Our tale began back in 2014 when Pirate Day Friday founder Nathan Colgan’s son Conor was diagnosed with an inoperable brain tumour. Nathan was told by Conor’s doctors that the only way to find a cure for Conor and kids like him was through research, and that costs lots of money.
Nathan discovered that the National Health and Medical Research Council, which distributes the Australian Government’s annual medical research budget only allocates around $5 million to paediatric cancer (which is less than 1% of its total).
Nathan realised that the only way he could change this was to either raise money through charity work or start a campaign to get the Government’s attention so they would increase medical research funding.
In November 2014, Conor’s primary school held the first ever Pirate Day Friday (although technically it was on a Thursday!). The day was such an overwhelming success with all the teachers enjoying the chance to be a pirate as well, that he decided he would write to all of the primary schools in Australia and ask them to hold their own Pirate Day Friday.
The first official Pirate Day Friday took place the next year on 12 June. It was decided that the second Friday in June would be set as the annual date for the event because it falls within the school term for all Australian schools.
About Conor Coglan
Conor Colgan was born on 5 September 2006 and lives in Joondalup in Western Australia. He is the second youngest of seven children in his family including four brothers and two sisters. When Conor was five years old he suddenly began showing signs of an illness and so his parents took him to see their family doctor. The doctor took a detailed look at Conor and gave his parents a diagnosis that has forever changed the lives of their entire family. I can’t begin to imagine the paralysing fear that you must feel when a doctor refers your child to see an oncologist (a doctor specialising in cancer). The words “it could be nothing but we should just check to make sure” are quickly blocked out by the following heart stopping statement, “… I think your little boy might have brain cancer.” I don’t think a parent could ever forget being told a sentence like that.
Conor was referred to the oncology unit (Children’s Cancer 3B Ward) in Princess Margaret Hospital where they performed a multitude of tests including an MRI scan. The next part of Conor’s journey is probably one of the most difficult for a family. The part which involves the days of waiting for the phone to ring – waiting to find out if your child really does have cancer. I guess you would live in the hope that when the call finally does come, the person on the other end of the phone line is going to tell you that everything is fine and that the doctors had just made a mistake. The call eventually did come for Nathan and Connie Colgan and devastatingly it wasn’t a mistake. It was a confirmation of what the doctors had suspected and their five year old little boy, Conor, had brain cancer.
Over the following months the doctors at Princess Margaret Hospital continued to perform tests including performing surgery to remove a piece of his tumour. The labs at the Telethon Kids Institute study the pieces of tumour to help find an appropriate treatment and perhaps one day a cure. The in-depth results came back and Nathan and Connie were then faced with a very difficult choice. The doctors explained that the tumour was a stage two Glioblastoma (the stages refer to the aggressive nature of the cancer, 1 being least aggressive and stage 4 being the most). They could choose for Conor to undergo radiotherapy and chemotherapy or they could choose for the doctors to surgically remove the tumour. The problem with Chemotherapy is that Conor was of a very small percentage of people whose DNA rejects the treatment and so in reality, chemotherapy would be pretty futile. The problem with radiotherapy is that it not only destroys the tumour cells it also kills surrounding cells as well and when this happens in the brain it would be causing brain damage. Surgery (like radiation therapy) also involves a large risk of brain damage.
I can’t imagine how hard a decision like this would be for a family and even if the cancerous cells are successfully removed the decision would still have serious consequences for the rest of Conor’s life. The Colgan family decided that the best chance Conor had, was to undergo surgery and hopefully remove the tumour before it had a chance to spread to other parts of his brain or body. In 2012 Conor had the majority of his tumour removed, however, due to its location, not all of the cancerous cells were cleared. Sadly, in 2013 when Conor was 7, his tumour returned and in a more aggressive cancerous state. Conor was now diagnosed with what is called a stage 3 Anaplastic Glioblastoma. The doctors gave Conor only a 20% chance of surviving the following two years.
