Boy with cancer’s chemo appointment cancelled amid Stollery space shortage
Having a kid with cancer is already a parent’s worst nightmare. An Edmonton family is dealing with the added stress of being turned away from their scheduled chemotherapy session and sent home.
“Really, really disheartening, really frustrating and really stressful,” said Erica Thomas about their experience this week at the Stollery Children’s Hospital.
For patients who knows how the process works, it’s also frustrating and scary.
“My world (was) turned upside down,” said 11-year-old Ben Thomas, who is dealing with a relapse of his cancer.
Ben has been through the cancer treatment process before and knows what to expect: “The first time around we never, I don’t think we ever, waited around for a bed.”
Ben was first diagnosed 5.5 years ago with nephroblastoma, also known as Wilms tumor — a kidney cancer that primarily affects children under the age of five, that can spread to other parts of the body.
Ben successfully battled the cancer and was considered to be in remission until a relapse was found in his right lung.
His mom Erica said that makes him a high-risk patient that needs to stay on track with his chemotherapy treatments.
He receives his chemo every three weeks at the Stollery Children’s Hospital and it’s a three-day inpatient process each time, where he gets a different type of chemotherapy on each day.
Chemo treatments are carefully scheduled: too often and a patient’s depleted white blood cell count doesn’t have time to recover, putting them at risk of infection and other health issues because they essentially have no immune system — but having chemo too far apart comes with the risk of it not being effective.
Ben’s treatments are all carefully scheduled to align with other tests, procedures and meetings with specialists.
“They’re doing two rounds of this pretty high-dose chemo to see how his tumours — his four tumours in his right lung — how those will react,” Erica explained.
“After that they’ll do a CT scan and then meet with the tumour board to discuss what the next steps are — because unfortunately with relapses, it’s not a clear-cut path. It’s a little bit of trial-and-error.
That adventure took an unexpected twist when the Thomas family went to the Edmonton children’s hospital on Wednesday for their second round of treatment since the relapse was discovered.
“We were told that there are no beds in inpatient and that Ben is actually number four on the list waiting for a bed,” his mom of four said.
They weren’t alone. Erica overheard another child being told they were fifth in line.
“We know that kid lives about four hours away and so they had travelled in for chemo and were sent away.”
The Thomas family was also sent away.
The mother asked if there was anywhere else they could go, if the chemo could be an outpatient procedure, but no alternatives were available.
Erica said the doctors and nurses at the Stollery appeared to be as much at a loss as the family was.
“The staff there were incredible,” Erica said. “You could see (they were) super frustrated and stressed about the situation as well.
Global News reached out to Alberta Health Services about the situation but did not hear back as of publishing.
Overcrowding and a lack of beds is nothing new at the hospital-within-a-hospital: The Stollery physically exists inside part of the University of Alberta Hospital.
The current Stollery Children’s Hospital in Edmonton has 236 bed and is the second largest children’s hospital in Canada. It has among the highest inpatient volumes of any children’s hospital in Canada, according to the province.
While her son’s relapse makes his case more urgent than first-time cancer cases, Erica said she feels guilty even thinking he should be bumped ahead of other kids because every case involving a child feels urgent.
“Doctor shouldn’t be put in a position where they have to figure out who needs it more. There should be space,” she said.
Erica said their experience highlights the urgent need for growth — for the Stollery to move into its own standalone building.
“It’s something we absolutely need in northern Alberta and in Edmonton, something also needs to happen immediately to address the shortage of beds so that kids like Ben can get the chemo they need on the timeline they need.”
With such proximity to the rest of the U of A Hospital, kids are exposed to scary things like adult trauma cases, Erica said, which adds to her argument the Stollery needs to move to a kids-only space.
“I just get scared when I go to that hospital,” Ben said.
The current Stollery Children’s Hospital opened in 2001 and sees about 300,000 children per year. The hospital sees 55,000 emergency room visits each year and performs about 12,000 surgeries.
The hospital serves families in a geographical area of more than 500,000 square kilometres, stretching from Red Deer to Alberta’s border with the Northwest Territories.
Nearly 40 per cent of the patients at the Stollery come from outside of Edmonton.
“The talent in that hospital are incredible — whether it’s the doctors, the nurses, the child-life specialists, the psychologists, everybody, even the lady that brings him food,” Erica said.
The 2024 provincial budget allocated $20 million over three years to advance plans for a stand-alone Stollery that would offer more beds, larger clinical spaces, more private rooms and dedicated areas for children and their families — but there is no timeline for when the hospital will actually be built.
“There have been a lot of promises, but not a commitment yet. We need to know where that hospital is going to go. We need to have a commitment from the government that we’re actually gonna get it built and we need a shovel in the ground,” Erica said.
In addition to the need to follow a schedule for the sake of his health, the mother also noted an important, perhaps overlooked aspect: friendship with others going through the same journey.
“It seems trivial but for kids, the little pieces of joy are when they meet a friend in there,” the mom said, adding Ben has made a friend who is on the same treatment schedule.
“They were going to play video games and have movie nights and watch the ball game together. So Ben got a chance to say hi to him, he was in a room and then we had to leave — which made Ben even that much more upset.”
Routine is also important, the family said.
Ben has some PTSD from his first battle with cancer and having to say goodbye to his siblings and mentally prepare to enter the hospital for three days — only to return home hours later without treatment — has upset the 11-year-old.
“Every time I’m on campus at the Stollery, I always get the heebie-jeebies. And every time that I walk down that hallway, it brings back memories,” Ben said.
Erica said on Thursday afternoon, she received an update from the Stollery Ben would be admitted Thursday evening.
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