Slightly confused and uncomfortable

So if I am going to be honest, there are two confusing human related behaviours that I have become conscious of since Aleksei was diagnosed with Ewing’s Sarcoma. The first is the out of sight, out of mind way of thinking. I know I have written about this before but for the benefit of my readers who are just learning the brutal ins and outs of childhood cancer or are already in the throws of it and are wondering where some people in their lives have gone, I must rehash. That and it is a really good segue into the second human related behaviour I can’t help but wonder about.

So long story short, I know, from personal experience that not everyone is particularly interested in getting themselves involved in what is the horror of childhood cancer. I am completely aware that a 12 year old boy diagnosed with cancer is sad and depressing and as a result some people need to escape from its reality. They can keep themselves contained in their own safe little world where their children, who may not be perfectly healthy, at least don’t have cancer!

I have come to terms with that part of having a sick child. I don’t, however, wish that feeling of being deserted at such a time of confusion, fear, vulnerability and sadness on anyone. One thing I know for sure, though is that we are not alone. Many members of my newly extended family which includes beautiful people from all over the world who have had childhood cancer meander into their lives like the so and so it is, tell the same stories of friends they no longer hear from or family members who were able to turn their backs on them. When this happens, we all ask the same questions “how”, “why” or “WTF!”

Watching Aleksei go through surgery, chemo and radiation encouraged change. I changed. And certain relationships changed (read: ended). If someone just couldn’t muster up a simple “thinking of you” email or phone call for weeks, months then I took that as it was nice knowing you, but your life has gone off on a wild ride that I am not interested in going on. Or the real beauty who waited for it all to be over  to then send me a Facebook friend request. A Facebook friend request? Are you kidding me? We were real life, in person friends before, as a matter of fact since Aleksei was ONE year old, then he got cancer, you shamelessly crawled away and now you want to be Facebook friends? Need I say anymore?

So at some point I came to realize that we really only needed the people who stood by us. I questioned myself as to why I would concern myself with those that went away? I know, quite personally thank you, the negative feelings that childhood cancer stirs up. We had no choice but to suck it up, put on our big girl panties/boys boxers, lace up our combat boots and face the facts, but everyone else had a choice to (cue Should I Stay or Should I Go tune here) stay or to go, because it wasn’t their kid. Most stayed and a few chose to go.

From those that decided to go along their merry way, I learned that people either have it or they don’t. Who am I to try to force or lay a guilt trip on someone who can’t deal with what we were going through. I decided that for some people it just made them uncomfortable. And then I decided that those people made me feel uncomfortable too…so I just chose to back away and let them be. And I am at peace with that.

Yeah OK so I am not succeeding at making a long story short…sorry, my blog. So now here we are, we meaning the four of us Minariks, our family and our friends who stood by us, in a very comfortable place. It is a happy place. Aleksei is not experiencing any side effects as a result of surgery, chemo and radiation, his scans continue to read unchanged after being off treatment for 15 months, he attends grade 9 on a fulltime basis at St. Paul’s High School, he is a beast on the ice (scored a hat trick Sunday night), he has friends, friends and more friends and to top it all off he is a really solid guy!

By all accounts we could just close the book on our stint with childhood cancer, only re-opening it for the chapters called It’s 3 month Scanxiety Time. But that is impossible, because I will not diminish what Aleksei went through, what my darling Darah, sweet Alex and so many other children are going through, by suggesting it can all just be forgotten. Nor will I make light of the fact that I have friends whose children have relapsed and they are hoping that a new regimen, a new trial, something will make the damn cancer go away for good this time. Children die from cancer and we can not let those losses be in vain. I also will not turn my back on the many children who WILL BE diagnosed with some form of cancer if a cure is not found.

Now…about that segue…the other confusing human related behaviour that is admittedly…well confusing me now…is the lack of cooperation when it comes to trying to raise awareness of Ewing’s Sarcoma. I try to help raise awareness as the more awareness there is, the more research can be funded putting us one step closer to finding a cure. I work at raising awareness of Ewing’s Sarcoma because I want people to understand that it exists and what the symptoms are. I don’t want parents to ignore growing pains or sports injuries pain, especially if those symptoms become persistent. I simply want people to be aware that there is a possibility those complaints may be caused by something more. I write about Ewing’s Sarcoma, I try to correspond with as many newly diagnosed families as I can and I try to get the message out that they are not alone.

I don’t write this to garner attention, to seek admiration or receive a pat on the back. I toot this horn in honour of all parents who have had a child diagnosed with cancer and the brave, honest souls who stood by them throughout their ordeal. I put this out there to further acknowledge that I have people in my life who have caught on to the need of awareness when it comes to childhood cancer and I am so very thankful for them. But there is room to move and I simply wonder: why won’t more people, HELP US RAISE AWARENESS?

I have been shown that people can ignore the fact that kids get cancer. But why I ask? Is it because the truth hurts? Is it because they have children of their own and this whole paediatric cancer gig just hits too close to home. Are people afraid of posting about a subject such as childhood cancer because it might make their readers feel uncomfortable? OK cause reading complaints about gaining weight, not going to the gym or the fact that someone spilled the milk makes me uncomfortable. When will more people stand up and say enough is enough!?

It is as simple as liking, sharing, commenting, tweeting, pinning, emailing, insta-gramming, tagging, you-tubing, flickring, etc. No matter how the information is shared, it is usually only a matter of making that selection. A post referring to Ewing’s Sarcoma or any type of childhood cancer that is shared somehow will then go out to all the people you connect with and so on. Imagine the amount of people we can reach and the lives we could potentially help save.

As the Care Bears say..

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