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Chilliwack parents discover gaps in health care as teenage son battles leukemia

Though heB次元官网网址檚 17-years-old, Addison Johnston couldnB次元官网网址檛 access treatment at B.C. ChildrenB次元官网网址檚 Hospital

A Chilliwack family with a sick teenager has learned hard lessons about health care, discovering gaps they didnB次元官网网址檛 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.

B次元官网网址淗e could not get his feet to move properly,B次元官网网址 said mom Kristin, who shot a video on her phone showing Addison struggling to get up a flight of stairs. B次元官网网址淚tB次元官网网址檚 like the signals for walking and moving were not going from his brain to his legs.B次元官网网址

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. ChildrenB次元官网网址檚 Hospital in Vancouver.

And thatB次元官网网址檚 where the first health care gap appeared.

Wheeling him into the ChildrenB次元官网网址檚 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.

B次元官网网址淭o hear the ER doctor tell us heB次元官网网址檚 not eligible to be treated as a youth at 17 was shocking, especially when we were so worried and stressed,B次元官网网址 Kristin said, B次元官网网址淎ddison canB次元官网网址檛 vote, drink or even drive yet, but the healthcare system considered him to be an adult.

B次元官网网址淭hat 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.B次元官网网址

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 donB次元官网网址檛 have to stay at the hospital for the duration, they are required to be within a 30 minute radius.

Had he been at ChildrenB次元官网网址檚, 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.

B次元官网网址淲e honestly could not find anything else that would rent month-to-month furnished for less,B次元官网网址 Kristin said.

Addison and younger brother Ryland (Grade 7) were both pulled out of their Chilliwack schools, and theyB次元官网网址檝e been doing work online.

Had Addison been at ChildrenB次元官网网址檚 he would have been eligible for the Hospital/Homebound Program. His teachers at G.W. Graham would have coordinated with a tutor at ChildrenB次元官网网址檚. Kristin said the social worker from the VGH Leukaemia unit contacted ChildrenB次元官网网址檚 on their behalf to ask if Addison could still access the program, and was told no.

B次元官网网址淔or Ry, I think it is OK because I can help him with most things, but for Addison itB次元官网网址檚 huge,B次元官网网址 Kristin said. B次元官网网址淚tB次元官网网址檚 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.B次元官网网址

AddisonB次元官网网址檚 journey is far from over. HeB次元官网网址檚 awaiting a bone marrow transplant that hopefully happens in November. HeB次元官网网址檒l 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 familyB次元官网网址檚 experiences.

B次元官网网址滻 wanted to share this story to highlight the gaps for youth in the healthcare system and also to highlight how expensive cancer treatment is,B次元官网网址 she said. B次元官网网址淧eople have to travel from all over the province to the most expensive city, and there are very few supports available.

B次元官网网址淚 have taken a leave from my job, which puts a strain on us financially, but I honestly donB次元官网网址檛 know how anyone could work full time and care for a child with cancer.B次元官网网址

There is a GoFundMe set up to help AddisonB次元官网网址檚 family. You can at



eric.welsh@theprogress.com

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Eric Welsh

About the Author: Eric Welsh

I joined the Chilliwack Progress in 2007, originally hired as a sports reporter.
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