Ailani Myers wasn't even three years old when she was diagnosed with acute lymphoblastic leukemia (ALL), an aggressive cancer of the blood. Although her battle is far from over, she and her family are focusing on something else too: saving other children.
Giggett Johnson is the sister of Ailani's mom, Princecine Johnson, a 23-year veteran of the Navy.
"Ailani was born without complications and was healthy up until her second year, when they came to visit the family in Texas. We noticed she was acting different. She had a rash and an odd spot on her head so we rushed her to the hospital," Johnson said.
It wasn't long after that first hospital visit that Ailani received her diagnosis of ALL. The family quickly dove into treating her cancer and tried desperately to find a blood stem cell donor. But there wasn't one on the registry. One barrier to finding a match that Ailani and many children like her face is being of mixed race. Her mother is black and her father white, which greatly reduced her chances of finding a transplant match.
Without a readily-available match, the family made the decision to bring Ailani to Johns Hopkins. It is one of the world's leading experts in treating pediatric cancer and specifically doing haploidentical bone marrow transplants — a half-match transplant usually from a mother or father.In part because of her ethnicity, it was her greatest chance at a cure.
Ailani with her dad.
Ailani's father, Kurt Myers, is an active-duty chief warrant officer in the Navy. The Navy gave the family orders to Fort Meade, Maryland, to allow the family to be close to the hospital. Ailani received a haploidentical transplant from her father in 2019 which was successful. But three days before her one-year transplant anniversary, a scheduled bone marrow biopsy indicated her leukemia had relapsed. Despite the devastating setback, she and her family remain committed to a cure.
Beth Carrion is the family's Be The Match representative and she is imploring the public to register to be a possible donor, especially those with diverse ethnic backgrounds.
"We have to end the healthcare disparity and bridge that gap. We need help to do that," Carrion said.
According to the Be The Match website, for over 30 years it has managed the largest and most-diverse marrow registry in the world. In the years since its founding, the nonprofit has helped lead the way for innovative advancements in transplants — and in the process, saved countless lives. But they need more people to register to donate, as there are thousands of children waiting.
Learn more about joining the bone marrow registry
Only 20% of patients will actually require a marrow transplant, with most of them being children under 10 years old. The rest desperately need parts of your blood for treatment. Unfortunately, medical television shows have dramatized the process and led potential donors away in fear. The donation is not as painful as it is portrayed in television and you are asleep while they do the procedure.
"I think when people hear the word 'registry' they think organ donation and that isn't what it is. This is just a blood product and your body will replenish it," Carrion explained.
The giving of blood and blood products is lifesaving. Ailani recently underwent a new treatment called CAR-T cell therapy where her own T-cells were filtered from her blood and re-engineered in a laboratory to target her leukemia. She then had to receive extensive chemotherapy to prepare her body to receive those re-engineered T-cells. Through it all, Ailani has remained positive – even as she continued to lose her hair yet again, something that broke her heart the first time she went through it.
If this treatment is unsuccessful, they will be going with another half-match transplant with her mother.
Although all seemed poised to be heading in the right direction, the family had another setback.
"She fell and scraped her knee and because she was immunocompromised from chemotherapy, she ended up with a fungal infection in the scrape. The fungus disseminated throughout her whole body resulting in several major complications. They had to give her white blood cell transfusions, extensive antifungals, and do surgery to clear the infection," Carrion shared.
According to Ailani's aunt, she was terrified when she got up from falling.
"When she fell, she said 'Uh oh, uh oh. I fell I fell.' She knew that something devastating could come out of a fall," she said.
But even with the additional challenges Ailani is facing on top of battling her cancer, she hasn't lost her happy disposition and sweet personality.
"Sometimes when my sister calls me to tell me how Ailani is, I'm at a loss for words. I don't know what to say other than we're praying and trying to be strong for her," Johnson said through tears.
Her family describes Ailani as a fighter, a beacon of light and good. It is their hope that by sharing their story more people will raise their hands and register for Be The Match. Registration is simple, easy and painless. For the potential children matched with prospective donors it's a scientific miracle. It will also save their lives.
To learn more about how you can register for Be The Match and get your cheek swab, please click here or text "saveailani" to 61474.
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