National Kids Cancer Ride

Day 6 – Reality check (Regina to Glenboro ,Manitoba)

The Ugly Truth & a Reality check

Well the rain came down in wooshes today. Hard on the riders as they battle the cold, wind & rain. Tough on the bodies….Yet they don’t complain.  Some of them are starting to get sore assess & some are getting sores on their privates.  Even though I am not cycling this year, it still got me thinking of when my son was palliative & had terrible bed sores. This is not an analogy but rather a segway into what some kids endure. You have a lot of time to think when out on the road & I started reminiscing of the way Cancer affected my sons body. It was horrible & I have never been able to get the images out of my mind. Simon’s vibrant little soul wasted away slowly. He became so skinny. He lost the fat on his body & became emaciated. He developed a horrible rash all over his body that itched & looked like the measles. He became bald…& then went slightly cross eyed. He couldn’t walk. & then he couldn’t talk, or eat, or even swallow. We had to moisten his mouth so he wouldn’t suffer with his throat. We had to keep repositioning his body because the sores were so bad & he winced every time we moved him even though he was so drugged up. He couldn’t tell us how painful it was as the cancer took his voice so we had to gauge things by the way he winced or cried. He didn’t look like Simon anymore & we had to stop all visitation because it all became so ugly. Those images will never leave me. They haunt me often. This is why I ride & volunteer. I don’t ever want you to ever see such a thing happen with your child!!!
After Simon died, it was really hard to relate to people for a while as I could never be able to explain to them how bad it really was.  I didn’t want them to know at first because it would crush their souls if I told them….so I just wore it inside.  It was also very hard to see people for the first time after he died (& sometimes still is 5 yrs later) because they didn’t know what to say to me & it was awkward for them too.  But now that I am regaining some inner strength, I am now able to change all this.
I live in a very small community of about 2500 people in Lunenburg, Nova Scotia. We all know each other & one of the big reasons I choose to volunteer (& ride in the past) is that I want to show others in my community that people like me can be a big part of change with grace.  I know I can be instrumental in raising awareness & creating hope for other families in knowing that change IS happening (even if slow)…there is hope for your child….but you cannot have change without effort.  I have been volunteering (& cycling) with this organization for 4 years now. I truly hope that people will stand up & take notice & maybe even say “if she can do something, so can I”. People truly do not realize how big kids cancer is.  I know I say this a lot but we are talking 1 in every 285 kids in Canada are affected.  We really, really do not know whose child will be next.  it could easily be yours so do not be so naive in thinking that it can’t be yours next. It could be easily. (I sure hope not).  Would you not want to know that there is hope or a cure for your child if they were afflicted?
Part of my personal mandate here is to help the families I meet along the way dealing with their children’s cancer by letting them know that people like me really do care & they are not alone in their journeys! We as a collective NKCR team all care & we are raising a ton of money to develop more drugs & protocols that will save their child. If I can save even 1 child, then my efforts (& the riders sore asses) will be all worth it!
Just sayin…
(Simon before & after cancer devastated his body)