Making life-long friends on the road for a purpose

Longtime volunteer Diane Exner sat down with Tara and Jonathan Brown to discuss their journey with childhood cancer. They shared with Diane why they volunteer each year for Tour For Kids Alberta, a multi-day cycling event that raises funds for Kids Cancer Care and Camp Kindle.

Diane: Thank You, Jonathan and Tara, for taking a few minutes out of your busy lives to talk with me today, and for all you do for Kids Cancer Care; specifically Tour For Kids. We appreciate all you do. I know that Kids Cancer Care and Tour For Kids is a cause close to your heart, I was wondering if you would mind sharing a bit of your story with us?

Jonathan: Our son, Alexander was diagnosed with a brain tumour when he was two years old. He went through 10 months of treatment (chemo, high dose chemo, intrathecal chemo, stem cell transplant, radiation and two brain surgeries). Nothing would stop the tumor. He passed away on October 23, 2010. (He was born November 13, 2007). We donated his brain and tumour to research after he passed away. His tumour ETMR (previously known as ETANTR) was the 36^th documented case in the world. They were able to create a cell line from his tumour donation. This means they have something to do research on now. This is the one and only cell line for ETMR in the world. It’s extremely valuable. Researchers all over the world have asked for it. (Across Canada and the USA, Germany, Switzerland, London, Spain) Several papers have been written about his cell line. The most recent research has shown that a couple chemo combinations show promise is slowing the tumour down. It’s not a cure, but it’s a start in the right direction!

Diane: How long have you been volunteering with Kids Cancer Care and Tour For Kids?

Tara: Seven years now. We started once Alexander passed away. It was something to keep us busy, but now we love it and would love to find a way to volunteer more!

Diane: Can you tell us how you got involved in this particular weekend?

Tara: We were already active volunteers for Kids Cancer Care, but we heard from others who volunteer for T4K how much fun it was. We decided to give it a try, and now we are hooked. We found the perfect job for us, we do the signage. For us, since we can be together, it’s like a big road trip. It’s so much fun! It’s hard work….early mornings and late nights, aching bones, but so much fun!

Diane: This weekend is a three-day commitment for both volunteers and cyclists, and days can be long, tiring and a lot of work. What keeps you motivated to put so many hours in, in such a short period of time?

Tara: This event is special. I think part of that specialness is that it’s three days. You really get a bond with everyone since you are all in it for three days. You work together to fix issues and make things work. Plus, it’s awesome being able to drive around and be with my husband all day. Being able to tell your story and tell people about Alexander is very healing for us.

Diane: What is the atmosphere like over the 3 days? Why do you come back year after year?

Jonathan: Everyone is happy and upbeat. Everyone pulls together to fix issues and keep things running. The cyclists are so thankful to the volunteers and the volunteers are so thankful to the cyclists. It’s a great symbiotic relationship.

Tara: Again, cyclist love to hear our story and hear about Alexander, which is amazing. T4K is an amazing event for Kids Cancer Care. It’s a way for us to help Kids Cancer Care without having to donate money. There’s only so much money we can donate in a year, so being able to donate our time to help raise money is great.

Diane: If someone wanted to get involved in the Tour Four Kids weekend, as a cyclist or volunteer, what would you tell them they could expect from this event? I’ve heard words like ‘intimate’, ‘family’, and ‘life-long friends’ when people talk about this weekend. Would you agree these would be descriptors from your perspective?

Jonathan: Yes definitely. It’s very intimate. Everyone becomes family and life-long friends. You shared a three-day journey with them, it’s inevitable that bonds will be created. Plus, you get to spend a night at Camp Kindle, this is amazing for the cyclists to see first hand where their money will go. And it’s great for volunteers and families to spend time here. We love to go to camp any chance we get, we feel safe and protected there.

Diane: I know you have a very personal connection to this event, would you mind sharing your personal story, and how this has impacted your lives including present day? How has it helped through the healing process?

Tara: Alexander is our only child. He was brought here to help find a cure through his cell line and to give us a purpose. That purpose is to help fund his cell line (which Kids Cancer Care does) and to help other families. When people look at Jonathan and I, they see a couple with no kids. They don’t see the angel by our side. Part of our healing is to tell people about Alexander. It keeps his memory alive and brings joy to us to talk about him. He is still fighting cancer through his cell line… we are so very proud of him.

Diane: Your story started seven years ago, and this event has played an important role in supporting you through it. With this year’s event fast approaching July 13, 14 and 15th, what would you say to those folks to are looking for ways to support. How can they help?

