RMHC VICTAS : Justin's Story

In 1992, 8-year-old Justin’s life was forever changed.

It started when his mum, a nurse, noticed three lumps on the side of his neck. He was taken to the doctor, where he was instructed to monitor the lumps for any signs of change. It wasn’t long after this visit when the lumps had grown and formed into one big lump about half the size of an orange.

An immediate visit to the doctor’s office led to a lumpectomy to have the mass removed and tested. Acute Lymphoblastic Leukaemia, or ALL for short, was the diagnosis. Justin’s parents were shattered by the news, and they asked their family doctor to come to their home and deliver the news to him.

“Unfortunately, he did not give me the full story. He told me I would be going down to Melbourne for further tests. However, I knew better, I knew something was wrong, because all of Mum and Dad’s family and friends had come around to visit the night before we headed to Melbourne. (It is not every day 100 people drop around to your Mum and Dad’s house on a school night, for no reason).”

Hospital life begins

A day Justin will never forget – 7 September 1992 - was his first visit to the Royal Children’s Hospital Oncology ward. Seeing other sickly children in bed hooked up to machines and drips, he realised how serious this situation was. He remembers a nurse explaining that not all of the kids in the ward had the same cancer as him. Some of them did and some of them didn’t, but cancer was treated differently for each person. So, the best thing he could do was focus on himself.

Within the first couple of days of being at the hospital, Justin had his first lumbar puncture. A procedure where he had to curl up in a ball to expose his spine for a doctor to insert a needle and withdraw spinal fluid.

“I was so scared. I think it took 5 or 6 nurses to basically pin me to the bed to help keep me still. I think the biggest thing I was scared of was the unknown. For me, not knowing what was happening made me really apprehensive. I remember just holding my Dad’s hand and squeezing as hard as I could to try and escape the pain. He told me afterwards that I nearly broke his hand!”

The screams of the children being treated

Justin remarks that back then the treatment rooms in oncology wards were not soundproof, so he would be in the waiting room and hearing the screams of the child before him being treated, dreading what he had to endure next.

During his time being treated, Justin recalls feeling extremely fortunate to have the Ronald McDonald House as a home away from home, directly across from the hospital. Not only was the House in Parkville a safe haven during the initial stages of his hospitalisation but he and his family were able to stay there when travelling from Horsham to Melbourne for his treatment. On days when treatment would start with 8am blood tests, followed by visits from the doctor and then treatment, walking out of the hospital at 3pm exhausted – the family were able to walk across the road to RMH Parkville to rest, rather than having to get in the car and drive for four hours to get home.

After two years of Chemotherapy, Justin was told his treatment was complete, although he would have to come back for regular blood tests to ensure the cancer really was gone. For 18 months, he was just happy not to endure any more lumbar punctures!

In January of 1996, a routine blood test picked up an abnormality.

“A sense of dread instantly came over me. For some reason I knew that the cancer had come back, even before we were told. All I could think about, was what I would have to go through again: all the needles, all the blood tests, etc. In my head I kept asking, why me? Why me?”

The nightmare of relapse

His nightmare came true when his relapse was confirmed. He started chemotherapy straight away.

After further treatment, the doctors suggested they try a bone marrow transplant. At this stage, this involved extracting healthy marrow from a donor’s hipbone and transfusing to the receiver. It was suggested the family begin right away with testing immediate relatives for any possible matches. A six out of six match was very rare with a one in 40,000 chance of occurring. Justin’s luck finally turned when his family came back with not one but two six out of six matches.

Both his older brother and sister were matches and both wanted to help, honoured by the idea that they could save their little brother’s life. Further testing showed his sister as the better candidate, and so after another year of chemotherapy, the family prepared for the transplant.

The Bat Cave

Justin had to go through radiation therapy before being transported to what was called the “Bat Cave” at the Royal Children’s Hospital. The Bat Cave acted as an isolation room for patients undergoing bone marrow transplants. Only up to four non-school-aged visitors were allowed to see him, and they had to be in a gown and mask and keep their distance.

On the day of the transplant, as he was hooked up to the donated marrow from his sister, the family received news that his grandmother in Horsham had passed away.

“Looking back on it now, it was almost as if she passed away so that my life could be saved. Or that she hung on so long, until she knew that I was going to be ok.”

10 months of isolation

For 10 months after the transplant, he had to remain isolated. Justin was able to return home but not to school, missing the majority of eighth grade and not returning until October of the next year.

The home away from home that the family found in RMH Parkville was a vital part of Justin’s journey to recovery. He recalls his parents were not in a financial position to pay for accommodation whenever they needed to be in Melbourne for his treatment and check-ups, and having the House across the road from the hospital made their tough time more bearable.

“All throughout my illness, Ronald McDonald House in Parkville was our Home away from home. What an incredible organisation for families with sick children. The welcoming supportive staff, the meals donated by selfless volunteers and fantastic facilities all help families to focus on the health battles their children are facing.

I know there are countless families that owe so much to RMCH.

All I know is that we (my family), were very fortunate to have the support of so many caring and generous people looking out for us. Their constant support and well wishes gave me the strength to overcome my battle with cancer.”