Jamie and Brad were told that HLH had attacked Tyler’s spleen, liver, kidneys, heart, central nervous system and skin. Tyler continued to fight for his life over the next several weeks. They stayed at his bedside the entire time. Their infant son, Cameron, was cared for by family members who brought him to the hospital daily so Jamie could breastfeed him while never leaving Tyler’s hospital room.
Jamie and Brad were told that since Tyler’s HLH was genetic in origin, the only cure was a bone marrow transplant.
It was decided that Jamie would travel with Tyler to Cincinnati Children’s Hospital Medical Center for the transplant, and in October 2011 once they realized what they were facing financially, Jamie and Brad reached out to the Children’s Organ Transplant Association (COTA) for assistance and support. On Dec. 1, 2011, Jamie and Tyler flew to Cincinnati to start the bone marrow transplant process more than 1,000 miles from their home, while Brad stayed behind in Rhode Island to keep working and to keep some normalcy in Cameron’s daily routine.
According to Jamie, “When Tyler and I left for Cincinnati Children’s we were leaving our life and family behind on this journey of the unknown. It was extremely hard leaving behind my nine-month-old baby and my husband, but it was the only choice we had … to save Tyler’s life.”
Tyler received his bone marrow transplant on January 4, 2012, and both he and his mom remained in Cincinnati for 200 days. According to Jamie, these were long and exhausting days and many times she felt ready to give up and lose hope. But Tyler kept exceeding the doctors’ expectations, which would strengthen her resolve to fight for him at his bedside.
Being part of the COTA family also gave both Jamie and Brad hope as well.