STEP UP for Kiwi kids like Toby

 

Nine year old Toby’s cancer journey began with a seemingly minor illness but he quickly became so unwell he was admitted to hospital. Tests revealed he had Burkitt’s lymphoma, an aggressive cancer that affects the body’s lymphatic system. It was a huge shock for the whole family.

Five rounds of gruelling chemotherapy followed, but nothing seemed to be working. Toby’s mum and dad, Carolyn and Ben, were given the devastating news – Toby’s cancer was growing. He would need more chemo and a Stem Cell Transplant.

Despite his doctors’ best efforts the additional chemo didn’t work – the lymphoma was progressing and a Stem Cell Transplant wasn’t possible. The family were running out of options.

The only hope was to get Toby onto a clinical trial for a new kind of cancer treatment called CAR-T cell therapy – at the time, it was only available as part of a clinical trial overseas. Tristan, Toby’s oncologist, found a trial that would take them – it was in Seattle. As Carolyn explains:

“The decision was easy to make because we knew if we stayed here Toby was unlikely to be alive in five or six weeks’ time.
Before we left Tristan said to Toby “you’re a really brave boy and what you are doing is amazing because no matter what happens it’s going to help other children… Toby really understood that.”

 

Toby, Carolyn and Ben with Toby’s younger brothers, Oliver and Felix enjoying some family time during Toby’s treatment

In Seattle the doctors harvested Toby’s T-cells and he had three more rounds of chemo. His T-cells were modified to fight the cancer before being given back to him:

“Initially there wasn’t a response and Tobes was in ICU – then suddenly they could see the T-cells were multiplying – it was great news. But cancer is a cunning thing and the T-cells couldn’t find their target.”

Toby was really unwell but there was one more thing the medical team could try – Pembrolizumab (Keytruda) an immunotherapy drug used to fight other kinds of cancer, there was a chance it could help his T-cells find their target. Carolyn explains:

“It was amazing it was like a switch being turned on – he had been on oxygen and he suddenly pulled his mask off …I knew he was feeling better because when I tried to put the mask back on he got grumpy with me! A week after that they moved him out of ICU.”

 

 

Fern watching over Toby in hospital

Toby started to show some small signs of improvement and after a couple of weeks was well enough to be transferred by air ambulance to Child Haematology and Oncology (CHOC) at Christchurch Hospital:

“Going through the doors of CHOC was like coming home – these were the people who had cared for Tobes and it had been his home for months and months – it even smelt familiar. It was amazing to be back there and we still had hope that the T-cells would do their job.”

The family were only back for two days when the team at CHOC had to deliver some terrible news – Toby’s cancer was growing again.

There was still a glimmer of hope – Toby’s oncologist got special permission to give him two more doses of Pembrolizumab. Tragically it wasn’t enough to put Toby’s cancer into remission:

“We did ask if we could take him home to Dunedin even just for one day but he wasn’t well enough.  So we surrounded Toby with everything he loved, family, friends, his gem collection… even our dog Fern was able to be with him.”

Toby’s last days were filled with love and his legacy lives on in the thousands of people his clinical trial will benefit now, and in the future.

As Carolyn says:

“Research in immunotherapy is progressing rapidly – chemo is pretty brutal so if something like immunotherapy could take its place even for some cancers – that would be great. We hold onto the fact that Toby helped other families – his trial moved research forward – he would be really proud of that and we are too.”