Cuban American searches for bone marrow donor
It took the doctors five weeks to figure out what was wrong.
The day after Halloween, Manny Valdes felt pain in his legs that wouldn’t go away. A series of tests showed the presence of a widespread cancer, lighting up his body like a Christmas tree, he said. Oncologist Dr. James Foran from the Mayo Clinic in Jacksonville couldn’t believe he was able to function.
“He said, ‘I can’t believe I’m talking to you because you shouldn’t be alive right now. And you probably won’t live through the next four months unless we get this out of you now,’” the Miami Palmetto High School graduate recalled.
Valdes was diagnosed with acute myeloid leukemia (AML), a rare, aggressive blood and bone marrow cancer. There are 20 different versions of AML, and the M6 version that the 42-year-old husband and father of two has is one of the hardest to fight.
He calls his chemotherapy sessions “tours.” The first caused him to lose 40 pounds, but one week later, the leukemia was roaring back. His only chance at life, he said, is to find a suitable match for a bone marrow transplant.
Because tissue type is inherited the same way eye or hair color is, ethnicity is crucial, and his Hispanic heritage has left the Cuban American still searching for the match that can save his life. According to Gift of Life, a nonprofit, Boca Raton-based bone marrow and blood stem cell registry, 55 percent of Hispanic cancer patients and 75 percent of multiracial patients are never matched, some dying while waiting to get a transplant.
“The data base doesn’t have enough people in it, so we need to educate Cuban Americans in Florida so more people can get registered,” he said. “It’s not just me, there are other people who need it to save their lives.”
One of them is 1-year-old Emilie Meza in Tampa, who also has been unable to find a match because of her Hispanic heritage. Unless they both can find a match, their chances at survival are limited.
Gift of Life launched a nationwide campaign, Regalo de Vida (the Spanish translation of the organization’s name), to increase Hispanic representation in the bone marrow donor pool and help those like Valdes and Emilie.
“It’s not on your radar until someone you know and loves needs it, and that’s true of myself,” Gift of Life CEO Jay Feinberg said.
He waited four years for his own transplant. To address people’s misconceptions about donating, he said he wished television shows would represent the procedure properly so people weren’t afraid. The giving process involves taking bone marrow from the iliac crest of the hipbone while the donor is under anesthesia, or collecting peripheral blood stem cells in a process similar to donating blood platelets. Only 15 percent of transplants require bone marrow, usually for children, while the rest is blood stem cells.
“The general population thinks the transplantation process involves something horribly painful because of what’s on television,” Feinberg said. “In reality there’s no cutting, no stitching, no drilling — it’s an outpatient procedure.”
All it takes to screen a willing donor is a free cheek swab. A person will stay in the registry until they are 61 years old and if found to be a match for a patient, he or she will receive a call from Gift of Life.
When Valdes stands up, he groans. The pain in his hips makes getting out of bed and into the car hard work, but he continues to go to work and drive over 100 miles to see his children. Throughout this process, Valdes said he has made sure his children know everything.
“When I got diagnosed, I was trying to hide the pain from them for a while, but it became too much for me to hide it anymore,” he said.
His 11-year-old daughter, Natalie, is taking it the worst, he said, because he isn’t able to spend as much time with his kids anymore, and he can’t see them at all while he is in the hospital. His 10-year-old, Alex, is his spitting image, but Natalie’s personality is so much like her father’s it’s freaky.
A University of Miami football fan, he loves to take his kids with him and spend the day watching the game and eating. While in the hospital, he spent one weekend building a Lego helicopter with a working motor, all in green, white and orange.
His wife, he said, is a rock. When he is in the hospital, Kelly Valdes spends all day with him before going to a hotel. She also “cracks the whip” and encourages him to exercise and keep up his strength. For now, doctors don’t know how long he will make it without finding a donor. Valdes said his case is unusual because of how strong he is.
“I’ve been able to deal with a lot of pain,” he said. “I feel like I can extend my life based on my strength and positivity.”
How to help
Anyone interested in becoming a donor can go to www.giftoflife.org.