The bear that shows people care
2022-10-17
In hospital with her seriously ill three-month-old son, one mum was given a comforting sense of support from, of all places, a teddy bear.
It’s no surprise that parents, as they race their children to hospital after a cancer diagnosis, don’t think of packing cuddly toys.
When the focus is on survival, when all thought is being given to major treatments and lifesaving surgery, life’s little luxuries are quickly deprioritised.
But actually, sometimes those little luxuries are the most important things of all, says Jenaya, mum of seven-month-old Toby.
Toby had been diagnosed with infantile fibrosarcoma, a large and often fast-growing tumour, soon after birth. Affecting his scapula, shoulder and the length of his arm, down to his wrist, the extremely rare tumour caused all sorts of challenges for specialists in Sydney and Brisbane, most of whom had never seen or treated such a cancer.
A terrible choice: chemo vs amputation
After several rounds of chemotherapy, and with the tumour showing few signs of slowing its growth, Jenaya and husband Joshua had to make a tough decision. They could agree to a surgical process in which their baby boy would lose his shoulder and arm, or sign him up to an even stronger course of chemo. Jenaya, who has documented her journey in detail on Instagram via the @infantilefibrosarcomajourney account, recalls:
When he was just three months old, we had to make that decision...We initially decided to go with the surgery, but pulled out two days prior because we found out the risk of the cancer recurring at the site of the amputation was greater than the risk of it spreading during the chemo course. So we decided to give the chemo two cycles. If it grows more, we’ll go to surgery.
It was at the time of the potential surgery that Toby received a wonderful gift, one that meant more to Jenaya and her son than they could ever have imagined.
A true care bear
When he was in hospital on the weekend of the planned amputation, Toby received a The Kids’ Cancer Project plush bear from a nurse on the ward.
It had been purchased by a caring donor, with proceeds going to the support of kids’ cancer research. Jenaya smiles:
The bear was as big as Toby was...He loved it straight away. And it has been beautiful to see the bond become stronger between Toby and the bear, as Toby grows.
As he is getting older – Toby is seven months old, now – he’s been interacting more with the bear. He sits and talks with it. He plays with it a lot. He crinkles its ears and loves looking in the little mirror attached to its shirt.
Just as important as the happiness offered by the bear, and the distraction from endless medical procedures, is the sense of hope that came with it, Jenaya says:
It’s a beautiful way to discover that there are people out there, who you probably don’t even know, who are thinking of you and supporting you,
At the same time, they’re supporting the research that is bringing answers to serious medical questions and saving the lives of kids. I think the bears from The Kids’ Cancer Project don’t just bring huge comfort to your little one, but they also bring comfort to parents. The bear proves there are other people out there fighting for our children’s lives.
Treatment positive
Right now the bear’s positive effects on little Toby’s state of mind are more important than ever.
He has so far completed eight rounds of chemotherapy overall - three first line, four second line. Doctors recently began Toby’s strongest protocol yet, of which he has 3 out of 4 cycles left. Each line of treatment has been progressively more intensive and, unfortunately, so have the side effects.
He is not out of the woods, but is currently facing a potentially better outcome. The tumour has reduced in size by around 50 per cent.
We know we just have to take it cycle by cycle.
What it has all taught me is that science and research saves children’s lives. It’s slow going, but it is so important. Every time a new, targeted therapy is developed, children’s lives are saved and their quality of life is improved.
