A family receives an unimaginable diagnosis

Konnor’s story

 

Tricha always wanted to have a water birth at home. When her second son Konnor was born, she got that opportunity. But in contrast to his smooth and peaceful entry into the world, Konnor was an unhappy baby—he screamed often and intensely.

“He had a cry that pierced the deepest part of my heart,” said Tricha. “He was my second child so I knew these bouts of horrible screaming weren’t normal.”

Her intuition was right. One day when Konnor was six weeks old, Tricha was bathing him in a dimly lit bathroom. His pupils were dilated because of the lighting, and she noticed that the way the light hit his eye was odd—the pupil looked white, like a cat’s eye glowing in the dark. She called her husband Dustin, and they decided to get Konnor to the doctor right away.

“I said to my husband, ‘I don’t know what this is, but I know it’s the reason he’s been screaming.’”

A visit with their doctor turned into ultrasounds, and subsequently into a trip to BC Children’s Hospital for an MRI, spinal tap and genetic testing. The tiny Konnor, just 7 weeks old, would need to be put under anesthetic so doctors could examine his eye properly. When they did, they confirmed a devastating diagnosis—Konnor had a type of cancer known as retinoblastoma. His parents were in shock.

“There are really no words to describe the wave of helplessness and fear that rolls over you when you think your child could die.” —Tricha, Konnor’s mom

Walking into BC Children’s Hospital that first time, Tricha had no idea that it would become a second home for her family over the next four years. At the same time, she recalls all the staff who helped ease the transition.

“Right away, they took us under their wing,” she said. “They taught us the new lingo, organized our new life schedule, and made the transition as smooth as possible during our darkest days.”

Konnor was ultimately diagnosed a gene mutation, called mosaic RB. Because of this, he could develop cancer in his other eye, in the pineal gland in his brain, and is at a higher risk for several other cancers. He also has a fifty per cent chance of passing his condition down to his children.

Konnor’s treatment plan was intensive. Before he was four years old, he was put under anesthesia over 40 times. In addition to receiving cryotherapy and laser on his eye, he had chemotherapy administered directly into his eye. He had many blood and platelet transfusions and countless stays in hospital because of his fevers.

Unfortunately, despite treatment, Konnor grew more tumours and still had active cancer cells in the fluid of his eye. It eventually became too dangerous to keep his eye. On Saint Patrick’s Day in 2017, doctors removed Konnor’s right eye. “I’ll never forget that just a day later, when he was discharged from hospital he was running full speed down the hallways of the hospital screaming ‘I’m cancer-free,’ said Tricha.

Today, Konnor’s family still frequents BC Children’s Hospital so doctors can monitor him for other possible cancers—and he will continue to be a regular until he’s an adult.

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