Almost Home – The Killey Family

There is a special bond and love that exists between sisters. Last summer the Killeys were visiting family in Colorado when a friend asked if their youngest child, Harper, was feeling okay. Harper’s mom, Lindsey, recalls that she thought Harper was fine until she noticed how pale and lethargic she was acting, as well as unexplained dark bruises that had appeared out of nowhere all over Harper’s little body.

Lindsey took Harper to an urgent care where they told her to take Harper immediately to the emergency room. At the ER, they drew labs and within 20 minutes, the doctors informed Lindsey that Harper’s blood work had some very concerning markers and that an oncologist was looking at the blood smear and would be in to speak with her within the hour.  While waiting, Harper lost consciousness and was taken to the main trauma area. Meanwhile, the oncologist came in and informed Lindsey that she strongly believed that Harper had Leukemia. Lindsey said, “I was absolutely shaken to my core and this was one of the worst and most surreal moments of my life.”

Harper was admitted to the hospital and was given two blood and platelet transfusions to try to stabilize her enough so they would be able to fly home to Zebulon, NC. Upon landing in North Carolina, Harper was admitted to UNC Children’s Hospital where the doctors began their own work up, including a bone marrow biopsy on August 5. The results revealed that Harper did not have leukemia, but the doctors were unsure of what was making her so sick. After six weeks of bi-weekly blood and platelet transfusions, Harper was diagnosed with Severe Aplastic Anemia (SAA).  SAA is a rare and serious condition in which the bone marrow does not produce new blood cells. The doctors shared with Lindsey and Scott that their daughter would need a bone marrow transplant. The best success rate for a bone marrow transplant occurs when a sibling is the bone marrow donor, but unfortunately there is only a 25% chance of a sibling being a match.

Thankfully, Harper’s big sister, Madison, age 8, was a perfect match to be her bone marrow donor.  Preparations for the transplant began on October 26 when Harper was readmitted to the hospital and started chemotherapy. The following week on November 1, 2022, which happened to be Scott’s birthday, the parents checked their oldest child, Madison, into the hospital where she would undergo a surgical procedure to donate lifesaving liquid marrow for her little sister.  Within hours of the marrow extraction from Maddie, Harper received a transfusion and the whole transplant team celebrated her re-birthday with a celebratory song.

Following the transplant at UNC Children’s Hospital, the doctors explained to the Killey family that they would need to live within 30 minutes of the hospital for the first 100 days post-transplant. On December 8, after living in the hospital for 48 days, Harper was discharged, and the family moved into one of the two-bedroom apartments at the Ronald McDonald House of Chapel Hill, located one mile away from the Hospital. They would continue to call the House “home” for 66 nights.

Lindsey recalls, “Walking through the doors here, there was such a huge feeling of relief and peace. The grounds are so beautiful, the living spaces are so nice and every single thing you could possibly need is already being met.”

Lindsey and Harper spend the weekdays together doing arts and crafts and Lindsey works remotely during the early morning hours and in the evenings. On the weekends, the family is reunited when Harper’s dad, Scott, and big sister, Maddie, come to stay in the apartment with Lindsey and Harper.

The family has celebrated several holidays and special occasions while living at the House. Lindsey’s favorite story from their time at RMH is Christmas Eve. She recounted how Santa came and made a special visit to their apartment since Harper can’t be around other people.  “…Madison and Harper were able to tell Santa one more time what they would like. It really was magical and made this Christmas so muchmore special.”

On January 26, Harper celebrated her 6th birthday with her family at the Ronald McDonald House. Big sister, Maddie, got to stay out of school so that the whole family could be together to celebrate Harper’s special day, which included a giant unicorn balloon bouquet, ice cream, cake, and a special birthday visit to the RACH Kids Toy Room where Harper got to select a new toy for her birthday.

While Harper will live with SAA forever, Scott and Lindsey are hopeful that with the sibling bone marrow transplant that Harper will have the best odds for being able to live a more normal life. She will still be seen frequently at UNC where they will monitor her closely, transfusing her when needed, and begin the process of revaccinating her and getting her back to being a healthy little girl again.

Harper describes her big sister, Maddie, as her best friend and when Harper was asked what she thinks of staying at Ronald McDonald House, she said, “it’s almost home.”