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Gold Ribbon Hero: Lewis

Meet Lewis, a Non-Rhabdomyosarcoma CIC-DUX4 warrior.

The day before diagnosis, Lewis’ mother, Dynae had just given birth and was in the hospital recovering. Her husband, LT had noticed a quarter sized lump on the mid-inner thigh of Lewis’ leg. Lewis had informed his dad that it itched, rather than hurt. Lewis was taken to the emergency room after suspecting it was a severe reaction to a bug or spider bite. The ER reassured the parents that it was nothing after cutting into the mass and nothing coming out.

Call it mothers intuition, but Dynae did not agree with the abscess diagnosis. Lewis’ pediatrician immediately got him in to see a pediatric surgeon. The surgeon agreed that the lump needed to be removed and sent to pathology. Surgery was delayed two weeks after Lewis tested positive for Covid, despite showing no symptoms. On July 14, 2020, the pathology revealed an unknown type of sarcoma. On July 16, the family met with the oncologist for the first time. Lewis’ tumor was genetically tested to determine what type of sarcoma was present. At the time, they thought it was Ewing’s sarcoma. Lewis was scheduled for scans and a port was placed. “When the surgeon told us it was a sarcoma and that oncology would tell us more, it sounded like the mom in Peanuts. Nothing got through my brain. It was very much a blur” remembers Dynae.

On August 12, 2020, Lewis was diagnosed with Non-Rhabdomyosarcoma CIC-DUX4, a very rare type of sarcoma. There is no specific treatment for this particular type, so Lewis was treated with a modified aggressive Ewing’s sarcoma treatment.

Treatment started 7 days later on August 19. After his first chemotherapy treatment, he began losing his hair. He lost his appetite and was very sick following his first chemo. Other side effects like neutropenic fevers landed him in the hospital for a few days. In December 2020, Lewis had a surgery to remove four places. Of the four, only one was a chemotherapy resistant active tumor. In May of 2021, Lewis started radiation and only had minimal redness at the site. He liked the radiation machine. After treatment scans have shown no new tumors so far despite the high recurrence rate of his cancer.

During Lewis’ chemotherapy treatment, his parents noticed a change in his behavior. From withholding stool to attitude changes, they knew he was just not acting like himself. After seeing a psychologist, psychiatrist and behavioral health specialist, it was found that Lewis was diagnosed with Autism Spectrum Disorder Level 1, formerly Asperger’s). Doctors believed that the neurotoxicity in one of the chemotherapy drugs had exacerbated a previous mild case of ASD Level 1.

Currently, Lewis is doing well and continues to have post treatment scans.

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