The first time I meet Thomas, I get to see a superhero in action. As we sit talking with his mum Jane in the café at Princess Margaret Hospital, he silently reaches out his arm towards one of his doctors he’s spotted across the room.
“He’s using his superpower on him,” Jane tells me, although the nature of this particular power remains a mystery to us mere mortals.
The more I learn about little Tom-Tom, the more his superpowers shine through. Just two years old, he has been through more invasive medical procedures than many of us will have in our whole lives.
For the past 7 months, he has been battling Rhabdomyosarcoma – an aggressive and highly malignant form of cancer that develops from skeletal muscle cells.
It all started with his 12-month well baby check in Shanghai, where the family was living at the time. What began as a puffy cheek and a slightly wonky smile led to numerous tests, misdiagnoses, travel to the UK for medical treatment and then a move to Australia where Thomas diagnosed with cancer.
On Christmas Eve, just a couple of days before his second birthday, Thomas had his first surgery to remove the tumour from his face. From there he had a second surgery, and chemotherapy every Wednesday until the 22nd of June.
Regular medication, attacking his body as well as the cancer, and major facial surgery are not his only battles. He needs a nasogastric tube to administer drugs and make sure he gets adequate nutrition, and a surgically inserted port for regular access to his veins (for tests and more medication). He’s also had numerous MRI, CT, and PET scans, procedures that often require general anaesthetic to keep him still for long periods of time.
The site of the tumour means his speech has been affected, and despite numerous consultations with speech therapy, occupational therapy and dietetics, he may never be able to do all of the things he might have done would had he not had cancer.
But this is a story of bravery and strength. Like a true superhero, Thomas remains a talkative, energetic kid, who loves coming to hospital to see his friends, his “robot” (IV pump), and a family of staff who love him.
Jane tells me how everyone helps to make hospital as fun as possible for the kids, to make it easier to deal with what they are going through.
“When kids are sick, we’ll do anything to make them happy… It makes us re-evaluate everything in life. Things that you thought were important are not so important anymore.”
On top of everything, Thomas did the HBF Run For A Reason in May! He raised over ten thousand dollars for the Children’s Cancer Institute.
Jane herself is one inspirational woman. She is the picture of pragmatic positivity, and has been instrumental in connecting Little Heroes of Perth with a number of Perth families.
Tom-Tom obviously comes from a family of superheroes. He has an older brother Oli (4) who he really looks up to – they are incredibly close. Their relationship was my inspiration for the artwork, as well as their Chinese heritage. Both boys were born in Shanghai, and despite their looks they tell people that they are Chinese. Dumpling are their favourite food, and the first words Thomas could understand were Mandarin.
The boys are Chinese “on the inside,” and when we presented them with their artwork, Oli immediately pointed out the “old world” (his name for their previous home of Shanghai)!
Update: When good trumps evil
I am so pleased that we can leave this particular story on a high note. Not long after we met, Thomas finished his treatment and is now officially in remission! The family has now moved to Port Hedland for the next part of their adventure.
You can purchase prints of Thomas and Oli’s artwork here.