Childhood Cancer: Facing Survival

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Childhood Cancer Survivor: Hugh

September is Childhood Cancer awareness month and I wanted to take the opportunity to help raise awareness of the struggle kids with cancer and their families face.

One of my dear friends, Kate, has gone through the unimaginable with her son Hugh. He was diagnosed with brain cancer at 4 ½ years of age. When most of us are concerned about kindergarten and playdates she was concerned about whether her son would live to see his next birthday. Here is her raw story of survival and the caveats that come with it:

Cured… with no warranties”. This is what the doctor told us in our last visit. Hearing this news is like winning the lottery for a kid with cancer.

Childhood Cancer Survivor Hugh

Hugh

Hugh was diagnosed in May of 2011 and we were only given a 30% chance of survival. A 70% chance he was not going to make it.

I cannot remember the early days; I think I have blocked them out.  I remember mountains of toys and gifts; I remember grieving the loss of my healthy child.  Everyone was so horrified by the news, the only thing they knew to do was to buy a toy.  The only thing we wanted to do was survive.

Three years later, (after 3 brain surgeries in 45 days, followed by 10 rounds of chemo and 33 rounds of radiation), we heard the word cured and all we could think was, WE WON!

Then we looked again:

  • 80% of survivors suffer chronic health issues (like vision, hearing and/or speech problems, infertility, psycho-social issues, cardiovascular, pulmonary, gastrointestinal, renal, musculoskeletal, neurological, and/or endocrine conditions, and/or secondary cancers.)
  • 14% die 6-30 years after diagnosis
  • 34% die within 30 years

I feel guilty being sad about this. In the cancer world we won, we really did, we didn’t want to be greedy. But I would be lying if I didn’t say it makes me sad. I am an optimistic person by nature but winning or cured sounds like something that should be better than this. I want to scream from a mountain top that this is not what CURED means! It cannot. But it is.

Everyone tells me I’m strong. I am not. I’m just surviving. I feel survivors guilt when I talk to others and I fear I’m not doing everything I can to help my kid.

Hugh has brain damage from the radiation which means the road through school is going to be difficult.  Everyone says ‘don’t worry’ and I feel as though they are telling me to ‘stop complaining, he won’.

I am a Mom. I was born to worry. I want to expect more. I want more research and more awareness.

“My favourite activities are bike riding, playing Lego and going swimming.” – Hugh

Kids with cancer and parents of those children have such a hard time advocating for themselves. Kids are busy being kids and parents are suffering from PTSD and doing everything they can to protect their kids.  We need our neighbours and friends to help raise awareness.

Awareness leads to funding, funding to research, and research will make CURE become a reality. And NOT the reality that leaves 80% of the kids with chronic health issues or just delayed death.

Our friends and families are the only way I can say we are standing here today.

Kate and her husband Dave work tirelessly with Hugh (7) and his sister Sam (6) to help fundraise for Sick Kids Hospital in Toronto. The kids ask for birthday money instead of gifts so they can donate it to help fund more research.

How to Help

If you are wondering what you can do to help, here are a couple of great suggestions.

If you are the organizing kind you can get your school involved:

  • POGO organizes a sidewalk chalk drawing event. Have your school draw messages of hope around the school and send pictures to POGO.
  • In May, Meagan’s Walk organizes a school hug, the kids surround the school and link arms. Each child raises $2 towards Meagan’s Walk.
  • Organize a blood donation drive.

If you would like to donate directly to Sick Kids Hospital you can do so here, or donate to your local children’s hospital.

St. Baldrick’s is also a great organization that raises funds for childhood cancer research and you can participate either by supporting someone who is shaving their head for cancer or by being a shavee and raising funds.

Like Kate said, awareness leads to funding, funding to research and research to a cure. Even just talking about it and sharing Kate’s story will help make their world just a little bit brighter.

A heartfelt thank you,
Sarah

 

 

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Comments

  1. Jag says

    People don’t know what to do or say. they have a tendency to make parents feel guilty for having fears and doubts and say things like “think positive” as if you have not been! I have been going thru cancer with my child for 13 years and I have run the gamut of emotions through his many treatments. you are doing wonderful and you are a great support for your child.

    FYI I am not sure if he has done proton therapy …. But it is particularly successful on children and helpful because it targets the tumor and does not damage surrounding tissue which is very important for growing children..

    I have learned that you need to be an advocate for yourself. get second opinions and seek out all options. Educate yourself.

  2. Kate says

    I’m Hugh’s Mom. He has not done proton therapy (we will keep that in mind). But right now we are holding the course. I’m so sorry to hear about your 13 year journey (I still maintain we aren’t done until no kid / parent ever has to walk this road). Thanks for the support and the great advice – I have to omit having other parents who ‘get it’ is really helpful.

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