I know September is more than half over and I am just posting this now. However, if you follow me on Facebook you know I have been plugging it there too. I am not sure if there is anyone who has had a child with cancer that can then walk away from the cancer community and just go on with their lives? Maybe they exist but that has not been our experience. Joel’s cancer was something that stopped our whole family in our tracks. Had we been on a boat, that boat did a 180 so fast we probably would have hit the water. We thought our lives were headed in one direction and in the blink of an eye we were headed down a new road.
For the most part we have weathered the storm, yet the winds still blow. Joel sees 4 therapists a week, another one every 3 weeks and also takes therapeutic riding lessons. Joel’s 5-year-old sister has surpassed him in so many ways and this September as we started back into the rhythm of school life here at home it was glaringly obvious that she has now surpassed him scholastically too. That was hard to take. Don’t misunderstand Joel is as tough as they come and I am confident with much work he will succeed but it will take a lot of hard work (on both are parts). There are also neuro-psych evaluations, routine MRI’s, and blood-work that remind us of where we have come from and where we continue to go.
September has been even tougher on our childhood cancer community that we are a part of, there have been trips to the ICU, unplanned hospital stays, pain, counts not coming back up, chemos, and hardest of all, Bryce went home to heaven. We are told that cancer in children is rare and that our survival rates are improving, but it is not rare enough, and one child dying is too many. Cancer is the biggest killer of our children when it comes to childhood diseases, killing more children than AIDS, asthma, diabetes, cystic fibrosis, and congenital anomalies, combined. Even though survival rates are improving we are still losing 1/4 of the children diagnosed with cancer.
Having had a child with cancer obviously makes me an advocate. I think by nature I am a pacifist but when it comes to cancer I am not. My Dad had cancer, I have had adult friends lose their battle to cancer so I am all for cancer research for everyone, but there is so little funding going to childhood research that, that is where my heart is. People give to breast cancer, they have a fantastic campaign and so they should, but we need to do the same for Childhood Cancer. We are told that Pancreas cancer is the deadliest cancer there is. Yes, it is one of the worst with a survival rate around 4%. But what about Diffuse Intrinsic Pontine Glioma, have you even ever heard of it before? Well, it may not be as common a cancer as some, but, it is a very real type of brain cancer affecting children, the median survival rate is 9 months. No percentages here, just the amount of time you may have before your precious little one is taken. ”DIPG slowly robs children of their motor functions resulting in partial paralysis, loss of voice and sight and finally ending with an inability to eat and breathe. It is both heart wrenching and painful as they are fully aware of their decline often until their last day.”*
It is tough to read, and tough to write, and a million times harder to live but it is the reality of childhood cancer. It is still September and so that means it is still Childhood Cancer Awareness Month and there are countless ways to help.
- don’t say is there anything I can do, or call me if you need anything. Guaranteed we have no idea what you can or can’t do for us so we aren’t going to ask.
- do offer to babysit
- make a meal and bring it over.
- if you like to garden volunteer to do some yard work
- give a gas card, grocery card etc.
- if you are a mechanic offer your services.
- if you can clean, I can promise you families going through cancer can’t remember when the last time the tub was scrubbed
- do something special with the siblings
- drop off a gift, flowers, chocolate anything, it really doesn’t matter if we even like flowers the fact that someone is thinking about us means so much.
- if your healthy visit us at home or the hospital
- don’t walk away from us, we are the same people, yes our kid has cancer but we still love and care about you, if your child falls and breaks their arm I am still going to think that sucks. If your kid wins a trophy I am still going to cheer for them.
- if you have money to give, give it
- organize a fundraiser on their behalf
If you don’t know anyone who is going through this fight, or maybe you are kicking yourself because you missed an opportunity there are still so many ways to help.
Candelighters is a local organization that helps families dealing with Childhood Cancer.
You can support the Sears Great Canadian Run the relay to end Kid’s Cancer (great video made by Cole’s wonderful Momma Lisa, Joel’s in it too)!
“AMERICAN CANCER SOCIETY: In 2010 directed $0.01 (a penny) to childhood cancer research for every dollar of public support. So if you raised $1000 dollars, $10 bucks would go to helping kids. LEUKEMIA & LYMPHOMA SOCIETY: directed $0.02 to childhood cancer research for every dollar of public support.”** While these organizations are great if you want your dollars to help children there are other organizations to give to.
These are just a few a google search of childhood cancer organizations will lead you to more organizations that are helping children with cancer. Please share links in the comments if I missed your favourite Childhood Cancer organization!! Spread the news about Childhood Cancer Awareness Month!