Resources and information for parents of children with cancer . . . by parents of children with cancer.

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Parents' Comments on Bone Marrow/Stem Cell Transplants (FAQs)

Parents learn a lot about BMTs when their children go through the procedure. Sometimes it's easier to understand when a knowledgeable parent explains the process in their own words! As a disclaimor, we must say that these are parents comments and not medical professional comments.

Can someone explain why a persons' heritage so greatly affects finding a match for a BMT?

I have a difficult decision to make. Do I move my son to a BMT center that has more experience but that is very far away? The center I am in here in Madison, WI has done only 5 BMTs for children in my son's situation since 1993 and that is a poor track record that I am not impressed by. How does one decide where to go and what to base this decision upon? On the one hand I have people here who live nearby me and can assist me in this transplant process (i.e., family and friends). On the other hand there are much more experienced centers like Fred Hutchinson in Seattle who have done transplants for kids in our son's situation in the dozens. So what it comes down to is finding a basis to decide upon. How does one decide these things? Are his odds here just as good as anywhere else? How do you decide? Feedback would be greatly appreciated.

I didn't realize that this stem cell harvest/rescue is actually a BMT! Duh! The coordinator said it is an autologous BMT...can anyone tell me more? When we were first told about the procedure, they made it sound like no big deal, but I'm thinking a BMT IS a big deal! Help me here if I'm wrong! (LeeAnn)

I know someone who needs a bone marrow transplant: how can I help them find a donor?

  1. One drive was hosted in a hospital. So many healthcare workers came during the 2-days, plus many from the surrounding towns. See if anyone near you would be willing.
  2. Get media interest -- maybe a follow up story on the news could be in the papers and TV, Radio, etc. That brought a face, family, name, etc into the effort, and MANY people said they turned out because for the press. And Adam's perspective of what it was like to be a donor would be incredibly meaningful. And/ Or if you know of a child who is waiting for a BM match, perhaps their family would be willing to share their story. It's important.
  3. Have him form a committee to help him! It's a lot of work.
  4. Check with the Marrow Foundation or Leuk Society to see if they'll help fund or match funds, or pay the difference for ABDR testing (vs just AB testing). If you have big benefactors that will cover the drive $, let the public know it's FREE. More will come.
  5. The drives here were festive -- pics of our son, welcome signs (painted by our son, Travis -- 5 yrs old), nice soft music, balloons ALL over, raffles of merchandise (to offset costs of the drive) like donated Princess Di and Erin Beanie Babies, a signed print from Wrigley Field, etc. Also Fergie Jenkins (famous baseball player!) came and signed autographs at one drive. Brought out a # of people and got a lot of publicity for the drive too. One upcoming drive here in our town is having it at the Police Station and will have Fire trucks and Police cars etc and a kids lockup to get families to come even with their kids. Also, sign age is important. Make sure everyone can see signs from the street on that day to get to the right place. Other drives had people handing out flyers that day on the street to get people in.
  6. Media came to the drive and interviewed our son and many of the attendees. Did follow-up stories including how people can register if they missed the drive.
  7. Contact local corporations who may be willing to sponsor the drive, or fund part of it, or at least encourage their employees to attend (get time off to come).
  8. Put flyers all over with this poem and the dates and time of the drive:
    A hundred years from now
    It will not matter
    what my bank account was
    the sort of house I lived in
    or the kind of car I drove
    But the world may be different
    because I was important
    in the life of a child

    How can ANYONE refuse?
  9. Make sure the media or anyone else emphasizes that to register it is a small blood draw from the ARM. People have all sorts of ideas about the registration process that inhibits their attendance.
  10. Have Adam and Grant and your family there at the drive to thank people for coming. Give them something to hand out or do (Our son handed out Origami flowers he had made at one drive!)
  11. Post the drive on the listserves. Then people like us can include the date place and time on our web sites too, in case we know people local to you.
  12. No matter what the attendance, ANY number is a success. More in the registry than the day before.
  13. Contact EVERYONE you know -- and those you don't -- synagogues, churches, colleges, schools etc. To post the info re: the drive.
  14. Maybe do it in conjunction with a blood drive if you can't get anyone to sponsor place or time for a Bone Marrow Drive. By the way, we called ours Marrow Drives, so people wouldn't get freaked out about the Bone part and make up stuff... see 9 above.
  15. Have a book handy at the drive for people to sign, color, and write messages to whomever the drive is for (if you know one person who is waiting for a match). This is the most wonderful keepsake for us. Most of the people we do not even know!

What does the donor go through?

Please, tell me in person-to-person terms, what is a bone marrow transplant.

And what happens during a BMT? What will my child experience?

More personal stories:

OK, I need advice - sorry to all of you who have heard this before - what do I do with a 3 1/2 year old during this BMT process? How do I keep him and us from going crazy? Since I suspect he will not sleep through it, what do I do? Also - what can I give him that he will eat, so should i just expect to go on TPN?

General Disclaimer

These pages are intended for informational purposes only and are not intended to render medical advice. The information provided on Ped Onc Resource Center should not be used for diagnosing or treating a health problem or a disease. It is not a substitute for professional care. If you suspect your child has a health problem, you should consult your health care provider.

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