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At four years old, when a series of recurring ear infections led doctors to recommend additional blood testing, Gavin was diagnosed with acute lymphoblastic leukemia. After initially responding well to standard treatments, Gavin’s cancer returned twice, and his family sought out CAR T-cell therapy as an alternative treatment option. Today, Gavin is healthy and looking forward to starting high school!

In her own words, Gavin’s mother Kim shares the story of her son’s diagnosis, relapses, and the journey to CAR T-cell therapy.

During the fall of Gavin’s first year of preschool, he started getting fevers and ear infections. Prior to this time, the most he’d ever endured was a common cold. As the ear infections kept recurring, his doctors told us it was normal for a child’s first year of preschool to include new illnesses. We monitored and gave him antibiotics when prescribed and didn’t think much more of it. Then, on Christmas day, 2009, when Gavin was just 4 years old, he was listless and in pain. The left side of his head near his ear had started to swell and we took him to an ENT as soon as we could get an appointment.

Gav was admitted to our local hospital straight from the ENT’s office on December 28 with acute mastoiditis (the bone behind the ear was severely infected). Instead of just treating that, the amazing peds doctor there thought there was something a little suspect on his blood panel, ordered x-rays and ultrasounds that all came back clear, but the blood panel still showed some abnormalities even though there were no cancer cells. She wanted us to get to Children’s Hospital Orange County (CHOC) to get a blood marrow test to make sure/rule that out and was hoping against it but thought it best.

On January 1, 2010 we got the diagnosis of acute leukemia. Gavin had his 2nd surgery in 48 hours. First was the mastoidectomy to get rid of all that ear swelling (it turns out those chronic ear infections basically ate away both of his eardrums), and the second was to put a port in his chest to make giving meds and drawing blood easier, as well as having a spinal tap. He responded well to treatment and endured 3 and a half years of chemo. During this time, he started kindergarten on time, played little league, and had an otherwise “normal” childhood aside from several eardrum reconstruction surgeries.

In November 2014, Gavin was almost 5 years out from his initial diagnosis and over a year off of treatment. He had been diagnosed with sinusitis and started to have double vision. His doctors ordered a lumbar puncture and found leukemia in his central nervous system (CNS). He started 2 years of aggressive chemotherapy and cranial radiation to fight this relapse. Once again, he responded well to the treatment and was nearing the end of the 2 years when a routine check found leukemia in his CNS.

While discussing options with Gavin’s oncologist at CHOC, she mentioned that he might be a possible candidate for a cutting edge program at Children’s Hospital of Philadelphia (CHOP) that involved CAR T-cell therapy. The time of the 2nd relapse diagnosis on September 13, 2016 to being admitted into the CHOP study seemed like months, but it was actually just a few weeks.

Aside from our bi-coastal team of doctors, the Emily Whitehead Foundation was my support system. I’d have had no idea what to expect if it wasn’t for them.

We flew to Philadelphia over Halloween of 2016 for his T-cell collection, and then were back in California in a few days. We then flew back to CHOP right at the end of 2016 for conditioning chemo and he received his modified T-cells on January 3, 2017. He ended up having about a week of high fevers during the cytokine storm following the infusion, but otherwise did ok. We spent 2 months in Philadelphia total before returning home.

Since then, Gavin was able to return to school at the end of his 5th grade year after having missed 3rd, 4th, and most of 5th grade. He just finished 8th grade this year and received academic awards for English, science, and STEM. He played baseball, golf, and was on his Jr. High robotics team. Going to school is a luxury that he doesn’t take for granted, and he’s looking forward to starting high school in the fall.

I’m incredibly thankful for our CHOC and CHOP teams, and for all of the patients and families that came before us and made this treatment possible for Gavin. We wouldn’t be here without them.

 

We’re making it our mission to change the standard treatment narrative for all kids fighting childhood cancer. We want a different journey for these heroes – one without toxic treatments, fear of relapse, or loss of life. We need to write a better story for children fighting cancer. Donate Today