Taming tiger country in a young boy’s brain
Just a few weeks after celebrating his second birthday, Theo Lacharite started to become fussy and irritable, and wasn’t sleeping through the night.
Theo’s parents Marissa Connell and Terence Lacharite took him to their doctor’s office, where he was diagnosed with a double ear infection and prescribed antibiotics. But Theo’s symptoms grew worse. He was vomiting, and his parents noticed that one of his eyes was turning inward.
Concerned about escalating, unrelenting symptoms, they took him to the emergency department at Hamilton Health Sciences’ McMaster Children’s Hospital (MCH) where a CT scan revealed a brain tumor.
“We walked into the emergency department thinking that Theo would be treated for a stubborn ear infection and found out that our son had a very large brain tumor,” says Marissa.
Theo was diagnosed with a pilocytic astrocytoma, the most common brain tumor in young kids. While it’s considered a common type of slow growing tumor, in Theo’s case there were significant complications due to its location. His pediatric neurosurgeon, Dr. Sheila Singh, calls the area ‘tiger country’ because of its dangerous location close to essential blood vessels, nerves and other structures in the brain.
“When treating a child who can’t have their tumor completely removed due to location, our goal shifts to monitoring the patient, and using other treatments to help them maintain good quality of life and good function until they’re 100 years old.” — Dr. Adam Fleming, HHS pediatric hematologist-oncologist
Top specialists
Singh is one of the foremost pediatric neurosurgeons in Canada. She’s division head of neurosurgery at HHS and a leading, award-winning brain cancer researcher. Earlier this month, Singh was named a co-recipient of the Canadian Cancer Society’s Robert Noble Prize for outstanding achievements in research.
“We fight for every single one of these children.” — Dr. Sheila Singh, HHS pediatric neurosurgeon
Dr. Sheila Singh, pediatric neurosurgeon at HHS McMaster Children’s Hospital, division head of neurosurgery at HHS and a leading, award-winning brain cancer researcher.
“We were so lucky to have Dr. Singh,” says Marissa. “She was incredible.” The family is also deeply grateful to pediatric hematologist-oncologist Dr. Adam Fleming, oncology fellow Dr. Kaitlyn Howden, and their entire MCH team.
“Every single person we’ve met with at McMaster Children’s Hospital, and there have been a lot, have all been remarkable.” — Marissa, Theo’s mom
Fleming is director of MCH’s Pediatric Neuro Oncology Clinic. His team cares for young brain tumor patients from the time they’re diagnosed until they turn 18. If they’re still receiving treatment at that age, they’re cared for as adults at HHS Juravinski Hospital and Cancer Centre, though MCH continues to monitor them for life.
“I’ve never met such caring people,” says Marissa of Theo’s pediatric care team that included neuro surgeons, oncologists, radiation oncologists, residents and fellows, nurses, physiotherapists, occupational therapists, dietitians, child life specialists, social workers and more.
“Every single person we’ve met with at McMaster Children’s Hospital, and there have been a lot, have all been remarkable.”
A tumor in tiger country
Theo’s tumor embedded itself into an area of his brain that impacts his carotid arteries, optic nerves and the pituitary stalk.
Carotid arteries are major blood vessels that provide the brain’s blood supply. Even the slightest movement while operating could cause a major stroke, due to the fragility of the tiny perforating vessels that reside around and beneath the confluence of the optic nerves. “You don’t even need to touch a carotid artery for this to happen,” says Singh. “Even dissecting the tumor near them could trigger a stroke.”
Optic nerves are made up of millions of nerve fibres that send visual messages to the brain to help people see, and an optic nerve at the back of each eye connects directly to the brain. Any attempt to disentangle optic nerve fibres from the tumor fibres would leave Theo completely blind.
The pituitary stalk is the connection between the pituitary gland and the hypothalamus, an area of the brain that produces hormones that control body temperature, hunger and thirst, mood, sex drive, blood pressure and sleep. “Disrupting the pituitary stalk could cause a child to have no normal hormone production for the rest of their life, with devastating consequences to their development and quality of life,” says Singh.
So instead of removing the tumor, Singh, Fleming and the team worked together to develop a treatment plan that involved leaving the majority of the tumor intact, and managing it like a chronic illness using a combination of traditional medications like chemotherapy and a new targeted medication to slow its growth.
Research and innovation
“When treating a child who can’t have their tumor completely removed due to location, our goal shifts to monitoring the patient, and using other treatments to help them maintain good quality of life and good function until they’re 100 years old,” says Fleming.
