Light and hope in a hard time

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This article was published 26/03/2022 (1481 days ago), so information in it may no longer be current.

When a child is diagnosed with cancer, families often face a long list of difficult challenges and emotions, including shock, denial, fear, anxiety, anger, guilt, grief, sadness and isolation. Coping with all of that can be overwhelming.

For those longing for connection with others who understand, the volunteer-run Candlelighters Childhood Cancer Support Group (CCCSG) was created to assist with navigating these hard times.

Brenda and Eddie Marion-Gerula know the hardship of having a child with cancer.

“At a routine ophthalmology appointment, one of our sons who is now 12 [but almost 7 at the time] was told to read the letter chart,” says Brenda. “He was a good little reader, and recognized his letters, but when one of his eyes was covered, he was not able to read the chart. The doctor was concerned and sent him for an MRI. He had a type of tumour behind his eye called an optic nerve glioma. The tumour was big and blocked his pathway to his vision causing vision loss. He trained his other eye to see for both, and didn’t notice that he wasn’t able to see in his other eye.”

They met with an oncologist to discuss a 68-week chemotherapy treatment plan.

“His vision was recovered. He’s such a positive kid, and takes everything in stride,” explains Brenda. While in treatment, another type of tumour was detected. That meant an additional 68 weeks of treatment. Since beginning that second course, initial results didn’t seem promising, so he has now been on a different oral chemotherapy for over a year.

The couple had more than enough to cope with when the news came that another one of their sons had the same type of tumour behind his eye.

“Thankfully it was caught quicker, wasn’t as big, and didn’t impact his vision as much as his younger brother. He did his 68-week treatment plan, and that was all, for him. Through all of this there has been tears, confusion and fears, but we as a family have tried to be positive and have strength to have the best attitude possible.”

It was during an appointment that Brenda picked up a Candlelighters newsletter.

“It had some interesting information, contact numbers for support, and an upcoming event to go to the movies, so I signed our family up for that event, and that was the beginning. My husband and I wanted to be able to help other families. Eddie and I both work full-time but still enjoy being a part of Candlelighters, and helping in ways we can.

“I am thankful for the support of Candlelighters. The fun events have been enjoyed by our family, and meeting other incredible families has really helped connect in ways not everyone can relate to,” says Brenda, who has since delivered packages and gifts to the hospital, and shopped for events.

From the first event they attended, the couple felt welcomed, but it was at one event in particular that led the pair to join the board and become more involved.

“We were at a family camp weekend at a hotel. We had an opportunity to meet other parents, connecting in a small group, hearing other parents sharing their own journeys with their child. We all shared similar experiences with medical appointments, oncologists, chemotherapy and MRIs. Hearing their stories and having that emotional connection was truly very special.”

CCCSG has been a registered charity since 2010. Established in the mid-’80s by two mothers to help parents of children with cancer, it was then named Jeffrey’s Folks, after Jeffrey the puppet, used by Cancer Care to teach kids about their treatment.

Since then, countless volunteers have made it possible for families to attend events and have access to resources integral to support and well-being. Something as simple as a phone call or meal can make all the difference during difficult times.

CCCSG also supplies parking passes and food gift cards to families on the children’s cancer ward. Newly diagnosed families are given information packages and a hope blanket for their child. Gift card scholarships are offered to childhood cancer survivors at their high school graduation. The organization arranges events throughout the year, including a family camp. Additionally, CCCSG offers help with bereavement costs for families who have lost a child. Quarterly newsletters offer resource material and updates on upcoming events.

“This past February on CK5 (the ward where children with cancer can stay for longer periods of time), our board heard that there was a lockdown, which meant a parent that was staying in the room with their child could not leave that room to go get a meal for themselves. We provided daily meals for those families; word spread and others also wanted to donate funds or meals.”

Brenda takes comfort in the work of CCCSG.

“When we deliver Christmas gifts to the families, being able to see the kids’ smiling faces, or photos sent to us of the children with their gift, showing us they really appreciated it, makes everything worth it. From holding the virtual events, giving a new family a comfort package, showing them they are not alone, to giving a grad a special gift, they overcame cancer, graduated from high school, and now they move on to choosing a career path accomplishing so much already. It’s all amazing to me.”

An auction will be held from April 1-10 to raise funds for families. More information is available at manitobacandlelighters.org.

fpcity@freepress.mb.ca