Guest guest Posted May 3, 2010 Report Share Posted May 3, 2010 Hi Carole, I'm Rick .. dad to 37 year old Jan who has DS. Yes, it is uncommon for adults with down syndrome to get leukemia, but it happens. Jan had AML at roughly Andy's age after being incredibly healthy up to her mid-20's. The " rare " leukemia that children with DS get (at a remarkably high rate of over 2% by age 10) is different from adult leukemia, which seems much more like adult leukemia for those without DS. It may even be less common that leukemia in the normal population, but it happens. We wish you well with Andy's treatment. For Jan, it was a second strike because it came after a rare auto-immune disease that put her in the hospital for three months and longer to recover. She went into remission after her chemo, grew her hair back and was a smiling bridesmaid at her older brother's wedding. In her case it only a few years for her remission to fail and she underwent a stem cell (bone marrow) transplant with her brother as donor. Today, she is a healthy and fit adult living much of the time in her own apartment and helping care for people more handicapped than herself. Also, now five years post transplant, she is on absolutely no medications. You are in for a rough time. Hopefully Andy will learn to manipulate the hospital staff as well as Jan did. She kept her spirits up and in turn kept ours up, even when things were really rough for her. I'd be happy to answer any questions that I can. Rick ... dad to Jan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2010 Report Share Posted May 10, 2010 I'm having trouble getting my messages to " go " , so hopefully you will receive this. I just wanted to thank you for your response. So far Andy seems to be tolerating the chemo quite well but it has only been a couple of weeks. He hates bone marrow biopsies and I think we have one coming up on Thursday to see how well the chemo is working. Since his anemia is improving and the night sweats are lessening, I'm optimistic. Thanks for sharing your story and I'm glad to hear that, even though it sounds like it was a long, hard road, things did turn out well for your daughter. Carole > > Hi Carole, > > I'm Rick .. dad to 37 year old Jan who has DS. Yes, it is uncommon for > adults with down syndrome to get leukemia, but it happens. Jan had AML > at roughly Andy's age after being incredibly healthy up to her > mid-20's. The " rare " leukemia that children with DS get (at a > remarkably high rate of over 2% by age 10) is different from adult > leukemia, which seems much more like adult leukemia for those without > DS. It may even be less common that leukemia in the normal population, > but it happens. > > We wish you well with Andy's treatment. For Jan, it was a second strike > because it came after a rare auto-immune disease that put her in the > hospital for three months and longer to recover. She went into > remission after her chemo, grew her hair back and was a smiling > bridesmaid at her older brother's wedding. In her case it only a few > years for her remission to fail and she underwent a stem cell (bone > marrow) transplant with her brother as donor. Today, she is a healthy > and fit adult living much of the time in her own apartment and helping > care for people more handicapped than herself. Also, now five years > post transplant, she is on absolutely no medications. > > You are in for a rough time. Hopefully Andy will learn to manipulate > the hospital staff as well as Jan did. She kept her spirits up and in > turn kept ours up, even when things were really rough for her. > > I'd be happy to answer any questions that I can. > > Rick ... dad to Jan > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.