Wonderful Virtual Presence

Hayden’s parents were informed that their son had cancer two days before his 12th birthday. The news came over the phone. Their son was scheduled to begin chemotherapy treatments, but they were unable to tell them more. “It was scary. We were completely distraught,” says his mother Tania. Since we didn’t know what it was, we didn’t tell him. We preferred to let his birthday pass and live our emotions on our own. It was a real nightmare!”

For six months, Hayden had been complaining about an uncomfortable lump under his buttocks. private by nature, he didn’t want his parents to look or touch. The boy felt no pain. But the lump grew and Hayden continued to complain about it. “I was sure it was trivial, that he had hurt himself falling on the ice. I just shrugged it off. I was crushed with guilt for a long time.” In May, Tania and her partner insisted: they wanted to have a look. “It was really big.”

An Unsuspected Diagnosis

A consultation with his family doctor led to an ultrasound. They diagnosed it as a cyst. Nothing to worry about, they thought. The boy had surgery a month later, on June 25th, 2020. The day after his birthday party, Hayden underwent a battery of tests and the diagnosis came down: he had extraosseous Ewing’s sarcoma. That was when the boy learned he had cancer. “When we got out of the hospital, we were all devastated. We were all crying in the car, it was very tough.”

A few days later, as Hayden was beginning his chemotherapy treatments, a hospital employee explained the services offered by Leucan. Because of the pandemic, the Association’s counselors were no longer allowed in the hospital. “I think I retained barely 10% of what she told us. I didn’t know at that point what Leucan could do for us.”

Every Night, the Leucan Blanket.

Hayden quickly opened the red bag he was given that day and found the Leucan blanket. “He hasn’t been without it since,” says his mother. “Even now, after two months of treatment, he sleeps with it every night. He calls it his Leu-Leu!”

“Everything in the bag was really useful,” Tania says. Hayden’s two older sisters read and reread the book on cancer, as it was an awful shock for them too. Hayden also wore the special t-shirts that were designed for the treatments.

A few weeks later, Tania was able to talk with Marie-Josée, a Leucan counselor. She now had a little bit of sunshine to brighten up her days. “Marie-Josée is so supportive, empathetic, and really listens. Just talking to her is a relief.” The counselor told her about the Leucan Information Centre and the virtual activities organized during the pandemic.

Always There

“What I find amazing is that Leucan was able to maintain a presence with families and children through virtual activities. As soon as I received an email, I signed up. I was always there!” They participated in bingos, Halloween, Valentine’s Day, the sugar shack activity. Tania also took part in an art therapy workshop. “I love taking part in the activities organized by Leucan. It’s fun, joyful, well organized. Even Hayden often participated from the hospital.”

Of course, Tania would have liked to have been able to meet parents who were going through the same things she was. The lockdown added a layer of anxiety, she notes. “I found the hospital rules very restrictive. We were only allowed one parent; we couldn’t take turns. We couldn’t go near the other parents.” She would have liked to have had a massage, too. “I was working from the hospital room, in an uncomfortable position, and sleeping on a bench! Hayden likes massages, too.”

New Friends Soon

After intensive and sometimes painful treatments, Hayden is enjoying his recent remission. His hair is still too short for his liking. He never accepted losing all of his hair. “During online school, he always wore a cap.” But he’s getting back into shape, running, being active and looking forward to going back to school. He’ll be in grade 8.

“For his father and I, life will never be the same again. There will always be a little fear.” When the conditions will allow it, Tania will be happy to meet other Leucan parents in person. “I can’t wait. Hayden will also be able to be around children who understand what he has been through, to make new friends like him. All thanks to Leucan.”

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