Kate's journey of healing and hope
When primary school teacher Kate began feeling breathless in April last year, she didn’t panic at first. “I just thought, ‘I’m a teacher at the end of term – I’m tired!’”
But when it became more painful and difficult to breathe, the Christchurch mother of two visited her GP, who ordered blood tests. That same evening, she got a phone call that changed everything.
“All my blood cell levels were low,” Kate recalls. “I needed to go to the hospital for a blood transfusion.”
When she turned up at the hospital, she expected to have the transfusion as an outpatient and head home later that day. But she was in for a shock.
“They admitted me onto a ward where people were walking around with scarves on their heads,” Kate says. “I remember thinking, ‘Holy s**t, I’m on a cancer ward.’ That’s when I realised what was actually going on.”
Kate was told that she likely had a blood cancer, but it wasn’t clear which one.
“It turned out I’m non-secretory,” she says, “so they can’t pick it up with blood tests – only with a bone marrow biopsy or a PET scan.”
In mid-May, Kate was officially diagnosed with myeloma.
A biopsy showed her bone marrow was 90% cancerous cells. She also had holes throughout her bones, which explained the back and hip pain she had been seeing a chiropractor about.
Shortly after her diagnosis, Kate reached out to her local Blood Cancer NZ Support Services Coordinator, Kate McHardy. Having that one-on-one support and meeting other patients she could relate to helped her feel less alone as she began treatment.
Kate was started on a regimen of lenalidomide, dexamethasone and bortezomib. “I was on that for about three or four months, and then in August, we looked into paying for daratumumab,” she says. “We found out you could get a deal if you switched from lenalidomide to thalidomide, where they would pay half.”
The treatment came at a significant financial cost.
“I ended up having 11 Dara shots,” Kate says. “I paid $5,000 11 times, plus administration fees – only to find out that Dara didn’t work for me.”
At the beginning of November, Kate’s doctor sat her down for a frank conversation.
“By this stage, I’d had five bone marrow biopsies, and the treatment had really done nothing,” Kate says. “It wasn’t possible for me to have a stem cell transplant. My haematologist basically said, ‘New Zealand can’t do anything more for you. You need to look at CAR T-cell therapy.’”
Suddenly faced with limited options, Kate began searching for other Kiwi myeloma patients who’d had the treatment overseas.
She says, “I remembered reading an article about a woman in Christchurch who’d had CAR T, and I managed to contact her through Facebook. And then Kate from Blood Cancer NZ put me on to another lovely man who’d had it.”
The next day, Kate and her husband, Mike, met with both patients to learn more about their experiences. They’d both been successfully treated in Shanghai, but at different hospitals, and with very different price tags.
After carefully considering their options, Kate and Mike chose a more affordable programme run by Professor Hou, who was trialling a form of CAR T-cell therapy targeting two distinct myeloma markers. Having been given less than a year to live, Kate used her life insurance payout to fund the treatment and travel costs.
On the 10th of December, Kate and Mike set off for China.
“I arrived in Shanghai and had a week in hospital, having all these tests – 25 vials of blood taken,” she says. “It was just bang, bang, bang, bang. Every day, something else. They were so efficient.”
Then, on Boxing Day last year, Kate received her infusion of CAR T-cells.
She and Mike had been told to expect a stay in Shanghai of up to seven weeks. But complications extended their time away from home to ten and a half weeks.
It was an incredibly difficult journey, but one that ultimately gave Kate something she had desperately hoped for: another chance at life.
“I’m in remission,” Kate says, “which in China means there were no myeloma cells in a million cells.”
Returning home was a relief, but it also marked the beginning of a different kind of recovery.
“It all hit me when we came back,” Kate says. “We were both thinking, ‘What the hell did we just do!?’. We were drained, exhausted, emotionally vulnerable. It took about six weeks to decompress.”
Since returning home, Kate has had monthly blood tests. “I don’t get nervous for those,” she says, “because I know my myeloma doesn’t show up in my blood.”
Awaiting her first PET scan is a different story, as it will be the first real look at whether she’s still cancer-free.
For now, at least, Kate is still focused on her recovery and taking each day as it comes.
“Obviously, I’m still really tired, still in recovery mode,” she says. “And I’ve got little to no immunity, so I can’t work.”
But it’s not lost on her how far she has come. Her pain has eased, her quality of life has improved, and she can once again look ahead with hope.
“I’m feeling so, so much better than I felt before I left,” she says. “I’m down to a third of the pain meds that I was on. And I have a stack of library books I’m ploughing through, which is lovely!”
