Meet Toby

One-year-old Toby (or 'Baby T' as his parents call him) is a joy-filled, curious and social little boy. He's learning to babble, loves reading and playing with those around him.

Before Toby was even born, doctors detected a tumour growing along his left arm when his mother, Jenaya, was pregnant. 

His parents were initially told by medical professionals, that it was likely a benign vascular birthmark or anomaly. 

Once Baby T was born, a biopsy was done to identify the type of birthmark, so a treatment plan could be made. However, a few hours after the biopsy, a doctor shared the terrible news...

There wasn't any type of vascular anomaly, but instead, a spindle cell neoplasm that was malignant.

At only 3 weeks old, Toby was diagnosed with infantile fibrosarcoma.

His case was especially rare because of his particular genetic fusion. 

"Cancer has permanently altered the trajectory of our lives. Even when this initial phase of treatment is over, it will never be over," his mum said.

Since then, Toby has endured multiple cycles of chemotherapy, echocardiograms, blood transfusions and NG tube insertions.

"Children are treated with the same chemotherapies that adults are. The toxicities are brutal," Jenaya said.

After enduring 12 cycles of chemotherapy, Toby's family was afraid that he was running out of treatment options...

However, after celebrating his first birthday, Toby gained compassionate approval to trial a form of precision medicine known as targeted therapy. 

Toby is now 6 cycles into targeted therapy, and his most recent scans showed that his tumours are responding well to the treatment and are reducing in size. He also has no heart damage, no kidney cysts and amputation is now a highly unlikely outcome for him. 

Due to the rarity of Toby's cancer, there also isn't a certain timeline for his treatment. Through more funding for childhood cancer research, we can create better treatment plans and get better outcomes for kids like Toby.

"Intertwined through these really difficult days and some tears, we also had lots of smiles and snuggles, giggles and cuddles, visits from friends and family, playtime, discovery of new foods and making friends on the ward," his mum told us.

Toby, we are thinking of you when we ride this October.