I remember thinking, oh, it’s not that bad... we can deal with that.
- Jenaya, Toby’s Mum
Toby was still in his mother’s womb when doctors noticed he had a ‘mass’ on his arm. But it was to take many weeks before his parents would find out exactly what that mass was.
Jenaya and Josh were excited when they found out they had their first baby on the way. The pregnancy was going well, and Jenaya planned to give birth at a birthing centre to keep things as ‘intervention-free’ as possible.
One night at home, Jenaya had a minor fall. Although she thought nothing of it, her midwife suggested she get checked out. It was at this point, 28 weeks into the pregnancy, that an ultrasound revealed a mass growing on the baby’s arm.
I went in for scans every two weeks, not knowing if I was going to have to deliver then or not.
- Jenaya, Toby's Mum
‘They said it was probably a hemangioma, which is a type of birthmark, but that they were going to refer us to the MFM [maternal foetal medicine specialists] team,’ Jenaya recalls. The team confirmed the mass was most likely hemangioma, although sarcoma [a type of cancer] was mentioned as an ever-so-slight possibility.
‘Because of all the blood vessels in the mass, it was affecting his heart. I was really stressed. Could he pass away in my belly, and I not know? Am I going to see a heartbeat at the next scan? Could this mass just rupture and bleed out? All these worries were going through my mind.’
When Jenaya first laid eyes on Toby, she thought his condition wasn’t as bad as anticipated. ‘It was a couple of hours later, when the hustle and bustle had died down, that I got to hold him and really have a look,’ she says.
‘There were patches and lumps and really deep crevices between them all. His upper arm was enlarged, and there was a hard mass on the back of his shoulder.’
Toby was referred to the Vascular Anomalies Clinic in Brisbane for follow-up in a few weeks’ time.
A multitude of tests were done. When Jenaya and Josh went in for the results, they were told the scans suggested it was a rare type of ‘vascular anomaly’ – an abnormality of the blood vessels.
‘I remember asking, “is it benign? Could it be anything more?”, says Jenaya. ‘And they were like, ‘no, it doesn’t look like anything more sinister. It’s benign.’”
While waiting for answers, Jenaya and Josh decided to reach out to the US-based International Vascular Birthmarks Foundation for advice. ‘This is not an infantile hemangioma; this baby needs urgent testing’ came the response.
They said, ‘this is not an infantile hemangioma. This baby needs urgent testing.
- Jenaya, Toby's Mum
The Foundation recommended a radiologist at Westmead Hospital in Sydney. Jenaya managed to contact a nurse there, who agreed to show photos and a summary to the radiologist.
The next morning, the radiologist rang Jenaya directly. ‘He told me, ‘I agree; this baby needs to be seen immediately. If you can get to Westmead, we’ll get a biopsy and a treatment plan straight away.’
At Westmead, a biopsy was done. Jenaya and Josh also agreed to sign Toby up to the Zero Childhood Cancer (ZERO) national clinical trial, so detailed genetic testing could be done on his mass.
When the biopsy results came through, Jenaya and Josh were taken to a private room where the news was delivered: Toby had ‘a malignant spindle cell neoplasm’ — cancer — and the oncology team was on its way.
‘I remember going very still,’ Jenaya says. ‘I don’t think my brain could fully comprehend it. Even now, I don’t know if I fully comprehended the fact that my baby has cancer.’
When the oncologist arrived, he explained he thought Toby had something called infantile fibrosarcoma, and more testing was required.
I was thinking, ‘Am I going to have to say goodbye to my baby before I’ve even really got to know him?
- Jenaya, Toby’s Mum
The very next morning, Jenaya and Josh were told that they’d been exposed to COVID-19 and needed to self-isolate. Jenaya went into a room with Toby, who was now 3 weeks old and struggling with reflux and colic, petrified that she would inadvertently give him COVID.
It was also around this time that the Queensland floods were happening. This meant Josh couldn’t drive home to get supplies; but worse, the couple had no way of knowing if their home was safe.
Meanwhile, a PET scan was done to check the extent of Toby’s cancer — an experience Jenaya describes as traumatic. ‘I was so scared it had spread, and they were going to say, “There’s nothing we can do.” And I was thinking, ‘Am I going to have to say goodbye to my baby before I’ve even really got to know him?’
Thankfully, the PET results showed the cancer was contained within Toby’s arm and shoulder. A central line was put in and he began chemotherapy. Soon after, Jenaya and Josh decided to return to Queensland to continue treatment there.
After two months, it became clear that the chemotherapy regimen Toby had started on was having no effect. In fact, the lump on his shoulder had grown substantially.
We could literally see it growing week by week. It was huge.
- Jenaya, Toby’s Mum
Jenaya and Josh were given two options. Option 1 was amputation. Option 2 was harsher chemotherapy, with no guarantee that it would work or that the cancer wouldn’t spread.
‘My very first Mothers’ Day was spent debating: do we amputate our 3-month-old’s arm and shoulder, or do we subject him to harsher chemo without knowing if it’s going to do anything?’
Jenaya and Josh finally decided on the amputation. Then, two days before surgery, they changed their minds. More chemotherapeutic agents were added to Toby’s regimen, and – much to their relief – scans showed his tumour was no longer growing.
A New Drug
Meanwhile, genetic testing revealed that Toby’s cancer was sensitive to crizotinib — a new generation drug known as a targeted therapy. However, because the drug had never been used for sarcoma, nor used in such a young child, it wasn’t considered an option for Toby at this stage.
Toby continued on a mix of chemotherapy, ultimately going through 12 cycles. ‘Throughout all this, we had all the febrile neutropenias, blood transfusions, platelet transfusions, random admissions, viruses. His arm kept getting infected as well,’ recalls Jenaya.
When Toby was 11 months old and had reached the limit of chemotherapy he could receive, his oncologist applied to the US for access to crizotinib on compassionate grounds. The request was granted, and Toby began the new treatment.
Toby has now been on crizotinib for seven months. His cancer has been shrinking — his shoulder tumour was down to 2cm on his last scans — and he is meeting all his developmental milestones.
A major challenge facing Jenaya and Josh is the uncertainty of the path forward. ‘At this stage, we’re going scan to scan,’ says Jenaya. ‘We don’t know when treatment will end.’
In the meantime, they are learning to ‘go with the flow’ and are trying to work out ‘what life looks like at home with a toddler’. ‘We love just going out for walks, seeing friends and family, and being part of the community again,’ says Jenaya.
The Need for Change
Jenaya is passionate about research into new treatments for childhood cancer, saying ‘too many kids are dying from the side effects of traditional chemotherapy’.
‘It has broken my heart so many times to hear of yet another child passing from something that isn’t even the cancer, but is something that’s meant to save them. It’s just not good enough. Our kids deserve to have safe and effective treatments.’
‘I know with us, the difference between chemotherapy and targeted treatments… with chemotherapy we were constantly in hospital with side effects. With the targeted therapy, we’re actually able to live a life while receiving treatment, and every kid deserves that.’