Last summer, the Killeys were visiting family in Colorado when they noticed their youngest child, Harper, seemed pale and lethargic. She also had new, unexplained bruises on her body.
Harper’s mom, Lindsay, took her to urgent care, which sent her immediately to the emergency room. At the ER, Harper’s blood work showed concerning markers, and an oncologist was consulted. While mom and daughter waited, Harper lost consciousness and was taken to the trauma area. Meanwhile, the oncologist informed Lindsey she strongly believed Harper had Leukemia.
Lindsey recalls, “I was absolutely shaken to my core and this was one of the worst and most surreal moments of my life.”
Harper was admitted for blood and platelets to stabilize her enough that she could fly home to NC. At UNC Children’s Hospital, doctors began diagnostic testing, including a bone marrow biopsy. The results showed that Harper did not have leukemia, but doctors were unsure 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 Harper’s parents 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, and there is only a 25% chance of a sibling being a match.
Thankfully, big sister Madison was a perfect match. Preparation for the transplant began on Oct. 26 when Harper was readmitted to UNC to begin chemotherapy. The following week, Madison was checked in for the surgical procedure to donate lifesaving marrow for her little sister. Within hours of the marrow extraction, Harper received a transfusion, and the transplant team celebrated her re-birthday with a celebratory song.
Following the transplant, doctors explained to the Killeys that they would need to live within 30 minutes of the hospital for the first 100 days post-transplant. On Dec. 8, after being in the hospital 48 days, Harper was discharged, and the family moved into a two-bedroom apartment at Ronald McDonald House of Chapel Hill. Located one mile from UNC Children’s Hospital, the Killeys called the House “home” for 66 nights.
Lindsey says, “Walking through the doors, there was such a huge feeling of relief and peace. The grounds are so beautiful, the living spaces are so nice, and every single need is already being met.”
Lindsey and Harper spent their weekdays doing arts and crafts, and Lindsey was able to work remotely in the early morning hours and evenings. On the weekends, the family was reunited with Harper’s dad, Scott, and big sister Maddie at their RMH apartment.
The Killeys celebrated holidays and special occasions while living at the House. Lindsey’s favorite story from their time at RMH is Christmas Eve. She shares that 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 much more special.”
On Jan. 26, Harper celebrated her sixth birthday with her family at RMH. Big sister Maddie got to stay home from school to help 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 for a special birthday toy selection.
While Harper will live with SAA forever, Scott and Lindsey are hopeful that with her sister’s bone marrow, Harper will have the best odds for a more normal life. She will be monitored closely by UNC.
Harper describes her big sister as her best friend. When asked what she thinks of staying at Ronald McDonald House, she said, “It’s almost home.”
