By Dana Ewachow
I met with Wendy Shama at the Zavida Coffee right across from Immunodeficiency Canada’s downtown office. That day, she had to push back the time of the meeting by an hour. During the hour we spoke together, she received two calls. She is unmistakably busy, juggling her social work at SickKids and her involvement with Immunodeficiency Canada. She manages a multitude of demands, and she does them successfully. This year, she received the Dr. Beverly Antle Legacy of Hope Award. The award is presented to an outstanding social worker who through the integration of clinical practice, teaching, and research has made a difference in the lives of children and their families. The award is given out every two years.
Shama has worked at SickKids for 22 years, specializing in the Leukemia/Lymphoma population in addition to the Immunology families whose children are undergoing a bone marrow transplant. There are fewer families with children who have Immunodeficienciesis than children with Leukemia/Lymphoma, but Shama still devotes an incredible amount of time and focus on them.
Shama has been involved with Immunodeficiency Canada since 2009. Immunodeficiency Canada has helped support and fund some of Shama’s projects, including the annual teen events. Shama and Brenda Reid, RN have been running the teen events since 2010. They do one event for teen boys, and another for teen girls. There tends to be a smaller number of girls, and they typically go to a spa for their event. They get the spa treatment, followed by lunch and a support group. The girls can open up about school, relationships with peers, parents, or whatever else the girls want to share.
“It was really about trying to enhance their body image and self-esteem,” says Shama, “because getting treatment including needles and IVs can affect the way they feel about themselves. It also focuses on connecting these teenagers with others going through a similar experience.”
The boys’ events have larger numbers, and typically revolve around an activity. Over the years they have done activities like laser-tag, whirlyball, cosmic bowling, and rock climbing. The group gets together for the fun activity, and then finishes with a support group similar to the girls’ event. The boys also get a perk: they get to bring a friend. Shama tells me that these events are meant to counteract the feeling of being singled out as a chronically ill teen: “In this situation they’re singled out in a positive way. So, now they get to say to their friend: Hey, we get to go rock climbing, do you want to come?”
Both events have received positive feedback from the teens, but the ultimate proof of their success is seen in the hospital. Shama excitedly commented that the teens that normally would go about their appointments and infusions without much talking, are now chatting and connecting with each other. They can talk about their conditions or their appointments, and more importantly, they can see that they’re not the only teenager going through these difficulties.
Shama also organizes the SCID Picnic with Brenda Reid, RN, which brings together families who have kids that have undergone bone marrow transplants.
“I love it when the new fellows come to the event, because they can’t tell the difference between a child who has had a bone marrow transplant and their brother or sister. So, it’s really exciting to say ‘Look at what the aftermath can be. Look after the transplant, at them having a happy, healthy, normal life.”
And as if that’s not enough to do, Shama also created a network of social workers in order to help individuals with PI. Now the network includes social workers from 9 different centres across Canada. They regularly share information about funding for families, events, support groups, and relevant news. With the help of the network, she was able to create resource guides for families based on which province they live in.
When I spoke to Shama, she was preparing to do presentation at ESID 2016 with Brenda Reid, RN. The presentation included a poster summarizing the annual teen events and the positive feedback the events have had. She hopes after ESID that they can publish an article on the impact of PI on the teen population and the importance of social support groups, because she hasn’t seen the subject explored in PI literature.
“Immunodeficiency Canada has given me the opportunity to do the work with this population that I want to do, that I wouldn’t be able to do without them,” she said. “I think they’ve been really instrumental in helping us reach more people…” While Immunodeficiency Canada as an organization exists to help provide opportunities for those who want to help individuals with PI, it’s important to note that those opportunities are wasted if they’re not taken. Wendy Shama has taken these opportunities and done wonderful things with them. As her award described, she is an outstanding social worker who has made a difference in the lives of children and their families.