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Tag Archives: pediatric cancer

The Gift of Cancer

MarkMeyersby Mark Myers, Childhood Cancer Advocate, Bereaved Parent

 

My grandmother had chutzpah. Like many children of the depression, she hoarded sugar and ketchup packets from every restaurant trip and we found boxes full of them when we cleaned out her home. She clipped coupons and saved every dime she could like a miser afraid they would run out. But she also gave the best gifts.

 

Before her health declined she was at the mall with her retirement community when she noticed a queue forming with a Denver Broncos banner at the front. Knowing that I loved the team, she stooped over extra low, assumed a meager posture and got in line. She began talking to the people in front of her – evoking sympathy from each until they allowed her to cut her way to the front where she stood in front of John Elway who was signing autographs. There she wove a story about her little grandson who loved the Broncos but lived too far away to get to a game. She left with a very special signed photograph.

 

I have a mental picture of her clicking her heels when she got out of sight and I’m sure she never mentioned that her little grandson was a senior in college. I love that gift – not because of the cost. Rather, I love it because of the story behind it and the fact that it is uniquely mine.

 

What is the best gift you ever received?

 

Since you are on this website, I have to assume you have unwrapped cancer at some point in your life and I am sorry. That is a gift we all wish we could have returned. It comes with no receipt or exchange policy. No, like the gameshow says, once you buy this prize it is yours to keep.

 

I sat in the dreaded hospital consulting room on April 9, 2014 where a doctor told me that my youngest daughter, Kylie had metastatic Ewing’s Sarcoma and a poor prognosis. Oh, how I wished for a receipt. During the ten months she fought, I looked for any way I could to give that gift back. But no one would take it. She died on February 13, 2015. Some gifts are for keeps.

 

Fortunately, not all childhood cancer stories end like mine. Many children survive, but the treatment is brutal. I remember the pain, mouth sores, and how sick she got from chemo – to the point that she had to have a stomach tube put in for nourishment. It was an awful time watching her suffer.

 

But there were good times along the way and the canvas of cancer intensifies the contrasting colors of joy.

 

Some choose to be private about their battle with cancer and I respect that – everyone has to fight their own way. We chose to be public and use social media to encourage our patient. At twelve, Kylie was already an accomplished actress and loved Broadway. When word of her cancer spread, there was this amazing web of connections that came out of the woodwork until major Broadway stars were posting pictures and videos just for our little girl. We called it being #SmileyForKylie and it seemed that every day someone of note posted a new one. Like the autograph my grandmother got for me, those gifts of encouragement cost nothing, but were priceless.

 

In the midst of a particularly harsh round of chemo, I remember telling her that she could use cancer as an opportunity to actually meet Broadway stars and maybe even start a career – a notion she instantly discounted. “Cancer isn’t an opportunity,” she said. “It’s just a terrible thing.”

 

Yet, the dreamer in me persisted. Sometimes we parents have these brilliant ideas that fall flat. In fact, most of my schemes bomb violently. But every once in a while, through kismet or divine intervention, something brilliant happens.

 

Soon after that conversation, I was approached by the Make-a-Wish Foundation about Kylie singing at their gala. She accepted and of course chose a song from a Broadway musical. When word got out, she was contacted personally by the writer and one of the lead actresses from that musical who asked if she would compare notes. It was huge for her!

 

These little touches became a radiant light in Kylie’s darkest hours. I am not sure how we would have endured without them and they wouldn’t have come without the gift of cancer. Of course, I would give it back in a heartbeat. But cancer is a fact I cannot change.

 

You can’t change your cancer either, but how can you use it to make the fight a little more bearable? The slivers of light you get during this terrible time are crucial to your child’s ability to persevere.

 

Maybe your son likes football or baseball. I promise there is a team or player ready to encourage him. There are a host of people and organizations that will rally to make dreams come true for a child with cancer. You never know what contacts your friends and community of support have until you let your child’s desires be known. We didn’t know anyone on Broadway, yet nearly every musical running during her illness Tweeted out to Kylie. (I would caution about being too specific or unrealistic. Every kid wants to meet Taylor Swift, but her schedule could never allow that.)