Tara: If you are a cyclist, this is a must-attend event! This is a challenging event, but you are treated like royalty every day. There are massage therapists on hand, there are mechanics on hand, amazing food every day. Supper one night is a steak dinner; the other night is a great supper at camp. Amazing scenery, during your ride too! You can support as a volunteer. Yes, it’s a three-day commitment, but it will be the best thing you ever did. Lastly, you can donate to one of the cyclists, every dollar counts! Oh, if you can’t make the three-day commitment, there are also volunteer opportunities before and after the event.

Ride somewhere meaningful this summer on Tour for Kids Alberta and help send children with cancer to Camp Kindle. If you are interested in registering for Tour for Kids, July 13 to 15, sign up here! 

If you are interested in volunteering for Tour for Kids, please contact Tracey Stahn. 

Dr. Sorana Morrissy is one of Calgary’s newest recruits to the Childhood Cancer Research Lab at the University of Calgary. She is investigating a devastating children’s brain cancer and predicts that one day we may be able to monitor a child’s risk of relapse with a simple blood test. 

With a bold new research lab and a world-renowned tumour bank, Calgary was the ideal place for Dr. Morrissy to relocate her lab and continue her research into medullablastoma, an aggressive pediatric brain cancer. Her research is already offering important insights into this disease. And your support helped bring her here.

“While the prospect of working in a brand new lab environment was compelling, I was especially drawn to the collaborative nature of the work being done at the Alberta Children’s Hospital Research Institute and University of Calgary,” says Dr. Morrissy. “The multidisciplinary approach is invaluable in our quest to find new answers for kids fighting cancer.”

A medical geneticist from the Hospital for Sick Children in Toronto, Dr. Morrissy is working with researchers specializing in brain tumours and the immune system. She is sequencing medullablastoma tumour samples to understand why some cancer cells elude chemotherapies and why others don’t. Employing advanced computer systems, Dr. Morrissy and her research team apply complex mathematical analysis on the genetic code extracted from medullablastoma tumour samples. With this information, they are able to calculate and predict certain responses in the tumours, which they can later test in the lab.

Medullablastoma is the most common type of children’s malignant brain tumours, representing 20 per cent of all children’s brain tumours. Although we have seen significant advances in research and care, about 30 per cent of all children diagnosed with this brain cancer do not survive.

The ultimate goal of Dr. Morrissy’s research is to understand the molecular changes in tumour cells that make them resistant to cancer treatments. Armed with this information, they can begin laying the foundation for identifying and developing new targeted therapies that will save lives without causing devastating permanent damage to the child.

“In Calgary, there may be three to four cases of medullablastoma a year, but in every case, treatment causes heartbreaking damage to these young developing brains,” says Dr. Morrissy. “It’s important for us to find better ways to help these kids and their families.”

None of Dr. Morrissy’s work could be done without a robust collection of tumour samples. Thanks to your support, Calgary boasts one of the largest collections in North America. “The tumour bank here in Calgary is exceptionally rich with large samples,” says Dr. Morrissy. “It allows us to examine cells from different parts of the tumour and see how the tumour grows and adapts over time.”

Dr. Jennifer Chan, who oversees the tumour bank with over 20 types of tumour samples, is pleased to have Dr. Morrissy on the Calgary research team. “It’s exciting to be adding experts like Dr. Morrissy to our exceptional team of researchers in the Childhood Cancer Research Program,” says Dr. Jennifer Chan. “Her findings are already revealing interesting new approaches to tackling this very difficult diagnosis.”

“We know that metastases of medullablastoma are entirely devastating,” says Dr. Morrissy. “It’s important to understand how the cancer cells spread from the primary tumour to distant sites on the brain surface – our research indicates that they cross the blood-brain barrier and travel in the bloodstream throughout the body, homing back to the brain where they grow as deadly metastases. This tells us that perhaps we can monitor the risk of the cancer recurring by doing simple blood tests. It’s a hypothesis at this point, but it gives us a place to start.”

The new Childhood Cancer Research Lab at the University of Calgary Cumming School of Medicine, which opened last December, complements the strong culture of innovation and collaboration that was so attractive to Dr. Morrissy. The open concept and shared work spaces of the lab encourage easy interaction and collaboration among researchers.

“Seasoned researchers will tell you the simple conversations that happen in the lunch room or hallway are where some of the best ideas are born,” says Dr. Chan, the Kids Cancer Care Chair in Pediatric Oncology, who is the brains behind the new research space. “We wanted to create a space that would make those conversations a part of our everyday experience. Since the lab opened in December 2017, we are already seeing more connections being made between labs. It’s very gratifying and our hope is that it will ultimately result in some promising findings for the kids and families we are working so hard to help.”

Adapted with permission from the Alberta Children’s Hospital Foundation

Read more about the new Childhood Cancer Research Lab here.