To his family, friends and supporters, he is Finlay the Fair-Haired Hero.
He might look like a normal, adorable little boy with chubby cheeks and a love of balls, but there is something about him that just radiates light and strength.
Finlay is a gentle, loving and sensitive little boy who loves small creatures, especially those he can stroke and cuddle.
He has just turned three years old, and he has stage four liver cancer (high risk, refractory hepatoblastoma). When he was diagnosed at 18 months old, it had already spread to his lungs.
He has spent almost half of his short life in hospital, undergoing multitudes of tests, a very aggressive chemotherapy regime and seven major surgeries. This includes an eight-hour session before he was two years old that saw 80% of his liver removed as well as his gall bladder, bile ducts and a resection of his diaphragm. He’s also had three major thoracic operations, the last one only a couple of weeks ago. Each time, he has needed to have his lungs deflated and spend time in intensive care.
The treatment he’s endured has caused not only sickness and pain, but hearing loss, kidney damage, brittle bones and reversals in his motor development. Long term, he is at a high risk of heart disease.
Yet when I first met Finlay, we sat at the kitchen island in his house having tea and muffins together. We went out to the backyard to play with balls in the sun, and jump on the trampoline. The next time was in the playground where he just ran around and around with his brother and sister and the other kids, and entreated his dad to help him climb higher and higher into a giant Moreton Bay Fig tree.
As his mum Katey says, it is so hard to associate this radiant little man with what he’s been through. And it’s even harder to process what lies ahead for him.
Finlay was in remission when we first met, but in August they discovered the cancer had returned. It has proven not to respond to chemotherapy.
He has since had his third major lung operation, and now all they can do is “watch and wait” to see if the cancer comes back.
Hepatoblastoma represents only 1% of childhood cancers, and Finlay’s presentation – where the cancer has come back in the original site of the disease rather than a new location – is even more rare. There have been no cases like Finlay’s that have survived with any kind of chemotherapy trial.
If the cancer returns again, surgical resection is his only chance. Whether it continues to be viable will depend on the size and location of the tumour, his health, the number of previous surgeries and how much tissue needs to be taken. There is only so much surgery one little body can take.
The most frustrating thing for his parents and others like them is the lack of research taking place in the area. The reasoning appears to be in the rarity of the disease, however the incidence of childhood liver cancer is increasing by 2.5% per year. There has been no improvement in life expectancy in 10 years.
Imagine being told that your happy, outwardly healthy 18 month old child has cancer. A very rare, aggressive cancer that has already spread throughout his body. Imagine watching him go through operation after operation, scan after scan, forcing him to take medication that makes him sick and affects his long term health. Then, when you finally dare to hope it might be over, you’re told it’s back. It’s back, we can operate again, but there’s actually nothing proven to stop it coming back again.
It is one thing to try and process this as a parent. But managing the situation for Finlay’s siblings Milla (six) and Harrison (four) presents a whole different set of challenges. Katey says:
“It took them a long time to process and move on emotionally from the trauma of having Finlay so unwell the first time…
“We were really beginning to feel like we were starting to settle into our new normal when we received the news of his relapse. What we are hearing from his doctors this time is so devastating and frightening that as parents we have do our best to protect them, while also making sure they have an age-appropriate understanding of what is going on. There aren’t any manuals on how to do this as every situation is so unique. We just do whatever we can to keep everyday as normal as possible and filled with love and fun.”
To get through each day, Katey finds strength in Finlay, and in the moment.
“The world has really let Finlay down, yet he embraces every second of it. Perhaps that is one of the greatest things he has taught me…
…Looking ahead is not going to change today. Right now is all that matters. This next minute, this next hour, I have nothing to be frightened of. Today, I don’t need to be afraid.”
Katey is a passionate advocate for childhood cancer awareness and research, and has made a commitment to share as much of Finlay’s journey as far and wide as possible in order to show the community the real impact of the disease. If you follow Friends of Finlay on Facebook or Instagram (www.instagram.com/friends_of_finlay) you will get a heartbreakingly real glimpse into his life and learn a number of ways you can help him, and other kids like him.
The family has had amazing support from the community and organisations like Red Kite and Camp Quality. But the most urgent, important thing you can do to help right now is to support childhood cancer research.
This means donating, but it also means spreading the word. Tell your friends, share this post, follow Friends of Finlay and share those posts, or any others you see on social media. You might be surprised how many children are affected by cancer, once you are looking for it.
The doctors said it was a miracle Finlay went into remission at all. They were amazed he survived to three years old, and were not surprised when the cancer came back. His light and his strength have brought him this far. Now, his family, friends and supporters are all praying for a miracle again – that Finlay, the Fair Haired Hero, will rise up against the odds.
You can purchase prints of Finlay’s artwork here.