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Bone marrow transplant supplies hope and household: Harper’s story

Matching “bone marrow besties for all times” t-shirts symbolize Harper and Kortnie’s additional particular connection.  

In 2019, Kortnie saved Harper’s life.

After being recognized with a uncommon sort of blood most cancers on the Hyundai Most cancers Institute at CHOC, three-year-old Harper was in determined want of a bone marrow transplant. Harper’s suppliers discovered Kortnie by way of the Nationwide Marrow Donor Program/Be The Match® volunteer registry.

Due to the knowledgeable, compassionate care from CHOC and beneficiant present, Harper is now an lively, thriving six-year-old. She’s additionally gained an prolonged member of the family by way of Kortnie — joined collectively by the beneficiant present of wholesome blood cells.

Myelodysplastic syndromes (MDS) uncommon in youngsters

In April 2019, three-year-old Harper simply didn’t appear to be herself. Her dad and mom, Stephanie and Travis, observed that she was extra pale than ordinary, torpid and had been experiencing frequent ear infections — they thought that possibly she had caught the virus that was transferring by way of her preschool class.  

With it being after typical enterprise hours for his or her pediatrician’s workplace or pressing care, Stephanie and Harper headed to CHOC at Mission Hospital.

Stephanie, Harper, Travis and Taylor

At CHOC Mission, the CHOC staff did some bloodwork and found that Harper had low counts of white blood cells, crimson blood cells and platelets. They shortly transferred her to CHOC Hospital in Orange, the place she was admitted to the Josie Y.S. Lee Pediatric Intensive Care Unit (PICU). There, the suppliers have been in a position to stabilize Harper’s blood counts and started working checks.

CHOC’s oncology and hematology staff recognized Harper with myelodysplastic syndromes (MDS), a bunch of various bone marrow issues wherein the bone marrow doesn’t produce sufficient wholesome blood cells. MDS is uncommon in youngsters, with one to 4 circumstances per a million youngsters affected.

CHOC’s Blood and Marrow Transplant Program

Because of Harper’s uncommon situation, Dr. Jamie Frediani, pediatric oncologist at CHOC, really useful that she obtain a bone marrow transplant. For sufferers with MDS, a bone marrow transplant would exchange their unhealthy blood-forming cells, or blood stem cells, with wholesome ones.

Dr. Rishikesh Chavan, medical director of the Blood and Marrow Transplant Program (BMT) on the Hyundai Most cancers Institute at CHOC, and a staff of knowledgeable oncologists, nurse care coordinators, social staff and little one life specialists helped information Harper and her household by way of her transplant course of. The Hyundai Most cancers Institute BMT Program is the one pediatric blood and bone marrow transplant program in Orange County and provides a full vary of transplant procedures and companies.

Harper in her room at CHOC Hospital in Orange

Step one of the BMT course of at CHOC is to find out a bone marrow donor. The donor could also be both a member of the family (associated donor) or an unrelated donor. Associated donors who’re brothers or sisters and share the identical dad and mom have the very best likelihood of being an appropriate donor since they might have inherited the identical tissue sort from their dad and mom.

Harper’s older sister Taylor wasn’t a match for her. So, Harper’s care staff went by way of NMDP/Be The Match® volunteer registry to discover a donor. 

About six weeks later, the CHOC staff discovered that Kortnie was a donor match for Harper. They scheduled her bone marrow transplant, which acts very similar to a blood transfusion, in July 2019. Till then, Harper would bear chemotherapy to kill her unhealthy blood cells and preparation for her transplant. She would additionally obtain a sequence of checks to verify she was in the perfect form attainable for her physique to just accept this new, wholesome bone marrow.

Three weeks previous to Harper’s transplant, Dr. Fredani found that Harper had additionally developed acute myeloid leukemia (AML). Due to this, Harper would wish extra intense chemotherapy and her transplant wanted would must be pushed again. Thankfully, Kortnie agreed to postpone her donation for Harper’s new transplant date.

Transplant day or “Rebirthday”

On September 26, 2019, Harper obtained her bone marrow transplant. Her household considers today her “rebirthday,” and so they rejoice it huge yearly. Final yr, Harper had a sloth-themed rebirth get together full with cupcakes, actions along with her pals and face timing Kortnie.