Dr. Adam Fleming is a hematologist-oncologist and director of MCH’s Pediatric Neuro Oncology Clinic.
Thanks to research and innovation, doctors now have new and emerging treatments in their tool kits, such as targeted therapies, that didn’t exist just a few years ago. Targeted therapies are being created for many types of cancer to recognize specific proteins contained only in those cancer cells and killing them, while leaving healthy cells alone. Theo takes a targeted cancer therapy that has proven to be effective in managing the growth of tumors.
The not-so-distant past
In 2010, when Fleming was completing a fellowship in pediatric neuro-oncology at Harvard Medical School in Boston, targeted therapies were just a concept. But just five years later, through research and innovation, they had made their way into clinical trials. Today, they’re available to cancer patients worldwide, through partnerships between hospitals and drug companies if these new medications are not yet on the market.
The targeted medication that Theo takes was not available 10 years ago. “And Theo’s only three years old,” says Singh. “The likelihood that there will be new medications developed to control his tumor growth over the next five to 10 years are extremely high. Our goal is to ensure that Theo, and his tumor, are managed for his entire life, into old age.”
It takes a village
Every Tuesday, the MCH neuro oncology team and key specialists and staff members meet to discuss their most complex cases, and make team-based decisions about patient care. Theo is among these intricate cases.
“Families may not realize just how much happens behind the scenes, and all of the experts who come together weekly to manage the care of these complex patients.” — Dr. Aseel Kabbani, senior medical resident
Theo is held by his dad, Terence, while mom Marissa holds baby Chloe and their oldest child Myles stands at her side.
When Singh first met Theo, his tumor was causing a buildup of fluid in his brain. Surgeries relieved pressure by draining the fluid, and a shunt was implanted in his head to drain buildups of fluid to the abdomen for reabsorption into the body. But Theo developed a major and very rare complication where the shunt over-drained, causing him to develop a large, Buddha-like belly. With only 19 such reported cases of this happening worldwide, Theo’s care team launched an international search for a solution.
“We looked at research from around the world and found a strategic and scientific way to manage this condition,” says Singh, adding that the new molecular targeted therapy Theo takes to manage his tumor is also preventing over-draining. If, down the road, this medication no longer works for Theo, his team will search for new solutions.
Behind the scenes
“Families may not realize just how much happens behind the scenes, and all of the experts who come together weekly to manage the care of these complex patients,” says Dr. Aseel Kabbani, a senior resident who’s training to become a neurosurgeon. As part of her residency, she took part in the weekly meetings to discuss Theo’s care.
“The first time I met Theo he was walking down the hallway, trying to hold his pants up because his belly had become so large,” says Kabbani, adding, “While it was cute, it was very concerning.”
Seeing the team working through possible causes and treatments, and taking part in this process, was inspiring, adds Kabbani.
But complications weren’t over for Theo.
Earlier this year, he spent three months in hospital after developing a serious abdominal infection related to the drainage.
His mom Marissa, nine months pregnant with her third child at the time, gave birth at the hospital while Theo was also a patient there. After delivering, Marissa and her newborn daughter Chloe moved into Theo’s hospital room where they stayed for three months until his infection was under control and he was ready to go home. Meanwhile, the family’s oldest child, Myles, 4, was home with his dad.
Marissa tears up when talking about the incredible support her family received from the nurses on Theo’s floor, whose many acts of kindness included taking baby Chloe for feedings so Marissa could sleep. “They were going completely above and beyond their role to make sure we were cared for,” says Marissa, “Every single one of those nurses was amazing.”
A happy little superhero
The tumor has made Theo, now aged 3, legally blind in one eye due to pressure its placing on the optic nerves. “But he has been able to adjust and adapt, and he gets around like any another child,” says Marissa. The tumor also caused diencephalic syndrome, a condition that makes it extremely difficult for Theo to gain weight.
“In spite everything Theo has been through, he remains happy,” says Marissa. “We call Theo a real life superhero. I can’t get over strong he is. He’s taught us so much about life.”
The title ‘superhero’ extends to Theo’s entire family, and all families managing under such incredibly challenging circumstances, says Singh.
“It’s our privilege to serve these families. We learn so much from these children and their families on how to provide the very best care possible. We fight for every single one of these children. Always front-and-centre for our team is how we can convert these children into long-term survivors with a good quality of life.”
