There were three things Toby Robins did not want.
He did not want his death to ruin his family. He did not want his funeral to be sad. And he did not want to be forgotten.
"He was the most amazing boy," says Carolyn Robins, seated with husband Ben and sons Oliver (8) and Felix (11) in the lounge bay window of their renovated Dunedin villa.
"So was I," Oliver quips.
"Yes, you all are. We are very lucky," Carolyn responds with a small laugh before continuing.
"He was so healthy. Super active. He gave everything a go ... an awesome kid."
Toby grew up in this Belleknowes home that his mother and father moved to when he was 18 months old. He went to the local kindergarten and primary school, played rugby for Kaikorai Rugby Football Club.
Then on January 22, 2018, after running a high temperature, Toby was found to have a ruptured appendix. He did not come right after treatment, so was sent for blood tests and a scan and then transferred to Christchurch Hospital. The diagnosis was worse than they could have imagined — Burkitt’s lymphoma, an aggressive form of blood cancer.
"You worry about a car accident and other things like that, which don’t happen, and then you’re blindsided by something you’d never even considered."
The cancer was frightening. The chemotherapy was brutal.
Toby underwent four rounds of treatment but the cancer was still present, still doing damage. More chemo, but the tumours remained, dashing hopes of stem cell therapy.
Toby had just turned 10 when his primary oncologist suggested to his parents that palliative care was probably the next step.
"I said, that’s not an option, please find a Plan B," Carolyn, diary open on her lap, recalls.
The oncologist later came back and said there was a new treatment that just might be an option. He said it was called Car-T cell immunotherapy.
For at least 3000 years there have been occasional reports of cancerous tumours decreasing, or even disappearing, after the person suffered an infection that caused inflammation and a high fever. One of those infections was known during the Middle Ages as St Anthony’s Fire. Caused by eating infected rye grain, St Anthony’s Fire could cause burning sensations, convulsions, gangrene and death. By 1866, getting infected with the Streptococcus pyogenes bacteria responsible for the illness was also known, in some cases, to cause bone cancer tumours to regress.
In 1891, Dr William Coley, a recent medical graduate working at New York Hospital, watched helplessly as the cancer he had tried to surgically remove from a young woman spread and killed his patient.
William decided he had to find a cure.
He combed through hospital records for cases of people who had beaten cancer. One grabbed his attention: a German immigrant with multiple tumours who caught St Anthony’s Fire and not only survived but was cured of cancer.
William searched Manhattan until he found the man, alive and well. The doctor began injecting terminally ill cancer patients with the live strep bacteria, trying to cause an infection that might somehow trigger a cure.
During the next two years, he refined his process and achieved a 50% success rate. But, because the way it worked was not understood, many in the medical community considered him a quack. Worldwide, radiation and then chemotherapy became the go-to treatments for cancer.
During the 20th century, there were significant breakthroughs in immune system research, including the 1980s development of a hepatitis B vaccine (previously thought impossible). Despite that, the idea of an immune system-based treatment for cancer was often dismissed out of hand.
That was the experience of Prof Graham Le Gros, director of New Zealand’s world-renowned independent biomedical research facility, the Malaghan Institute.
"Twenty-four years ago everyone was telling me, ‘Cancer immunotherapy doesn’t work, Graham. Why are you doing it? Stop doing it. You’re wasting money’," he says.
But that is exactly what is now being developed and refined.
Chimeric antigen receptor (Car)-T cell therapies are using the body’s own immune system to fight and beat cancer.
Normally, T cells patrol the body, seeking and destroying damaged cells. But if cancer cells do manage to replicate and grow they can develop ways to hide in plain sight or even deactivate the T cells.
The aim of Car-T cell therapy is to take some of the cancer patient’s own T cells, modify them so they can detect the specific cancer they need to target, multiply them until there are enough to tackle the tumours and then put them back into the patient’s body and let them get to work.
Then Irene Chappell, one of the mature students taking Annie’s film directing course at the University of Auckland, made a short documentary about David.
"When I saw it I thought it had more legs," Annie says.
"I was interested in a possible cure for cancer, as we all are. But I also thought it was a compelling human interest story with good science legs."
Plans for what became the feature-length documentary, A Mild Touch of Cancer, then moved quickly, with Irene as co-producer and Annie as director, producer and sound person.
"I contacted David and before I knew it he was saying, ‘Well, I’m just about to go to New York for my final test’ ... So, I managed to scratch some money together and filmed them every step of the way."
A Mild Touch of Cancer is the latest notch on Annie’s documentary belt. One of New Zealand’s most awarded documentary-makers, she started making films 20 years ago during studies that included a bachelor of science at the University of Otago, a diploma in journalism at Canterbury University, a master’s degree at New York University and a PhD at the University of Auckland.
Her films include Punitive Damage, Georgie Girl, Brother Number One and Kim Dotcom: Caught in the Web.
For this documentary, A Mild Touch of Cancer, David would be the thread linking his story with the stories of others he has been helping to access Car-T cell therapy. Those others are Toby, Kirsty Horgan, of Christchurch, and Mile Nafatali, of Dunedin.
Kirsty’s partner Mick had died of liver cancer less than two years before she was diagnosed with non-Hodgkin lymphoma. After standard treatment failed, Kirsty was one of only a dozen patients accepted into the Wellington-based Malaghan Institute’s phase one Car-T cell therapy trial. Her son Sam went to live with her parents while she received the novel treatment.
Mile, a University of Otago student, had more than six cycles of chemo at Dunedin Hospital but his lymphoma did not go into remission. The cancer in his bone marrow made his body ache so painfully he could not walk.
Car-T cell therapy looked like the best option. Government funding was obtained for treatment at the Peter MacCallum Cancer Centre, in Melbourne.
A Covid-19 outbreak in Auckland almost derailed Mile’s last-chance plans, until an anonymous donor paid the $70,000 cost of a medical evacuation flight across the Tasman.
Annie says she likes "observational" filmmaking; shooting as much film as possible, doing long interviews if necessary, in order to "find the story in the footage".
It was about the only way this documentary could be done, given that it was following cancer patients seeking a promising but still novel cure.
"Car-T cell therapy is a great treatment, but you have no guarantees it will work. And it can have serious side-effects," Annie says.
"You really can’t storyboard it ... This is more about letting the stories determine the shape.
"None of us knew what their outcomes would be, even them."
The documentary traces Kirsty and Mile’s journeys until they get the dramatic news that they are cancer-free. Both continue to get regular tests to monitor their progress.
When Carolyn and Ben heard Toby could get Car-T cell therapy at Seattle Children’s Hospital, in the United States, they had to act quickly.
"The thing about Burkitt’s lymphoma is it is so fast ... it’s so aggressive," Carolyn says.
Extended family generously helped them reach the several hundred thousand dollar cost of the treatment.
On a Friday night, they got the go-ahead from the US hospital. On Monday, Carolyn and Toby flew to the US.
"Since then, we’ve heard you have to have medical clearance to fly. It’s probably good we didn’t know."
Ben and the boys followed the next day.
That was October 12, 2018.
A week later, the doctors were saying it looked like the T cells could not find the cancer targets. They offered to give him a checkpoint inhibitor, a medicine that would take the brakes off his immune system but might also overwhelm his seriously unwell body.
"We felt damned if we do and damned if we don’t," Ben says.
They opted to proceed.
Two days later, Toby took off his oxygen mask and got out of bed.
"It was incredible," Carolyn says.
Just over a month later, Toby was med-evac’d back to New Zealand. He was still quite sick but all the cancer sites were decreasing and his hair and eyelashes were beginning to grow back.
"We could actually see that it was working."
Two days after Toby’s return to the Children’s Haematology Oncology Centre, at Christchurch Hospital, a doctor making a routine examination thought he could feel tumour growth.
The next day it was bigger again.
"They did a CT scan and it was all growing. It was so aggressive," Carolyn says.
"That was the third of December. He passed away on the ninth of January."
"The therapy was working on Toby," Ben says.
"If Car-T cell therapy was standard protocol earlier on in treatment, I think it would have had a much better chance of knocking the cancer right out."
Immunotherapies, such as Car-T cell therapy, hold the promise of a future immune to cancer.
That is still a way off.
At present, about half of the patients with leukaemia and lymphoma treated with this therapy have a relapse within two years. For some, the therapy can also have nasty side effects.
Research and trials are continuing.
The US Food and Drug Administration has approved two Car-T cell therapies for patients with otherwise untreatable lymphoma and for children with acute lymphoblastic leukaemia.
A variety of other Car-T cell therapies are being trialled for cancers including brain cancer, breast cancer, lung cancer, multiple myeloma and ovarian cancer.
New Zealand’s Malaghan Institute, in partnership with Wellington Zhaotai Therapies, is developing and trialling a third-generation Car-T cell therapy and researching the use of Car-T cells for other cancers.
It was during the final month of his life that Toby made known the three things he did not want to happen.
"He said, ‘I just don’t want me dying to wreck everything. And at my funeral I don’t want everyone to be sad’.
"He also said he did not want to be forgotten. He wanted to be remembered.
"Then one night he said, ‘I have had a really good life’. When you hear that from your 10-year-old ..."
So, the memorial service, planned by Toby and held one year to the day after he first became unwell, saw friends and family gather in bright clothing for a celebration of his life followed by a sausage sizzle and ice-creams for the children.
He is certainly not forgotten.
"His death has changed every aspect of life.
"But we try to honour what he wanted ... He would be horrified if he thought we were wallowing.
"Quite often at tea we’ll ask, ‘Is there something you’ve done today that Toby would be proud of?’."
And Toby knew his illness, his experience, his life was contributing to the pool of knowledge that would help beat cancer.
"He understood that from the beginning. His oncologist said to him, ‘Tobes, you’re really brave. And what you’re doing is going to help other kids’.
"That was really important."
Film festival
A Mild Touch of Cancer screens as part of the New Zealand International Film Festival on Saturday, November 20 at the Regent Theatre, Dunedin. The full festival programme is now online at nziff.co.nz. The festival runs from November 5-21.
