As a family we have experienced first-hand the difference research is making.Kim, Declan's mum
Declan was diagnosed with cancer just before his fourth birthday.
Declan was diagnosed with stage 4 advanced widespread neuroblastoma just before he turned four. Neuroblastoma is the most common solid tumour of young children.
Declan had a scan which confirmed that he had a tumour in his abdomen the size of his dad’s fist. It was stage 4, in his bones and bone marrow as well. He started treatment straight away.
Declan’s treatment began at Princess Margaret Hospital, Perth with five gruelling cycles of chemotherapy treatment, followed by a nine-hour operation to remove his tumour.
Unfortunately, with high-risk neuroblastoma like Declan’s, there is only a one in two chance of survival and if a child relapses after initial treatment, there are extremely limited treatment options.
During his treatment, Kim and Simon tried to keep things as normal as possible for the whole family. But Declan had to give up swimming, which he loved so much.
“It was also really hard on Brodie, Declan’s younger brother, because he missed out as well. But it wasn’t fair to take Brodie swimming and have Declan just sitting and watching.”
In August 2013, Declan was declared in remission. It was a big day for the family. After several more months of gruelling treatment, including radiation and immunotherapy he was allowed to go home two months early, because he had been handling it so well. Sadly, it was not to last.
By January 2015, scans showed two new tumours, one on his ninth vertebra and another on his left hip - Declan had relapsed.
We heard about a DFMO trial being run at Sydney Children’s Hospital, Randwick, which was based on research undertaken by Children’s Cancer Institute. It was our only hope.
Declan was enrolled on the DFMO trial in April 2015 and the early results were very positive. After 4 months, the tumour on his spine had gone and the one on the hip had reduced. Declan’s scan in December 2015 showed no further progression.
We knew if he relapsed there weren’t any options. If it wasn’t for research, this trial wouldn’t have happened – and we wouldn’t have had Declan for as long as we have.”
The DFMO trial is being Led by Dr David Ziegler, who is both a group leader at the Children’s Cancer Institute and an oncologist at the Kids Cancer Centre, Sydney Children’s Hospital, Randwick, the trial is being run in 14 hospitals across North America, as well as at Sydney Children’s Hospital, Randwick in Australia.
Declan’s Brave battle
Sadly, June 2016 scans showed that the tumour on his hip had grown and in May 2017 Declan passed away after an incredible brave battle against childhood cancer. Everyone who ever met Declan was touched by his determination, stoic nature, sense of humour and absolute wisdom & he will be greatly missed.