Following her transplant, Harper and her household wanted to be remoted in her room at CHOC to guard her new immune system for about 20 days.

An indication with constructive notes from CHOC’s employees for Harper’s transplant day

Due to the heavy chemotherapy that Harper obtained main as much as her transplant, her immune system could be extraordinarily fragile till her transplanted cells have been engrafted, or traveled by way of the blood to the bone marrow the place they started to make new white blood cells, crimson blood cells and platelets. This a part of the transplant course of was probably the most difficult for Harper’s household due to the uncertainty that they felt.

Stephanie says that CHOC’s BMT staff was nice at explaining what to anticipate all through the engrafting course of; additionally they defined that there may very well be variables and unintended effects starting from pores and skin rashes to liver failure.

“There was a way of concern of the unknown,” says Stephanie. “As a household, they have been making an attempt to keep up a way of normalcy and ensuring Taylor was additionally looped in on what was occurring.”

Probably the most rewarding components of Harper’s most cancers journey, Stephanie says, was watching Harper progress following her transplant. Day-to-day, Harper was feeling higher and changing into the vigorous little one she as soon as was once more.

The opposite most rewarding half was assembly Harper’s bone marrow donor, Kortnie.

Bone marrow besties for all times

With bone marrow donations from non-related volunteers, each events should conform to disclose who they’re, says Stephanie. The registry requires a yr to go earlier than donors and recipients can contact one another.

Since each Stephanie and Kortnie agreed to reveal who they have been, in October 2020, Stephanie messaged Korntie on social media.

She thanked her for the great present that she gave Harper and their household. From there, they started corresponding usually — sharing pictures and messages about their households.

From left: Stephanie, Taylor, Harper, Kortnie, Travis, Kortnie’s husband Braxton and child McKinely throughout their first assembly journey at CHOC Hospital in Orange

“The gratitude and admiration we have now for Kortnie is immense,” says Stephanie. “She gave us hope. She saved our daughter.” 

Kortnie — a registered nurse, spouse and mother — is from Utah, and he or she joined the Be the Match® registry after seeing an commercial for it. She is keen about serving to others and hoped she could be a match for somebody.

After some physician’s appointments, blood work, a fast process and an in a single day keep on the hospital, Kortnie’s bone marrow was on its approach to Harper. Kortnie was sore and uncomfortable for per week however thought-about it nicely value it.  

To anybody contemplating changing into a bone marrow donor, Kortnie says, “Do it. You don’t have anything to lose in addition to some bone marrow that can regenerate. And who is aware of, you may simply get an superior new household and the satisfaction of realizing you saved somebody’s life!”

Learn how a bone marrow transplant impacted younger athlete, Israel, and impressed a profession in nursing.

Adventures forward

In December 2020 on Harper’s birthday, Harper and Kortnie’s households video chatted for the primary time. They’d needed to satisfy in particular person, however as a result of COVID-19 pandemic, they postponed their journey. In November 2021, they lastly met in particular person right here in Orange County.  

Remembering the primary time they met, Stephanie says, “It was similar to a hug. It was like seeing any individual you hadn’t seen for some time. They only instantly felt like household.”

Kortnie says, “It was wonderful. To satisfy this good little woman in actual life was unimaginable.”

Stephanie says that although Harper is just six, she is a really perceptive little one.

“Intuitively, I feel Harper understands that Korntie has a particular presence in her life,” says Stephanie. “Kortnie is so mild and approachable with Harper, at all times reminding her that she is part of her.”

Stephanie, Travis, Harper and Taylor simply returned from a visit visiting Kortnie and her household in Utah the place they spent 5 days assembly their prolonged household, hanging out and doing actions collectively.

They’re already extra future holidays collectively.  

Harper with considered one of Kortnie’s puppies throughout their journey to Utah to go to

At the moment, Harper is doing nice. She’s a precocious, glad first grader that’s taking golf classes, likes to do artwork and performs soccer. 

“I do know Harper is aware of that one thing severe occurred that modified her and her household,” says Stephanie. “The silver lining is the connection that we have now now along with her donor. We’re simply curious to see how this expertise shapes her sooner or later.”

CHOC Hospital was named one of many nation’s greatest youngsters’s hospitals by U.S. Information & World Report in its 2022-23 Finest Youngsters’s Hospitals rankings and ranked within the most cancers specialty.

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