PRAYERS FOR NED
Little boy faces biggest battle
IT’S a lovely family portrait like many which will be taken this Easter.
But behind the smiles of the Isham family is a heartbreaking story.
Seth, left, and Emily Isham, right, treasure their children Lucy, 9, left, Eleanor, 2, Ned, 5, and Gilbert, 7 months. For nearly four years, the Kingston family has suffered through a battle with cancer.
Ned was diagnosed with acute lymphoblastic leukaemia when he was just two and last year the family relocated to Melbourne so Ned could receive a bonemarrow transplant from his little sister Eleanor at the Royal Children’s Hospital.
After months of agonising treatment, the early signs were good. But this week the Ishams received the devastating news that Ned’s transplant had failed failed. Now his hope rests in a treatment thousands of kilometres and hundreds of thousands of dollars away.
THE author of Tasmanian Ned Isham’s story has a dramatic way of closing each chapter.
Just as the pen hovers to put a full stop on one journey, so life can more closely resemble the version Emily and Seth once dreamt for their son, the page is ripped away.
Last June, the Ishams could almost touch the magic threeyear mark — cancer treatment’s Holy Grail of remission — only for tests to show Ned’s cancer had returned, just after his fifth birthday.
At the end of November, Ned’s two-year-old sister Eleanor donated her bone marrow in what was hoped to be a lifesaving transplant at Melbourne’s Royal Children’s Hospital.
The Ishams had let themselves think about ringing the bell at the oncology ward entrance, signalling the end of almost four years of cancer treatment. They had started to consider the thought of a welcome-home party, where they would show off their miracle son Ned, the hero-donor Eleanor, their new son Gilbert, and Lucy their growing nineyear-old. But the ending to that chapter was abandoned.
The bone marrow transplant didn’t work. Even though Ned has started to look healthier than ever since being diagnosed with acute lymphoblastic leukaemia at age two, tests have shown cancer cells are replacing his healthy immune cells.
“It’s one thing for us as parents to accept it hasn’t gone the way we want it, but to convey to the kids — especially Eleanor when she’s older — that you did your best, that’s going to be really hard,” Dr Isham said.
If this was Ned’s story four years ago, this is where the full stop would rest and his story would end. But much has changed in cancer treatment since he was born.
For the past couple of months, Ned’s oncologist Rachel Conyers has been working to snare him a place on an immunotherapy clinical trial overseas.
The RCH was part of an international trial of CAR Tcells in 2015, which was able to help 80 per cent of high-risk patients into remission.
But Ned hasn’t got time to wait until the next stage of the RCH trial reopens. Instead — after nine months away from home, nine months of Emily and Seth tag-teaming between an isolated child in hospital and three other children in a two-bedroom apartment, away from Seth’s job as a high school art teacher and Emily’s work as a GP obstetrician — the Ishams will travel to Seattle in May for CAR T-cell therapy.
In a heart-wrenching blog post written by Emily, she says the Seattle trial has been running for several years.
“This is what our RCH medical team is strongly recommending we pursue given there’s no viable similar trial here in Australia that is currently entirely open and suitable for Ned (although there are several pending),” she writes.
“It does unfortunately come at enormous, prohibitive cost, and for this, we must humbly ask for some support along the way because we are ever so grateful for how much our village have uplifted us and carried us to this point.
“We know we are Ned’s parents, and he is our responsibility, and we will continue to do our utmost to save Ned’s life and raise all our children with love. But though we are exploring every possible avenue for us to finance the upfront cost of Ned’s treatment as much as possible, we’ve sadly found ourselves in the desolate position of falling short and needing to plead for help because we just simply cannot do this alone.”
The Ishams will return home to Kingston next week and into a house full of moving boxes they never got to unpack before Ned’s shock relapse.
They have a month to raise the estimated $680,000 needed for medical expenses, flights and accommodation before they leave for the US. Yesterday, on Good Friday, Emily and Seth’s prayers were echoed in their church of St Clements and across the Southern Christian College community.
Ned prays his leukaemia will get better. He has prayed, matter-of-factly and without emotion, not to die. He has prayed for the parents of the little friends he has lost along the way.
“Good Friday is so important to us, for what it stands for as a new life, and sacrifice for a second chance,” Mr Isham said. “That’s what we’re after, too.”