Beneath several blankets and a stuffed giraffe in her UC San Francisco hospital bed, 11-year-old Myla Cunanan is resting after a morning of dialysis to treat a kidney-related complication from her bone marrow transplant last year.
Myla is sedated and tired, but not enough to silence her spritely personality.
“Mom, you put the cover on backwards!” she exclaimed, disassembling her iPhone from its case and flipping it around as her mother, Leyna Cunanan, laughed and lovingly stroked the hand of her youngest daughter.
“She makes us all brave around her,” Leyna said of her daughter. “She knows that there is a purpose for her for being here.”
Tuesday marked one year to the day since Myla was diagnosed with myeloid sarcoma, a rare cancer in which a solid collection of leukemic cells occur outside of the bone marrow. The last year also thrust Myla into the spotlight as she and her family sought to find a bone marrow donor, a mission that turned out to be impossible due to a severe lack of Asian donors worldwide.
Myla is Filipino-American, and when doctors told her after three rounds of chemotherapy in spring 2014 that she urgently needed a bone marrow transplant, her family learned just how difficult it is to find a match.
In fact, Asians comprise just 6 percent of donors with Be The Match Registry, the largest and most diverse marrow registry in the world.
“The rarer your ethnic subtype is, at least in the U.S., the less likely we are to find you a good donor,” said Dr. Christopher Dvorack, who has treated Myla since last year and is an assistant professor of clinical pediatrics in the Division of Allergy, Immunology, and Blood and Marrow Transplant at UC San Francisco.
Last summer, her family registered about 300 donors through drives at their church, Myla’s school and local shopping centers, and shared Myla’s plight on social media with a photo of Myla holding a sign that reads, “Will you marrow me?”
But a match was not found, and by August, doctors told Myla’s family they would need to use a half-match donor, which was Myla’s father.
There are two main ways to donate bone marrow. The first is to have needles inserted into hip bones to extract a small amount of bone marrow. The second requires four days of injections of medicine designed to stimulate bone marrow and cause it to release stem cells from the bone marrow into the blood.
The problem with half-match donors is the patient’s immune system can reject the donated bone marrow, which is what happened to Myla, Dvorack explained.
“She initially did well, she then later developed a complication that has kept her in the hospital,” he said.
The complication, thrombotic microangiopathy with renal involvement, means Myla’s kidneys function less than 15 percent. She was subsequently diagnosed as chronic kidney disease Stage 5, and has been receiving hemodialysis several times a week.
But her family remain advocates for the need for more bone marrow donors, particularly among ethnic minorities.
“We didn’t find a match for Myla … but we would like to continue to [hold] drives for other patients,” her mother said.
Ruby Law, a recruitment director for the Asian American Donor Program based in Alameda, worked with Myla and her family last year to seek a donor and said their efforts have extended beyond simply finding a match.
“Myla’s family is very passionate about raising awareness of marrow and blood stem cell donation,” Law said.
Since Myla’s most recent hospitalization, which began a week before Thanksgiving, her mother has lived with her at UCSF. Myla was among the 126 patients transferred from the UCSF Parnassus Campus to the new complex at Mission Bay on Feb. 1.
Recently, Myla has been writing a book to help other kids going through similar journeys.
“When you read this book, I want you to think positive always,” the last line of the opening letter states.
And that pretty much sums up Myla’s attitude, according to her doctor and family. Despite having been hospitalized for the majority of the past year, Myla insists she has plenty to be thankful for. While hospitalized, Myla has held book, bracelet and band-aid drives.
“There are days, of course, when she doesn’t feel good,” her mother said. “But she always thinks about other people. She likes to give.”