2019 Camryn

Get out your Kleenex ladies, because this is the story of a little girl with a tumor named Snoopy.

Jan and Jim Nowak (no-wok) are spending their first winter with us here at the Pelican. They have a grand daughter named Camryn.

When Camryn was two she had an eye that didn't track properly. Her optometrist wrote it off as a lazy eye and said there was no need for an MRI. Her parents weren't having it.

They immediately drove to their family doctor who scheduled MRI testing. A tumor was found. Soon afterwards Dr. James Drake and SickKids (the international renowned Hospital For Sick Children in Toronto) came into their lives - and have been there since.

It took two surgeries to be able to fully test the tumor and determine that it was not malignant. But it was at the base of her skull, and it was growing. It was also causing a leakage in spinal fluid which Dr. Drake was able to repair. Not much fun for a child turning three. And not something Jan could have spoken about at the time.

But she can now.

The tumor continued to grow. When Camryn turned 10 she was old enough that they could schedule chemo.

Seventy-four courses of chemo.

The idea was not to eliminate the tumor completely, but to reduce it in size. Dr. Drake explained the process to Camryn by describing the current tumor as being the size of the cartoon character Snoopy. The goal was to get it to the size of Woodstock.

Camryn now refers to her tumor as Snoopy.

They needed to do lots of low dose chemo because if the tumor shrunk too quickly it could break apart and become multiple tumors. Camryn has now completed 43 of the 74. And she handles it with more poise than you could imagine (you will see her in action shortly).

But not everything was to Camryn's liking.

She has a port installed in her chest and to administer the chemo she had to get undressed. She didn't like that part. So Aunt Julie asked for her favorite outfit and installed a zipper diagonally from the left shoulder to below the port. This allows access without removing her top. Score one for Camryn.

Then there was the smell. Not too pleasant. So Dr. Drake gave her a surgical mask and a piece of bubble gum. Now she smells the gum and another problem is solved.

If you are reading this and picturing a sickly, woe-is-me child you couldn't be more off base.

Camryn takes her treatments in stride. She excels in school. She skis and rides horses.

When she turns 16 she will get her black belt in karate. She has all the lower lever belts. She doesn't need to demonstrate any skill she hasn't already demonstrated. They simply wont give anyone a black belt until they turn 16.

But shrinkage of the tumor is not the long term solution. Ideally it needs to be removed. A surgeon can't do it. But "The Arm" can.

"The Arm" is the same arm they used on the Space Shuttle. But like Snoopy it has to be much smaller. And a Woodstock sized arm doesn't exist yet. To build one money needs to be raised. And who is in the forefront of these fund raising efforts?

Camryn.

This video shows Camryn and Dr. Drake explaining what the arm does.

Video of Camry with "The Arm"

But Camryn doesn't just appear in the video. When Dr. Drake presents the concept to potential groups of donors - doctors, businessmen, politicians - Camryn goes with him. She stands in front, does her spiel, operates the arm and answers questions. You know, just like any normal 11 year old kid.

She is not out of the woods, and there is cause for concern. And ultimately she is going to need that arm. But you wouldn't know it from her pictures, her video and the way Jan and Jim describe her and her positive attitude.

My granddaughter, Addi, turns 11 in April. She is special too. I don't know if I would have the strength to share such a story. I want to thank Jan and Jim for letting me tell theirs. I look forward to hearing more about Camryn.

And Woodstock.

Camryn wearing her zippered shirt next to cousin Madeline

With Dad, Mom and Sister Sydney

With Grandma and Grandpa

You can reach out to Jan and Jim at jimenjan@mac.com

Interested in contributing to "The Arm"?

http://www.sickkids.ca/AboutSickKids/Contact-Us/index.html