Monday, February 29, 2016

Rare Disease Day


When Jaxon was diagnosed with Acute Lymphoblastic Leukemia almost two years ago ... it was the darkest day of our lives. Paul and I mourned the news, grieving that there was no easy answer to our questions of "why?" and "how?" and "what if?" and "what now?". Not long after the news of his diagnosis, I was struck by a thought of gratitude. We had learned WHAT was making him so very sick and we knew that there was a thorough and highly effective strategy for treatment. The reason the diagnosis of Jaxon's type of Leukemia has gone from 100% mortality rate to 85% expected long-term survival is because of research. Childhood cancer (collectively) is not rare, though many sub-types are extremely rare. Although A.L.L. has become the most optimistic of childhood cancer diagnoses, (some call it "the good one" - no. such. thing!), cancer in general is the reason for the most disease-related deaths of Canadian children. Lots of kids get A.L.L. so there are lots of opportunities to study it and to improve treatment for it. But there is still so much to learn and improve for the treatment of all childhood cancers. Due to low numbers of kids getting rare types of cancer - funding for research is minimal.
On Jaxon's diagnosis day I thought of my friend who had been taking her young daughter to multiple specialists for several years, trying to get an explanation for her frightening and mysterious symptoms. Their family was living under the shadow of uncertainty for an agonizing length of time. Although we were facing a lengthy recovery time for Jaxon with the potential for complications at any time, I remember feeling grateful that AT LEAST we knew what this was and somebody knew what to do to help. Not every parent in similar situations has this in their favour.
Some would say that cancer is every parent's worst nightmare. I don't fully agree. Yes, cancer is heinous. There is absolutely no denying or minimizing or sugar-coating it. Diagnosis and treatment of Leukemia has been OUR family's most difficult struggle. For many of my friends - more rare and aggressive and recurring pediatric cancers have brought devastating physical and emotional effects and death - painful beyond comprehension! For others, a rare disease causes unrelenting symptoms for which there is little to no relief. The prospect of a shortened life expectancy, endless watchfulness or progressive debilitation is excruciating for the families who love a child with a rare disease.
Whether it's a common/well-known disease or a rare one, a chronic illness or an acute crisis - I believe the worst prospect any parent faces is that of losing their child, or watching their child suffer or having to cope with significant difficulties and not being able to do anything to relieve the burden. It could be Leukemia or Ewing Sarcoma or a hundred other sub-types of pediatric cancer or a traumatic brain injury or Wiskott-Aldrich Syndrome or Spinal Muscular Atrophy or Eosinophilic Esophagitis or severe allergies/asthma/eczema or Epilepsy or Congenital Heart Defect or Opitz Syndrome or Denys-Drash Syndrome or Hypophosphatasia ... or ... or ... or ...
The severity of one experience does not diminish the impact of another illness or injury or difficulty faced by another family.
My friend said to me the other day "There's no such thing as 'other people's kids.'" It could happen to anyone. We all need the support of others. I am honoured to journey with families like these in their most difficult trials, just as they and others have done for my family. I raise my voice to support them through awareness to bring about more meaningful research toward better treatments and cures. I will take them a meal or a cup of coffee. I will give blood. I will say "yes" whenever possible when asked to donate money to support a family in need or a local children's health initiative. I will ask others to do the same.

1 comment:

  1. You have a wonderful ability to express yourself with pen and paper. (Or computer and keyboard, as the case may be.) very heartfelt and eye-opening. Thank you.

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