Research shows that having a sibling is good for your health. For 4-year-old Alayna Numbers her little brother proved to be a lifesaver literally. On September 24, Alayna received a bone marrow transplant to treat aplastic anemia (a rare condition where the body stops producing new blood cells) with marrow harvested from her 18-month-old brother, Mikey.
In July 2019 Alayna’s parents, Ashley and Chris, noticed she had developed a rash followed later by strange bruising.
“I took Alayna to have the rash looked at but the provider who saw her (her regular physician was out of town) didn’t seem to be terribly concerned,” Ashley said. “So, when the bruising started, I thought it probably wasn’t anything serious.”
Ashley waited until her primary care doctor returned and took Alayna back to have the bruising evaluated.
“This time they decided to do some blood work,” she said. “When the doctor called and said Alayna’s platelets were at 7000 (normal range is 250,000-400,000) they recommended we get to Akron Children’s right away for further testing.”
A bone marrow biopsy revealed Alayna had aplastic anemia but what caused it remained a mystery.
“I tormented myself wondering if she had been around chemicals or if a medicine I gave her could have caused it,” said Ashley.
It turns out Alayna’s form of aplastic anemia was idiopathic – which means there is no known cause.
According to Courtney Culbertson, pediatric nurse practitioner and stem cell transplant program coordinator, “Genetic testing is done initially to ensure there is no genetic cause, but in up to 70% of patients who develop severe aplastic anemia there is no identifiable cause. Aplastic anemia is characterized by pancytopenia (low white blood cells, low red blood cells and low platelets) and hypocellular marrow (containing less than the normal number of cells).”
With the severity of Alayna’s case, a bone marrow transplant was her best option. But before the transplant could occur, Alayna needed a marrow donor whose tissue type matched her own. Prepared to search for a viable donor through the national bone marrow registry, Ashley says something in her gut told her 18-month-old Mikey would be a match.
“It was just an intuitive feeling I had,” she said.
“When we talk about matching for a bone marrow transplant, we look at HLA (human leukocyte antigen) typing,” explained Courtney. “Your HLA type is made up of five genes. Each one of these has two different versions (called alleles) making 10 in total so 10/10 is a perfect match.
“When a patient is a candidate for a bone marrow transplant, we type any full siblings,” she added. “Each sibling has a 25% chance of matching (because you get half of your HLA typing from mom and half from dad). Mikey ended up be a 10/10 perfect match. Akron Children’s sees about two full sibling donor sets per year, making Alayna and Mikey a rarity.”
After receiving chemotherapy and immunosuppression therapy to wipe out her own immune system, Alayna received a transplant performed by Dr. Steven Kuerbitz, director of stem cell transplantation, on September 24.
“The day before we did Alayna’s transplant, we collected bone marrow from Mikey,” said Courtney. “While he was under general anesthesia two members of the transplant team worked simultaneously to extract bone marrow from both of his hips. He was then admitted overnight for observation.”
For the next month Alayna remained in isolation and wasn’t allowed to leave her room.
“She’s so smart – we prepared her the best we could, and she handled it better than any of us,” said Ashley. “When you have a child in isolation it basically means you’re in isolation too. We passed the time with art therapy and games and she received physical and occupational therapy in her room.”
Although Alayna’s immune system is still very fragile, she is recovering well.
“She isn’t allowed in a daycare or school setting for at least a year to prevent exposure to infection. She also takes a number of medications to prevent rejection,” Ashley said. “If I have to take her out, she wears a mask.”
Courtney says the long-term, disease-free survival rates for Alayna approach 90 percent. In addition to currently following up with her medical team twice a month, she will be seen yearly until age 25 in the hospital’s multidisciplinary Survivorship Clinic to monitor for late effects that can happen secondary to chemotherapy.
Although it’s a club no parent wants to be in, Ashley and Chris remain grateful for the care their daughter received. When Alayna was finally discharged from the Ronald McDonald House (where she lived for 3 months post surgery) in late December, she couldn’t wait to get home to see her dogs and cat.
“We videotaped her coming home and she laid on the living room floor and said, ‘isn’t it good to just be home,’ and I couldn’t have agreed more,” said Ashley.