great team that is familiar with the issues that arise with CGD is critical to success.

I started by pulling the ratings from several websites. There is so much data to compare and so many questions to ask. I have a word doc that I created and I used when speaking with each director of transplant at an individual facility so I could compare apples to apples. I'm happy to email that to you if you'd like. You can reach me at kkdhaliwal@comcast.net.

We are in CA, so I spoke with Stanford, Children's Hospital Los Angeles, and UCSF. I also spoke with Dr. Krance at Children's Hospital Texas because so many people seem to have gone there. I asked every doctor I met for recommendations. I asked Dr. Malech at NIH and he highly recommended Duke and Cincinnati Children's Hospital, esp. for our case since we will be using cord blood (Duke is expert with cord blood and has lots of CGD exp also). Ultimately, I felt most comfortable with Duke. Yes, it's clear across the country, but i want to give my son the best chance of success. I want to minimize complications and know I have the best available for him should something go wrong.

You should research several places and go with the one you feel most comfortable with. It's been a long journey, but I'm so excited about Jaden being cured hopefully by the end of this year!

 Good luck in your search and let me know if I can help in any way. The process is highly confusing and very overwhelming.

 Kiron


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