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Transplant? We have just returned from Cincinatti Children's Hosp. where we discussed possible unrelated perfect matched bone marrow transplant. Anyone with any experience or knowledge PLEASE email. Thanks so much- Dawn
Submitted by Dawn Adams on Fri, 2007-01-12 13:40. categories [ Medication and Treatment ]
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 Hi Dawn and family, Thanks for sharing your CaringBridge site and all the wonderful pictures and your daily log. I hope this is a 100% cure for both boys. I’m sure you’re under a lot of stress, but day 8 looks very good! We are praying for your family. Let’s hope that Zach and Jaxsen will have no more CGD worries. Please keep everyone posted and we’ll be reading your journal. Mary, Alan, Erik and Stephen Hurley Hi, my son is now 7 and he had a matched unrelated donor stem cell transplant when he was 5 (March 2005) for CGD. He is now considered cured of CGD and is 100% engrafted from the donor. Stem Cells and Bone Marrow transplants are the same thing basically, just a different way of harvesting the cells from the donor. There are many things to consider and it is a bit too much to explain in this message. I am basically pro transplants as an option but quite a bit depends on the circumstances and how your child is doing. The most important thing overall I think is being in a medical center that it is in constant touch with the latest developments in both transplants and especially transplanting with CGD because there are relatively few CGD transplants and they seem to learn something all the time. Also, although we are American, we live in London and my son had his transplant at Great Ormond Street Hospital. Until recently, for CGD, most unrelated donor transplants were done in Europe and UK. There is a specialist in Switzerland who probably has more experience than anyone and often liases with centers regarding the latest trends etc. It's a tough decision overall because it can be quite a grueling procedure. The survival/cure rates are much better now - we were told 90%survival and then of those 90% are cured. But the one certainty is that something unexpected always happens. I would be happy to discuss anything in greater detail by email etc. I will try to send a private message with my email Good Luck. My son turned 4 in May and in July began to present symptoms of CGD Colitis. It's been a long summer with lots of medication and procedures. He's on a high dose of prednosolone and has all the side effects: moon face, irritability, short temper, facial hair growth and hair loss (on top of head). It's so difficult to see him going through this. Reading all the postings, esp yours, has me very interested in BMT or stem cell transplants. I'd love to chat more about it. Please email me at kkdhaliwal@sbcglobal.net. I really want to learn from your experience and see if my son would be a good candidate. Kiron hi tessie- i really don't check the cgd board much, but my email is dawnmmadams@hotmail.com, if you would like to email me. i have a lot of info about transplants if you want to talk please email. thanks- dawn Hello Dawn. i would love to email you and discuss some things too about transplanting-I too have a son with cgd,Logan whos 8 yrs old but I dont know how to email you or get your email address-mine is Jamietrobaugh@peoplepc.com Email me anytime Jamie Trobaugh hi jamie- i tried to email you twice and it keeps coming back to me. please email me at dawnmmadams@hotmail.com or dadams@atkinson.k12.ga.us . i would love to talk with you. thanks-dawn
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we are here at duke...3 days post transplant...pls pray for new marrow to produce perfect blood and for all organs to perform perfectly. the boys website: http://caringbridge.org/visit/zachandjaxsen
thank you for all the support and encouragement. dawn