Matching “bone marrow besties for life” t-shirts symbolize Harper and Kortnie’s extra special connection. In 2019, Kortnie saved Harper’s life.
After being diagnosed with a rare type of blood cancer at the Hyundai Cancer Institute at CHOC, three-year-old Harper was in desperate need of a bone marrow transplant. Harper’s providers found Kortnie through the National Marrow Donor Program/Be The Match® volunteer registry.
Because of the expert, compassionate care from CHOC and generous gift, Harper is now an energetic, thriving six-year-old. She’s also gained an extended family member through Kortnie — joined together by the generous gift of healthy blood cells.
Myelodysplastic syndromes (MDS) rare in children
In April 2019, three-year-old Harper just didn’t seem like herself. Her parents, Stephanie and Travis, noticed that she was more pale than usual, lethargic and had been experiencing frequent ear infections — they thought that maybe she had caught the virus that was moving through her preschool class.
With it being after typical business hours for their pediatrician’s office or urgent care, Stephanie and Harper headed to CHOC at Mission Hospital.
At CHOC Mission, the CHOC team did some bloodwork and discovered that Harper had low counts of white blood cells, red blood cells and platelets. They quickly transferred her to CHOC Hospital in Orange, where she was admitted to the Josie Y.S. Lee Pediatric Intensive Care Unit (PICU). There, the providers were able to stabilize Harper’s blood counts and began running tests.
CHOC’s oncology and hematology team diagnosed Harper with myelodysplastic syndromes (MDS), a group of diverse bone marrow disorders in which the bone marrow does not produce enough healthy blood cells. MDS is rare in children, with one to four cases per one million children affected.
CHOC’s Blood and Marrow Transplant Program
Due to Harper’s rare condition, Dr. Jamie Frediani, pediatric oncologist at CHOC, recommended that she receive a bone marrow transplant. For patients with MDS, a bone marrow transplant would replace their unhealthy blood-forming cells, or blood stem cells, with healthy ones.
Dr. Rishikesh Chavan, medical director of the Blood and Marrow Transplant Program (BMT) at the Hyundai Cancer Institute at CHOC, and a team of expert oncologists, nurse care coordinators, social workers and child life specialists helped guide Harper and her family through her transplant process. The Hyundai Cancer Institute BMT Program is the only pediatric blood and bone marrow transplant program in Orange County and offers a full range of transplant procedures and services.
The first step of the BMT process at CHOC is to determine a bone marrow donor. The donor may be either a family member (related donor) or an unrelated donor. Related donors who are brothers or sisters and share the same parents have the highest chance of being a suitable donor since they may have inherited the same tissue type from their parents.
Harper’s older sister Taylor wasn’t a match for her. So, Harper’s care team went through NMDP/Be The Match® volunteer registry to find a donor.
About six weeks later, the CHOC team found that Kortnie was a donor match for Harper. They scheduled her bone marrow transplant, which acts much like a blood transfusion, in July 2019. Until then, Harper would undergo chemotherapy to kill her unhealthy blood cells and preparation for her transplant. She would also receive a series of tests to make sure she was in the best shape possible for her body to accept this new, healthy bone marrow.
Three weeks prior to Harper’s transplant, Dr. Fredani discovered that Harper had also developed acute myeloid leukemia (AML). Because of this, Harper would need more intense chemotherapy and her transplant needed would need to be pushed back. Fortunately, Kortnie agreed to postpone her donation for Harper’s new transplant date.
Transplant day or “Rebirthday”
On September 26, 2019, Harper received her bone marrow transplant. Her family considers this day her “rebirthday,” and they celebrate it big every year. Last year, Harper had a sloth-themed rebirth party complete with cupcakes, activities with her friends and face timing Kortnie.
Following her transplant, Harper and her family needed to be isolated in her room at CHOC to protect her new immune system for about 20 days.
Because of the heavy chemotherapy that Harper received leading up to her transplant, her immune system would be extremely fragile until her transplanted cells were engrafted, or traveled through the blood to the bone marrow where they began to make new white blood cells, red blood cells and platelets. This part of the transplant process was the most challenging for Harper’s family because of the uncertainty that they felt.
Stephanie says that CHOC’s BMT team was great at explaining what to expect throughout the engrafting process; they also explained that there could be variables and side effects ranging from skin rashes to liver failure.
“There was a sense of fear of the unknown,” says Stephanie. “As a family, they were trying to maintain a sense of normalcy and making sure Taylor was also looped in on what was going on.”
One of the most rewarding parts of Harper’s cancer journey, Stephanie says, was watching Harper progress following her transplant. Day by day, Harper was feeling better and becoming the lively child she once was again.
The other most rewarding part was meeting Harper’s bone marrow donor, Kortnie.
Bone marrow besties for life
With bone marrow donations from non-related volunteers, both parties must agree to disclose who they are, says Stephanie. The registry requires a year to pass before donors and recipients can contact each other.
Since both Stephanie and Kortnie agreed to disclose who they were, in October 2020, Stephanie messaged Korntie on social media.
She thanked her for the tremendous gift that she gave Harper and their family. From there, they began corresponding regularly — sharing photos and messages about their families.
“The gratitude and admiration we have for Kortnie is immense,” says Stephanie. “She gave us hope. She saved our daughter.”
Kortnie — a registered nurse, wife and mom — is from Utah, and she joined the Be the Match® registry after seeing an advertisement for it. She is passionate about helping others and hoped she would be a match for someone.
After some doctor’s appointments, blood work, a quick procedure and an overnight stay at the hospital, Kortnie’s bone marrow was on its way to Harper. Kortnie was sore and uncomfortable for a week but considered it well worth it.
To anyone considering becoming a bone marrow donor, Kortnie says, “Do it. You have nothing to lose besides some bone marrow that will regenerate. And who knows, you might just get an awesome new family and the satisfaction of knowing you saved someone’s life!”
In December 2020 on Harper’s birthday, Harper and Kortnie’s families video chatted for the first time. They had wanted to meet in person, but due to the COVID-19 pandemic, they postponed their trip. In November 2021, they finally met in person here in Orange County.
Remembering the first time they met, Stephanie says, “It was just like a hug. It was like seeing somebody you hadn’t seen for a while. They just immediately felt like family.”
Kortnie says, “It was amazing. To meet this perfect little girl in real life was unimaginable.”
Stephanie says that even though Harper is only six, she is a very perceptive child.
“Intuitively, I think Harper understands that Korntie has a special presence in her life,” says Stephanie. “Kortnie is so gentle and approachable with Harper, always reminding her that she is a part of her.”
Stephanie, Travis, Harper and Taylor just returned from a trip visiting Kortnie and her family in Utah where they spent five days meeting their extended family, hanging out and doing activities together.
They are already planning more future vacations together.
Today, Harper is doing great. She’s a precocious, happy first grader that is taking golf lessons, loves to do art and plays soccer.
“I know Harper knows that something serious occurred that changed her and her family,” says Stephanie. “The silver lining is the relationship that we have now with her donor. We’re just curious to see how this experience shapes her in the future.”
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