Jane’s seven-year-old son woke up in the middle of the night and, on his trek to the bathroom, called out from the top stair, “My leg doesn’t work!” Jane’s initial sleepy thoughts were, “Well, don’t pee at the top of the stairs.” She asked him what his leg felt like and he said he had pins and needles in his leg and his arm. She told him to shake it out and go to the bathroom. He made his way downstairs and once in the bathroom, yelled, “My hand doesn’t work!” She and her husband got up and found that the boy couldn’t apply pressure with his left hand or foot. They let him pee, dressed him and Jane took her son to the Grey Nuns Hospital.
GETTING BETTER: Today, surgeons like (L-R) Dr. Vivek Mehta, Dr. Keith Aronyk and Dr. Jeff Pugh, are collaborating to improve outcomes in the littlest patients.
Photo Kelly Redinger
Over the six weeks prior, Jane’s son had thrown up three or four times exactly at 5:50 a.m. each time. Doctors explained later that the vomiting was due to intracranial pressure that built up while he lay in bed. Jane says because they were “anal parents,” the kids went to bed at the same time every night, hence her son’s clockwork vomiting.
On the way to the hospital, Jane called her brother, who is a doctor, detailing the early-morning events. He told her, no matter how much better his nephew seemed to get while at the hospital – “Do not leave!”
The doctor examining her son looked into the boy’s eyes and saw papilledema: optic disc swelling due to increased intracranial pressure. Nurses, medical students and other doctors took turns looking into her son’s eyes. “I’m not stupid – I knew something was going on,” Jane says. She found out that papilledema is a condition many doctors read about in text books but rarely see.
Because he was so young, Jane was allowed to accompany her son for his CT Scan. The image on the screen showed a “great big, black circle.” It was a fluid-filled cyst that a solid tumour had created and it was causing many of her son’s symptoms. The hospital gave Jane the scans and told her to take them, and the boy, to Edmonton’s Stollery Children’s Hospital where staff was expecting them.
Once at the Stollery, Jane rested on the bed while her son blew up surgical gloves to play with while they waited. Jane remembers seeing a doctor in full surgical gear peek into the room, look around and step out again. It was Dr. Vivek Mehta, lead of the Stollery’s pediatric neurosurgical team. He came back a few minutes later a little puzzled. Mehta told Jane much later in the treatment process that he was shocked by the boy’s activity level after seeing the serious nature of the scans.
Treatment is about timing. Early and better detection are goals Dr. Mehta and the rest of the Stollery’s neuro-oncology team aim for. “You can come into an office and say, ‘I’ve got headaches, I’m puking and I’m off-balance,’ and we’ll send you to a CT Scan,” Dr. Mehta says. “A three-year-old will come in and some will say it’s the flu – and then how are you going to get them to sit still (for a scan)? So you can imagine all the extra hurdles that exist to make an accurate and timely diagnosis before they’re sick.”
Jane’s son’s treatment began that morning at the Stollery, with a strong steroid to reduce the cyst’s side effects. The team scheduled surgery for a few days later.
She thinks it was a Tuesday morning in October 2003 when the surgeons removed her son’s brain tumour. By the afternoon, he was resting in intensive care. Jane and her husband alternated every two hours between a sleeping area in the Stollery and their son’s room so he wouldn’t be alone.
It’s always a rough road when doctors diagnose a child with a brain tumour, says Dr. Keith Aronyk, one of the three pediatric neurosurgeons at the Stollery and head of the neurosciences clinical department at Alberta Health Services. Families should expect to travel to Edmonton frequently during a year to 18-month period. (The Stollery pediatric neurosurgeons treat patients from Northern BC, Northern Alberta, the Northwest Territories and part of Saskatchewan.) The first step, Dr. Aronyk tells parents, is surgery, which can take two of the three pediatric neurosurgeons about six to eight hours. After surgery, the Stollery’s neuro-oncology team determines other therapies, such as radiation and chemotherapy.
Dr. Aronyk says when he first started performing pediatric neurosurgeries for malignant brain tumours in 1985, the outcomes were rarely positive. Now as many as 60 per cent of these patients can expect a five-year survival rate. Many though, at that five-year mark, will have some brain developmental delay due to the surgery and the subsequent radiation and chemotherapy treatment.
“When you’re working on the brain stem of a child, that’s their living and breathing centre. There is no room for error,” says Dr. Mehta.
Jane’s son was wide awake by 4 a.m. and starving. “ ‘I’m hungry, I’m hungry’ he said and he nagged the nurses so much that they finally gave him ice chips,” she says.
When Dr. Mehta came by around at 7 a.m. for his morning rounds, he was impressed that his spunky patient was awake, alert and eager to negotiate for food. “I’ve already had ice chips,” the patient told him when the doctor offered them to the boy. They settled on popsicles. Jane says he ate six or seven over the course the morning. French fries became his next food request. Dr. Mehta said he should be eased slowly back onto regular food.
When Jane finally brought him some, she tried to pace him. He finished them all.
The third pediatric neurosurgeon at the Stollery is Dr. Jeff Pugh, who is also an assistant professor in the Division of Neurosurgery. “I think it’s important to know that we do not work in isolation,” he says. “We have a committed team of medical oncologists, radiation oncologists, surgeons, pathologists, neuropsychologsits, social workers, physiotherapists and occupational therapists working closely.” The team doesn’t stop at the door of the Stollery. The pediatric neuro-oncologists have contacts throughout North America helping everyone invested to remain up-to-date on new, ongoing or recent clinical trials. “We don’t hesitate to send patients for treatment elsewhere if we believe that another centre has the technology to provide the best care that we don’t have available.”
One such treatment is proton beam radiation therapy. Aronyk is leading the charge to have Edmonton become the first Canadian city to offer it. He says this treatment can target a tumour more precisely than existing forms of radiation therapy.
Jane’s son is 16 now. “He has a learner’s license, he plays soccer, non-contact hockey, he curls, he teaches golf,” she says. “He’s an honours student.” He’s had four more surgeries and some radiation treatment since his first treatment in 2002. His last surgery was in May 2011 and he has follow-up MRIs every two or three months to monitor the tumour site. Jane is thankful how quickly his recovery has been after each surgery. “He’s made brain surgery look very easy.”
Brain tumours in children may present as persistent nausea and vomiting, persistent headache, double vision or ongoing problems with balance. (These symptoms can be caused by other conditions, too.) Patients are usually referred to neurosurgeons through the emergency room; from pediatricians who believe there’s something more serious to a child’s headaches; opthamologists who see something wrong in the child’s eyes; and gastroenterologists (GI) who review a child’s gastrointestinal tract.
Ten per cent of kids have headaches. The important questions doctors will ask are – are the headaches in the morning? Are they associated with vomiting? Do they have an aura (temporary visual, sensory, language or motor disturbance to signal the headache will soon occur)? Is there a family history of headaches? Is their frequency increasing?