Parents of toddler with tumour trying to buy time
Family aiming to raise funds for ongoing cancer treatment and physiotherapy
The GoFundMe page that Julie and Jeff Jewett have set up for their 2½-year-old daughter, Lily, aims to pay for things like much-needed physiotherapy, some of her medications and supplies related to her feeding: tubes, formula and the like that are no longer covered by the province. But what it’s really doing, Julie says, is buying time.
“We need to buy time until she’s old enough for radiation, and we need to buy time for medical advances that are in the pipeline.
“She’s too little right now. You can’t radiate a two-year-old’s brain or she’d be two forever.”
Lily was a healthy eight-pound, nine-ounce baby when she was born on June 13, 2017, but she didn’t maintain her robust percentile on the weight chart for long, slipping below the 50-per-cent mark by the time she was a few months old. She began vomiting frequently at three months and one of her eyes began to intermittently shake a month later.
At five months, Lily was diagnosed with diencephalic syndrome, a rare condition caused by a tumour just above her brain stem. Symptoms typically include vomiting, vision difficulties, failure to gain weight, weakness and headaches. Julie notes the tumour is in the middle of Lily’s head and envelops her optic nerves, making accessing it extremely difficult and dangerous and removing it nearly impossible.
In the span of just over half a year, though, Lily has undergone five surgeries at CHEO, spending a total of 60 hours in operating rooms. During the lengthiest procedure, a 20-hour session in February 2018 to try — ultimately unsuccessfully — to remove much of the tumour, Lily suffered a major stroke that left her paralyzed on much of the right side of her body and unable to hold her head up by herself.
“All of her muscles were tight, contracted, and she was in a lot of pain,” Julie recalls. “And she lost her ability to kind of do anything.”
About a week after that surgery, Lily restarted chemotherapy with a stronger treatment than previously administered, but the tumour continued to grow. An MRI showed it to be the size of a baseball.
Despite fears of another stroke, a subsequent operation to remove a large portion of the tumour was initially deemed a success. Just three days later, however, the space created by the tumour’s removal was filled with more cancerous cells. The tumour was larger than ever.
“It shouldn’t have happened. No one can explain it,” Julie says. “We were in shock. We were despondent. Everything was starting to feel hopeless.”
Julie says Lily’s case was presented to the Hospital for Sick Children in Toronto, and Lily was put on an anti-cancer inhibitor drug, Trametinib, that was still in trial. The CHEO Foundation initially helped offset the drug’s cost until its manufacturer, Novartis, agreed to supply it on compassionate grounds. The drug is otherwise not yet available in Canada.
“It’s been nothing short of a miracle,” Julie says. “Her tumour has shrunk by about 70 per cent and has stopped growing. It was like a light bulb went off in her head and we got her back. She wasn’t there for months … she was so sick.”
Julie and Jeff ’s issues managing Lily’s needs now stem largely from the stroke. She can hold her head up and scoot along the floor on her bum and sit up on her own, but she can’t stand. Her vocabulary consists of about 50 words and she’s starting to communicate.
“We’re trying to build her as much of a normal childhood as we can,” says Julie.
Lily receives two hours of physiotherapy each month at the Ottawa Children’s Treatment Centre, but Julie says that’s clearly not enough. Meanwhile, a private physiotherapist who treats Lily told them of a specialized treatment program for children with neurological problems — Cuevas Medek Exercises — developed by Chilean kinesiologist Ramón Cuevas and offered in Toronto. Julie says the program uses gravity and instincts to provoke automatic responses from the brain.
The Jewetts took Lily to Toronto to try it out two weeks ago. “And Lily stood up for the first time by herself,” Julie says. “For a good 30 seconds.
“Everybody in the room was crying. It was just an unbelievable moment.”
The Jewetts’ GoFundMe page aims to raise $5,000 for further physio treatments and other medical expenses for Lily.
“I want Lily to do the CME therapy. She’s been through so much and we don’t know what her potential is. There are so many unknowns. We don’t know how severe the brain damage was from the tumour itself, from all the different surgeries and the scar tissue that builds up from those, and from the stroke.
“If we continue down this path of two hours of therapy at the hospital every month, she’s going to end up in a wheelchair,” Julie adds. “But it’s clear she has the potential to do more. The CME opened our eyes to the potential she still has.”
We need to buy time until she’s old enough for radiation, and we need to buy time for medical advancements that are in the pipeline.