Why I relay - Mastroianni Family

The Canadian Cancer Society’s 2020 Relay for Life will be a virtual at home experience this year due to COVID-19. It will be a different experience for the yearly participants and something new for those first timers. The streamed broadcast will start at 4 p.m. on the Canadian Cancer Society Facebook page, You Tube and relayforlife.ca.

The annual event has become part of the Mastroianni family’s journey through cancer.

Gina’s husband Mark was diagnosed with cancer in 2015. Her now 17-year-old son Isaac was diagnosed in 2018. Both of her men have had numerous surgeries and Isaac has had chemotherapy and radiation treatments. Prior to that Gina’s dad passed away from cancer in 2008. Mark’s mom died of cancer. Gina’s sister-in-law died of cancer. A close family friend was diagnosed with cancer. As well, along the way there have been the heartfelt losses of children of friends they have made navigating the cancer journey.

“It’s been a crappy five years,” Gina said, not mincing words about the overwhelming number of cancer diagnoses in her family and of those close to her.

“I’ve learned it’s just one day at a time.”

READ MORE: Six year cancer roller-coaster

The gamut of emotions through a cancer navigation is untold and can be overwhelming. Emotions such as shock, fear, worry, concern, anxiety, love, hope and guilt are all common-place and carried as heavy shoulder burdens each day.

Gina said she was in shock when she first heard about her husbands diagnoses and ran through a lot of “what ifs” in her mind. Mark quickly had surgery to remove his cancer and did well for a year or so, but was again diagnosed in late 2016. He had more surgery. Then on a ‘boys trip’ to Vancouver in January 2018 for Mark’s one year check up and some tests on Isaac, tumors were found in Isaac’s brain. Back in Prince Rupert, Gina received the telephone call from Mark in the doctor’s office. The doctor spoke to Gina.

Gina said it was more shock and trauma for her. She was trying to play catch up in her brain and process the words “Isaac” and “cancer” as the doctor continued on speaking to her.

She said she completely lost it and went ‘ballistic’ in her office when she was told of the tumours. She was in shock.

“Initially my thought was ‘Is my child going to die?’ … all this trauma comes through, you know. Going through the previous stuff, as positive as you try to be there are always those thoughts.”

The tumour was in Isaac’s pineal gland. The pineal gland is located in the deep centre of the brain. Isaac was sent back to P.R. to wait as the surgery risks at that time were too great of resulting in a brain bleed or a stroke.

Isaac was diagnosed with mixed germinoma. That basically means he had cancer cells, non-cancer cells and immature tetratomas, which are cells that have not matured into either cancerous or non-cancerous, Gina said.

However, Isaac was medevaced to Vancouver shortly after returning to Prince Rupert. He started to have vision problems at school and the doctor urged them to return to Vancouver immediately.

Gina flew down with Isaac and Mark drove. Jillian, Isaac’s younger sister stayed behind.

As the three hour surgery progressed so did Gina’s concern. The surgery was taking longer than anticipated. Gina’s concern turned into anxiety and she started to pace and cry. Finally, Mark arrived.

“Then my husband was there when Isaac woke up. That was very reassuring because throughout this whole process for most of the time my husband and I were together. I could not navigate it alone.”

Gina said Mark is her rock and her strength. When asked if the feelings were different between receiving a spouses diagnosis to a child’s diagnosis, she struggled for an answer. It is not a question any wife or mother wants to answer, but hesitantly she said ‘yes’.

“You don’t want to lose your partner. You don’t want your child to lose a parent … there is always the fear that (the cancer) is going to come back.”

“As a mature person you can have mature conversations like, what do you think? What are the plans? What do we do? Whereas when it is a child, you’re navigating your own fears, but you are also navigating theirs,” Gina said. “For me there were a lot of challenging times. I spent a lot of time crying in the shower because you don’t want your kids to hear you. You need to be the brave face. You need to reassure them as best as possible that it’s going to be OK. Not just for Isaac, but for our daughter Jillian too.”

“Everyone says to me ‘I don’t know how you did it’, but there’s no choice. You are not given a choice. You just have to do it.”

READ MORE: Why we relay: Crossing the finish line

Gina said other oncology families have helped her to cope. When Isaac was in Seattle for proton radiation they met four families from B.C. who they became close to.

“Spending time talking to the other families because they absolutely ‘get it’, that was the biggest support and we are still friends with them,” Gina said.

But, with the love and support of understanding friends also comes loss.

“Two of those children are now gone. One of them just passed away on May 16. It was devastating,” Gina said about the little boy that Isaac felt like a big brother too. He was just ‘life’ and had the biggest smile, she said.

“There are people that say, ‘oh you just need to cut ties with your oncology families’ because they see how much it hurts when something happens. But I’m like ‘Hmm, it doesn’t work that work that way’. If my son was re-diagnosed or if I was at risk of losing him, I would want that support. It’s like another family. You have to navigate the good and the bad.”

Gina said being at home during COVID-19 with her two teenagers is almost like being in treatment where the isolation is concerned, but it’s harder. In treatment there are other families around to talk to about your feeling and what is happening. When you are in the comfort of your home you are alone with just your thoughts.

Guilt is a common feeling she said. Survivors guilt. Guilt for being healthy. Guilt for being happy. Guilt for not spending enough time with one child or missing a birthday or a recital because you can not be in two places at once.

“When you are in it, you just have to live it … You just have to let go of what you can’t control,” Gina said. “I like to have everything controlled and organized. I’ve had to learn to fly by the seat of my pants a little more - because I’ve just had to.”

During COVID-19 Isaac has had to study from home. He started to have headaches daily. Gina immediately telephoned the neurology and oncology specialists because her fears were at their height and it was extremely stressful, she said. A C.T. scan was arranged for Isaac. Thankfully, she said it turned out to be just too much screen time for him to cope with.

“Your mind goes to that place … it was an automatic fear … your fears just jump to ‘it’s cancer again’,” Gina said. “I guess I am hoping that the emotions settle at some point.”

“I don’t know how much more we can handle. Our bucket is full.”

Gina said the Prince Rupert community has been extremely giving and supportive of their family. She is overwhelmed with gratitude for the efforts made to assist them with donations, dessert auctions, ‘Go Fund Me’ campaigns and the Relay for Life teams.

Gina became involved in Relay for Life with a work team after her dad passed away. The team then became a family team. She said there is definitely more money needed for research for childhood cancer as there is comparatively much less research for this area.

Isaac and his friends have expressed disappointment that there is not the traditional Relay for Life this year. Issac loves the luminaries, Gina said. To mark the event as a family they may go to the track and walk a few laps, as well as have a family fire in the back yard.

“We can get there. There can be a future. My hope for the future is that my kids are successful and they get through this and that their resiliency continues to build - and that we stop getting diagnoses of cancer.”