Join a bone marrow registry and save a life — like my son’s
The hardest part of my son Desmond’s aplastic anemia diagnosis was knowing that my child was seriously ill and there was nothing I could do about it. As a parent, this makes you feel helpless, and that is heart-wrenching.
Since I couldn’t physically help Desmond, I did the next best thing: I prayed and did as much research as I could. I wanted to be as knowledgeable as possible about his disease and its treatment, so I could have intelligent conversations with his doctors.
My son’s aplastic anemia diagnosis
There was some small consolation in knowing that aplastic anemia isn’t technically cancer — but not very much. It’s still classified as a cancer-type of disease, so I knew it was serious. The first clue as to just how serious came when we found out Desmond was ill in 2013.
My son had gone to the doctor for some bloodwork before he went back to school in Lubbock. He’d been having stomach pains and shortness of breath for months. Then, on a hike with me and his father in Hawaii, he got winded really quickly. This was surprising, since we weren’t winded at all. He was half our age and a serious athlete, so we knew something was wrong. When Desmond almost passed out in the back yard after we returned home, I insisted he get checked out.
Initially, the doctor thought Desmond might have asthma. But the next day, he called us and said Desmond needed to go straight to the ER. His blood counts were so low that he could have a brain bleed at any moment and die. I immediately took him to the hospital. He stayed there for about a week and was diagnosed with aplastic anemia.
Aplastic anemia research led us to MD Anderson
While Desmond was in the hospital, I started doing my research. I learned that a stem cell transplant would likely be a part of his treatment. At the time, he was only 21 — right on the cusp of the age threshold at which that therapy would be considered.
I also learned that MD Anderson has an entire department dedicated to stem cell transplants. It offers cutting-edge treatments and clinical trials. It was the right place for him to go. We were so happy and thankful to get him an appointment there.
Surprising things I learned about the stem cell transplant process
Once we were at MD Anderson, I was surprised to learn how the whole stem cell transplant process worked. It was certainly not the way it’s portrayed on TV, where a parent can magically be their child’s donor.
Children only get half of their DNA from each parent. So, it’s unlikely that a parent will be a perfect match. Even the chance of a full-blooded sibling being a perfect match is relatively low. So, we’d likely need to get Desmond’s stem cells from an unrelated donor.
That’s when I discovered how much harder it is for people of color to find matches in the bone marrow registry. This was very concerning to me. I worried that Desmond would be unable to find a match. But we were really fortunate, because my daughter Tiffany turned out to be a perfect match for her brother.
The gift my daughter will never let her brother forget
Tiffany was a senior in high school when Desmond was diagnosed. She was only 17 at the time, so the prospect of being a stem cell donor was kind of scary to her. She’d never had any kind of medical procedure. And this would require her to undergo general anesthesia, so that stem cells could be extracted from her hip bone with a needle, during a procedure called a bone marrow aspiration.
Still, Tiffany couldn’t wait to help her brother, once she found out she was a match. And today, she says she would do it all over again in a heartbeat. Because the only side effects she had were some mild hip pain for a day or two, and low hemoglobin levels for about a month. Now, Tiffany can honestly say that she saved her brother’s life. She never lets him forget it!
Why I urge other people of color to join a bone marrow registry
I want everyone to have a chance for success with this process. Because no one wants their child to be sick with a life-threatening illness. Knowing there are treatments available makes it a little easier to accept. But in our case, we were truly blessed, because my daughter turned out to be a perfect match for her brother.
Unfortunately, that’s not always the case. And people shouldn’t have to worry about something like that when they or someone they love is sick. That’s why I encourage everyone — especially other people of color — to go get their cheeks swabbed, so they can join the national bone marrow registry.
As my daughter will attest, the discomfort you’ll feel from donating bone marrow is very minor and short-lived. And the gift you give may save someone else’s life. It saved my son’s.