Posted On: April 12, 2018
Two devoted families from opposite sides of the country are experiencing the same gut wrenching reality. The treatment didn't work.
In the space of ten days, two children who have been the face of campaigns for The Kids’ Cancer Project learned their treatment failed to stop the spread of the cancer they'd been diagnosed with.
Grace from Western Australia beamed through the 2017 Spring Appeal while Ned from Tasmania lead the charge for Christmas. Both campaigns raised hundreds of thousands of dollars going toward scientific studies to find better treatments for kids like them.
The children's mothers mournfully broke the news in their blog posts.
"It is with complete sadness that I must share some devastating news with you all, Catherine wrote. Our delightful Grace Alice has relapsed with leukaemia. At this stage it appears to be the same type she fought last time."
Not only have cancerous cells been found in her bone marrow, Grace also has a 15 centimetre soft tumour between her bladder and abdominal wall.
It's a bitter blow for the primary schooler who early this year was freed from her nasogastric feeding tube and be able to take a packed lunch like the other kids in her class.
From their temporary home in Melbourne, Ned's family learned the bone marrow transplant from his little sister Eleanor was not successful.
"As I write this, it horrifies me that Ned's disease is rapidly proliferating, though he still looks so well," wrote Emily. "Any small amount of hopefulness entirely extinguished is oh-so bleak and heartbreaking."
Treatment avenues for Ned have been exhausted in Australia so the family have decided to relocate again, this time to the United States of America in order for the 5-year-old to be part of a clinical trial.
"This particular trial in Seattle has been running for several years, putting 80 percent of patients like Ned into remission," Emily explained. "Given Ned's current disease progression, his treatment history, genetic makeup and type of leukaemia, this is what our medical team strongly recommend we pursue as there's no viable similar trial here in Australia (although there are several pending)."
The family are incredibly grateful to an anonymous private donor who provided the finances to make the travel and treatment in the US possible.
Meanwhile, young Grace's treatment plan has commenced in Perth. Within a few days she was in theatre to have a central line inserted so chemotherapy, medication and fluids can be administered easily. But for someone so young, it wasn't the only procedure she had under that general anaesthetic.
"She also had a bone marrow aspirate, a lumbar puncture, intrathecal chemo and biopsy of her abdominal tumour," said Catherine. "It all went well, but she woke in recovery in a great deal of pain."
In this age of incredible technical advances, the procedures both children have endured seem so antiquated. Funding is urgently needed to spearhead scientific advances that will improve treatment and minimise the risks of relapse.
And while it's hard to read posts like this, picturing parents desperate and drained huddled over little bodies languishing in sterile hospital rooms, we know those same families draw strength from their little heroes.
"It is so sad that Grace is comfortable with spending so much of her life in hospital," said Catherine. "But that's the strength, positivity and tenacity that got her through the first time round. It is those qualities that will get her through it this time too."