CCRF Tax Appeal 2022

May 2022

Dear Foundation Supporter,

It’s safe to say that we have all experienced isolation and uncertainty as a result of COVID-19. Although a new feeling for most of us, this is a concept that childhood cancer families have grappled with long before the pandemic.

This tax time, I would like to reintroduce you to the Higgs family. Eight-year-old Finlay Higgs, a hero to all of us at the Foundation, was the star of our Friends of Finlay Camp Out in 2017 and 2018. The event, launched by the Foundation, aimed to help Finlay realise his dream to go camping with his family, something his cancer diagnosis had previously made impossible.

In 2015, when he was just 18-months old, Finlay was diagnosed with stage 4 high-risk hepatoblastoma, a rare tumour that forms in cells in the liver. The tumour spread through Finlay’s diaphragm to both of his lungs, and he was given a 30% chance of survival.

After a gruelling 18-month journey of chemotherapy and surgery, including multiple liver and lung resections, Finlay relapsed in mid-2016. By this time, he had already received twelve rounds of chemotherapy, well above the protocol levels. A surgeon then agreed to do one more lung resection in the hope of removing the last of the cancer.

No child should have to face the cruel reality of cancer. By making a tax-deductible donation to CCRF, you can help us in our commitment to see future generations of children live cancer-free.

Thanks to doctors using the latest research to tailor an unconventional treatment plan for Finlay, we are happy to say that the brave little fighter is now cancer-free. Finlay ‘rang the bell’ at Perth Children’s Hospital last year to mark his five-year remission, a milestone his mother Katey described as “a miracle.”

Ringing the bell is a tradition for cancer patients all over the world, signifying the end of chemotherapy or radiation treatment. The bell allows patients to celebrate this great accomplishment with their family and hospital staff.

Katey confessed that there was a period when she was preparing herself for the worst. “Everything was looking like we weren’t going to see him turn four. It was at this stage that I really stopped imagining a future. I couldn’t let myself imagine him starting school, playing sports, being healthy… growing up,” she shared.

“I think everyone with kids envisions those moments and has hopes and dreams for their children. When you are too scared to do that, and they do happen, it is an unbelievable feeling. When he rang the bell, I felt a deep sense of relief and a final closing of a chapter where now I can, and I do, see a future for him. An amazing one.”

Finlay, like many other children who have gone through harsh cancer treatments, has spent a lot of his life isolated from the outside world. Something as ordinary as a cold or fever is not usually a cause for concern for most children, but this isn’t the case for those battling childhood cancer. For these children, it can be fatal.

Current cancer treatments can be brutal for anyone, let alone a young child. Your support can help scientists find less invasive and more effective treatments for children with cancer.

“When the pandemic hit, it was interesting to see the entire world doing all the things we had already been doing during cancer treatment to protect our child,” said Katey. “Lockdowns, isolation, and quarantine were not new experiences for us. Just this time the entire world was doing it with us.”

For two years, Finlay, only a baby, was on high-dose cancer treatments that made him extremely vulnerable to any virus or infection. “He couldn’t even crawl on the ground unless we placed him on a sterile surface. Throughout this time, we were required to isolate ourselves from the rest of the world, our extended family, our friends, and often even each other,” explained Katey.

“We could no longer do everyday things like go to the park or the beach unless it was timed meticulously to avoid other people, and if Finlay’s blood counts were recovered enough. This very rarely happened.”

Katey explained the heartache of spending weeks isolated in hospital rooms with Finlay, while he was not able to see his siblings or his dad. “For over 200 nights I told my other two children ‘goodnight, I love you’ over the phone. It broke my heart, and the guilt from that is a hard one to shake. Yet Finlay’s life depended on it.”

A childhood cancer diagnosis is not only difficult on the child diagnosed, but it takes a toll on the whole family. Help ensure fewer families have to go through this trauma by making a tax-deductible donation to CCRF today.

When it came to the health and hygiene mandates that came into place once the pandemic hit, the Higgs family had an advantage. “It was nothing new for us,” Katey said. “We were well-practised in implementing measures as a family to protect ourselves from viruses and illnesses. We also had a deep respect for how deadly even the most harmless viruses for most can be for those with a compromised immune system.”

