My sister shares her experience as a donor
When my little sister, J'aime first complained of random bruising I really didn’t give it too much thought. When she got around to showing me the bruises, I was a little surprised. Large purple, black and yellow markings covered her chest, thighs and shoulders. “Maybe you’re beating yourself up in your sleep” I joked. When our mom speculated that J'aime might have Leukemia, J'aime and I had a good laugh. “Oh mom, could you be more of a worry wart??” Within weeks, it was clear that this was no laughing matter…
Aplastic Anemia? So that just means your iron is low, right? It’s an unfortunately misleading name for the general public. A better way to describe it might be blood or bone marrow cancer. J'aime’s body wasn’t producing it’s own blood cells or platelets, and the increasingly low cell count meant that her health was in an extremely fragile state. Any small cut or nosebleed could result in serious or even fatal consequences. J'aime needed blood and platelet transfusions once or twice a week and started spending more and more time in the ER and at the cancer center.
I felt completely helpless, totally frightened and anxious to find a way to help. The doctors explained she would need a “sledgehammer” of chemo in order to “obliterate” her stem cells, bone marrow and immune system entirely. Once this was complete, they would transfer healthy bone marrow from a donor, in the hopes that her body would accept the foreign marrow and begin to generate healthy blood cells and platelets. The major problem with this equation is that the ability to find a donor match relied entirely on probability. J'aime’s best chance of finding an eligible match was from one of her siblings, and thank goodness she had 3 gung ho siblings! We each had less than a 25% chance of being a strong match, and if not, she’d have to rely on the bone marrow donor registry.
I cannot describe how badly I wanted to be tested, and of course how much I hoped that one of us would be a match. A few years prior, I had seen a flyer posted at my favorite café saying that a local resident was desperately in need of a marrow transplant and that the donor registry was their only hope. I’d taken note of the website marrow.org and proceeded to pull it up on the computer. Something in the café had distracted me or maybe something on the website discouraged me and I thought, I’ll do it later. Now, here I was, wringing my hands, my mind racing, wondering why her doctors would waste another minute waiting for her insurance to okay the DNA test before testing us all. I had to know.
Miraculously, I was J'aime’s match. A perfect match! And with that fear out of the way, we were able to focus on the other daunting unknowns that lay ahead. What would chemo feel like? Would J'aime lose her hair? Would she become infertile from the treatment? What if her body rejected my marrow and developed Graft vs. Host Disease, a potentially fatal reaction to foreign cells?
The weeks that led up to the transplant date were unbearable. J'aime was constantly being poked and prodded by a million IV lines, the worst of which was a large tube inserted into her neck while she was awake and taped down, preventing her from moving her head at all. Watching J'aime experience nights of agony was heartbreaking. Knowing that the more time she spent lying in a hospital bed, the more likely she would begin to suffer from depression. All of our family’s hope lay in the possibility of a successful bone marrow transplant.
You might be curious to know what it feels like to have your bone marrow scraped and sucked out of your hipbone. Well, it sounds a whole lot scarier than what I actually experienced. The most painful part was having a tiny IV needle placed into the back of my hand where the anesthesia was injected. Honestly, that’s the only thing I remember about my portion of the procedure. When I woke up, my lower back felt a little sore for a week following, which I was provided pain medication for. But if you had seen the frightening obstacles that J'aime had no choice but to overcome, you would understand just how silly I feel complaining about a little backache. Besides, you get to eat all the popsicles and hospital grub you want! Oh, and did I mention that you are blessed with the opportunity to save a life?
Today we’re celebrating J'aime’s 1st birthday. That means, it’s her one year anniversary since a very successful bone marrow transplant. It is the final benchmark to knowing that the body embraced the foreign marrow. I’m still able to donate my marrow 2 more times in my life and I am really looking forward to getting a phone call from the marrow registry, telling me I can help a stranger who hasn’t been as lucky in finding a related match as J'aime, but just might find a match in me!
J'aime also received 49 blood transfusions that helped her to stay alive while she waited for the transplant day to come. She can never donate blood or marrow now but is so grateful to all the selfless people who donated their blood to her. Any chance you have to donate blood, please know that it really does go to save lives. I truly hope you will consider signing up with your national marrow registry as well. Don’t be like I was that day in the café and think, yea, yea, later. Do it now. It takes less than 15 minutes and I can’t imagine that you’ll regret it. Thanks for reading. Please share this site with your friends and spread the word about signing up as a bone marrow donor. Cheers to your health. Cheers to J'aime!
