To anyone who knows and loves him four-year-old Casper is known as ‘Casper the Great’, and it’s no wonder. For most of his life Casper has battled a rare childhood cancer called hepatoblastoma, a tumour of the liver, as well as a condition known as Familial Adenomatous Polyposis (FAP).
Casper’s mum Fiona said Casper was a very happy baby, and apart from being a poor sleeper, he was perfectly fine and was hitting all his milestones.
However on 22 June 2010, a Tuesday morning, everything changed. “We were going to New South Wales for my Auntie’s funeral and just after the plane trip Casper collapsed unconscious. We obviously knew then that something was very wrong with him and he was rushed to the nearest hospital Emergency Department,” said Fiona.
Investigations and tests at the hospital found that Casper had a large mass on his liver. “We were told then that it was likely he had hepatoblastoma, a very rare childhood liver cancer, which was later confirmed through tests at The Royal Children’s Hospital (RCH). We also found out that his collapse was not actually related to the tumour, but if he had not collapsed we might not have found the cancer until it was too late,” she said.
“We came back home and started his life-saving treatment at the RCH with the team at the Children’s Cancer Centre. At the time Casper also underwent further genetic testing, which led to a second diagnosis, FAP, which has been linked to hepatoblastoma,” Fiona said.
Usually FAP is a condition that is inherited from a parent (those with FAP have a 50 per cent chance of passing the condition on to their children). However, in Casper’s case neither Fiona nor Casper’s dad David were found to have the condition, meaning Casper has a rare spontaneous mutation of FAP.
Since being diagnosed Casper has undergone countless tests and procedures. He has endured 10 intensive rounds of chemotherapy, without which he could not be cured, and a major liver resection surgery to remove the tumour, which meant removing half of his liver. The many blood tests, biopsies, ultrasounds, CT scans and MRIs have caused a lot of anxiety for Casper who bravely battles through each procedure.
“After three years of remission he is still having six monthly MRIs under general anaesthetic as he is too young to be reliable enough to lie still for the duration required. There has been high anxiety around the MRI procedure for him but with the help of Judie McGough, our amazing play therapist, he has worked through this and is now coping really well. At his last MRI he even got up on the bed and put the mask on by himself!” said Fiona.
“I think the toughest part of it all was the relentlessness of the treatment and how sick it made Casper. By the end of the eight months of treatment we were all exhausted both physically and mentally. The family separation was also difficult, with me being in hospital with Casper and David at home, work or Ronald McDonald House. It was so tough but we were determined to try to keep routine and normality where we could,” she said.
Casper has grown up at the RCH, spending many days on the wards and in Day Cancer Care and Specialist Clinics. And he’s time at the hospital will be ongoing as he is now receiving treatment to manage some of the side effects of his life-saving chemotherapy and to monitor his progress in the hope the cancer will not return.
“While going through treatment Casper said ‘Mumma’ for the first time. He was well on the way to walking at 10 months when he was diagnosed but treatment and surgery meant he did not walk unassisted until 19 months of age. Despite that, just three days after his surgery he wanted to walk around the surgical ward holding my hands. He looked so tiny, skinny and frail but he had a beaming smile on his face,” said Fiona.
During Casper’s journey, Fiona says it was the incredible support of family and friends that got them through, as well as writing about and documenting their experiences along the way.
“We had a group of incredible friends who organised a fridge freezer for on our back porch and used to keep it filled with baby, toddler and adult meals for us which was great at home and also when we were in hospital. They also came and did our garden and painted our shed/studio that we had recently renovated. They were all amazing,” Fiona said.
As Casper’s condition is so rare, Fiona has also relied on social media to connect her with other families around the world going through the same thing.
“I have joined a Facebook support group for FAP. On the page I came across a couple in America who have started a FAP Foundation and who were running an event called the ‘It Takes Guts 21 Day Challenge’. The idea behind it was to raise money and awareness for FAP,” she said.
“Basically you had to come up with a personal challenge that was positive for your physical or emotional well-being. I loved the positive aspect to this challenge and of course, loved that it was for FAP. I talked about this with Casper and he decided that he would ride his bike every day for 21 days and I would skip.”
“We also decided that we would like to do something for the kids on Kookaburra (Cancer Care Ward) at the RCH for Christmas. So I came up with the idea to make 21 Santa Sacks and see what donations we could get for presents to fill them. My sister and I run a small homemade children’s clothing and soft toy making venture called PEEPO, so the making of the Santa Sacks was easy enough. My friends and family were amazing and we got lots of lovely gifts and toys and we delivered those to the ward for the Kookaburra team to hand out just days before Christmas.”
“I also got in touch with a lady from a company called EcoViva who has some amazing play equipment and also has these incredibly practical but also incredibly funky Bumpa Mats. She offered to donate two of these to our It Takes Guts Challenge. I decided that these would be great in the Medical Imaging Department for children having an MRI and Rosella (Paediatric Intensive Care Unit). Both of these departments have been a big part of Casper’s journey back to health, and I really wanted them to get something special as a thank you too!”
Fiona has also started an Australian FAP support group on Facebook for other Australian families living with this condition. “With the condition affecting such a small percentage of the population, it is important for us to link with others facing the same health issues and to be able to reach out to others around Australia and in so doing support each other through the difficult aspects of living with FAP,” she said.
Now three years into remission Casper is doing great. He is a bright, loving and cheeky little boy who loves to make those closest to him laugh and is looking forward to starting Kindergarten this week.
“He loves Lego and superheroes but he is actually a hero himself, even though he doesn’t know it,” said Fiona.
“We still have a long road ahead. Once Casper turns eight we will have to start monitoring his FAP condition and there will be more treatment required to keep that in check. He will need regular colonoscopies and eventually more invasive surgery and treatment to manage the condition.”
“So now we are just enjoying this period where he is happy and healthy and we will cross the FAP bridge when the time comes.”
“Casper’s diagnosis has in some ways changed who we are as a family. We are better able to just enjoy the little things. We also realise just how precious life is and how easily it can be taken away. We have made some incredible friends along the way and we have also lost many little friends to cancer who have not been so lucky in their fight to beat it.”
“The past few years have made us stronger as a family as we relied on each other so much during the treatment time. We are all so grateful to all the support and love that was shown to Casper and our family along the way. We just feel so blessed to still have Casper with us.”