For many pediatric cancer patients like Claire who have leukemia or other blood diseases, a bone marrow transplant becomes a critical part of their treatment. While Claire’s doctors hope to continue to rely only on chemotherapy for Claire’s treatments, changes in her condition and the threat of relapse in the months and years to come mean that needing a marrow transplant could become a reality. We do know that she does not have a matching family donor. So should she require a transplant she will have to rely on an unrelated donor and hope that one is available that matches her genetic makeup. In researching her condition and treatment, Megan and Travis learned a lot about the marrow registry and matching process and just how hard it is to find a genetic match. It’s a scary thought for them and it also made them think of all the families currently waiting to find a match.
One thing we were surprised to learn, and suspect many others don’t know, is that no one is tested to find out if they are a match to a specific patient. Anyone who submits their DNA is entered into the registry as a potential donor to anyone in need. The more people who join the registry, the greater the chance of finding a match for a patient.
Join the registry
Visit http://Join.BeTheMatch.org/ClaireStrong to learn more and join the registry. There are a few criteria to join the registry:
- Be between the ages of 18 and 44 (once entered, individuals will stay on the registry until age 61)
- Be willing to donate to anyone in need
- Be in general good health
Less than 1% of people who join the registry will end up donating. The donation process is not painful and you could SAVE A LIFE.
My wife and I have gone through the registration process myself and it could not have been easier. You fill out a few questions online; receive a kit in the mail; rub a couple of swabs on the inside of your cheek and mail them back. That’s it! The first step is visiting http://Join.BeTheMatch.org/ClaireStrong
Spread the word!
Whether or not you are able to register you can still help out by sharing this campaign online encouraging others to register and share. There is a particular need for registry members of diverse backgrounds so the broader the outreach the better. Just share the link http://Join.BeTheMatch.org/ClaireStrong
Thank you for reading this long post and for your continued kindness to Claire and family. We would love to share a little of this energy with other families in similar situations. By using our unique Be The Match link, I’ll be able to update everyone on our campaign success. Thank you.
Baud
The title of this post should have been “Dear Goku”.
?BillinGlendaleCA
@Baud: Yeah, a good portion of the jackals are a bit older that 44(or even 61).
Steeplejack
@Baud:
True! ?
evap
I jointed the registry when a good friend’s daughter got leukemia and needed a bone marrow transplant. I was definitely older than 44, though. Unfortunately, the friend’s daughter got graft-host
disease and has struggled with that for almost 10 years.
Dagaetch
Been registered as a donor for years, ever since a friend was diagnosed with Hodgkin’s. Have also organized registration drives a couple of times. I certainly don’t want anyone to be sick, but if I’m ever a match, I won’t hesitate.
pacem appellant
Website says you can join the registry if you’re over 44 as well, but they won’t cover the cost of the the cheek swab (which it says is $100).
WaterGirl
@Baud: LOL literally. But we have some folks with young kids so everyone isn’t OLD.
VeniceRiley
Okay, OLDS, time to voluntell your adult kids.
Mary G
Not eligible, but will pray Claire doesn’t need it, or finds a good match if she does.
MomSense
I’m not eligible because of my VWD. I’ll repeat the offer to make hats for people who are going through chemo and their families.
I make knockers, too if anyone needs them or knows someone who does.
Roger Moore
I’m a stem cell donor, and I want to say that the “not painful” needs quite a bit of clarification. There are two ways you can donate: an actual bone marrow donation or a donation of peripheral blood stem cells. Which type of donation you would give depends on the patient and to some extent on the doctor. Bone marrow transplants require sticking a large needle into your pelvis to extract the marrow. This is done under anesthesia so it isn’t painful while it’s happening, but it can hurt afterward. It’s expected donors will be completely out the day of their donation but most people can return to normal activities the next day.
Peripheral blood stem cell donations are similar to a platelet donation, but they take even longer. The process involves taking blood out through one arm, running it through a centrifuge to separate the cells they need, and putting the rest of the blood back in through the other arm. I was hooked up to the machine that did this for 5 hours (compared to 2 for a typical platelet donation) and that wasn’t an especially long donation. More importantly, PBSC donations typically involve conditioning with Neupogen, a cytokine that makes the bone marrow proliferate and more stem cells to leave the bone marrow and circulate through the blood. This is an unpleasant experience. Having the bone marrow proliferate is draining- it takes a lot of energy for the cells to replicate- and can be painful if the marrow expands enough to push on the bone. Patients are offered fairly strong pain medication- I was offered Tylenol with codeine- so it’s fair to say the process is not pain free. I had relatively minor pain and was back at work the afternoon after donating.
That said, the whole process is totally worth it. My recipient is still going strong almost 13 years after the transplant, and we send each other anniversary presents every December 18th. I would say yes to donating again without a second thought.
zhena gogolia
@Baud:
Haha, I was thinking the same but you put it so succinctly. I think PsiFighter could be another addressee. That’s about it.
Goku (Amerikan Baka)
@Baud:
LOL! As it so happens, I think I’m already registered with the National Bone Marrow Registry. There was a nursing faculty a few years ago who had leukemia (I think?) and I was swabbed. I can’t remember if there was any follow up that I didn’t do
TinRoofRusted
My 21 year old daughter registered when she was 18 and got a possible match in early March. Then COVID and since we are in NY I assume her name went to the bottom of the list but am not sure. This gives me an excuse to call and bug her.
Calouste
@Roger Moore: Yep, my brother did it and they drilled a hole in his shin to extract the bone marrow. I don’t think it was that painful, but it was a bit sore afterwards, and he was told not to run or jog for one or two weeks to speed up the healing process. He did get a very nice (anonymized) letter from the recipient though.
