Name: Alexa
Age and Date of Diagnosis: Diagnosed at 10 yrs old in September 2019
Diagnosis: (Primary/Secondary): Primary
Location of Treatment: UCSF Benioff Children’s Hospital - Oakland & San Francisco
Child’s Interests: Soccer, writing stories (especially about wolves), reading
Alexa was an active 10 yr old with no health issues. One Saturday in late August she was out on the soccer field, doing what she loved best, when she suddenly just stopped playing and stood in the middle of the soccer field. This was so out of character for her that as soon as a break was called, her mom went out to get her and realized she was burning up with a fever. This turned out to be a fever that never went away on its own. After two weeks of an unexplained fever and lots of tests, she was finally diagnosed with HLH. At the time, the doctors had hoped that it was Secondary, so they started her on the HLH-2004 treatment protocol.
Alexa spent the Fall of 2019 receiving treatment. In late November, her doctors weaned her off the steroids but within 24 hrs, the fever had returned. This time, it developed into having CNS involvement. At this point, her doctors informed her family that they were diagnosing her HLH as primary and we would need to start the Bone Marrow Transplant process. UCSF immediately started the process of testing her two sisters, her mom & her dad. Things got slightly complicated in the New Year when her family switched insurance and had to transfer her care to USCF San Francisco for the transplant.
While waiting for the results of the hospital’s testing, Alexa’s Dad, who has been on the Be the Match registry for years, received a call from Be the Match. They informed him that he was a match for a 10 yr old girl and asked him if he’d still be interested in being a donor. Alexa’s family immediately placed a call to their social worker. Since Be the Match is an anonymous system, it took some creative research, but it was discovered that Be the Match had managed to match Alexa & her Dad before the hospital had even been able to. Neither UCSF or Be the Match had seen this happen before. It was obviously decided that her Dad would proceed with being her donor.
In early March 2020, Alexa ended up back in the hospital for what would turn out to be her last time. And then, Covid hit. What proceeded was months of a very tough battle for Alexa. She fought so hard and overcame so many obstacles, all complicated by the worldwide pandemic that was going on around her. Alexa finally received her stem cell transplant, using her Dad’s bone marrow, on June 26, 2020. Sadly, Alexa’s body had been so ravaged by HLH and the many complications that come along with it, that her body’s immune system was not able to rebuild itself in time. Alexa lost her battle with HLH on Day +10 of her transplant on July 7, 2020. Like all her fellow HLH warriors and angels, Alexa fought hard and proved to the doctor’s time and time again how very strong she was. Alexa loved wolves and the wolf was the theme of her transplant. Like wolves, Alexa traveled her journey with her pack. Her family has vowed to continue her fight by assisting in helping other HLH families in their own journeys, so that they never have to walk alone.
