TORONTO — When she started treatment for cancer, Lauren Donnelly went from being an active teen taking part in soccer and dance to completely bedridden.
Donnelly was diagnosed in September 2005 with acute lymphoblastic leukemia, the most common form of childhood cancer. Therapy left her so weakened at times that walking upstairs to bed was an obstacle.
Despite going into remission a month into her treatment, she still had to complete the full 30 months of the protocol, forcing her to drop out of school and spend a total of six months in hospital.
Donnelly had frequent bone marrow aspirates and spinal taps, underwent chemotherapy and had cranial radiation, a preventive therapy for relapse.
The side effects of steroid therapy caused her hips to collapse, leaving her with limited mobility. She also had to be in isolation at times when her immune system was affected by treatments.
“I was 15 when I was diagnosed and that’s the stage where teenagers are starting to gain their independence and they’re coming into their own. For me, it was the opposite experience,” Donnelly said from her home in Georgetown, Ont., west of Toronto.
“I became completely reliant on my parents. I couldn’t go out and socialize and start to do my own thing. I experienced a lot of isolation, and (for) teenagers, it’s difficult for them for them to wrap their heads around going through a life-threatening illness.”
At the time, Donnelly didn’t meet many other teens in the same boat.
But now, the 19-year-old is hoping other young people living with the disease don’t have to face their journey alone.
Donnelly is among the mentors at a new social networking site specifically created for teens with cancer. Teen Connector, developed by the Childhood Cancer Foundation, is designed for those aged 12 to 19.
The website has many features of a traditional social networking site where individuals have profiles and can upload photos but it’s geared to teens in hospital going through cancer treatment, with discussion forums and an events section. There’s even a games section for those who may not be in the mood to chat.
All the mentors have visible profiles of the type of cancer they have and treatments they went through so teens can seek out those who have had similar experiences.
The idea is to be different from traditional support groups, and allow teens to reach out from their homes or hospital rooms, Donnelly said.
“Teenagers are at that awkward social stage where they’ve lost their hair, they’re struggling with their body image issues, and meeting face-to-face in a support group is something that’s not always comfortable,” she said.
“They want to ask candid questions and embarrassing questions, so support groups are not always the most comfortable setting for that.”
Mary Lye said she’ll never forget the moment when she picked up the phone several years ago in her daughter Harriet’s hospital room and heard the voice of a young woman named Sarah.
Lye’s husband had seen a notice posted at Toronto’s Hospital for Sick Children appealing to those with teens experiencing cancer to contact the foundation’s teen connection program. Harriet was matched with Sarah, who also had experienced acute myelogenous leukemia.
The two spoke, and Sarah even travelled from Kingston, Ont., to visit with Harriet, and they continue to stay in touch.
“For us as parents it was the light at the end of a tunnel that we saw and heard in Sarah, and hope for our daughter too that she could go on to live a normal healthy life like Sarah was,” said Lye, who went on to become director of marketing and communications for Childhood Cancer Foundation.
“That’s how that image of connecting teenagers happened in our lives and I always held that to me.” Wendy Shama, a social worker in the leukemia and lymphoma program at the Hospital for Sick Children, and her colleague, Sonia Lucchetta, published a paper on the psychosocial issues of teens diagnosed with cancer and the development of a program to support their needs.
Shama said it’s important to help them maintain their connection to the community and to encourage them to connect with others going through similar treatment. They run two events a year — Funky Young Women, a spa day for girls — and Boys Night Out — to see a Toronto Maple Leafs home game — aimed at helping to reduce isolation and to facilitate the introduction to others in treatment.
In recent years, online networking such as instant messaging has made it easier for kids to stay in touch, she said.
“If they’re feeling not well enough to get up or get out of their room, they can still be connecting to other teens on the computer,” Shama said.
Donnelly hopes to eventually go to university to study journalism. She’s had both hips replaced and will have to have her shoulders done.
On The Net:
www.teenconnector.ca/accounts/LoginMain.aspx