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Creating a Circle of Hope for Childhood Brain Cancer

Shawns Teamby Sue McKechnie, CKN Advisory Board Member, Childhood Cancer Awareness & Advocacy

It was a week after our son, Shawn, had been diagnosed with a brain tumour. He had undergone invasive surgery at SickKids Hospital and was still unresponsive in intensive care.  It was Mother’s Day weekend and I sat trying to eat lunch, very much in a daze over what had transpired in our lives over the last few weeks. A month earlier, I had no idea that children could have brain tumours and now I understood all too well how quickly a family’s life could change.

 

As I sat feeling very much alone, I realized a crowd of thousands in colourful T-shirts had gathered outside of the hospital. When I inquired with Shawn’s nurse she told me that the event was called Meagan’s Walk. A family had founded the walk in memory of their daughter, Meagan, who had passed away from a brain tumour in 2002.  I was overwhelmed by the mass of people whose lives had been touched by the same type of cancer that now had my son in its clutches. It was a terrifying moment as I thought how huge this epidemic called cancer really is. I felt small in my confidence in Shawn’s ability to beat it, thinking about this little girl Meagan and so many others who hadn’t.

Much bigger than my fear, though, was the realization that we were not alone in our difficult journey. Many other families had been through this very thing and now stood outside in a united front against this unjust, insidious disease.

I vowed to be part of that movement once Shawn was better. And he did get better. In 2006, Shawn’s Team participated in Meagan’s Walk and it was a glorious feeling to hold hands with all those that understood our journey and to look up into the hospital windows sending that message of hope to those battling inside as we once did.

Just after our first Meagan’s Walk, Shawn’s tumour came back and he passed away, just before his third birthday, in October of 2007.

As I watched Shawn deteriorate and finally lose his life to this disease, I felt helpless and angry knowing that brain tumours are the number one cancerous killer of children yet kids continued to be diagnosed year after year.  Many organizations who raise funds for cancer research dedicate only a small portion of those proceeds to treatments aimed specifically at children.  Adult treatments just don’t work the same on children as their ever-growing bodies show adverse side-affects that adults do not.  Didn’t anyone realize this, didn’t anyone care?

My research brought me right back to Meagan’s Walk. Not only did it give me comfort knowing that it was a community of people who I could directly relate to but the organization was dedicated to funding brain tumour research aimed specifically at children within the only laboratory in Canada also dedicated to the study of paediatric brain cancer, housed inside SickKids hospital.

There were lessons to be learned from Shawn’s 18 month fight with cancer and our family’s battle with the grief over losing him. One of those lessons for me was that life is precious and even though Shawn was gone from this world he continues to send me strength.  His message is clear:  there are still children and families struggling and there will continue to be unless we make a united front.

For me, Meagan’s Walk is much more than a 5km walk to raise money for brain tumour research at SickKids, it is a convergence of families who are in the fight of their lives, those that won’t give up their quest despite the loss of their child and all those that support them.

Karen Haas from Brampton understands the power of Meagan’s Walk.  “From the first time we walked the 5km route to SickKids in 2003 and joined hands to hug the hospital, we have been touched by the fact that we’re not alone”. Her son Tobin, now in high school, was two and a half years old when he was diagnosed with his first brain tumour. “Tobin has beaten cancer three times and his zest for life has not been deterred.” Karen, Tobin and the rest of his family walk with both bereaved friends and kids, who like Tobin, are now ambassadors of hope. “It’s about so much more than the actual walk. We are a community”.

There is a loneliness and frustration to childhood cancer for those families that face it and many know the isolation of grief.  On May 10th, 2014 as thousands join hands in one of the world’s largest hugs, creating the circle of hope around SickKids, know that you are not alone and thousands are dedicated to this fight.

To join Meagan’s Walk or for more information go to www.meaganswalk.com.

 


 

 

SueMcKechnieSue McKechnie learned her young son, Shawn had a brain tumour in May of 2006. When he passed away 18 months later after the rollercoaster of diagnosis, treatment, hope and terminal illness, she realized that even though he was gone from this world, he continued to send her courage from another.  The message was clear – get out there and help other families sharing this journey. Since then Sue has written the book ‘A Sippy Cup of Chemo; A Family’s Journey Through Childhood Cancer’ hoping to spread the message to other bereaved families that they are not alone. “It’s wonderful to talk to other parents who truly understand – the grief, the guilt and all the myriad of emotions you face. We didn’t choose to be part of this group, nor would we wish it upon anyone else but here we are and we need to support each other.”  All the proceeds from her book are donated to Meagan’s Walk; benefitting brain tumour research at SickKids Hospital, a charitable organization whose committee Sue is a member of.  Sue continues to advocate for funding and awareness of childhood cancer through blogging, speaking engagements and her work through Meagan’s Walk.

 


 

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One Response to Creating a Circle of Hope for Childhood Brain Cancer

  1. sheila mccarthy says:

    No matter how often we read or hear about or learn from a friend of another cancer diagnosis, we are surprised. We are shocked and in disbelief and wonder WHY? This fresh feeling each and every single time helps us I suppose. It helps us start fighting anew each and every single time. With those beginnings comes a very strong feeling of hope that this time it will be better, this time we will win and this time our children will walk those 5 kms. for MEAGAN and for all of our children and husbands and mothers long after we are too old to do it!
    I think we are supposed to be surprised by a cancer diagnosis because it keeps us sharp and aware and vigilant about working towards a cure. I will never take cancer for granted.
    Through cancer we learn how to keep going. I don’t think there was a single day during my husbands two year battle where we weren’t absolutely in the moment. There was no yesterday , no tomorrow. It was a beautiful gift I will always treasure.

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