Grand River Hospital’s POGO Satellite Clinic: a place of healing for local children battling cancer.

Written for and published by Kitchener Today

Beyond the revolving doors, past the wheelchairs, resides the entrance to the POGO Satellite Clinic. Like a parent’s bedside after a bad dream, it’s a place where children go to feel safe. These children are battling cancer. The clinic is one of eight in Ontario.

Pediatric Oncology Group of Ontario (POGO) offers financial assistance to families to help ease some of the burdens associated with a childhood cancer diagnosis. POGO Satellite Clinics bring care closer to home for these families, also easing the burden of travel.

POGO Satellite Clinic Coordinator, and Resource Nurse for Children’s Outpatient Clinic, Cristina Peter has been with Grand River Hospital for eight years, “this was always where I wanted to be, in pediatric oncology.” She describes the best part of the job as “seeing the kids coming in looking well – able to receive their treatment, leave, and return to school.”

“Kids go through this and it’s the hardest journey of their lives, but many times they’re happy, singing, dancing and playing. It’s just amazing.”

The GRH POGO Satellite Clinic is the only hospital that sees children from all three tertiary centers; The Hospital for Sick Children, London Health Sciences and McMaster Children’s Hospital. Kids come to the clinic for anything from bloodwork, to chemotherapy. Clinic staff remain in communication with pediatric oncologists from the referral hospital.

Peter says all of the children are special to her, although; the ones that are diagnosed in the clinic hold an extra emotional connection. “Jonathan (J.T.) is one of the many families in our area that came in with symptoms and was diagnosed in our clinic. So, we were there when he had his first bloodwork done and results come in. Watching the family go through a cancer diagnosis is heartbreaking, but at the same time when you see them coming back feeling well and happy then it just helps us deal with the grief as well.”

Leanne Kukla, J.T.’s mom, recalls their cancer journey, “J.T. hadn’t been well for months but we didn’t know what it was.” Eventually they were referred to Sick Kids. On January 31, 2018 Jonathan’s family received a cancer diagnosis; non-Hodgkins’s T cell lymphoblastic lymphoma, stage 3. He was 10.

Childhood cancer affects the entire family. During critical stages of his treatment, J.T. and his mom lived at the Ronald McDonald House, in Toronto – separated from his dad and sister; Amber. Once he was in the intermittence phase, he was referred to the GRH POGO Satellite Clinic.

Again, they found themselves facing fear of change, “we were comfortable with the team in Toronto. We didn’t know what to expect or who we’d be working with.”

During their first visit they met Cristina. Leanne knew it was going to be ok when J.T. turned to her and said, “you know I think it’s going to be nice here.”

With treatment now 15 minutes from home, J.T. can attend school and sleeps soundly in his own bed – under the same roof as his mom, dad and sister.

“I can do anything, pretty much. I play hockey, I have a tournament this weekend, I’m excited for that.”

The Kukla family has also accessed POGO’s financial support – including meals and accommodations. “It’s not something you expect to have to spend, you have to and you don’t think twice about it but having the extra support, it’s been helpful.”

J.T. is in treatment until June 2020.

Find out more about POGO here.

KW Run for POGO happens early fall, find out more here.

Leanne Kukla, J.T. and Cristina Peter (left to right)

Noah’s POGO story

One cannot comprehend the need for the Pediatric Oncology Group of Ontario without first living vicariously through the people who rely on them.

This is Noah’s POGO story  – shared by his mother, Rachel Wahl.

Pediatric cancers receive less than four percent of all research money raised for cancer. Less than four percent for our future generations, our most precious gifts…how is that even possible?

Pediatric Oncology Group of Ontario dedicates their research funds to only pediatric cancer, with all the new research that they spearhead, I have confidence that those kids are getting a fighting chance.

Our POGO story begins on August 21, 2008

On this day, our world changed forever. That was the day we found out our seven-year-old son was in for the fight of his life. Noah was diagnosed with A.L.L. ph+ Leukemia. Due to the ph+ diagnosis, Noah’s battle was that much harder. He endured a longer treatment protocol then the regular Leukemia treatment.

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It meant we would spend years in and out of a hospital.

When Noah had to be admitted, in London, Ontario, we faced a one-hour commute. Kevin (Noah’s Father) and Paige (Noah’s sister) would head to London on Friday night for dinner, and then I would take Paige home for the weekend – to spend some time with her. Kevin would spend the weekend looking after Noah. He would leave London on Monday morning and drive to Guelph for work.

Monday mornings I would drop Paige off at school and head back to London for the week.

Noah and I made up a game – when we were inpatient –  because being in a hospital can be boring. We called it, ‘What are we going to do when we are all done with the hospital and treatments?’  

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On May 20, 2011, Noah relapsed for the second time and was immediately slated for a bone marrow transplant. The procedure was scheduled for September 30, 2011, we called it Noah’s new birthday. This was the day our daughter gave him the most precious gift, her bone marrow. To say having both of your children in the hospital at the same time is stressful is an understatement.

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Noah was in isolation, waiting for the bone marrow, in a room where only myself or my husband were permitted. My eight-year-old daughter was on another floor prepping for surgery. It was one of the most awful days a parent can have.

We were very hopeful that the transplant would be a success.

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On Noah’s 11th birthday we found out that the cancer was back, he had a less than one percent chance of survival.

On July 1, 2012, Noah earned his angel wings.

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After an exhausting four year battle, my son was finally free.

Why do I support POGO?

Living in a hospital with no income gets expensive. POGO offers after-care clinics, research and financial help for families. They also offer satellite centers for their kids that are a godsend.

When Noah was able to stay in Kitchener, at Grand River Hospital, we had a more “normal” life.

Kevin would sleep at the hospital and then head to work. I would drop Paige off at school and head to the hospital, pick up Paige after school – collect laundry, food, or anything else we needed – and head back to the hospital. Kevin would come back to the hospital after work, we would have dinner as a family and Paige and I would head home.

This was our life for four years.

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POGO’s Satellite Centers made it so much more manageable. We will forever be grateful to them for the support they provide.

When Noah was stable enough, some of his treatments; blood work, and over 70 blood transfusions were able to be done at GRH. This was so huge for us as we didn’t need to go to London or Sick Kids. I could drop Paige off at school, Noah and I could head to GRH, and be home in time to get Paige off the bus.

When Noah spiked a fever, we didn’t have to go to London, we could go to GRH with the confidence that he would be looked after according to the protocol POGO had set up. This was a major thing for us, Noah was always in the hospital so being close to home meant that we could function.

I did not have to spend the week in London with him or rely on the neighbors to drop my daughter off at school. We could function as a family unit, reducing our stress – and Noah’s.

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We cannot do any of the things we planned to do together, instead, Kevin and I sit on the Kitchener Kids with Cancer run/walk committee, to raise funds and awareness for POGO.

We do this to honor Noah.

We do this to give back to an organization that helped us be as “normal” as possible, through the most difficult time of our lives.

Never in a million years did I think he would not be here today, I do what I can to keep up my end of the “game.”

 

 

Find out more about POGO at www.pogo.ca

Get involved with KW Kids with Cancer www.kwrunforpogo.com

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