Back-to-School is a Big Deal for Leo After Years of Being Immunocompromised
August 30, 2021
In kindergarten, Leo was diagnosed with a rare, life-threatening blood disorder. For years, he missed out on routine daily activities. Then, COVID hit. Two bone marrow transplants and 275 nights in the hospital, Leo hopes this school year will be different.
The first day of school was a momentous occasion for 5th grader and Patient Ambassador Leo. If all goes well, it will be the first time that this nearly 11-year-old boy has ever experienced a full year of in-person school.
In kindergarten, he was diagnosed with a rare, life-threatening blood disorder, aplastic anemia, that rendered him severely immunocompromised, leaving him unable to attend school, go to the grocery store, play with friends or be around large groups of people.
Since his diagnosis, Leo missed significant parts of every grade while undergoing treatment. And then COVID hit. As he heads into 5th grade this fall, Leo is hopeful that this school year will be different.
An unexpected diagnosis
When Leo went in for a routine physical at age 6, he had a mild fever and sore throat, and his doctor noticed a rash across his body. Leo was prescribed antibiotics for a strep infection, but he became progressively worse over the following days with extreme lethargy and bleeding gums. Eventually, his temperature reached 106 degrees.
Leo’s family took him to their local emergency room on New Year’s Day 2017. Leo’s bloodwork revealed he had an extremely low white blood cell count, which limited his ability to fight infection.
After several days of testing, Leo was diagnosed with aplastic anemia. Unlike leukemia, when the bone marrow makes cancerous blood cells that crowd out healthy cells, aplastic anemia is a rare and serious condition that occurs when the bone marrow is damaged and stops producing enough new blood cells.
Leo was immediately transferred to Children’s Hospital Colorado for treatment. The Children’s Colorado Center for Cancer and Blood Disorders is ranked one of the top programs in the nation, and their expert care team knew just what to do.
Seeking a donor
After the first course of treatment was unsuccessful, it was determined that Leo required a bone marrow transplant. His family was devastated to learn Leo had no perfect familial matches for a bone marrow donor and no perfect matches from the millions of potential donors registered with the global bone marrow transplant registry, bethematch.org.
Because they could not find the exact match for Leo, his team of doctors at Children’s Colorado elected to use a pioneering new procedure called a halpoidentical transplant, or half-match transplant.
Leo’s sister was identified as the best candidate, and she gladly agreed to be her brother’s donor. Leo received his bone marrow transplant in the summer of 2017. At first, Leo experienced a few weeks of mild improvement, but hope quickly turned to devastation when Leo’s body rejected the transplant and the situation became very precarious. Leo’s only hope for survival was to attempt another bone marrow transplant with a different donor.
275 nights in the hospital
Doctors at Children’s Colorado were determined to do whatever it took to save Leo’s life. For his second transplant in October 2017, they decided to use stem cells from his mother and a different transplant preparation regimen. Thankfully, the second attempt was successful, and Leo’s ability to make new blood cells was slowly restored.
While the transplant was successful, Leo remained in an immunocompromised state for over a year. After 275 nights in the hospital scattered over a 22-month period, Leo was finally cleared to return to school in October of 2018.
By then, Leo had missed the second half of his kindergarten year and all of first grade. However, thanks to home schooling services provided by Denver Public Schools, the educational staff at Children’s Colorado and his grandparents’ support, Leo did not miss a beat academically when he rejoined his peers for the start of second grade.
But then COVID hit halfway through the school year, and cut that grade short, too. The following year, for third grade, Leo’s family decided to keep him home again, just to be safe.
“It was really, really hard to go through being isolated again,” said Leo of his experience during COVID, “especially with the added challenge of school.”
Now, more than four years after his diagnosis and nearly three years after his successful bone marrow transplant, Leo is a happy and healthy child. He loves basketball and building intricate towers in the Minecraft video game with his friends, and he is learning to play the keyboard.
“Leo made great friends with his doctors and nurses while at Children’s Colorado,” said his family. “He is excited to give back to the hospital and help other children and their families as a Patient Ambassador.”
Leo is raising money for the Bone Marrow Transplant Program at Children’s Hospital Colorado. Donate to his page here.