Urgent need for Bone marrow Donor testing

[HappyGilmore]

Urgent need!!!! Four month old baby in need of bone marrow donor!! Please see www.ethanpowell.com. I have a 4 month old daughter myself and can feel the parents' pain. We need to get the word out to try to find 2million donors to be tested.

 

[tar heel]

I've been on the registry for years. DH and I both registered when a friend needed a transplant and didn't have a family match. Her prognosis was not very good, and she's doing great now.

 

[FeeleyFans]

I read his story and it is so sad to see a little baby suffer so much. I'm sure the DISBOARD will come through in getting the word around.

 

[Hillbeans]

I was Bone Marrow typed close to 15 years ago now....would I still be active on the registry? I hope so.

 

[peanut12392]

DH and I were also tested and put on the registry years ago, we continue to keep our address and phone numbers updated, but have never been contacted. My Brother needed a transplant, but none of us matched. He is
fine now.

 

[virgojmk]

I have been following Ethan since he was diagnoised. I too have been on the registry for over 12 years.
My best friends, daughter was diagnoised with AML at age 2 (leukemia like Ethan). She underwent a bone marrow transplant from her brother, but the transplant failed.
She managed to get accepted into a clinical trial at St Jude's (where Ethan is). Thankfully, we got word she was accepted to St Jude's the day the notice came from her ins that they would not cover another transplant. The move of course was difficult as they had to leave the siblings back home in CA to go to TN.
In this trial they took bone marrow from her mom and washed the ones that didn't match out. And put the matching ones back into Stephanie.
It was very rocky at the beginning, but she managed to make it thru and is now 15 mos since transplant. She just celebrated her 5th birthday, something we never thought we'd see. Survival rates with this strain (she's has AML M4 AND M5)are around 20%.

 

[daisax]

I'm yet another person in the registry for 10+ years and never contacted.

My best wishes for Ethan to find his perfect match.

Folks, if you've never thought about it, keep your eyes open for the next local bone marrow drive. Next month is National Bone Marrow Drive month so there should be one in your area (or do a search for National Marrow Donor Program). If you register at a drive, often there is no fee.

It's a simple cheek swab -- it's that simple.

I figure I don't know if I'd be brave enough to go into a burning building to save a life -- I do think I could undergo a medical procedure to save one, though. If you'd do it for your own children and family and friends... think about offering that gift to somebody else's children or father or mother.

They also collect umbilical cord blood for treating patients with cancer. That's certainly painless (just involves some paperwork to see if your delivering hospital participates)

They particularly need more participation from African-Americans, Asian-Americans, Latinos, Pacific Islanders and other minority groups that are very underrepresented in the registry.

 

[wdwfamilyinIL]

He is such a pretty baby! I have heard of blood drives around here, but to my knowledge I have never heard of a place to get tested for bone marrow. How does this work?

 

[Lisa loves Pooh]

Poor baby!

I registered during a bone marrow/blood drive I had set up as part of a fundraiser for LLS.

FYI--it is free to do this if you donate blood...you must let them know ahead of time that is what you want to do so that they will set you up for it. They will draw some extra blood and that is sent off for typing and places you in the registry.

I never knew you could do a cheek swab though.

 

[MCazer]

I've also been on the list for about 15 years. I was called once, and had to submit more blood, (had to go to a Diagnostic center with a kit), but I did not match the secondary test.

My husband and I both registered when a little girl in our town needed a transplant. We moved, so I don't know how it turned out for her.

 

[irishbosoxfan]

http://www.marrow.org/

For those on the list you can go her to update your info.

 

[DisneyMommyMichelle]

wow, that porr family.

 

[mrsbornkuntry]

Along these same lines, if you are able please donate blood.

And some more info on donating cord blood: Often people don't realize this is FREE unless you are storing it for your own family's use, however if someone in your family is ill NOW and is going to need it there are free programs for storage as well.

When my son was 2 he was also diagnosed with AML. He went through chemo, was in remission for 15 months, then relapsed. All of my children were tested and didn't match, but I was pregnant so we harvested the umbilical cord blood when the baby was born (truely painless, and otherwise thrown out). Everything involving it was free, but they weren't able to get enough to use it for my son because of his size/age, but the doctors at Duke were able to use cord blood that someone had donated. It saved his life, his eighth birthday is tomorrow and he has been in remission for 4 years.

 

[TenThousandVolts]

Can someone explain- if you are a match and you are called upon- is the marrow donation process a major surgery?

 

[m&m's mom]

This is a very good reminder. I have been meaning to do this but did not know how. I have donated blood every 8 weeks or so for years and no one has ever asked if I want to sign up. I will ask next time I go.

 

[lost*in*cyberspace]

Can someone explain- if you are a match and you are called upon- is the marrow donation process a major surgery?

http://www.mayoclinic.com/health/bone-marrow/CA00047/rss=1

 

[PatMcDuck]

We (me, husband, 2 adult sons) will be sending for kits to register soon. My 14 year old daughter was in the hospital this year for 30 days, from Jan 26-Feb 26, with a very very rare illness called HLH (Hemophagocytic lymphohistiocytosis). It is a blood disease, and comes in 2 forms, primary (genetic) and secondary (triggered by another condition, like a virus, infection, or cancer). We will soon complete testing to confirm that my daughters was secondary, triggered by mono. Briefly, Bridget went quickly into respiratory distress, onto a ventilator, transferred to a regional childrens hospital, kidney failure, onto dialysis, then liver and pancreas began failing as well......... it was a nightmare, but somehow the DRs and nurses at CHoP (Philadelphia) saved her, we almost lost her...... we had the DRs approach us with the dreaded words "do you both realize that she may not make it through this?"

The treatment for HLH is steroids, chemo, and for patients with the primary form, or recurring secondary HLH, a bone marrow transplant! HLH is not cancer, but still uses some of the same treatments......... While the odds are against it, if Bridget has primary HLH, or if she relapses, she will need a BMT.

So thanks to all of you from one of the families directly affected by a illness often treated by BMT. And also to all you blood donors, my daughter had 3-4transfusions while in the hospital, and another while finishing up her outpatient chemo treatments........ and those donations came from the local blood bank......... THANKS TO ALL OF YOU!

PS Bridget returned to school, high school freshman, 2 weeks ago. She is doing ok, regaining her strength, dealing with the lousy loss of most of her hair. She is quite brave!

 

[flakypuff]

I think this needs a bump..My heart is so touched.

 

[drivencrazy]

The little guy is in our prayers as well.

I just gave blood for the first time last Sunday at church! I have wanted to do this for quite sometime, but always found reasons not to......... I will be doing it more often now! I have O- blood, so know that it can always be used!

I am going to look in the the National Marrow Donor Program and see what I can find out!

 

[HappyGilmore]

bump