What If…..the journey of Finding a Match

Im going to start this post with the same words I end it….(WHAT IF….it was Your child, Your spouse, Or Your parent????) What if….

Bone Marrow Transplant : “The procedure is much more like a transfusion than the surgery you might imagine when you hear the word transplant. Typically, the marrow is extracted from the donor’s hip with a needle. (Donor is under anesthesia, feels nothing) OR it is transfused like a blood donation, which is more common. It is then injected into the veins of the recipient, just like a blood transfusion. The bone marrow eventually travels back into the bones and starts functioning again.
The difficulty in finding a match arises from the body’s own immune defenses. Bone marrow tissue contains certain genetic characteristics called HLAs. The recipient’s bone marrow must closely match the donor’s. Otherwise the body might reject the donation, at least initially, causing a very dangerous disease called graft-versus-host-disease.” –American Cancer Society

So keep in mind that the following is Sheyna Math….I teach Preschool….enough said. Doesn’t change the point, though….

Patients most likely to exact match are a sibling….”most likely” meaning a 25% chance…meaning a 75% chance they won’t match. Jimmy was the only possibility because he had the same parents—and he fell into the 75%—Not a match.jim and cory

Charlie and I both tested as well, though the reason for our testing was to be as precise as possible in finding a match in the Bank. Easy peasy….12 swabs inside our cheeks. The likelihood of one of us being a match wasn’t really on the radar, because only 5 of our specific genes would be a match.

As elementary as possible (because that was the explanation I needed….I was SO confused—which to those of you who know me well doesn’t take much….)—We all have 10 HLA’s (5 from our Mom, 5 from our Dad), so the possibilities of a child from these two parents is pretty extraordinary. You could have any mixture from the 10 genes from your Mom and the 10 genes from your Dad (5 from each) to make up YOU and all of your crazy different siblings! Someone with math, statistics and probability smarts could figure out the amount of WAY unique children you could have from all this. It’s ALOT of varied possibilities.

Anyway, in June of 2013, since Jimmy was not a match, that was the question at hand. Had they found a match for Cory Jay Powell in the Bank? The BEST possibility of a smooth transplant was a 10/10 match. Someone in the world with the EXACT same 10 HLA’s that Cory has….where were they???  There are 7 BILLION people in the world….that number looks like this: 7,000,000,000,000 . There are only approximately 24 Million people registered in the bone marrow registry. Only 1…one…did you hear that?… ONE out of the 24 million registered was a perfect match for Cory. Out Of 24 MILLION! One. One. ONE!

Only .003% of the world’s population is a registered Bone Marrow Donor.

IF EVERY PERSON ON THE EARTH WAS REGISTERED AS A BONE MARROW DONOR, EVERY DYING BLOOD CANCER PATIENT WOULD HAVE A MATCH.

With a perfect match, the chances of survival are MUCH GREATER.

Cory Jay Powell had ONE in the registry.

She actually came up in the bank after a first partial match was found….

1. 9/10 match. A 46 year old man….went through the physical and wasn’t found healthy at the time, so he was a NO.

2. Two more weeks of contacting and physicals of the next partial match….8/10…a NO because of illness. (doctors are freaking…you can see it. Scans weekly now to be sure there are no new Leukemia blasts and Cory is still in remission…he is!!! whew!)

3.Then, SHE came up….a perfect match. 18 years old (she must’ve recently registered, because she was new in the bank.)…A PERFECT MATCH!  What????? 10/10.

10/10…. the Doctors smiles were huge and genuine, their voices high-pitched and fast…… they were ex-cited!!!

She went through the consult (the part where they explain all the details to her)

She went through the physical (she was healthy and a perfect candidate)

She disappeared.   (my mind hears crickets)

They couldn’t reach her any longer by phone, by her alternate contacts, by her email. Nothing.

NO-thing!

Doctors smiles…no more.

I imagined a 18 year old girl (my daughter really, who is 18 in a year)….scared, or dissuaded by well-meaning family members, or just doesn’t know that her Disappearing can cost someone their life…it’s just ignorance. It’s just ignorance. She doesn’t know.hannah bridge

I forgive her immediately, but am heartbroken. What now???

The doctors and caseworkers are worried. I can hear it and see it in their sudden scrambling and emails and phone calls and false smiles while they explain the situations with their shrugged shoulders. God bless them. God bless those Human Beings putting their necks and their hearts out every day to save US. They can only do so much, and they care SO much. You can see it…I had the thought so many times in Cincinnati Childrens Hospital that those Doctors and Nurses had the hopeful smile for us, but they would turn the corner where no one could see, and I knew they cried. They cried because they knew the statistics, they knew the reality of the chances. And they cared about My Son. Saints.

Then came Stan (I named him). 50 years old (50 year old men are named Stan, right?….not like I’m almost 50,lol :))….8/10 match. He was in. We were almost 4 weeks late, but still clean scans, so good. He was put on the Express Train for Cory Qualification and he passed! Consultation, physical, bone marrow extraction! Woo hoo! Celebrate! The man did it. He tried to save My son. Man, I wish I could give him a squeeze he would never forget. God Bless Stan, the Man.

8/10 is better than nothing…..SO MANY HAVE NOTHING—NO CHANCE, because ONLY .003% of the worlds population is registered. GOOD GOD, register!!!!! It’s a swab of your cheek and if you are a match, it’s a day or two down. Please Register. Please, please , please.

And if you are contacted Follow Through! You Have Been Contacted Because You are ONE, of very few and maybe the ONLY ONE,  Out of 24 Million That Can Save  A Person’s LIFE!!! Heeeeellllllooooooo…….

If I could still hug Stan, I would. They only allow contact with the donor after you’ve survived a year. This only makes emotional sense, but I wish I could hug him….I might freak him out thought, because I might not let go! From me it would be all good, all grateful, and all loving. Even if your family member doesn’t make it, you are so, so grateful that someone cared enough to TRY.  For real. I imagine he feels sad that Cory didn’t make it….I want to comfort him and help him know that Cory was grateful for the CHANCE…. I want him to see Cory’s letter to him… ”

“I wake up tomorrow with some anonymous badass’ bone marrow. It’s been hell for me to get to this place but that could have been the end of the story had it not been for the dedication of the hospital staff, love, support, and encouragement of all of you friends and family. And most of all, the great sacrifice of a man that’s never even met me, selflessly offering a piece of himself so that a total stranger has a better shot at life. Thank you to all of you who have stood behind me through thick and thin. But I owe my life to someone that has no reason to care about my well being. And that isn’t something I take lightly. This will be paid forward, in some way. Thank you, sir. You are a gentleman warrior.” -Cory Powell, July 30, 2013

Register, just register. And if you have the incredible Honor of donating and saving a life….Do It.

If She hadn’t pulled out and disappeared….frankly, Cory Jay Powell might be here, or at least his chances would have been greater, and I wouldn’t be writing my heart out in a blog for whomever to see.

Please…..www.deletebloodcancer.org  or www.bethematch.org

It’s so easy….a swab of your cheek….please. (WHAT IF….it was Your child, Your spouse, Or Your parent????) What if…

little cory AJ

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