Aplastic Anemia? So that just means your iron is low, right? It’s an unfortunately misleading name for the general public. A better way to describe it might be blood or bone marrow cancer. J'aime’s body wasn’t producing it’s own blood cells or platelets, and the increasingly low cell count meant that her health was in an extremely fragile state. Any small cut or nosebleed could result in serious or even fatal consequences. J'aime needed blood and platelet transfusions once or twice a week and started spending more and more time in the ER and at the cancer center.
I felt completely helpless, totally frightened and anxious to find a way to help. The doctors explained she would need a “sledgehammer” of chemo in order to “obliterate” her stem cells, bone marrow and immune system entirely. Once this was complete, they would transfer healthy bone marrow from a donor, in the hopes that her body would accept the foreign marrow and begin to generate healthy blood cells and platelets. The major problem with this equation is that the ability to find a donor match relied entirely on probability. J'aime’s best chance of finding an eligible match was from one of her siblings, and thank goodness she had 3 gung ho siblings! We each had less than a 25% chance of being a strong match, and if not, she’d have to rely on the bone marrow donor registry.
I cannot describe how badly I wanted to be tested, and of course how much I hoped that one of us would be a match. A few years prior, I had seen a flyer posted at my favorite café saying that a local resident was desperately in need of a marrow transplant and that the donor registry was their only hope. I’d taken note of the website marrow.org and proceeded to pull it up on the computer. Something in the café had distracted me or maybe something on the website discouraged me and I thought, I’ll do it later. Now, here I was, wringing my hands, my mind racing, wondering why her doctors would waste another minute waiting for her insurance to okay the DNA test before testing us all. I had to know.
Miraculously, I was J'aime’s match. A perfect match! And with that fear out of the way, we were able to focus on the other daunting unknowns that lay ahead. What would chemo feel like? Would J'aime lose her hair? Would she become infertile from the treatment? What if her body rejected my marrow and developed Graft vs. Host Disease, a potentially fatal reaction to foreign cells?
The weeks that led up to the transplant date were unbearable. J'aime was constantly being poked and prodded by a million IV lines, the worst of which was a large tube inserted into her neck while she was awake and taped down, preventing her from moving her head at all. Watching J'aime experience nights of agony was heartbreaking. Knowing that the more time she spent lying in a hospital bed, the more likely she would begin to suffer from depression. All of our family’s hope lay in the possibility of a successful bone marrow transplant.
You might be curious to know what it feels like to have your bone marrow scraped and sucked out of your hipbone. Well, it sounds a whole lot scarier than what I actually experienced. The most painful part was having a tiny IV needle placed into the back of my hand where the anesthesia was injected. Honestly, that’s the only thing I remember about my portion of the procedure. When I woke up, my lower back felt a little sore for a week following, which I was provided pain medication for. But if you had seen the frightening obstacles that J'aime had no choice but to overcome, you would understand just how silly I feel complaining about a little backache. Besides, you get to eat all the popsicles and hospital grub you want! Oh, and did I mention that you are blessed with the opportunity to save a life?
Today we’re celebrating J'aime’s 1st birthday. That means, it’s her one year anniversary since a very successful bone marrow transplant. It is the final benchmark to knowing that the body embraced the foreign marrow. I’m still able to donate my marrow 2 more times in my life and I am really looking forward to getting a phone call from the marrow registry, telling me I can help a stranger who hasn’t been as lucky in finding a related match as J'aime, but just might find a match in me!
J'aime also received 49 blood transfusions that helped her to stay alive while she waited for the transplant day to come. She can never donate blood or marrow now but is so grateful to all the selfless people who donated their blood to her. Any chance you have to donate blood, please know that it really does go to save lives. I truly hope you will consider signing up with your national marrow registry as well. Don’t be like I was that day in the café and think, yea, yea, later. Do it now. It takes less than 15 minutes and I can’t imagine that you’ll regret it. Thanks for reading. Please share this site with your friends and spread the word about signing up as a bone marrow donor. Cheers to your health. Cheers to J'aime!
