The Maguire family live in Kaka Point, a small beach town on the Catlins Coast. Mum Bronwyn, a primary school teacher and dad Jade, a builder had their son Bryn in 2020. The family love the beach and spending time with family and friends. Their world was turned upside down when wee Bryn was diagnosed with an aggressive and rare form of cancer early 2022. The Maguires are the stars of our 2023 House to House campaign - encouraging you to walk, run, cycle or swim 210km during March 2023 while raising funds. You can find out more at housetohouse.org.nz
Around Christmas 2021 Bronwyn and Jade noticed their 22-month-old son Bryn was becoming unsteady on his feet. The usually active toddler wasn’t as willing to climb or run as much as he used to, which then progressed to shaking in his limbs. They took him to their local medical practice twice within two days and were referred to a paediatrician, but told that the wait time could be up to three weeks. “We knew Bryn didn’t have two weeks,” Bronwyn says, “Jade and I packed an overnight bag and took Byn straight to Dunedin ED where we were admitted onto the ward.”
Over the following 24 hours Bryn stopped walking completely. He was booked in for an MRI and the doctor, with tears in her eyes, delivered the devastating news that Bryn had a 4.5-4.6cm tumour in the centre of his brain. Bronwyn explains, “our whole world fell apart.”
Bryn was diagnosed with Atypical Teratoid Rhabdoid Tumour (ATRT) – an extremely rare and aggressive cancer of the central nervous system. The couple were told Bryn’s best chance was to get onto a Life Flight to Starship in Auckland. Bryn had two brain surgeries over the next two days – the initial one to reduce the pressure on his brain, and then an eight-hour life-saving surgery where they endeavoured to remove the tumour. “The surgeries came with a staggering amount of risk,” says Bronwyn, “we weren’t sure what state Bryn would wake up in, or if he’d even recognise us.” However, when they walked into intensive care and Bryn immediately said “Muma, Dada.”, their relief was immense.
Bryn made an amazing recovery and learnt to sit, crawl, walk and even run again. Roughly 96% of the tumour was removed, but unfortunately this type of brain tumour is extremely aggressive; children with ATRT are only given a 30% chance of survival. Bryn was transferred to Christchurch Hospital where he completed two rounds of induction chemotherapy, and three high-intensity stem cell returns. Bronwyn explains that “chemo was brutal, and it included three terrifying trips to high care.” During this time the family stayed at Ronald McDonald House just down the road from the hospital.
The family found the staff at the House to be a huge support during their eight months there. “Every staff member is 100% perfect for the job they are in,” says Bronwyn, “having lived there for so long the staff become like family. They have been there for us through many tough moments.” Bryn refers to the House as “Old McDonald’s House” and it became his safe place this year; whenever he was feeling unwell in hospital or during an outing, he would say to his parents, “back to Old McDonald’s House.”
A special highlight for Bryn were the resident teddy bear and bunny – George and Mildred – whom the staff set up in ingenious ways each morning. “Bryn is a shy wee man but this was something for him to look forward to, it would bring him out of his shell,” explains Bronwyn. The family also found the bonds they formed with other residents to be integral to their journey, with Bronwyn saying “no one truly understands the terrible journey we’re on like the other CHOC families. The time spent sharing, crying and laughing did wonders for us.”
The family qualified for funding to travel to Atlanta in America, for Proton Therapy: a type of radiation that is more precise and slightly safer for Bryn’s developing brain. Bryn had 28 sessions and the family were in the States for seven weeks in total. While the staff and treatment were world class, they missed Aotearoa and were counting down the days until they could return to Ronald McDonald House. “We packed that first overnight bag to travel to Auckland on January 12th 2022, and 251 days later Bryn finally got to return to his home,” Bronwyn says.
Last week Bryn had his end-of-treatment MRI which showed no tumour growth - this a massive win. He got to ring the bell and put his name stamp on the ward Giraffe which signifies the end of treatment. Bronwyn says that Bryn is doing the best they’ve ever seen him, noting small wins such as hearing him sing in the car and chat away to himself, laughing and smiling more often and giving high fives, fist bumps and cuddles.
From here Bryn will have hearing aids fitted due to hearing loss from chemo. He will also have an MRI every three months to check if his cancer has returned. So although the tough treatment is over, the family’s life is now lived in three month chunks.
The family still visits the House for Bryn’s check-ups and are warmly received by the team. Bronwyn explains “Ronald McDonald House is a very special place filled with the most kind-hearted and generous people.
“We are forever grateful to you all for providing us a home this year, and helping our family through the toughest time of our lives.”