Byron’s story

“My first question to the doctor was is this life-threatening, the answer, yes, it can be."

Byron was just 17 months old when his medical journey began, and when that journey is still going at 13 years old, brave doesn’t seem a big enough word to describe this truly amazing young man.

Byron was diagnosed with leukaemia in April 2008, following a check up for some marble sized lumps at the back of Byron’s neck.  A whirlwind of Doctors, nurses, tests, scans and questions from an Oncologist ensued, with chemotherapy commencing that same day.

“My first question to the doctor – “is this life threatening”, was met with – “Yes, it can be”.  We were just over five months pregnant with our next child and our world was falling apart.

The Children’s Hospital Foundation provided comfort and an opportunity to talk to a non-clinical person, they provided a starter pack which provided some creature comforts which helped to provide a sense of normality during this terrifying and surreal time.” Angela, Byron’s mum said.

This diagnosis started a journey that no family should ever have to face.  For three years Byron fought leukaemia and endured many tests, scans and procedures, including four days in ICU, 10 months of intense treatments of numerous chemotherapies, anaphylactic reactions to treatment, a serious liver disease and many lengthy hospital stays.  Oral chemotherapy followed with monthly lumber punctures, spinal chemo and steroids.

“We spent as much time at the hospital with speech therapists, occupational therapists and physiotherapy as we did for treatment and oncology. Byron struggled with high anxiety, walking, talking and eating, all things he could do prior to getting sick” Angela said.

On August 22, 2011, Byron finished treatment and was officially in remission, but this was not the end for poor Byron.  Sadly, two years later following similar symptoms, tests showed the leukaemia had returned and Byron, now six, faced more treatment and another battle.

Chemotherapy and total body radiation followed and the decision that he required a bone marrow transplant.

“During this treatment we were introduced to music therapy, which is funded by the Foundation, and it soon became the highlight of Byron’s days. He loved to have the therapist sing and play music to him, especially on the days he wasn’t up to joining in. We spent more time in hospital again, and when the time came for transplant, we spent five and a half weeks in hospital in complete isolation and our now five-year-old daughter, Makhiyah, could only see us through a window” said Angela.

Byron spent six years post-transplant requiring regular medical appointments, ongoing testing and reviews, but he had managed to return to school and was leading a strong and healthy life. Then in June 2019 a new lump appeared this was monitored and the hope was it would be ok, but sadly in February 2020 a third blow was dealt to the family when a new cancer was diagnosed.  This time, it was mucoepidermoid carcinoma, which is rarely seen in a child. Byron had a procedure to remove the cancer and following consultations with several head and throat cancer specialists, it was determined that Byron would require radiation to completely eradicate the disease.

Byron underwent radiation daily for six weeks. He again missed school, lost part of his hair, and suffered radiation burns and mouth ulcers. He is now recovering well but faces a lifetime of tests and reviews to check for any abnormalities.

Despite all he has been through Bryon is like any other teenage boy and enjoys playing on his computer, watching and making YouTube videos, and spending time with his friends. He quite rightly proudly shows off his incredible journey through his bravery beads, a program also funded by the Children’s Hospital Foundation.

“The bravery beads are a fabulous way for Byron to be able to show others through symbols of beads, the experiences he has had, the procedures he has gone through and what he has endured. These beads will provide a lifetime of reminders of the strength and resilience he has within himself.

As a parent of a child with cancer, we have no control over what’s happening in our lives and yet we reassure our children that they can do this, we have their back. So, in turn the Children’s Hospital Foundation has ours. They provide programs, volunteers and opportunities to allow the children moments to take their mind off what is happening for them and allow the parents the opportunity to catch their breath” said Angela.

Other ways you can help

Everything we do for sick and injured kids is made possible by the generosity and support of our donors, partners and the community.