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What This Mom Wishes People Knew about Childhood Cancer

SueMcKechnie4by Sue McKechnie, Childhood Cancer Awareness Editor 

 

 

September is Childhood Cancer Awareness Month.

If your child has cancer you don’t need a specific month to remind you. You are always aware, every second of every day you are reminded of the fragility of life. As someone whose family has been so affected by childhood cancer, I want to scream it from the rooftops each and every day to make people aware that it is in fact not rare and even more alarming is the fact that childhood cancer research receives very little funding.

However, as an awareness month, September does bring an opportunity to educate those that have not walked this path, to give them an insight into the realities of the global epidemic that is childhood cancer.

 

Cancer kills more children than AIDS, asthma, diabetes, cystic fibrosis and congenital abnormalities COMBINED.

Every year in North America over 15,000 children are diagnosed with cancer. The number one cause of cancer related death in children is the diagnosis of a brain tumour followed closely by a leukemia diagnosis.

That’s more than an entire classroom full of kids diagnosed with cancer EACH and EVERY DAY.

 

Smiling, bald kids do not represent the reality of childhood cancer WHATSOEVER.

When our son Shawn was first diagnosed with a brain tumour, I shuddered every time an IV was inserted into his little arm. What I quickly learned was that this was the least invasive procedure Shawn would endure in his short 3 years. Chemo and radiation are of course on the list; which included inserting a PICC line into his chest for easy access to a large vein. For radiation it was the daily trips to the treatment unit where he was sedated while wearing a customized mask to ensure the radiation was aimed as accurately as possible.  The daily chemo regimen included us holding him down while spraying the poisonous concoction down his throat which would then cause him to throw up and then feel nauseous and tired all day.

Chemo and radiation aside, his journey with cancer included three major brain surgeries where recovery took months, a tube inserted through his nose down to his stomach so we could supplement his calories, monthly MRI’s which included sedation, multiple visits to multiple doctors and clinics, hours spent in the car and in therapy sessions and months spent in a hospital bed. The list goes on and on.

For us as his parents it meant sleeping wherever and whenever we could, quitting work or working more, missing our other child’s life events, draining our finances, borrowing money and of course worrying – the constant rollercoaster of worry, stress and hope. That list goes on and on as well.

Yes, there were moments where Shawn smiled and we were all happy. Those moments are the ones that we treasure the most. But the reality of a cancer diagnosis for a child brings with it an array of what seem like torturous treatments, which unfortunately are the lesser of two evils when it comes to the alternative.

That alternative for us was by far the reality of childhood cancer that we will never forget. After there was nothing more that could be done, we watched helplessly as Shawn lost each one of his abilities in the last few months of his life. Gone was the ability to walk and then the ability to use his arms. Slowly he lost his ability to talk, to move and even eventually to blink and swallow. Then of course his ability to breathe which took his life as we held him in our arms.

Yes, you will see smiling, bald children who are battling cancer because these little people are incredibly brave but a camera lens can only capture so much. The above is the unfortunate reality that too many families face each day.

 

What the term ‘CURED’ really means

Hearing that a child is cured of their cancer is a cause for celebration indeed. The misconception when it comes to childhood cancer is that the term ‘cured’ means healthy.  What many do not realize is that the treatments for childhood cancers are invasive and often toxic in nature leaving almost 75% of childhood cancer survivors with chronic illness, cognitive or physical impairment, infertility and at high risk of being diagnosed with a secondary cancer later in life.

 

Childhood cancer research is grossly underfunded

Only 3-5% of North America’s cancer research dollars go to research specifically for paediatric cancers. If you crunch the numbers, it seems to make sense; children are only children for 18 years and adulthood can span well over 50 years therefore more adults receive a cancer diagnosis than children. Add to that the fact that treating children who have cancer, with their growing minds and bodies, is much more complicated than treating an adult. Pharmaceutical companies don’t see the profit in creating these complex treatments needed for such a small percentage of the population.

But if you look at it another way, it doesn’t make sense at all.

Children who have cancer have done nothing to encourage their cancer diagnosis nor can they do anything to prevent it. A cancer diagnosis for a child is random and unknown.

Our children are our future and for many of us who are parents, are the reason for our existence. They are our most treasured asset and most vulnerable victims. The average age of death for a child with cancer is 8, causing not only the child and their family to lose over 65 years of life, but the community to lose out on the years they would have contributed as well.

The death of a child is the most traumatic experience a family might face leaving them emotionally and financially fragile. This death can be felt by the immediate family, extended family and even within the child’s community.

 

Take a moment to think about this:

The equivalent of a classroom full of children are diagnosed with cancer each and every day.

What it would be like to have your child diagnosed with cancer?

What it would be like to hold your dying child knowing that there was no treatment available to help them?

Only a small percentage of cancer funding reaches childhood cancer research.

 

September is Childhood Cancer Awareness Month and you are now aware.

 

Want to know what you can do to help? Read:  Childhood Cancer:  5 ways you can make a difference

 


 

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; benefiting 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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5 Responses to What This Mom Wishes People Knew about Childhood Cancer

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