transplant question

[Guest guest]

Kim,

For me getting a transplant. They waited for this person to die. As soon as

he died they have 12 hours to harvest and fly the organ to wherever in my

case came from Wisconsin. What I understand they were cutting it close for me

and the liver to survive. I will take my thousands of drugs without question

every day. I went through a hell of a lot to get an organ. Cheryl and her

hubby did a living donor that she will tell you about. Also depending on how

sick you are determines if you are even considered for living donor. I feel

it is still new in the market but it works. A friend of mine offered to give

me half his liver but I was way to sick to make it long enough to work in my

body.

gayle/trans.6-99

galye@... ^0^

`

[Guest guest]

Dear Trish,

I think Patti gave as good of an answer as any of us can get. Each person is different and their body does this illness in its own way. I remember one gal last who went off the tx list after being on it for about 7 years! My doctors said that for Hep c there is a more predictable course but that with AIH there is not. Kelsey may live a long happy life without having to consider transplant or she may have a transplant at some point and then live a long happy life

Try not to stress too much if that's possible with your child, but follow the drs lead and know that things are always getting better! Give yourself and that sweet little girl a big hug from me.

Amy

[Guest guest]

My husband came up with an interesting question. If kids with Down syndrome and leukemia relapse and require a bone marrow or stem cell transplant, does the trisomy complicate the matter of finding a donor, or is it just the same as for kids without Down syndrome? Anyone have any experience in this?

Thanks,

Bethmom to , age 4, diagnosed with high-risk preB ALL 10-29-03, on CCG1961-cwww.caringbridge.org/in/kylefacts

[Guest guest]

Im not exactly sure but when my son was diagnosed there was a little

boy with DS that had just been transplanted. He was a twin so he got

his twins bone marrow. I ran into him in the oncology clinic a year

and a half ago and he had relapsed. I asked my oncologist about it

and he said that it is very rare for that to happen. His twin didnt

have DS so I would not think that it would be a problem.

We are going for a check up on Nov 18th so I will ask him then.

Hugs

> My husband came up with an interesting question. If kids with Down

syndrome and leukemia relapse and require a bone marrow or stem cell

transplant, does the trisomy complicate the matter of finding a

donor, or is it just the same as for kids without Down syndrome?

Anyone have any experience in this?

>

> Thanks,

>

> Beth

> mom to , age 4, diagnosed with high-risk preB ALL 10-29-03, on

CCG1961-c

> www.caringbridge.org/in/kylefacts

[Guest guest]

The search of a donor starts at home with siblings. Each sibling has a

one in four chance of being a match. We were lucky.

Jan (31 with down syndrome) had a transplant a year ago with her older

brother as donor. The questions about a trisomy match didn't come up.

So she has " boy blood " and her white cells are not trisomy, so is she

now mosaic?

She is also doing very well and we can call her cancer cured (for now)

because her entire blood system is replaced.

The doctors said that it is actually better to have a less than perfect

match (perfect would be an identical twin). There is a leukemia vesus

graft reaction in which the transplant goes agggressively after any

remaining leukemia, should it still be there at transplant time. Of

course there is graft vs host disease, but they are getting better at

handling that. Jan has had one flare up of that , but the transplant

team hopes eventually to taper her completely off anti-rejection drugs.

She in now strong and healthy 13 months after the transplant.

So the short story is that trisomy-21 doesn't really complicate the

transplant, which is scary enough without that worry.