Goku (Amerikan Baka)
@zhena gogolia:
M^4 is another one. I thought Baud was within the age range too?
Inspectrix
I was 44 until yesterday. (Expletive)
Baud
@Inspectrix:
Happy birthday!!!
Baud
@Goku (Amerikan Baka):
Maybe. Maybe not. I believe that the best way for me to bridge the Boomer/Millennial divide is to make everyone think I am one of them.
Van Buren
@MomSense: Cloris Leachman, is that you?
zhena gogolia
@Goku (Amerikan Baka):
I really appreciate you hanging out with us oldsters.
Yutsano
Not eligible, alas.
Villago Delenda Est
Alas, I’m too fucking old (born in the year of Sputnik) to donate. Hope a match for Claire is found very soon though.
Percysowner
@Villago Delenda Est: OOO! I remember when Sputnik was launched, so I’m way too old to donate. I wish I could.
debbie
Nice seeing the Airplane clip while it lasted. ?
Mudbrush
I was on the registry for over 20 years when I got called out of the blue to donate. Like others have said, the procedure itself is simple – mine was a stem cell donation via apheresis (your blood goes into a fancy centrifuge basically). And yes, the neupogen pre treatment was the worst part as my white blood cell count increased 5 fold over the course of a week.
The best part was getting put up at a fancy hotel, and receiving a nice letter from by (healthy) recipient a year after the donation!
Goku (Amerikan Baka)
@Baud:
Boomlenial!
@zhena gogolia:
This is a fun and informative place with interesting knowledgeable people. I’ve been around here since 2011 or 2012. I only lurked then, but I remember the Obot wars and Brinks Trucks
LuciaMia
Why the age cut-off? Figuring 44 and older would have more health conditions to make the process problematic for them?
mousebumples
I registered at college 10+ years ago, and I was contacted to “reswab” a year or so ago. Totally easy, and definitely a good cause to support.
zhena gogolia
@Goku (Amerikan Baka):
Brinks trucks, those were the days.
Roger Moore
@Mudbrush:
You got put up at a fancy hotel? I actually work for one of the busiest hospitals in terms of BMTs, so I just came to work. The fanciest thing that happened to me was that they had to send a nurse to my home on one weekend day for a neupogen shot.
An interesting side note is they said they could tell me that my recipient was not being treated at my work. For unrelated donors, they don’t want the patient and donor to meet until at least 1 year after the donation, and there’s a big risk of two people at the same hospital meeting, comparing notes, and figuring out that they’re the match. So if the donor would normally donate at the same hospital where the patient is being treated, they will come up with an excuse for sending them somewhere else to donate.
Emma
Thanks for this, I thought about mentioning the bone marrow registry in your other thread, but didn’t want to detract. My brother had childhood leukemia twice, the second time necessitating a bone marrow transplant. We were extremely lucky that I happened to be a perfect match for him, but graft vs host disease was still a nightmare for him. (Cancer-free since then, thank god.)
The actual extraction process is painless because of general anesthesia, but at least for me 20 years ago, I had to get a ton of those shots to boost my red blood cell count in the weeks before the transplant (can’t remember the name, but basically the stuff that competitive bicyclists used to cheat with.) Those hurt like *$&@, because they could only jab the underarms, stomach, or underthighs. At least the nurse gave me a toy after each shot, but they still sucked, and would suck x1000 more as an adult without the toys :/ I also remember getting my dressing off hurt, but I was probably too impatient and ripped it off.
Anyways, please consider registration. Childhood cancer treatment has come a long way in the last 2 decades, but bone marrow transplants are still the last line of defense that many people have to rely on. Very glad that Claire is doing well, but you’re right, the spectre of relapse is all too real, as my family saw with my brother. Btw, my brother says he’s happy to correspond with Claire, if she would like to talk to someone else who went through the same shit as a kid.
Roger Moore
@LuciaMia:
There are worries about whether marrow from older donors would cause long-term problems. That’s why people drop off the registry when they turn 61. Since it’s expensive to add someone to the registry- HLA typing their cheek swabs is not free- they want to concentrate on adding people who will stay in the registry for as long as possible. I think someone said you can register if you’re older than 44, but you have to pay for the typing yourself, and it’s about $100.
Roger Moore
One other interesting note for me personally: today is my employer’s 44th annual BMT reunion. We schedule a big party every year for BMT patients (and donors) to come back and celebrate one more year of survival. In more normal years, we have something like a thousand patients and their families back to visit. There’s a big picnic with a talent show put on by patients, doctors, and nurses. Since the Dodgers and Lakers both support our hospital, they’ll usually get someone from one or both teams to show up. Best of all, at least from my perspective, is they always have a couple of patients meet their donors for the first time. This year they had to do the whole thing virtually rather than in person, and I was too busy to attend, but it’s a big milestone for us every year.
J R in WV
Too old, will be 70 next b’day. Glad to be hanging in there… but still, too old.
satby
I’m too old too, so I’ll send the link to my sons.
frosty
@Goku (Amerikan Baka) @zhena gogolia: I appreciate it too. You’re roughly the age of my 20-something kids and I like to read your perspective. My kids don’t tell me LOL.
Thanks for hanging in there with us!
Mel
Seconding the thought that bone marrow extraction should be done with anesthesia. I had it done once with just a local, and that is NOT good times.
With anesthesia, it is nearly painless and reasonably stress-free. Just a few hours of post-anesthesia grogginess, and a little bit of soreness of a small area of the hip for a day or two is pretty much the norm.
The fact that you can quite possibly save a life by giving four hours of time and a vial of marrow makes that well worth it.
I can’t give blood or marrow now b/c of illness and medications, but wish I could. There are so many families out there waiting for that one match to give their loved one a fighting chance.