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It’s been 2 years today since I got the phone call from Be The Match about finding a donor for Smalls. For those of you who are new around here, my son Smalls has something called Severe Aplastic Anemia. The only cure for his disease is a bone marrow transplant.
Aplastic anemia is a condition that occurs when your body stops producing enough new blood cells. Aplastic anemia leaves you feeling fatigued and with a higher risk of infections and uncontrolled bleeding.
A rare and serious condition, aplastic anemia can develop at any age. Aplastic anemia may occur suddenly, or it can occur slowly and get worse over a long period of time. Treatment for aplastic anemia may include medications, blood transfusions or a stem cell transplant, also known as a bone marrow transplant.” source
And 2 years ago, I was on the phone with a really nice lady from Be The Match because we didn’t think that his treatment was working (the treatment did work and he’s now in remission). She pulled up his information and was looking to see if there was anyone, anywhere in the world, who could save my son’s life. He was 4.5. I was on the other end of the phone in terrified silence.
We have a friend whose daughter also suffered from Aplastic Anemia. They looked for a match and actually found someone who was an 80% match and could have saved her life…but he never responded. Instead, she had her first communion and passed away shortly after. Smalls still asks about her.
I can’t help thinking that if there were more people in the bone marrow registry…she might still be here. And she and Smalls would be chasing each other at the park.
Instead, my 7-year-old is very, very aware of what death means.
Before we went through it, I would have thought about how sad this was, and how tragic…but it will never happen to me. Not my baby, not our family. Y’all. It happens to people just like you. It happens to your friends, your neighbors, your family. And if you’ve never had a child who was so sick that they literally needed to have their bone marrow replaced, let me share what that’s like.
You’re sitting alone in a hospital waiting room with your brand new baby, looking at your child’s lab report. His numbers tanked. AGAIN. You’re not sure how many more blood infusions he can have because after 20 there are risks.
Heck, there are risks right now because they just took him back to do another bone marrow biopsy, and you had to sign a release that said something about side effects of the anesthesia or procedure including death.
You’ve signed the same release at least twice before. You do it every time they do surgery on him, which at this point feels like it’s a weekly occurrence.
As you look at the labs, praying that they’ve improved, you realize that you can’t remember which abbreviation is the one that is really scary-the one for the white blood cells that he so desperately needs and can’t get through a transplant. The ones that his body is refusing to make.
You pray that the treatment works, but you know that there’s a chance it won’t. You hope and pray that other people will be selfless and donate the one thing that can save your baby. And you know that there is absolutely nothing that you can do about it.
A marrow transplant can be a life-saving treatment for more than 70 diseases including leukemia, lymphoma and sickle cell. Seventy percent of patients don’t have a fully matched donor in their family. They depend on Be The Match.
If you aren’t already registered as a bone marrow donor, you need to be. It’s super easy, and donating is a lot less painful than you might think. Most people donate through a Peripheral Blood Stem Cell (PBSC) donation where a machine draws blood from one arm, extracts the cells it needs and returns the remaining blood back into your body through your other arm. Donors are fully awake for this procedure and can chat with family and friends or binge on Netflix.
For some people, the doctor will need to extract marrow directly from the back of your pelvic bone with a needle. In this case, you’ll receive anesthesia and feel no pain during the procedure. Most donors feel completely recovered within a few weeks. A small price to pay for the chance to save a life, you might even save Kami.
11-year-old Kamryn is an example of a patient who has no donors available on the marrow registry. She has sickle cell anemia and is currently searching for her match. Learn more about Kamryn’s story and sign up to join the registry at join4kami.org.
All it takes to join the marrow registry is a simple cheek swab. Visit join4kami.org to learn more.
Like our friend, Kamryn had five matches on the registry that were either unwilling or medically unable to donate.
Y’all. Children need registry members who are committed to donate if needed. But too often members who are called as a match turn out to be “not interested.” This can be heartbreaking for patients and their families, especially when you have a condition like Smalls and his friend where the only cure is a bone marrow transplant.
If her 80% match had said yes, she might still be there. We might be playing at the park or getting ready to spend the weekend at the beach. Instead, she’s an angel now.
Have you registered with Be The Match?
I was selected for this opportunity as a member of CLEVER and the content and opinions expressed here are all my own.