Geneviève "Genny" Detillieux

Diagnosis High Risk Pre-B cell Acute Lymphoblastic Leukemia
Symptoms Leg pain, night sweats, weight loss
Treatment Plan 2.5 years of chemotherapy
What do you do for fun? Crafts
What do you want to be when you grow up? A pediatrician
Favourite Superhero Supergirl

Nine-year-old Genny Detillieux takes a break from an intense session of Barbies drama with her sisters to chat about CHEO and the team who saved her life. Her shiny, deep brown eyes reveal she is an old soul, wizened by her fight against cancer. She makes up a girl squad with her two sisters: one older, Rose and one younger, Alie. She also has a baby brother, Adrien, age three, whom she adores!

“Genny said her legs ached and we chalked it up to growing pains,” her mom Lisa recalls. Then came the frequent fevers, night sweats, weight loss and the pain in her legs intensified. Lisa and her dad Vince brought Genny along to a scheduled follow-up with their pediatrician for Adrian, who was just 10 days old. “She was in agony. We needed action,” Lisa recalls. Their doctor ordered a blood test, and the results came right away. “She told us to take Genny to CHEO immediately.”

November 5, 2018, their lives changed forever. "I was at home with the kids, Vince was at CHEO with Genny,” Lisa remembers. “By four o’clock that afternoon, the doctor said she wasn’t going home.” They called Lisa to break the news.

“Once I heard Vince’s voice, and the doctor said ‘cancer’ I fell apart, we both did,” Lisa remembers. But they dusted off their grief and drew on the armour of family, friends, and faith to face things head on. “We're very connected with our church and our community there gave us so much support.”

The diagnosis: High Risk PreB cell Acute Lymphoblastic Leukemia (PreB ALL) that would require a two-and-a-half-year plan to attack the cancer in Genny’s blood and bone marrow. The CHEO team would deliver her chemotherapy through lumbar punctures and IV in hospital and oral medication at home.

“We felt so supported when they took us in and took care of Genny." In addition to treatment, everything was in place to support our unique family situation: social work, financial support information, things like that,” Lisa says. “You’re there so often for so much time, it’s comforting to see the same faces – the nurses and staff. They’ve become family!”

It was pre-Covid, so sometimes Genny and her sisters would come to CHEO together. There would be toys and bubbles and Molly Penny, CHEO’s therapeutic clown cracking jokes, against a backdrop of medical equipment. “Kids will be kids no matter what, if you let them,” Lisa says with a smile. CHEO is also where Genny and Adrian forged their own special bond. “On some level, I feel Adrian knew his sister needed him,” Lisa says, her voice quiet. “He was a comfort to her and was there through it all.” 

Child life specialists were also crucial for Genny. “She actually looked forward to visits and overnight stays. They kept her busy and she could have whatever she wanted from the craft cupboard,” Lisa laughs. They also empowered Genny to take charge of her medical procedures through medical play, using a doll to practice and prepare for needle pokes. 

But chemo is a beast and Genny didn’t escape its side effects. She fought fatigue and nausea. “She would play hard and be exhausted, but happy,” Lisa says. Genny also experienced hair loss. When her glossy black hair started to fall out, Lisa recalls watching Vince, who stands over six feet, in an act of pure love, gently shaving Genny’s head. Genny owned it. She wore dresses and matching headbands and reveled in the freedom of not having to deal with her hair.

Vince also took Genny to her early morning appointments while Lisa got the kids ready for the day. “He loved that time with her,” Lisa says, smiling. “He would be there when she woke up from her lumbar puncture procedures and have her favourite food ordered for her from the cafeteria.” Lisa took on Genny’s other appointments, with Adrian in tow while the other girls were in school.

“She was so tough,” Lisa says, incredulous. “She just did it. It was like she was built for it. She would swallow her pills whole; she would take on everything bravely. Genny has always been ‘the quiet one.’ But watching her go through this, we realized that she may be the strongest of us all,” Lisa explains. “She’s a deep thinker and has an understanding, a quiet strength within that we’ve all been drawing on.”

 These days Genny visits CHEO every four to six months for blood work. In February 2022, she marked one-year cancer free! Every milestone is a cause for celebration! And life at home is full of laughter again.

“Genny has the best laugh,” Lisa says, laughing herself. It’s true. It’s cascading, full of joy and sounds like tinkling glass bells. That laugh is usually at the centre of playtime with her siblings. Together they bring silliness to an art form. “I don’t know exactly what they’re giggling about,” Lisa says, with a twinkle in her eye. “But it’s my favourite sound. It means everything is right in our world.”

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