Families

Childhood Cancer Stories: My Day With Ryan [PHOTO ESSAY]

by Alison Sutton, St. Baldrick's Foundation
April 13, 2017

Honored Kid Ryan C. faces childhood cancer with a contagiously positive attitude — and our social media manager, Alison Sutton, got to experience this firsthand when she hung out with him last month! Read on to see what life is like for Ryan and bask in the glow of this amazing kid, his awesome family, and their St. Baldrick’s fundraising team — Team Rally for Ryan.

Ryan smiles

St Patrick’s Day is a special day at the St. Baldrick’s Foundation because 17 years ago, our founders hosted their first head-shaving event!

This St. Patrick’s Day I spent the day at Arnold Palmer Children’s Hospital in Orlando, Fla. with Honored Kid Ryan C. to see what a day in his life is like.

Ryan and Ali

The day was already meaningful given where I work, but now it holds an extra special meaning as the day I saw Ryan gracefully (and with a smile) fight cancer.

Arnold Palmer Children's Hospital

I’ve been to a good amount of children’s hospitals, but it was my first time at Arnold Palmer Children’s Hospital and I got a bit lost.

After being told I needed to “find the castle down the hall and take a right,” to my surprise, I was greeted by not just Ryan and his mom, Kelly, but also by Ryan’s two siblings, Hannah and Carter.

With a smile on his face and matching green Rally for Ryan t-shirts, the first thing he said was, “Hello Miss Alison. May I call you Miss Ali for short?”

Ryan C. with his family

That is when I knew Ryan was one of a kind — a sweetheart at his core and a genuine kid that was ready for his usual Friday routine at the children’s hospital.

After introductions, Ryan led the way through the maze that is that hospital and onto the floor he’s visited the last five years.

We made our way back to his room and all three kids immediately turned their focus to the TV for cartoons.

TV time for Ryan and his siblings

That’s when Kelly gave me a little more background on the journey Ryan has had.

Diagnosed with acute lymphoblastic leukemia on September 13, 2012 at the age of 7, Ryan began chemotherapy right away and was classified as “high risk cancer.”

Ryan during treatment
Ryan smiles during treatment

He got really sick, lost his hair, battled fevers and missed all of 3rd grade. After 3 ½ years of treatment, Ryan finally took his last chemotherapy pill in January 2016.

Ryan on his last day of chemo

To ensure everything remained clear, Ryan had monthly checkups. At his 11-month routine checkup, they were told Ryan’s cancer was back — he had relapsed.

On December 19, 2016, he began chemotherapy again.

“It’s different this time because we know what to expect. He got a taste of reality and normalcy and now we have to pull away from his friends.”

After his relapse, Kelly was asked if Ryan would join a clinical trial and they said yes. The trial consisted of immunotherapy, a treatment that uses a patient’s own immune system to destroy cancer cells.

What is extra special about Ryan’s trial is that his treatment is inside his backpack.

Ryan's special backpack

This means that instead of frequently going in for hospital stays, Ryan has a constant drip going into his body. He goes into the hospital twice a week to have the bag and battery changed.

Ryan shows how the chemotherapy is infused into his body

I had never seen anything like it before and thought it was the neatest thing!

Kids with cancer face so many obstacles that make them feel different from kids their age, and while no child should have to go through this, at least the backpack gives Ryan more freedom and fewer hospital visits.

His mom added, “Because of research, he can go home. He doesn’t have to stay at the hospital. With this treatment, it’s like Ryan is back. He’s not throwing up. He’s not lethargic.”

This trial is so new that Ryan is the first kid at his hospital to be using the bag.

As the nurse was prepping everything, I asked Ryan if he knew what all of this stuff was.

Medical supplies

“That’s a flush and that’s a gown. I don’t know what that is!”

The nurse was ready and Ryan took a seat.

The nurse was still getting used to this new device so Ryan made sure to give him tips on what to do.

A look inside Ryan's backpack
The nurse changes the bag of chemo

Ryan sat there like a pro, explaining to me everything that was happening — all with a big smile on his face.

His mom turned to me and said, “Ever since he was 7, he’s never complained. Ryan is so easy going and he never asks ‘why.’ It’s almost rougher for the other kids.”

Ryan relaxes and smiles during treatment

And just like that, he was done and free to go home! We stopped by the playground for a little bit and then we parted ways.

Ryan and his family leave their appointment

But lucky for me, I saw the entire family again the next day at the Space Coast Conquers at The Avenue Viera head-shaving event!

Ryan is one of the event’s Honored Kids and it’s actually because of this event and VEO Garrett Lamp that Kelly heard about the St. Baldrick’s Foundation.

After Ryan was diagnosed, the family was invited to attend as an honored family. Ever since then, they were hooked.

In fact, Ryan, his sister, his brother and his dad have all shaved their heads and this year Team Rally for Ryan was the Top Fundraising Team at the event with over $60,000 raised!

Team Rally for Ryan

They even started a St. Baldrick’s Rally for Ryan Hero Fund last year, which has raised over $250,000 for childhood cancer research!

Inspired by Ryan’s story? Show your support by giving to his Hero Fund today >

With close to four years of treatment under his belt and two more to go, Ryan’s family is determined to keep raising money to find a cure.

“Even when he’s in remission and 10 years from now, we will still be a part of this event.”

Ryan takes a turn as a barber
Ryan smiles with a shavee

So, what’s next for Ryan? He’s hoping to start 6th grade this fall and wants to be a scientist when he grows up!

Kids like Ryan deserve to go to school and grow up to be scientists if they want to. Help kids with cancer live long, healthy lives — fund lifesaving childhood cancer research today.

Give

Read more on the St. Baldrick’s blog:


Share: