Solid cancers are also being targeted for CAR T-cell treatment (to read more about NZ-led advances in this treatment, go here). In 2019, a new trial offered a glimmer of hope for a young girl from Canterbury.
Elyse and Rohan Guise will never forget the day in January 2020 an oncologist delivered devastating news. The CAR T-cell therapy their daughter Nora had received as part of a paediatric trial for her metastasised liver cancer hadn’t worked. Nora was just six when she died on February 1, two weeks after her parents were told that seven weeks of treatment at Texas Children’s Hospital had failed to prolong her life.
But what a gift the child gave the medical community – and that was how the family had approached the treatment: if it didn’t save her, maybe it would help another child.
Elyse sends through photographs of her late daughter and younger child, Thea, now nine. In all the images, Nora beams with the same happy smile as she goes through the treatment that her parents hoped would save her life.
Nora was 5 when doctors found a large tumour in her liver, which had metastasised to her lungs. She had four rounds of chemotherapy, which didn’t work and made her very ill. There was surgery on her lungs, and she nearly bled to death.
But, her mother tells the Listener from Rolleston, Canterbury, despite this suffering, Nora was “a trooper. She was grown-up beyond her years. But she was also so little and we just had to get on with it. You have to keep going.”
Her oncologist told Nora’s parents her bone marrow would never recover and to prepare for palliative care. But then he offered a glimmer of hope: Texas Children’s Hospital was doing a stage 1 paediatric trial using CAR T-cell therapy for solid liver tumours. Elyse was surprised, as she thought the treatment was only for blood cancers.
Nora was enrolled as patient No 2 and her family prepared to raise the $200,000 needed to take her to Texas. The manufacturing of T cells was covered but they had to pay for anything else.
Elyse and Nora went in 2019 to meet the team, who took Nora’s blood over two days to make the T cells. A few days later, they returned to New Zealand to continue fundraising, while the medical team manufactured the T cells.
Five weeks later, they were back in Texas for four weeks and over that time she was infused with the T cells. “It was crazy – all this hope was in this tiny little tube,” Elyse says.
On the last day of the trip, doctors did a blood draw. The family farewelled the Texas team and the lead doctor revealed the reassuring news that Nora’s cancer levels had dropped, which suggested the treatment was working. The family returned to New Zealand, where Nora’s blood was regularly taken and couriered to the US.
It was then that they got the dreadful phone call. The CAR T treatment hadn’t worked.
Elsye asked the oncologist how long their daughter would live, and he estimated 6-12 months. The parents set out to make those months as memorable as they possibly could, but had only two more weeks with Nora.
Whenever she has wondered if the family did the right thing, Elyse remembers a few words the oncologist said to her.
“He said, ‘Look, there’s walking medical research.’
“We went over to the US and we took this huge risk. It didn’t work for Nora. But it clicked something in my brain. It was so big-picture. What we went through might help another child and another family.”
Elyse can’t stress enough how much it would mean for this therapy to be available in New Zealand, and how, down the track, CAR T might help fight other types of cancer.
“If a family doesn’t have to go through the stress of that, and living in another country for seven weeks, that would be wonderful.
“We did everything we could, so I have no regrets. We did everything we could to try to save her.”
