{"id":3866,"date":"2014-01-28T23:34:17","date_gmt":"2014-01-28T12:34:17","guid":{"rendered":"https:\/\/blogs.rch.org.au\/news\/?p=3866"},"modified":"2015-04-29T11:54:58","modified_gmt":"2015-04-29T01:54:58","slug":"casper-the-great","status":"publish","type":"post","link":"https:\/\/blogs.rch.org.au\/news\/casper-the-great\/","title":{"rendered":"Casper The Great"},"content":{"rendered":"
\"Casper's<\/a>
Casper donating one of the play mats to Educational Play Therapy in the RCH Medical Imaging Department.<\/figcaption><\/figure>\n

To anyone who knows and loves him four-year-old Casper is known as \u2018Casper the Great\u2019, and it\u2019s no wonder. For most of his life Casper has battled a rare childhood cancer called hepatoblastoma<\/a>, a tumour of the liver, as well as a condition known as Familial Adenomatous Polyposis<\/a> (FAP).<\/p>\n

Casper\u2019s 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.<\/p>\n

However on 22 June 2010, a Tuesday morning, everything changed. \u201cWe were going to New South Wales for my Auntie\u2019s 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,\u201d said Fiona.<\/p>\n

Investigations and tests at the hospital found that Casper had a large mass on his liver. \u201cWe 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\u2019s 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,\u201d she said.<\/p>\n

\u201cWe came back home and started his life-saving treatment at the RCH with the team at the\u00a0Children’s Cancer Centre<\/a>. At the time Casper also underwent further genetic testing, which led to a second diagnosis, FAP<\/a>, which has been linked to hepatoblastoma,\u201d Fiona said.<\/p>\n

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\u2019s case neither Fiona nor Casper\u2019s dad David were found to have the condition, meaning Casper has a rare spontaneous mutation of FAP.<\/p>\n

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.<\/p>\n

\u201cAfter 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<\/a>, our amazing play therapist<\/a>, 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!\u201d said Fiona.<\/p>\n

\u201cI think the toughest part of it all was the relentlessness of the treatment and how sick it made Casper.\u00a0By the end of the eight months of treatment we were all exhausted both physically and mentally.\u00a0The family separation was also difficult, with me being in hospital with Casper and David at home, work or Ronald McDonald House<\/a>. It was so tough but we were determined to try to keep routine and normality where we could,\u201d she said.<\/p>\n

Casper has grown up at the RCH, spending many days on the wards and in Day Cancer Care<\/a> and Specialist Clinics<\/a>. And he\u2019s 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.<\/p>\n

\u201cWhile going through treatment Casper said \u2018Mumma\u2019 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,\u201d said Fiona.<\/p>\n

During Casper\u2019s 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.<\/p>\n

\u201cWe 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.\u00a0They also came and did our garden and painted our shed\/studio that we had recently renovated. They were all amazing,\u201d Fiona said.<\/p>\n

As Casper\u2019s 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.<\/p>\n

\u201cI have joined a Facebook support group for FAP.\u00a0On the page I came across a couple in America who have started a FAP Foundation<\/a> and who were running an event called the \u2018It Takes Guts 21 Day Challenge<\/a>\u2019.\u00a0The idea\u00a0behind it was to raise money and awareness for FAP,\u201d she said.<\/p>\n

\u201cBasically 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.\u00a0I talked about this with Casper and he decided that he would ride his bike every day for 21 days and I would skip.\u201d<\/p>\n

\u201cWe also decided that we would like to do something for the kids on Kookaburra (Cancer Care Ward<\/a>) 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.\u00a0My 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.\u00a0My 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.\u201d<\/p>\n

\u201cI also got in touch with a lady from a company called EcoViva<\/a>\u00a0who has some amazing play equipment and also has these incredibly practical but also incredibly funky Bumpa Mats.\u00a0She offered to donate two of these to our It Takes Guts Challenge<\/em>. I decided that these would be great in the Medical Imaging Department<\/a> for children having an MRI and Rosella (Paediatric Intensive Care Unit<\/a>). 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!\u201d<\/p>\n

Fiona has also started an Australian FAP support group on Facebook<\/a> for other Australian families living with this condition. \u201cWith 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,\u201d she said.<\/p>\n

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.<\/p>\n

\u201c<\/b>He loves Lego and superheroes but he is actually a hero himself, even though he doesn’t know it,\u201d said Fiona.<\/p>\n

\u201cWe 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.\u00a0He will need regular colonoscopies and eventually more invasive surgery and treatment to manage the condition.\u201d<\/p>\n

\u201cSo now we are just enjoying this period where he is happy and healthy and we will cross the FAP bridge when the time comes.\u201d<\/p>\n

\u201cCasper\u2019s diagnosis has in some ways changed who we are as a family. We are better able to just enjoy the little things.\u00a0We also realise just how precious life is and how easily it can be taken away.\u00a0We 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.\u201d<\/p>\n

\u201cThe past few years have made us stronger as a family as we relied on each other so much during the treatment time.\u00a0We are all so grateful to all the support and love that was shown to Casper and our family along the way.\u00a0We just feel so blessed to still have Casper with us.\u201d<\/p>\n","protected":false},"excerpt":{"rendered":"

To anyone who knows and loves him four-year-old Casper is known as \u2018Casper the Great\u2019, and it\u2019s no wonder. Read his inspiring story in this blog.<\/p>\n","protected":false},"author":41,"featured_media":0,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[6],"tags":[],"class_list":["post-3866","post","type-post","status-publish","format-standard","hentry","category-in-the-news"],"acf":[],"_links":{"self":[{"href":"https:\/\/blogs.rch.org.au\/news\/wp-json\/wp\/v2\/posts\/3866","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/blogs.rch.org.au\/news\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/blogs.rch.org.au\/news\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/blogs.rch.org.au\/news\/wp-json\/wp\/v2\/users\/41"}],"replies":[{"embeddable":true,"href":"https:\/\/blogs.rch.org.au\/news\/wp-json\/wp\/v2\/comments?post=3866"}],"version-history":[{"count":9,"href":"https:\/\/blogs.rch.org.au\/news\/wp-json\/wp\/v2\/posts\/3866\/revisions"}],"predecessor-version":[{"id":4873,"href":"https:\/\/blogs.rch.org.au\/news\/wp-json\/wp\/v2\/posts\/3866\/revisions\/4873"}],"wp:attachment":[{"href":"https:\/\/blogs.rch.org.au\/news\/wp-json\/wp\/v2\/media?parent=3866"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/blogs.rch.org.au\/news\/wp-json\/wp\/v2\/categories?post=3866"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/blogs.rch.org.au\/news\/wp-json\/wp\/v2\/tags?post=3866"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}