Our daughter, Audrey, was diagnosed with HLH (hemophagocytic lymphohistiocytosis) on November 12th, 2015, only 11 days after her first birthday. After A LOT of bloodwork, it was determined that Audrey had “primary” HLH meaning she had inherited the disease from me and my husband, Adam, and that there had been a “trigger” (virus, illness, etc.) that caused the HLH to suddenly begin attacking her little body. In other words, Audrey’s immune system had been sent into overdrive and was going to kill her if something wasn’t done quickly. We were told that Audrey would need chemotherapy, heavy steroids (plus lots of other medications) as well as a bone marrow transplant in order to survive. The news was absolutely devastating.
Audrey followed the 8-week HLH protocol at our home clinic and hospital in Northern VA, but we knew that when it came time for the actual bone marrow transplant we wanted to be in Cincinnati with some of the best HLH doctors in the World. We received news on Christmas Eve that they had found a PERFECT bone marrow match for Audrey so, on January 4th, we packed our bags and relocated our family to the Ronald McDonald House of Greater Cincinnati. And, on February 25th, under the direct care of Dr. Michael Jordan, Audrey received her life-saving bone marrow transplant. Audrey spent 35-days inpatient at Cincinnati Children’s Hospital, she was put on protective isolation for 103 days and on June 6th, 2016, Audrey was discharged and allowed to return to our home in Virginia.
Soon after Audrey was diagnosed, Team Audrey began evolving. This group consisted of amazing, kind-hearted friends, family and even strangers that helped us get through this terribly difficult time. Now that the tough times are (hopefully) behind us and we can look forward to the future, it is time to give back to the community and help other HLH patients and their families.
Some of our initiatives include distributing care bags to families staying at the nearby Ronald McDonald Houses, collecting and distributing donated items to Inova Children’s Hospital and the Hematology/Oncology Unit, providing support and additional assistance to HLH families at both Inova and Children’s National Medical Center in DC, raising HLH awareness throughout the community and helping to educate doctors and patients on the initial diagnosis and treatment of HLH.
We will be forever grateful for the people who cared for us during our time of need but now it is time for us to be the ones to lend a helping hand.