My name is Teresa and our lives have changed dramatically since my son Kristian’s diagnosis of rhabdomyosarcoma, a pediatric cancer. Kristian was like any other teenager, full of life, hopes and dreams. He had a hard-earned football scholarship, he had a girlfriend, and he wanted to be a veterinarian. Kristian was diagnosed with rhabdomyosarcoma the day after his high school graduation. He had just turned eighteen a month before his diagnosis, and because of this, he was put into the adult cancer world. The oncologists found it difficult to treat Kristian because although he was diagnosed with a childhood cancer, he was eighteen and built like a football player, so he was very much in an adult body.

I think one of the things Kristian would have appreciated was to not be treated like an adult. He needed the support of his family and friends around him and when he was getting chemotherapy, there were times that he would say “Mom, everyone here is old.”  There was no one close to his age. He didn’t feel comfortable in this adult setting.  It was later in his cancer journey, after my persistence to have Kristian started on a clinical trial, that he transferred to a children’s hospital for treatment because his diagnosis was a childhood cancer. But being surrounded by small children did not make him feel comfortable either.

Kristian received treatment at BC Cancer, an adult oriented cancer centre. His treatments would span two to four days at a time. Kristian would be receiving treatment during the day, but also be awake all night completing school work, studying for exams, etc. As a way to cope with this, his brother attended his classes to take notes for him to use at night when completing his school work.

One of the things that we recognized, especially after Kristian’s passing, is that there is an age group of people who are diagnosed with a serious illness like cancer, who need very unique support because of their age. We realized there was a gap between the pediatric and adult world, particularly between the ages of 15 and 29, where their life is very different from other age groups. Their personal needs are different, their socioeconomic status is different, and their psychological needs are different.

Since Kristian’s passing, my family and I have advocated for this age group of adolescents and young adults (AYA). We got involved in PROFYLE as we saw it as an avenue to help with advocating. We realized that there needed to be more awareness and better resources to help the AYA group, including increasing the understanding of what AYA even was.

PROFYLE is an avenue that gives hope to families, either to maintain life or improve quality of life. In Kristian’s situation, he was diagnosed at the age of 18 and at this time we tried to get genome sequencing for him. Unfortunately, in 2014 to 2015 we had to go outside of the country to do so. Now, children, adolescents and young adults have the option of PROFYLE to receive this sequencing. I have advocated to ensure that young people are receiving the best quality of care, treatment and access. PROFYLE is a way for AYA diagnosed with cancer to get this access and have hope.

Although I continue to be involved in PROFYLE and advocate for AYA with cancer, we need to do better and do more. In order to do so, we need to ensure there is awareness for the AYA group and use PROFYLE to help with this.

At 14 years old, James was your typical active teenager until he started experiencing pain in his left shoulder. An x-ray revealed a large mass on his upper left humerus which would later be diagnosed as osteosarcoma. The common treatment for osteosarcoma is high dose chemotherapy, followed by surgery to remove the tumour and rebuild his shoulder, followed by more chemotherapy.

During James’ treatment, it was discovered that his tumour was growing in size, which is when our oncologist recommended that James take part in the PROFYLE (PRecision Oncology For Young peopLE) study to have his tumour molecularly profiled and potentially be able to offer targeted treatment plans if the conventional treatment proved ineffective.

Unfortunately, James’ surgery to reconstruct his shoulder was unsuccessful and his arm was later amputated at the shoulder to hopefully remove all cancer cells and avoid spread.

After receiving the molecular profiling results and recommendations from the PROFYLE study, our oncologist now has a strong plan in case he ever experiences a relapse and this gives us hope for a positive outcome if this ever comes to pass.

It was very important to James to take part in the PROFYLE study, not only for his own benefit, but also knowing that his samples could help inform medical discoveries that could help other children fighting this terrible disease.

James’ hope is that we can create a world where we can treat childhood cancer and avoid life changing amputations and lifelong side effects from damaging chemotherapy.

We are very thankful that James has just celebrated his one year off-treatment anniversary. Hopefully, he never experiences a relapse, but if he does, we know that PROFYLE will be there.

Kadence was 13 years old when she noticed a mass in her pelvis and abdomen which was later identified as a very rare type of cancer called “stage 4 extracranial medulloepithelioma”. She received treatment over several months including standard chemotherapy, high dose chemotherapy with stem cell transplant rescue, and radiotherapy. When her cancer came back and even progressed after her second- and third-line chemotherapy, our oncologist at the Stollery Children’s Hospital talked to us about the possibility of enrolling in the PROFYLE (PRecision Oncology For Young peopLE) study.

Kadence was enrolled in PROFYLE with the hope that molecular profiling of her tumour would help her oncologists to find new treatment options for her. And it did! PROFYLE gave her another chance and more options when battling the medulloepithelioma.

When Kadence’s cancer came back once more, in addition to new line of chemotherapy, radiation and surgery, she received a targeted therapy informed by PROFYLE findings. More than a year later, when the disease came back again, she received another targeted treatment informed by PROFYLE findings and benefited from a second sequencing of her tumour progression through PROFYLE. This identified other potential therapeutic targets and these findings gave her the opportunity to participate to an experimental treatment at the Hospital for Sick Children.

The treatments that Kadence has received, as a result of her participation in PROFYLE, have extended her life another 2 years.

Kadence is now 17 years old, currently in grade 12 and has been enrolled in the PROFYLE study for two years.

Kadence has a positive attitude and a real fighting spirit that has shown the doctors that she won’t give up even if the cancer keeps coming back. We know that the treatments she has received, that have been informed by PROFYLE, have extended her life and improved her quality of life. This has given her (and us) more time to make memories with family and friends and a chance for her to graduate high school and turn 18.

However, when our oncologist first told us about enrolling Kadence in PROFYLE, we had no knowledge of what this study was, how it worked, nor other treatment options.

As a parent, I found joining the Parent, Patient and Family Node (parent and patient advocacy group) of PROFYLE helped educate me through connections with other families’ personal stories in the program.