User loginNavigationActive forum topicsRecent blog postsWho's onlineThere are currently 0 users and 1 guest online.
Feeds your need
|
Bone Marrow Transplant Hello all, I just registered for the new site. I have only posted a few times on the old one. My son Nick is now 12 years old and has x-linked CGD. He has been doing well for about a year. I also have a daughter, Olivia. She is now 4. She is a carrier of CGD. The thing is, she is a perfect match for Nick. The doctors are wanting to do a bone marrow transplant. I have researched this for a while now, but am still wondering if we should do it. They stated even though Olivia is a carrier, Nick would be cured. My wife and I are still very concerned, but are thinking it is Nicks best chance for a long, healthy, normal life Who here has been through a transplant? What should we expect? I know this will be hard on Nick, but the docs feel it is best when Nick is healthy and young. I know this will be expensive, did anyone do fundraisers to help with costs? I have a million questions, but just wanted to see who has been through this, and how did it turn out? Tom
Submitted by tbeauman on Tue, 2008-09-23 07:19. categories [ General Discussion ]
login or register to post comments
Thank you Katy and Kiron for your comments. It has been a while since I have been on this site. We have made the decision to have the bone marrow transplant. Nick will have his transplant on June 10. It has been very busy with appointments and trying to spend as much time with the kids as possible, knowing we will be living in the hospital for at least 6 weeks (probably 3-6 months). My wife has started a caring bridge site if anyone is interested in following his progress. We have been trying to update it, but it has been busy. It will be updated more often once he is going through this procedure. The address is http://www.caringbridge.org/visit/nickb Nick will have to have a few procedures done before his transplant. On May 22, he will have sinus surgery, colonoscopy, disease marker tests and whatever else the doctors can fit in on the same day while he is in the O.R. Nick is actually excited (and scared) because the doctor just told him he no longer has to have his Actimmune injection. That is a big step for him since he has been getting the "shot" since he was 4 months old. that's wonderful! I'll be following Nick's journey and wish your family all the best. We are all leaving for Duke on June 12 and Jaden will start his work-up on June 15. I'm praying that all goes well and we can move forward with the transplant, scheduled for July 9. I've started a blog as well if you're interested in following our journey: http://jadendhaliwal.blogspot.com/ Keep us posted on Nick's progress! Kiron Hi Tom, I haven't been on the forum for a while, so I apologize for the late comment. We're in a similar situation in that our daughter, 2 mos, is an identical match for our son with CGD (5 yrs). She was conceived via IVF/PGD and when we found out she was the only match of the eggs we had, we were very concerned about moving forward with Jaden's bmt. His doctors encouraged us to move forward and told us it would still work out. We will be heading out to Duke for Jaden's transplant in June, so I can't answer a lot of your questions. However there are several blogs about CGD patients who have undergone bmt. The most recent one is about Zach and Jaxsen Hunkapillar (see http://www.caringbridge.org/visit/zachandjaxsen). I've been following their journey and it's a tough one. However, they had an unrelated donor, so I think there is more potential for complications. There was also another little boy that had his transplant a few years ago at Texas Children's Hospital using marrow from his younger brother (identical match). His site is http://williamwright.blogspot.com/. Hope this helps. I'm with you as far as giving Jaden the opportunity for a normal, healthy life. The quality of life our kids can have is worth the short-term discomfort. Good Luck and keep us posted! Kiron
|
|
Hi Tom,
My husband and i are also considering a transplant for our son Joey--he is 2 1/2. My daughter who is 6 months is not a match--but he does have outside donor matches. We would be happy to talk with you as we have done a bit of research and have talked with many doctors. We have not yet decided if we will go through with a transplant yet--we are just gathering information. Hope you are all well. Feel free to e-mail me at kbbuchta@hotmail.com.
Katy