SUBMITTED PHOTO - Remington Shea smiles Wednesday from his bed in the Alberta Children's Hospital.
Edit: We had Remington’s last name wrong in the original version of this story. It has now been corrected.
Five-year-old Remington Aman lies in a bed at the Alberta Children’s Hospital in Calgary, unable to speak due to the tracheotomy performed 11 days ago to relieve the pressure caused by a massive tumour on his neck.
His grandmother and legal guardian, Wendy Shea, is the only other family member in the room. But Wendy has her own health problems, trying to schedule surgery through the Tom Baker Cancer Centre a few kilometres away for when Remington is doing a bit better with his own newly-diagnosed cancer.
Their lives have changed dramatically in the past two weeks, and they’re navigating the peril amidst a pandemic that puts people like cancer patients at increased risk should they become infected with the new coronavirus.
“Being here is every parent’s worst nightmare, but being here alone and unsupported through this COVID makes it… you just feel so isolated,” says Wendy via cellphone from Remington’s bedside. “Right now his is way more important to get dealt with.”
It all started in March when a lump started growing on Remington’s neck. The mumps, doctors said. But antibiotics did nothing and by April 25 his lips were turning blue, the tumour so large it was impeding his ability to breathe.
“From his ear all the way to his mouth was one great big round ball,” says Wendy. “It pushed his airway and his larynx over, so he had very little airway left.”
He was airlifted from Medicine Hat to Calgary where the diagnosis of Burkitt lymphoma came only after his tracheotomy and medically-induced coma.
“He’s come a long way from not knowing he was sick, to all of a sudden he’s got cancer, first round of chemo, five days after the diagnosis,” says his aunt, Angel Shea. “Everything’s just been crazy.”
Remington’s parents gave up his custody and Angel lovingly describes him as “our village child,” noting the parents, aunts and uncles are all scared by the diagnosis.
Fortunately, the early chemotherapy is doing its job, shrinking the mass by 70 per cent as of Wednesday. But he’s probably got six months in hospital, and a longer road to recovery if he is to match odds that are good for him to survive.
“They feel the chemo we’re starting (Thursday) should get rid of the rest of his tumour, then we’re dealing with getting it all out of his blood,” says Wendy. “This form has a 99 per cent remission rate in three months, and an 80 per cent cure rate in six months.”
Normally, visitors to the oncology department at the children’s hospital would have to sign in saying they are healthy and have no symptoms that would put patients in the unit at risk. But with COVID-19 precautions and the fact the disease is sometimes asymptomatic for two weeks, even that’s not good enough.
Hospital officials told the News that among increased safeguards, only one visitor per patient is allowed at a time. Every person entering the hospital has their temperature taken.
Wendy says when Angel or any other family member comes to relieve her, they have to do the switch in the hospital parking lot. But it’s a lonely time on isolation in the cancer ward even without COVID protocols.
“It’s lonely, it’s very stressful because you have nobody… I’ve been very fortunate for the most part, I’ve gotten really good nurses,” says Wendy. “But realistically you have nobody to sound off to unless you make a phone call.”
The community is stepping up to let Remington know they’ve got his back. Calgary’s Ronald McDonald House is unable to take in new families during the pandemic, so a Medicine Hat doctor is letting them use his condominium in Calgary. He normally works in both Medicine Hat and Calgary but is only working in the Gas City right now due to safety measures.
A GoFundMe page – Coming Together for Remi – raised $5,200 as of Thursday morning. That happened at the suggestion of one of his school teachers. Any money not needed by the family will be donated to the children’s hospital.
“It’s been so heartwarming to see everybody come together,” says Angel. “My mom and I have spent a lot of crying moments on the phone together, just being so thankful for everything everybody’s doing for him. It’s just absolutely incredible.”
Wendy doesn’t think Remington really understands the gravity of what’s happened. But he sat up and smiled for photos Wednesday, mouthing words like “love you” and making a heart with his hands.
He’s got resilience in spades.
