Portland toddler celebrates one year being brain tumor free
A Portland family is sharing their story of resilience and hope after their son was diagnosed with a rare brain tumor.
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PORTLAND Oregon (KPTV) — A local family is sharing their story of resilience and hope after their son was diagnosed with a rare brain tumor.
Little Lewis Larsen has been through quite the journey in his three years of life, and procedures for years after that.
“We did some hormone testing and found out he wasn’t producing some hormones we started putting him on medication for that,” said Rachel Larsen.
Lewis Larsen was just three months old when his parents Luke and Rachel Larsen noticed he was falling behind on the growth chart.
“He was with his grandparents and they were noticing that his eye had started to turn in– kind of cross a little bit,” said Luke Larsen. “One thing led to another–It kind of happened quickly but you know we were there spending the night and getting an MRI to see if anything was happening in his brain.”
That’s when they learned that Lewis had a Craniopharyngioma which is a benign but complex tumor in his brain that was impacting his hormone production and his vision.
“Very rare to find that tumor at 10 months old,” said Luke Larsen. “Usually they pop up when they’re in their teens or even much later than that.”
At just around a year old Lewis Larsen had two procedures to decompress the tumor in his brain. Unfortunately, both times the tumor grew back.
Lewis Larsen then began undergoing chemotherapy infusions every other week until a Facebook group with parents in similar situations led them to a more permanent solution.
“We needed hope so bad,” said Luke Larsen. “It’s been a long journey for us at this point.”
Just before Lewis Larsen turned three he and his parents traveled to Stanford University where he had an advanced endoscopic endonasal surgery to remove the mass. The procedure was done entirely through his nose.
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After ten hours in surgery, his parents finally got the good news, that the mass had been fully removed.
The family spent nine days at the hospital, a fairly short recovery time compared to the three to six weeks the procedure usually accounts for.
“We were so worried of his personality changing when he woke up and one of the first things he said was “Lightning McQueen,” said Rachel Larsen.
Lewis will still need to take hormone shots for the rest of his life, but right now, nearly a year after the surgery, Lewis is still tumor-free.
Lewis will celebrate one year since his surgery in June.
He and his family plan to travel back down to Stanford to celebrate the anniversary.
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