Devastating. It’s the first word that comes to mind when Alicia remembers the day her son Gavin was diagnosed with leukemia at 6 years old. The two years that followed were filled with numerous procedures, treatments, unplanned hospital visits and hair loss. Even with these challenges, it’s the compassionate care and support provided by the team at Children’s Minnesota that left lasting memories.
“Gavin doesn’t have memories of weekly lumbar punctures. He has memories of playing the animal guessing game with his child life specialist,” described Alicia.
Initial leukemia symptoms
The signs that something could be wrong with Gavin’s health came a couple weeks before his leukemia diagnosis in March 2021. First it was waking up in the middle of the night with a high fever and not feeling well. The next day, it was sudden hip pain so severe it hurt to go from sitting to standing. But it was the lab results that kept coming back abnormal that brought Gavin and Alicia to the cancer and blood disorders program at Children’s Minnesota, where he was soon diagnosed with B-cell acute lymphoblastic leukemia (ALL).
Kid-focused treatment support
Gavin’s first round of chemotherapy began soon after diagnosis and meant one month of intensive chemotherapy, the first week of which was in the hospital. What sticks out to Alicia about this time is how the care team worked to turn a difficult situation into a mostly positive experience for her son. The child life specialists played a big role in taking some of the worry out of Gavin’s medical procedures, like when he got a port implanted in his chest.
“Child life was amazing,” said Alicia. “When they were explaining the port that he was going to have placed, they had an Iron Man toy to show him how the port would go. They were saying what was going to happen in a factual but fun and light way. Everything was so relatable to Gavin.”
Alicia also appreciated Children’s Minnesota’s efforts to reduce the pain that may happen during treatments. Gavin was able to do his lumbar punctures and intrathecal chemotherapy injections – which are given into the fluid around the brain and spinal cord – under only mild sedation. This allowed him to be awake, in minimal pain and play with his child life specialist.
The supportive care went beyond medical treatments. While in the hospital he watched and played Bingo on Star Studio, the in-house TV channel at Children’s Minnesota. The healing arts program gave him painting projects to provide positive distractions.
Overcoming side effects
Some good news came after Gavin’s first month of chemotherapy — bone marrow tests classified his leukemia as low risk, meaning it was less likely to spread and would be less difficult to treat. But more rounds of chemotherapy would be needed to get him into remission.
Gavin experienced significant neuropathy as a side effect of the needed chemotherapy. This made it difficult for him to move around and he lost the ability to feel his fingers. This is why physical therapists (PT), and occupational therapists (OT) specialized in pediatric cancer care and chemotherapy issues are part of the multidisciplinary leukemia and lymphoma program at Children’s Minnesota. Over the course of his treatment, Gavin went to PT weekly for more than one year and OT for several months to help him regain strength and mobility.
The treatments also caused Gavin to lose his hair, but through everything he always had his family by his side. His father, along with his two brothers, shaved their hair to support Gavin.
Treatment ends
Gavin celebrated the end of his treatment in May 2023. Despite some lingering side effects, he is now an active 9 year old who loves mountain biking, baking and playing with family and friends. Seeing how well her son is doing today, Alicia is grateful for Children’s Minnesota and the kid-centered care the team provides.
“Gavin looks back on his treatment and it wasn’t a bad time. He really has the best memories of his time at Children’s Minnesota. Their care and treatment for kids is just so special.”
Stories like Gavin’s make it clear: your donations matter
Your donations make it better in so many ways. With your help, we can provide all the little things that help a child smile when they’re in the hospital. And we can provide the big things, like cutting-edge technology and innovation — the kind that saves lives. With your help, we can surround our patients with healing therapies and support services that keep their families strong when they need it most. Donate today at www.childrensmn.org/give.
