For first-time parents, Jenaya and Josh, welcoming their son Toby into the world was a mix of joy and uncertainty.

Born with visable abnormalities on his left arm and shoulder, Toby's condition was first identified during an ultrasound when Jenaya was 28 weeks pregnant. Doctors were unsure of the nature of the mass, however was likely a vascular birthmark as a cancer diagnosis would be rare. 

Toby was delivered at 39weeks, weighing a healthy 3.6 kilograms. Despite reassuring scans suggesting a rare type of "vascular anomaly', Jenaya trusted her instincts and sort the advice from a US-based  vascular birthmark organisation. They urged urgent testing, advising that Toby's condition was not consistent with an infantile hemangioma.

Still recovering from her caesarean section, Jenaya boarded a flight to Sydney with Toby while Josh drove to meet them, all during the height of the COVID-19 pandemic. They travelled there to see a Intervential Radiologist for further testing.

While 1000kms away from home in Queensland and with Toby just three weeks old, his parents were given the devastating news he had an extremely rare form of cancer known as Infantile Fibrosarcoma. 

Jenaya shares that as the cancer progressed, treatment needed to begin imemdiately. Toby started chemotherapy at The Children's Hospital in Westmead before being transferred back to Queensland to continue treatment closer to home.

Initially, Toby underwent 12 rounds of chemotherapy, but sadly, it had no effect, and the tumour continued to grow. At just three months old his parents were faced with a heartbreaking decision: to amputate his arm and shoulder or try a stronger course of chemotherapy. Two days before the scheduled surgery, they changed their minds . Toby began a new chemotherapy regimen, and to their relief, scans showed that his tumour had stopped growing.

Further genetic testing of Toby's cancer revealed an overseas targeted therapy drug might help. Although it had not be used for sarcoma or in a young child before, his team of oncologists sought compassionate use of the treatment. Approval was granted, as the drug specifically targeted the genetic mutation that was driving his cancer.

After seven months on the new therapy, Toby's shoulder tumour had shrunk significantly, and he was meeting all of his development milestones. 

After almost two years of chermotherapy, targeted therapy and surgery Toby went into remission in late 2023.

While remission is a huge milestone, Toby's journey is far from over. The long-term effects of his treatment are still unknown, and he requires ongoing follow up appointments. Through it all, Toby continues to wear his Supertee to help during his medical appointments.  

We ask that you consider making a meaningful contribution to Supertee this holiday season.

Your donation will enable us to gift Supertee’s to children like Toby facing their own battles. Together, we can be the heroes that these children need.