The Keys’ Story: One family’s childhood brain tumour journey

The Keys’ Story: One family’s childhood brain tumour journey

When Dave and Shelly Keys welcomed their little girl to the world in January 1999, it was a joyous occasion. By the time Rachelle was one, she was already walking – an exciting accomplishment for the entire family. But it was shortly after that milestone that Dave and Shelly noticed Rachelle would fall down unexpectedly. “We’d be holding her, and she’d just fall into us,” Dave recalls.

A routine check-up for Rachelle was the beginning of an unexpected journey for the Keys family. 

After explaining their concerns, Rachelle’s doctor wasted no time and sent the family to a pediatrician. Testing began in order to determine the cause of Rachelle’s unusual symptoms. “That’s when we learned our daughter was having seizures,” explains Shelly. “It was a major shock for us all.” At just 18 months old, Rachelle was diagnosed with a low-grade astrocytoma.

Anti-seizure medication and surgery followed, with young Rachelle undergoing her first brain tumour operation in July of 2000. While a majority of the mass was removed, due to its location, it was deemed too great a risk to remove entirely. From there, Rachelle remained on anticonvulsants until there were no more signs of seizures.

Regular MRIs would keep track of any tumour growth, but the procedure was difficult for Rachelle, who had to be sedated to stay still during the scan. “This was our most difficult time, but we always found strength and support with the hospital teams,” Dave says. “And thankfully, Rachelle doesn’t remember all of that early testing, medication and surgery preparation.”

Several years passed with no signs of growth or seizures, until 2006. That’s when Rachelle began to have mild seizures, feeling numbness in what she called her “funny leg.” Rachelle would undergo her second brain surgery in 2007, when she was eight.

Today, Rachelle is 15 and a dedicated ringette player whose team won gold in their division at the eastern canada tournament. With MRIs every six months to monitor Rachelle’s health, Shelly says the family is grateful that there have been no noticeable brain tumour side effects but that constantly facing the unknown is a challenge. “It’s always a joyous moment when we get that MRI follow-up with a positive message from Rachelle’s surgeon.”

Throughout the Keys’ brain tumour journey, they have turned to Brain Tumour Foundation of Canada for information, attending BrainWAVE events and making friends who can understand what the family has been through. When asked if they have any words to share with families starting their own journey, Shelly emphasizes the importance of listening to your intuition but remembering to work closely with your medical team. “Trusting your instincts is crucial, but it has to be with guidance from your health care professionals. And don’t be afraid to take advantage of the wonderful support Brain Tumour Foundation of Canada has to offer.”

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Story posted:May 2014

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