'It made me more grateful'

An extraordinary girl contends with a rare, life-threatening blood disease — and undergoes a made-to-order clinical study in cord-blood transplantation
Kyra Diaz
"I was in and out of the hospital a lot and I hated it. It was a tough experience, but it made me more grateful," said 11-year-old cord-blood transplant patient Kyra Diaz. Photo by Craig Terrones for Seattle Cancer Care Alliance

Kyra Diaz is just 11 years old, but she has stared down challenges few adults have faced.

Since being diagnosed with aplastic anemia in 2009, Kyra has stood tall through a series of demanding medical treatments to arrest and, finally, cure her disease. Ultimately, in October 2013, she received a transplant of stem cells derived from umbilical cord blood developed by researchers at Fred Hutchinson Cancer Research Center that saved her life.

Her experience has included missing a year and a half of school and friendships, frequent absences from home, and a steady dose of discomfort and isolation due to the rigors of her therapies.

Looking back, Kyra said, there’s a lot that she doesn’t remember. “I was in and out of the hospital a lot and I hated it. It was a tough experience, but it made me more grateful. It gave me more experience with things that are hard, and that made me more tough and strong.” 

Living through a series of treatments

Kyra’s treatment journey began when she was 8. Bruises on her legs led her parents, Ailiene and Mike, to seek medical care for her. After a series of tests, her condition was recognized as aplastic anemia, a rare blood disorder characterized by the failure of the bone marrow to make enough new blood cells.

Bone marrow produces the stem cells that manufacture blood cells. In aplastic anemia, these stem cells are destroyed. It’s generally considered an autoimmune disease; stem cell destruction occurs as a result of the body’s own immune system attacking the marrow.

A range of treatments is available to children with this disease, depending on the severity of their symptoms. Therapies include blood transfusions, immunosuppressive drugs, growth factors to help the body make more blood cells — and bone marrow transplantation.

Kyra Diaz' family
Kyra Diaz (in red) is flanked by her parents, Mike and Ailiene Diaz, and her sister Denise (far left). Photo by Craig Terrones for Seattle Cancer Care Alliance

Initially, Kyra received her treatment at Seattle Children’s Hospital. At that time, the Diaz family was living in Marysville, Washington, about 45 minutes north of Seattle. She received transfusions of red blood cells every four to six weeks and infusions of platelets about every two weeks.

Early into her treatment, Kyra was given a course of the immunosuppressant ATG. “It basically reset her bone marrow,” Ailiene said. “She responded fairly well. Two or three months after that, her cell counts started to go back up.” This enabled Kyra to stop getting blood transfusions for a time.

But that progress didn’t last. By January 2013, Kyra was back to very low blood counts. That April, Kyra’s doctors started with ATG again, combining it with the growth factor cyclosporine to encourage a second reboot of her blood cell production. During this period, the Diaz family returned frequently to Seattle Children’s as Kyra was experiencing a number of complications from her low blood count.

“The treatment was not working,” Ailiene said. A bone marrow transplant was Kyra’s best option to stay alive.

Kyra’s cord-blood transplant: A clinical trial of one

Ethnic minorities like Kyra (both her parents are Filipino) typically face a huge challenge in finding a bone marrow donor. There’s not a large pool to draw from in the national donor registry to find a potential match. And unfortunately, the most promising candidate, Kyra’s younger sister Denise, was not a match either.

Fortunately for the Diaz family, the answer to their prayers was right here in Seattle — but it involved getting a sign-off from the Food and Drug Administration.

Fred Hutch researcher Dr. Colleen Delaney has devoted her career to pioneering more effective cord-blood transplantation techniques for patients who don’t have a matching donor. She continues to innovate processes that expand the number of these cells available for engraftment.

The initial stumbling block for the Diaz family was that Delaney’s breakthrough clinical studies were not open to Kyra’s condition, Ailiene said. In fact, they were planning a move to Maryland to enable Kyra to participate in a cord-blood transplant trial sponsored by the National Institutes of Health.

“Having to move to Maryland for the NIH trial made no sense,” Delaney said. “From a previous clinical trial here at the Hutch, we had established a successful double cord-blood transplant process. I knew we could perform this with Kyra. This included taking a cord-blood unit that was partially matched to her, growing those cells and giving them to her.”

Cord-blood stem cells, she explained, are derived from donated blood collected from the umbilical cord just after the baby is born; because these cells come from an infant with a naïve immune system, they do not require as close a match to the patient/recipient. In fact, nearly all patients who can not identify a suitable donor will be able to find a cord-blood donor.

Prior to Delaney’s innovations, the challenge of using these stem cells for transplants was that relatively few can be extracted from each umbilical cord —  delaying patients’ recoveries and leaving them more vulnerable to complications.

To receive the go-ahead for Kyra’s treatment, Delaney submitted a single-patient Investigational New Drug (IND) application to the FDA, which allowed her to stay in Seattle for treatment.

While Kyra had some complications, she engrafted on day eight and today is off all immunosuppression medications – something Delaney says is “an excellent result.”

Ailiene said she’s grateful for Kyra’s doctor. “Dr. Delaney makes miracles happen.”

Strength, passion — and staying positive

Kyra’s biggest setback occurred in January 2014, when a side effect of her transplant emerged. She was diagnosed with lymphoma, a cancer of the lymph nodes. Secondary cancers are a relatively rare complication of allogeneic (donated stem cell) transplants. “That really got to me,” Kyra said simply. “I cried.”

Kyra and her family soldiered on. The lymphoma diagnosis meant that she had to undergo another course of chemotherapy, which was concluded in May. This also meant that she wouldn’t be able to go back to school until September 2014. “But after this treatment she began to respond fairly well to the medications,” Ailiene said. “And from a lymphoma standpoint, she’s clear — she’s in remission.”

Today, Kyra’s radiant face and quiet joyousness show no trace of what she has lived through while fighting for her life, and she still is vulnerable to infections.

She clearly takes joy in art. A gifted and perceptive writer, she’s been transforming her experiences into stories that view her life from the third person and explore the emotional upheavals she lived through during the past four years. “Fiction stories are my strength and my passion,” she said.

She’s also returned to sixth grade and was named Student of the Month this past fall.  “She’s amazing,” says Delaney.

Kyra also loves to draw and read, play the piano and sing. She recently won a regional art contest for her painting. The Diaz family moved to a new home in Lake Stevens, Washington in August. They’re grateful to be once again living together under one roof.

What advice would Kyra give to other patients facing a prolonged, life-threatening illness?

“I’d say — stay positive,” she said. “Because if you’re not believing you’ll get better, you’re putting yourself down even while everyone around you cares about you. And that doesn’t help anything. Stay positive and be happy.”

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