Australians have been following the highs and lows of Ned Isham’s cancer journey since he was diagnosed with acute lymphoblastic leukaemia (ALL) at two in 2012. Unfortunately, on this Rare Disease Day 2019, we share devastating news.
Sadly, just days ago, after a jubilant return home for Christmas in Tasmania, his parents have announced that Ned’s cancer has made an aggressive comeback.
“[It] has been rapidly taking over his bone marrow, much to our anguish and horror,” Emily and Seth shared in their blog earlier in the week.
Despite the young couple doing all in their power to ensure their boy had access to life-saving treatment, including uprooting the family to Seattle for CAR T cell treatment last year, this relapse means they are left with no further viable treatment options.
This photo of Ned was taken in March 2018 as the family made the financially crippling decision to seek treatmet in Seattle. At the time Emily wrote "It horrifies me that Ned's disease is rapidly proliferating, though he still looks so well."
In the months remaining, the family plan to create precious memories and spend as much time as possible together. Something Emily reminds everyone to think about.
“…though much of parenting and life is really difficult, it’s so important to really indulge and “be” in those golden moments. Just be. In each moment,” she said.
“We are feeling extremely thankful that we’ve had these last two months of blissful ignorance back at home in Tasmania – time that was bought by each of the previous treatments,” said Emily.
Fact: 50 per cent of rare diseases affect children and cancer is one of them
With almost 1,000 children diagnosed with cancer every year in this country, and an estimated 30,000 living with the late effects of their treatment, it’s hard to believe the disease is described as rare. Information released by Rare Disease Day reveals why.
Characteristics of rare diseases
To families affected by childhood cancer, these descriptions are all too familiar.
More than 6,000 rare diseases are characterised by a wide range of disorders and symptoms that vary not only from disease to disease, but also from patient to patient, suffering the same condition.
Patients’ quality of life is affected by the lack or loss of autonomy due to the chronic, progressive, degenerative, and frequently life-threatening aspects of the disease.
What will make a difference
Given the rarity of many childhood cancers, sample sizes for scientific study are too small to gain meaningful insights.
Research needs to be conducted on a global level to not only get the numbers required, but also to ensure experts, scientists and clinicians are connected. International clinical trials lead to patients benefiting from pooled resources across borders.
Associate Professor Tom Revesz at Women’s & Children’s Hospital in Adelaide is currently leading an international investigation through ANZCHOG (Australian and New Zealand Children’s Haematology / Oncology Group) with the aim to improve survival for children and adolescents who, like Ned, have been diagnosed with high-risk relapsed ALL.
Read more: IntReALL-HR
“It has been a great personal experience for me to see the incredible improvements over time in the treatment results for ALL,” said Associate Professor Revesz. “Unfortunately, a small proportion of the children still relapse and the treatment results are not good enough with current therapies,” he said.
The Hungarian born clinician/scientist has been a passionate advocate for finding more effective therapies for children with relapsed leukaemia ever since his arrival in Australia in 2004.
In July 2018, the Senior Haematologist-Oncologist was awarded funding support from The Kids’ Cancer Project to run the high-risk arm of the IntReALL relapsed ALL trial in Australia.
“Research funding provides an invaluable resource for both clinical and laboratory research,” he said. “Most of the current treatment strategies came originally from academic research, partly supported by government funding, partly by philanthropic organisations.”
This complex trial will hopefully result in improved outcomes for these vulnerable children, and give families like the Ishams more options in the future.
Read more: Edward Isham.
Photo credit: Lisa Kuilenburg
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