A Chilliwack family with a sick teenager has learned hard lessons about health care, discovering gaps they didn乌鸦传媒檛 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.
乌鸦传媒淗e could not get his feet to move properly,乌鸦传媒� said mom Kristin, who shot a video on her phone showing Addison struggling to get up a flight of stairs. 乌鸦传媒淚t乌鸦传媒檚 like the signals for walking and moving were not going from his brain to his legs.乌鸦传媒�
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乌鸦传媒檚 Hospital in Vancouver.
And that乌鸦传媒檚 where the first health care gap appeared.
Wheeling him into the Children乌鸦传媒檚 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.
乌鸦传媒淭o hear the ER doctor tell us he乌鸦传媒檚 not eligible to be treated as a youth at 17 was shocking, especially when we were so worried and stressed,乌鸦传媒� Kristin said, 乌鸦传媒淎ddison can乌鸦传媒檛 vote, drink or even drive yet, but the healthcare system considered him to be an adult.
乌鸦传媒淭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.乌鸦传媒�
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乌鸦传媒檛 have to stay at the hospital for the duration, they are required to be within a 30 minute radius.
Had he been at Children乌鸦传媒檚, 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.
乌鸦传媒淲e honestly could not find anything else that would rent month-to-month furnished for less,乌鸦传媒� Kristin said.
Addison and younger brother Ryland (Grade 7) were both pulled out of their Chilliwack schools, and they乌鸦传媒檝e been doing work online.
Had Addison been at Children乌鸦传媒檚 he would have been eligible for the Hospital/Homebound Program. His teachers at G.W. Graham would have coordinated with a tutor at Children乌鸦传媒檚. Kristin said the social worker from the VGH Leukaemia unit contacted Children乌鸦传媒檚 on their behalf to ask if Addison could still access the program, and was told no.
乌鸦传媒淔or Ry, I think it is OK because I can help him with most things, but for Addison it乌鸦传媒檚 huge,乌鸦传媒� Kristin said. 乌鸦传媒淚t乌鸦传媒檚 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.乌鸦传媒�
Addison乌鸦传媒檚 journey is far from over. He乌鸦传媒檚 awaiting a bone marrow transplant that hopefully happens in November. He乌鸦传媒檒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 family乌鸦传媒檚 experiences.
乌鸦传媒滻 wanted to share this story to highlight the gaps for youth in the healthcare system and also to highlight how expensive cancer treatment is,乌鸦传媒� she said. 乌鸦传媒淧eople have to travel from all over the province to the most expensive city, and there are very few supports available.
乌鸦传媒淚 have taken a leave from my job, which puts a strain on us financially, but I honestly don乌鸦传媒檛 know how anyone could work full time and care for a child with cancer.乌鸦传媒�
There is a GoFundMe set up to help Addison乌鸦传媒檚 family. You can at
eric.welsh@theprogress.com
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