Throughout the pandemic, we have all been forced to sacrifice and postpone certain aspects of our lives. “These sacrifices helped ease the anxiety for those in the community who are going through treatments, are immunosuppressed or have other health challenges, so they could do everyday things without too much fear” Katey explained. When COVID-19 restrictions cause us frustration, it’s important to remember the people we are helping to save. People like young Finlay, whose lives depend on it.

During Finlay’s treatment, Katey explained how “a common virus left him lifeless and close to dying” because of how weak his body had become. “Those were some of the scariest days of Finlay’s treatment,” Katey revealed. “An illness that gave his siblings the sniffles left Finlay clinging on for life. He was under ICU care, requiring high flow oxygen support and unable to open his eyes for five days.”

With the help of generous people like you, we can continue funding the important research into childhood cancers, so that children can live happy and healthy lives.

Although COVID-19 restrictions may have slightly eased the minds of parents needing to protect their immunocompromised child, the pandemic has also created a new source of anxiety for them. “There are many reasons to be anxious over Finlay’s ongoing health without a pandemic, this new virus has now added an extra layer of unknown,” said Katey.

“Relapse, secondary cancers, heart and kidney disease are all things we will always have in the back of our minds,” explained Katey. “With COVID-19, it’s not only worrying about what could be, but it’s remembering what was. Finlay became critically unwell from a common virus, so, we desperately want to avoid this one.”

Finlay’s cancer battle has allowed his family to have a greater appreciation for the simple things in life. “For our family, there is nothing more important than the time we spend together,” Katey said. “All that time together in isolation was a tremendous gift and we made the silliest, funniest, happiest of memories all within our own home. We believe in miracles and we see them everywhere and it makes our world more amazing.”

It is estimated that an average of 750 children are diagnosed with cancer every year in Australia. We need to act now to support these children and get one step closer towards a cancer-free future.

Like most survivors of childhood cancer, Finlay still faces lifelong issues as a result of the treatments endured. “We have reached the ‘survivor’ stage, but it has come with many costs on Finlay’s physical and mental health,” said Katey. “These will affect him for the rest of his life, it is not over for him.”

Katey admitted that her whole family has struggled to return to a ‘normal life’ after what they have been through. “We are managing complex emotions of post-traumatic stress which has required countless hours of ongoing therapy. We will always carry survivors’ guilt and we will never understand the why,” She expressed. “We just use our immense gratitude to give back to the organisations and charities that helped us.”

Our Foundation is proud of the ground-breaking work we have funded over the years, which has resulted in better outcomes for children with cancer. There is, however, much more work to be done to ensure more children can live the long and fulfilling lives they deserve.

“There is still a long way to go with finding more effective and less harmful anti-cancer treatment options for our kids. Until the day comes where we have 100% survival with no lifelong implications, we cannot give up,” expressed Katey.

“As Finlay’s dad puts it, ‘childhood’ and ‘cancer’ are two words that should not go together. Our wish is that no other family has to hear those words in the same sentence and, until that day, we will advocate for every one of those families that have to bear the burden of those words.”

Although still clouded by some fear, the Higgs’ story should bring hope to families who are currently fighting their own childhood cancer battles.
“Don’t waste your time trying to understand the reasons why, no answers will be enough,” Katey shared. “However hopeless and helpless it all feels, you will get through it. Even if it’s just one minute at a time.”

Finlay is a true warrior, but he would not be here today without the advancements made through childhood cancer research. By making a contribution to CLCRF, you can help ensure the research we fund today can have a positive impact on the children of tomorrow.

If you have already made a gift to help children like Finlay, we thank you from the bottom of our hearts. If not, will you please help us today? As CCRF receives very limited government funding, we rely on the compassion and generosity of people like you to make sure less lives are cut short by childhood cancer.

Thank you,

Andrea Alexander
Chief Executive Officer

P.S. We need your support now more than ever. Your tax-deductible gift will not only help more children beat child cancer, but it will also help scientists find better treatments that won’t cause lifelong impacts.