A Chilliwack family with a sick teenager has learned hard lessons about health care, discovering gaps they didn’t know were there.
Gaps that have made a very bad situation nearly unbearable.
Life changed for Addison Johnston in June. It starting with light tingling/numbness from his chest down, along with coordination issues.
“He could not get his feet to move properly,” said mom Kristin, who shot a video on her phone showing Addison struggling to get up a flight of stairs. “It’s like the signals for walking and moving were not going from his brain to his legs.”
Over the next four weeks, panicked parents Kristin and Shane took their son to a family doctor, to a walk-in clinic and to the emergency room at Chilliwack Hospital, frantically seeking answers as his symptoms worsened.
Eventually, he could barely walk. At that point, they loaded him into their car and headed for B.C. Children’s Hospital in Vancouver.
And that’s where the first health care gap appeared.
Wheeling him into the Children’s Hospital ER in a wheelchair, the Johnstons were told that Addison, at 17-years-old, was too old to stay.
He was transferred by ambulance to nearby Vancouver General Hospital.
“To hear the ER doctor tell us he’s not eligible to be treated as a youth at 17 was shocking, especially when we were so worried and stressed,” Kristin said, “Addison can’t vote, drink or even drive yet, but the healthcare system considered him to be an adult.
“That meant sharing rooms with other adults, being on his own after visiting hours, signing his own consent forms, all while undergoing invasive and stressful medical treatment.”
Kristin said VGH did make allowances for him being a minor, allowing one person to stay overnights with him.
In short order, Addison was diagnosed with leukemia. The Johnstons learned that VGH is the only BC hospital that provides treatment, and while patients don’t have to stay at the hospital for the duration, they are required to be within a 30 minute radius.
Had he been at Children’s, the Johnstons would have had access to Ronald MacDonald House, a 73-bedroom house that provides lodging and supports for sick kids and families.
Because he was at VGH, they had to rent a place to stay. In Vancouver, that meant $5,295 for a furnished three-bedroom apartment.
“We honestly could not find anything else that would rent month-to-month furnished for less,” Kristin said.
Addison and younger brother Ryland (Grade 7) were both pulled out of their Chilliwack schools, and they’ve been doing work online.
Had Addison been at Children’s he would have been eligible for the Hospital/Homebound Program. His teachers at G.W. Graham would have coordinated with a tutor at Children’s. Kristin said the social worker from the VGH Leukaemia unit contacted Children’s on their behalf to ask if Addison could still access the program, and was told no.
“For Ry, I think it is OK because I can help him with most things, but for Addison it’s huge,” Kristin said. “It’s his graduating year and we are trying to make sure he has all his courses, assessments, etc to graduate on time with his peers. But this has meant that some courses that he wanted to complete this year, such as Pre-Calc 12 and French 12, will not happen.”
Addison’s journey is far from over. He’s awaiting a bone marrow transplant that hopefully happens in November. He’ll need to stay in Vancouver through February so he can be monitored for complications and signs of rejection.
Kristin is hopeful her son will be OK in the end, and she hopes other families can learn from her family’s experiences.
”I wanted to share this story to highlight the gaps for youth in the healthcare system and also to highlight how expensive cancer treatment is,” she said. “People have to travel from all over the province to the most expensive city, and there are very few supports available.
“I have taken a leave from my job, which puts a strain on us financially, but I honestly don’t know how anyone could work full time and care for a child with cancer.”
There is a GoFundMe set up to help Addison’s family. You can at gofundme.com/f/addisons-medical-expense-fund