A message on the back of her Team Fia hoodie tells you a lot about Sofia Irlando: “Cancer picked the wrong princess.”
The words stem from a journey that began in August 2019, near the start of Sofia’s freshman year at the Paideia School.
After experiencing intense stomach pains and fainting episodes, Sofia was diagnosed with acute myeloid leukemia, a high-risk cancer of the blood and bone marrow.
“It was frightening and came as a shock when I first found out about my diagnosis,” the Midtown resident said. “I really just tried to keep a positive attitude and do what I had to do right away to beat this.”
Her care team at the Aflac Cancer and Blood Disorders Center at Children’s Healthcare of Atlanta determined that Sofia’s best chance of survival was a blood and marrow transplant, also known as a bone marrow transplant.
After no one in her family tested as a perfect match for Sofia, her care team searched the National Marrow Donor Program registry and she was matched with an anonymous, unrelated stem cell donor for a Jan. 8, 2020 transplant.
The process involved in getting donors medically cleared and at the hospital for donation typically takes about six weeks, said Dr. Benjamin K. Watkins, pediatric hematologist and oncologist at Children’s.
A week before the scheduled transplant, Sofia began a round of high-dose chemotherapy to kill any cancer cells; clear her bone marrow of cells to make room for the donor’s blood-producing marrow cells; and to suppress her immune system so her body could accept the transplant.
“We basically wanted to eliminate her immune system and then restart from the beginning with someone else’s,” Dr. Watkins said.
After many preparations, everything was a go until just one day before the transplant was to take place, when something completely unprecedented happened.
Dr. Watkins was informed by the donor center that Sofia’s donor was temporarily ineligible to undergo anesthesia.
It was the first time the Blood and Marrow Transplant team had experienced the loss of a donor after the chemotherapy regimen had begun.
A race for a new donor was on.
‘It’s like Bella’s alive in her body’
Sofia had been perfectly matched with a couple of other backup donors and one could have been available to donate within about a week, “but we didn’t feel like she had a week,” Dr. Watkins said.
After much deliberation, the care team and Sofia’s family settled on Sofia’s older sister Bella as her donor. Bella had identified as a half match for Sofia, a situation that presents higher risk of serious side effects than a perfect match.
Within 48 hours, Bella underwent additional testing and her life-saving transplant cells were harvested. The care team adjusted Sofia’s treatment plan to give her additional protection from side effects and Sofia received her sister’s gift of life.
“One of the reasons a transplant works is not only the intense chemotherapy but the donor cells live in her body for the rest of her life and they will recognize any residual leukemia as foreign and attack it and kill it. It’s like having a living drug inside of her,” Dr. Watson said. “It is like Bella’s alive in her body, and they’re fighting this cancer together.”
Sofia said it was “really amazing” to have Bella as her donor.
“Bella was there for me without any hesitation in this really life-changing moment and had my back,” Sofia said. “People always say you share blood with your family. Bella and I really share blood now.”
Bella, now a freshman at Davidson College in Davidson, N.C., said she just wanted to do everything she could to help her sister.
“Sofia and I have always been close, but this experience has brought us even closer together as siblings,” she said.
Their parents, Andres and Olivia Irlando, say Bella is their hero.
“Her selflessness and devotion to Sofia inspires and makes us so proud,” Andres said. “Bella and Sofia’s story is the ultimate love story.”
The road ahead
Sofia remained hospitalized after her transplant for more than 60 days for observation and care as Bella’s blood began to make new blood cells for Sofia.
She experienced side effects and complications, but her family and her care team remember her determination to fight through them. She walked a marathon during her admission — 738 laps around the hospital’s Blood and Marrow Transplant unit.
Dr. Watkins said Sofia and her family have been “absolutely amazing” throughout Sofia’s journey. Sofia, in turn, thanks her family, friends and her medical team for their support and care.
“My nurses would even come in on their days off to spend time with me and to watch ‘The Bachelor’ together. They were my friends in some of the hardest moments and motivated me,” Sofia said.
Now, at age 16, Sofia is celebrating hitting the one-year milestone since getting her transplant and has no detectable leukemia. She has been removed from transplant-related medication.
Sofia and Bella are using their experience as a way to educate their peers about bone marrow transplants and ways to protect immunocompromised and vulnerable populations, especially during the fight against COVID-19. They’ve organized blood drives and have encouraged people to register as donors.
Meanwhile, Sofia says she is “feeling and doing great.”
“The recovery from a bone marrow transplant is a long one. I’ve had to rebuild my immune system from scratch since all the vaccines I got as a baby are gone,” Sofia said. “It will take about two years for me to be fully revaccinated, but I’ve started getting my vaccines and am off to a great start.”
Help Save A Life
When patients don’t have a matched sibling for a blood and marrow transplant doctors search the National Marrow Donor Program registry for other possible donors.
The NMDP has been focused on outreach in Atlanta, according to Dr. Benjamin K. Watkins, a pediatric hematologist and oncologist at Children’s Healthcare of Atlanta.
“Unfortunately, there are significant disparities in finding a matched donor in the registry based on a patient’s racial or ethnic group,” he said.
White Europeans have about a 75 percent chance of having a perfectly matched unrelated donor while other groups including African American, African, Black Caribbean, and Black South and Central American have less than a 20 percent chance of having a matched donor, Dr. Watkins said.
“We have been pushing to find ways to address the disparities given that Atlanta has such a large Black population,” he said. “One of the ways we can do this is by signing up more people on the registry.”
Learn about bone marrow donation at NMDP.org.
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