Kids like Ned urgently need better treatments

Kids like Ned urgently need better treatments

In 2017, the Isham family received the most devastating news about their son's cancer.

In 2017, the Isham family were preparing a party to celebrate the end of 5-year-old Ned’s cancer treatment. That is until they got the news they never expected to hear.

Everlasting love

Tasmanian GP Obstetrician Emily Isham and husband Seth were eagerly awaiting the birth of their fourth child when they received devastating news.

The young family of five was soon to become six with a baby due in August, the count-down to an island holiday had commenced, and an ‘end of chemo party’ for fun-loving 5-year-old Ned was in the making.

The R word

But the shadowy spectre that is relapse quickly dissolved the bright future that lay before the Isham family. To say they had been blind-sided was an understatement.

"Relapse had been the baneful niggle of our three-year relationship with Ned’s leukaemia,” said mum, Emily.

“But he’d been at kindergarten all year with no setbacks, our eldest daughter Lucy had started Grade 3, we’d just moved into our new home, and despite morning sickness, I was enjoying a much-anticipated pregnancy. The fear of the cancer returning had definitely fallen to the backburner.”

Ned was two when he was diagnosed with high-risk pre-B cell acute lymphoblastic leukaemia (ALL) in 2014. In eerily similar circumstances, a new baby was on the way back then too.

Eleanor came into the world in March 2015. Her name is Greek for ‘bright, shining one’. And while her arrival, like every child in the family, was seen as a great gift, they had no idea how precious that gift would become.

New world order

Reeling from the news that Ned’s maintenance chemotherapy hadn’t been working and that leukaemia cells had infiltrated 89 per cent of his bone marrow, Emily could feel her world caving in.

"Seth and I were already about to fall in a heap from the year that was,” Emily said. “Yet now we faced such devastating news. We immediately had to make and act on numerous practical decisions that would affect the whole family."

Those plans included relocating the clan to Victoria for the estimated 9 months of specialist treatment Ned would need, organising extended leave of absence from work, figuring out other means for support, establishing which hospital to give birth in, finding a temporary school for Lucy and just hoping that Eleanor would be able to go with the flow amid the chaos.
On arrival at The Royal Children’s Hospital Melbourne just one day after the terrible news, Ned was presented with a gruelling treatment plan. 
“Over the years, I've observed cancer battles portrayed as bed-side chemotherapy infusions, hair loss, some nausea and pain,” said Emily. “It’s a falsely palatable perception of its invasive reality. Particularly in context of leukaemia relapse which has a much more intensive treatment."

"Our world is a chemotherapy schedule that’s constantly changing, oral meds, procedures and surgery. Then there's the treatment of all the side effects. On top of all that there's unscheduled, heavy-hitting regimen to fight random infections.

“On a daily basis, we deal with Ned’s nausea, inconsolable crying, pain from his Hickman line (a central venous catheter), diarrhoea, screaming tantrums due to steroids, oral medication administration, night waking, irritability, fatigue, muscle aches, sore eyes, ulcers, slow heart rate and arrhythmia scares, food demands coupled with immediate refusal. The list goes on."

"Despite hating the damage chemotherapy can cause, Seth and I cling to this lifeline offered and proven by some of the best scientists in the world.

During what can only be described as dark days, fair-haired and healthy, Gilbert (meaning: shining pledge) was welcomed to the Isham brood in late August.

“The whole family is excited by his arrival,” said Emily. “Lucy loves the new gender balance, he’s brought out a gentleness in Eleanor (who had lots of prior practice with dolls), and Ned relishes cuddles during daily visits.”
Genuine joy has been coupled with heartache for the wife and mother who spends nights alone with two daughters and a newborn in temporary accommodation thinking about Seth and Ned in hospital, missing out on most of the precious newborn time.

Donor delight

The next phase of Ned’s treatment, scheduled for October, is a bone marrow transplant, a procedure that relies on a compatible donor. Two-year-old Eleanor came shining through with her sibling stem-cells described as ‘gold standard’.
It was another bitter-sweet moment as cheers of delight turned to anxiety at the prospect of both kids going under general anaesthetic.
“Being in a state of emotional fragility already, this is challenging for us both,” said Emily. “It means another of our precious children will have medical procedures due to leukaemia - the disease has become an enormous monster we’re battling, and it seems to be spreading its fingers further and deeper into our lives.”

"Months ago I lost count of how many general anaesthetics Ned’s had,” said Seth. “But every single time I carry his vulnerable body into theatre it takes an emotional toll. And now we’ll be handing over our even smaller child.

Following the transplant, Ned will be in isolation for weeks unable to see his sisters and baby brother, even at Christmas time.

"This was a rather grim revelation for us,” said Emily. “Our family loves Christmas. Ned particularly looks forward to hanging out with his siblings and getting stuck into the cooking and decorating. Sadly, this year we’ll have to have Christmas over Skype."

As this family faces a fractured festive season, optimism and positivity can be tough to sustain.
“I keep casting my eyes furtively back to ‘pre-leukaemia’ times,” said Emily. “Seth and I felt bulletproof, like strong parents with our ambitious plans and healthy children.”

“This experience has challenged my thinking on what happiness is. We've had to readjust our expectations of everyday life. And every member of our little family has had to learn how to make sacrifices gracefully, to become more capable and empathetic.&"

They’re lessons you’d like to think your children won’t have to learn until adulthood. Yet ironically, they often end up teaching us a thing or two as Seth told me, “Ned’s a resilient kid, we can all learn from him.” 

Read more: Emily provides regular updates on Ned's progress in her heart-rending blog

Scientific approach

Professor Johnstone and his team at the Peter MacCallum Cancer Centre are working to help kids like Ned. He’s looking at a set of genetic changes that drive cancer progression and therefore promote resistance to current therapy that may be exploited to improve treatment. And he’s making headway, but more funds are urgently needed.

"Thanks to advances in science, it’s now possible to target these genes and turn the cancer’s strength into weakness,” said Professor Johnstone. “By developing novel, more specific therapies, it will be possible to improve chances of survival for children with poor prognosis leukaemias."