Stories of Care - Patients

Katelynn sitting

“A Magical Presence”: Katelynn’s Journey as a MacKid

“We’re grateful to the Pediatric Medically Complex Care Program for overseeing and coordinating care from so many different specialties.”

You can’t help but be drawn to young Katelynn, the MacKid with the remarkable smile. Wherever she goes, she has a friendly wave and a warm “hello” for everyone she meets.

“Katelynn has an undeniable spirit that’s just amazing,” says her mother, Heather. “If I’m ever feeling down, I just need to see her smile and it makes a world of difference. She’s always been strong throughout her years of care at McMaster Children’s Hospital.”

Discovering the tumour

In 2016, Katelynn was only ten-and-a-half months old when she was diagnosed with a failure to thrive. She actually weighed less than she did at birth. An MRI at McMaster Children’s Hospital led to a devastating discovery – she had a tumour in her brain that required immediate attention.

“They conducted brain surgery and they were able to remove about 30 per cent of the tumour,” recalls Heather. “Then they started chemotherapy right away. Unfortunately, the tumour grew back just six weeks later.”

Additional procedures were required to implant shunts, which relieved the pressure of spinal fluid that was gathering in her brain. This was followed by an additional brain surgery – during which 90 per cent of the tumour was successfully removed – and 72 more weeks of chemotherapy. The tumour remained stable for the next three years.

Complex clinical care

A number of secondary health issues and developmental delays affected Katelynn as a result of the tumour, and she required the services of numerous clinics at McMaster Children’s Hospital.

“We’re grateful to the Pediatric Medically Complex Care Program for overseeing and coordinating care from so many different specialties,” says Heather. “It helps to make her care much less overwhelming.”

Katelynn has received care at McMaster Children’s Hospital for adrenal deficiencies, diabetes insipidus, damage to her optic nerves and sleep apnea.

She also has hypothalamic obesity, a condition where the hypothalamus is unable to regulate the hormonal system. As a result, Katelynn gains weight very easily, no matter how little she eats. She is on a strict diet of only 600 calories a day, yet she continues to gain weight over time.

Continuing to inspire

In 2021, the tumour began growing again and Katelynn once again required active treatment.

“She’s currently on a clinical trial of targeted chemotherapy, and it’s been a game-changer,” says Heather. “It’s as though the chemo has opened up new pathways in her brain. She’s seen huge developmental gains since the treatment began.”

Katelynn had always relied on her wheelchair for mobility, and she delighted everyone when she started walking in late 2021.

“She loves moving her body and it’s great to see her using her walker at home.”

Katelynn still inspires others with her magical presence as she continues her care at McMaster Children’s Hospital. Despite the medical challenges she faces, she lives life to its fullest and appreciates the many gifts that each day brings.

“Everyone’s kindness at the Hospital is incredible,” says Heather. “We’ll always be grateful for the care we receive as they continue guiding us along this journey.”

More Stories of Care

Read the stories of patients whose lives were touched by donor support.
Continuous Cardiac Care
Continuing Complex Care During COVID
Alleviating an Abdominal Aneurysm
A Step Ahead of Breast Cancer