 

While the primary objective of reaching out for encouragement is helping your child through the toughest fight of their life, the other thing this does is shine a spotlight on the need for safer and more effective treatments for childhood cancer.

 

So I encourage you to be bold and make your child’s desires known to your community of support and whoever else will listen. You just never know what could happen. You might get a surprise that will encourage your little one through today… and then you can work for tomorrow.

 

 


 

 

Mark Myers is a writer, public speaker, runner, veteran and most importantly a childhood cancer advocate following the loss of his youngest daughter Kylie to Ewing’s Sarcoma in February 2015. He blogs at www.markmyers.net and his Book Missing Kylie is available on Amazon.com.

 


 

George Mark Children’s House: a pediatric palliative care center

AlyssaEriksonby Alyssa Erikson, RN, PhD

 

It was the weekend and my shift was nearing the end. The patient was secured in his wheelchair, ready to go home. He lives with a serious chronic condition, which requires intensive, around-the-clock care. I helped the parents pack and load everything he needs for daily survival – a suction machine, a nebulizer, a large bag of medications, the oxygen tank. They had just returned from a five day vacation, which was their first trip away together in many years. They joked about how much they slept while away. Once everything was loaded, we walked out of the room and to their van. As we stepped out, his dad turned to me and said, ““If I had a few million dollars, I would donate it all to this place.”

 

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Confessions of a Wallflower

MarkLewisby Mark Lewis, MD, CKN Social Media Editor

 

(This article was originally published by Critical Mass.)

 

My name is Mark Lewis and I have a confession to make: I arrived late to the party of adolescent/young adult (AYA) oncology, bashfully and in disguise.

 

I am an adult oncologist, meaning that my practice is medically and legally confined to patients 18 years and older. But I am married to a pediatrician, and I understand that cancer, in all its terrible callousness, shows no respect for age; it can burst forth in the blood of an infant just as catastrophically as it can in the bones of that child’s great-grandfather.

 

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Living your Best Life in Spite of the Shadow of Cancer

ClarissaShilstraby Clarissa Schilstra, Living with Cancer, CKN Advisory Board Member

 

When I was diagnosed with acute lymphoblastic leukemia at 2 ½ years old, I never imagined it would ever come back.  For leukemia survivors, your risk of relapse decreases significantly as years go by, all the way down to a less than 5% chance of relapse by ten years after your initial diagnosis.  When that seemingly impossible occurrence became a reality for me, I was just about to turn 13.  I could not believe it.  Now that I have been through a cancer relapse, I feel that there is no number of years that will guarantee me safe from cancer.

 

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Tempered Hope for Children with Cancer: Current Initiatives in the United States

jonathanaginSMALLby Jonathan Agin, CKN Childhood Cancer Advocacy Co-Editor

 

In the United States these days, there are discussions of the moon, precision medicine, targeted therapies, priority review vouchers and moving into the 21st Century.  These are all buzzwords that touch directly or indirectly upon the efforts to treat cancer and other diseases in our population.  These efforts are intricate and complicated to say the least, and at the end of the day, the childhood cancer advocacy community is playing a game of musical chairs in an effort to find a seat at the table.  Ultimately, there is no way of knowing just what role our voices will play, and more importantly, what the overall impact will be upon the childhood cancer community as a result of these initiatives.  Nonetheless, the simple fact that there are these potential opportunities to see gains is enough to warrant tempered optimism.

 

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Childhood Cancer: Exercise Safety Tips

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Physical activity is essential for any child, but what is safe if my child has cancer?

 

by Nicole Culos-Reed, PhD 1 and Carolina Chamorro Vina, PhD 2

1 Professor, Faculty of Kinesiology, University of Calgary; Adjunct Professor, Cumming School of Medicine, University of Calgary; Researcher, Psychosocial Resources, Tom Baker Cancer Centre, Calgary Alberta

2Adjunct Assistant Professor, Faculty of Kinesiology, University of Calgary

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