Again the Colgan family were faced with a very difficult decision to make. They could once again attempt surgery to remove the tumour but they would face a much higher risk of brain damage. This would also be the last time surgery could be performed to remove the tumour. In 2014 Conor underwent another surgery in order to remove the second tumour. The surgery again removed the majority of the tumour, although this time some of the tumour remained, as well some cancerous cells. The doctor recommended that Conor be given a treatment of Chemotherapy and followed by a treatment of Radiation therapy to hopefully destroy any of the remaining cancer cells. Of course once again this would involve a high risk of brain damage and as a consequence of the first two operations, Conor had already suffered paralysis to half of his face as well as some coordination problems.
It is important to realise that all of the treatments Conor had to undergo have changed very little over the last 30 years. His chances of survival from his illness were almost the same back in the 1980’s as they are today. Conor last year was treated with Chemotherapy and then followed with 12 weeks of radiotherapy. This seems to have had some success and he is now 9 years old defying the odds. Unfortunately, the radiotherapy caused further brain damage and Conor is now blind in his right eye. He has also developed some memory retention problems and further difficulties with his coordination.
Conor is a brave little kid who has already had to experience so much in his young life. He and kids like him need our help to find a cure for this awful disease. Please, if they’re not already, can you get your school involved in Pirate Day Friday. It’s fun and educational for the kids (and staff) and you’ll be helping to stop other children and their families from suffering how Conor and his family have.
If you’d like to take part in Pirate Day Friday register now.
A Word From The Founder
Dear parents, staff and all our little pirates,
I’d like to begin by saying thank you to each and every one of you who took part in Pirate Day Friday last year. The day was a humungous success far exceeding any of our expectations. What started with just a letter from a dad ended up with over 500 schools/day care centres participating and over 100,000 kids dressing up. Now that’s a lot of pirates!
If you didn’t take part or if you haven’t heard about us before, the event is a pirate dress up day that took place in schools and day care centres across Australia. The primary aim of the day was to increase awareness of and to raise funds for research into finding a cure for childhood brain cancer.
A few years ago my little boy Conor (who was 5 at the time) was diagnosed with a brain tumour. The hospital performed several operations to remove the tumour as well as treating him with chemotherapy and radiation therapy with some success. Unfortunately, the tumour returned a few months later in a more aggressive cancerous state and the doctors gave him around a 20% chance of surviving two more years.
As you can imagine our whole family was devastated and I spent countless nights researching to see if there was anything more I could do to help my son. The more I read the more heartbroken I became. I read story after story of families who had lost their child to this terrible disease. I discovered that for every two children who were diagnosed with a brain tumour one of them will sadly lose their life and the ones that do survive often have severe lasting side effects. I also discovered that childhood brain cancer is responsible for more deaths in Australia than any other childhood disease and what’s even worse is that the treatment and survival rates have barely changed over the past 30 years.
Childhood cancer isn’t preventable like a lot of adult cancers. Kids can’t reduce their risk by eating healthier and exercising more. It can happen to anyone at any time. I found out that the only way to stop this awful disease is by finding a cure and the only way to do that is with research. It is only through research that my son Conor (who is now 9) has defied the odds and is still with us today. I wish I could say he has been cured of his illness but sadly his fight against cancer is not yet over and neither is mine.
Thanks to all of your efforts last year we raised more than $140,000 Australia wide and funded a whole new area of research at the Telethon Kids Institute. This year I’m hoping we can double that amount. Please join me this year on Friday 8 June and help support our charity partners – The Kids’ Cancer Project and The Adventurers.
Words cannot express how grateful I am to all of you who took part last year and how proud I am as a parent, and as an Australian, of each and every one of you. On behalf of my son, my family and every single person affected by this disease thank you Australia, thank you all so much.
If you’d like more information or to sign your school up, please visit our registration page.
Nathan and Connie Colgan