Blood cancer patient Maureen King has flown out to China for costly experimental cancer treatment her family hopes might extend her life.
And in a twist of fate, her former partner and father of her children Jeff King has now discovered he has the identical condition: multiple myeloma.
“It’s just very traumatic,” son Alexander King told the Herald.
“It’s like your world, everyone around you is dying; your world is falling apart. It’s like normality is kind of done and nothing else really matters.”
Medical experts have told the family a double parental diagnosis like this is exceedingly rare: about one in 10 million.
There is no cure for multiple myeloma. Next week Jeff will learn roughly how long he has to live - and the family has made a plan for what they’ll do if his time is short.
Medication is the only way to extend life expectancy when you have multiple myeloma, and some of the medications cost $200,000 for a year’s supply.
Maureen, 70, was diagnosed with the blood cancer about eight years ago.
In late July she was preparing to fly out to China for an experimental CAR-T cancer treatment trial – which she has been warned might kill her – when her 73-year-old ex-partner Jeff was diagnosed.
Jeff has already been told his cancer is terminal and on Tuesday a specialist will provide him with an estimated life expectancy.
“It just seemed too cruel that after everything, one week out from going to China I learned [about dad’s diagnosis]. It just seemed too completely cruel that that could happen” Alexander said.
The double diagnosis sent shock waves through the family. Alexander quit his job as a barber.
His sister Brydie had to go to hospital for observation after her blood pressure soared with stress.
“We handle it very differently, we’re both at the same level of devastation,” Alexander said.
Alexander flew to China to accompany his mum on Wednesday, while Brydie remained in Christchurch to care for their father.
In the countdown to the departure, the King family spent as much precious family time together as possible: including bowling together, and special dinners.
“Every night we’ve done something,” Alexander said.
“We’ve just hung out at each other’s houses. I’ve been taking a lot of photos.”
He said his dad was “a wreck”.
“He doesn’t talk much now,” Alexander said. “He thinks it’s the last time he’s going to see mum.”
Multiple myeloma can go into remission for several years via medicine and treatment.
But relief from medicine is only temporary, with patients having to go on to new medication when each treatment ultimately stops working.
Maureen has been on pomalidomide; the final publicly funded drug available to her in New Zealand. It’s expected to stop working before the end of August, Alexander told the Herald.
Daratumumab – not currently funded by Pharmac – could cost about $100,000 for six months of treatment.
The family has instead opted for Maureen to undergo experimental CAR-T cell therapy in the Chinese city of Kunming.
It will cost them around $100,000 for a single round of treatment that, if successful, could extend her life by two years.
The process will take about three months and see doctors taking T cells from Maureen’s body, before genetically engineering them and then returning them to her body.
It is hoped those enhanced cells will destroy cancer-carrying cells.
Alexander stressed the treatment is experimental, has an estimated 70% success rate and comes with “scary” risks.
“There are so many different side effects that can happen. You could have a stroke, you could get brain damage, you could go into an intensive care unit.
“It could basically kill her. We’ve talked as a family about what happens if she dies there,” he said.
The family has also discussed what they’ll do if Jeff is given only months to live.
If that is the prognosis, Alexander will return from China to spend time with his dad, and Brydie will fly to China to support their mother.
Alexander said the financial burden on the family had been “insane” in the lead-up to heading to China and Jeff’s diagnosis had added another level of “stress”.
He said support the King family had received via donations – including a Givealittle fundraiser – was helping pay the treatment in China. An anonymous donor contributed $10,000.
In March, Auckland Hospital haematologist and University of Auckland associate professor of medicine Dr Rodger Tiedemann told NZME patients with multiple myeloma lived longer on daratumumab.
Myeloma New Zealand - a non-profit organisation supporting those impacted by the disorder – has also urged Pharmac to fund it.
Pharmac – the Crown entity that decides on public funding of medicines - works on a limited budget.
It has assessed cost, comparable cost and efficacy as well as the estimated costs and benefits to the health system.
“The ranking of the updated proposal for daratumumab, and the budget currently available to us, unfortunately means we are not able to fund daratumumab at this time,” Pharmac said when it confirmed the drug’s non-funding in July.
“We appreciate the strong advocacy of consumer groups on behalf of people with blood cancers, and the clinicians treating people with these conditions. We’re committed to keep working with them.”
Pharmac has not ruled out funding daratumumab for blood cancer patients in future.
Neil Reid is a Napier-based senior reporter who covers general news, features and sport. He joined the Herald in 2014 and has 33 years of newsroom experience.
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