Too many kids are dying from the side effects of traditional chemotherapy – Children’s Cancer Institute
Children’s Cancer Institute shared on LinkedIn:
“Toby was still in his mother’s womb when doctors noticed a ‘mass’ on his arm. But it wasn’t until he was born that his parents could see the full extent.
‘There were lumps with deep crevices between them. His upper arm was enlarged and there was a hard mass on the back of his shoulder’ says mum Jenaya.
When biopsy results came back, Jenaya and Josh were taken to a private room where they were told that Toby had something called infantile fibrosarcoma.
‘I remember going very still,’ Jenaya says. ‘I was thinking, am I going to have to say goodbye to my baby before I’ve even really got to know him?’
Toby was signed up to the Zero Childhood Cancer program for detailed genetic testing on his mass.
After 2 months, it was clear that the chemotherapy regimen Toby had started was having no effect. In fact, the lump on his shoulder had grown substantially.
Jenaya and Josh were given two options. Option 1 was amputation. Option 2 was harsher chemotherapy, with no guarantee that it would work. Ultimately, they decided to push forward with more chemo.
Meanwhile, genetic testing through ZERO revealed that Toby’s cancer was sensitive to crizotinib – a new generation drug known as a targeted therapy.
When Toby was 11 months old and had reached the limit of chemo he could receive, his oncologist applied for access to crizotinib on compassionate grounds.
He completed 10 cycles of crizotinib, which shrunk the tumours to the point where they could be surgically removed without amputation of his arm and shoulder.
He’s now finished active treatment and is doing really well as the family transition back into life outside of hospital and treatment protocols.
Toby’s family are passionate about research into new treatments for childhood cancer, with Jenaya saying ‘too many kids are dying from the side effects of traditional chemotherapy’.
‘With chemo, 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.’”
