Written by Kerrie Alexander
A Hervey Bay mum who has endured the crippling loss of child is now fighting to make a difference in the lives of children and families facing the same adversity.
The story of Amanda and Michael Christensen and their little superhero son “Captain Cooper” is beyond heart-breaking.
Cooper was diagnosed with a DIPG (Diffuse Intrinsic Pontine Glioma) brain tumour at just four years old. There was, and still is, no cure.
On July 25, 2015, at 1.45pm, six-year-old Cooper Christensen died – one year, eight months and 26 days after he was diagnosed.
During those 20 months, Amanda would stay up for hours on end searching Google and brain cancer forums for answers, trying to find out what her little boy was about to endure.
Imagine being told that your child only has six to nine months to live.
Surgery is not an option, and chemotherapy doesn’t work on this specific brain tumour.
Amanda soon learnt that the only treatment available to Cooper was 30 rounds of radiation, solely to reduce the swelling on the brain.
This treatment is invasive but also the only option available for Cooper.
He would have to lie on a bed with his specially fitted mask, bottled to the bed. He would be all alone in that room. The radiation machine would be set to work radiating his brain from various angles.
It was, however, the only treatment available to fight this incurable disease.
This would eventually see Cooper lose his hair and become wheelchair bound.
How on earth do you explain clinical medical terms to a four-year-old without scaring him but still being honest about what was to come?
How do you explain the disease to his young friends who were by his side for the harrowing journey?
Amanda said during this time there just wasn’t any resources available to her family in the darkest of days.
After Cooper passed away Amanda knew she had to create something to help others in a similar situation.
She was put in contact with Hand in Hand Fighting Brain Cancer Charity founder Carolyn Oldano after striking up a conversation with one of her friends at a brain cancer charity ball in Brisbane in 2016.
It was the start of a wonderful relationship that would see Amanda become a director on the charity and co-write a book with award-winning author Coral Vass called ‘Where the Magic Happens’ – a heart-warming story about Cooper’s fight with brain cancer.
Carolyn started the charity after her husband Mike lost his battle with GBM brain cancer.
Amanda said he was a “manly man” who raced rally cars and wouldn’t scare easily. That was until he endured brain cancer radiation. He was horrified knowing children were experiencing the same treatment.
It was his wish for Carolyn to help make the treatment easier on children and together with Amanda, and illustrator Nicky Johnston, they have helped make that wish come true.
The book features illustrations of Cooper based off photographs that were taken during his treatment.
The cover features Cooper holding a Mikey the Martian doll that is now synonymous with the foundation.
The first page features Cooper with his hospital wrist band and follows his journey of meeting with doctors, taking medicines, going through treatment, wearing a mask, and becoming the brave little superhero he was well-known for.
Cooper had always loved Spiderman and the Avengers, especially Captain America, because he loved to see the good guys win. All these pieces of Cooper’s character come together in this beautifully written book.
“The book is about a little boy by the name of Cooper who isn’t feeling well and goes to the doctors with his parents and that’s when he finds out that he has a brain tumour,” Amanda said.
“Then he has to go through radiation treatment and that also includes medications and having a mask made. You walk in and there’s a big machine that delivers the radiation … it’s something these children will experience so it’s a pre-preparation.
“With Cooper there was no pre-planning.
“We didn’t have anything to read that would help explain what was happening or about his brain tumour or what was going to happen with radiation and treatment and why he was having to go through all these processes in hospital.”
Amanda said until you have sat in a doctor’s office and told that your child has brain cancer, it is hard to relate to the importance of the book.
Her greatest hope is that the ‘Where the Magic Happens’ will make these families feel less alone and less scared of the unknown.
“It’s a process and we just hope that this book provides parents with some relief and something to hold on to during the worst time you will ever experience.
“During that time when you’re grasping for anything, this book is something that I would have loved to have had.
“From the feedback we have had from some of the families it’s doing what’s it’s supposed to do. We are really proud of it.”
Little Cooper would also be incredibly proud of his parents who have stayed true to his motto of “never giving up”.
“When his eyesight started going, he had a few eye surgeries before we found out he had brain cancer, and he would just get up and try again, fall down and get up and try again.
“He just said one day that ‘it’s okay mummy I won’t give up because you can’t ever give up’.
“From then it was never ever give up! That became our thing.”
As well as the book, both Amanda and Michael raised over $56,000 for brain cancer research by holding the Walk for Cooper in Hervey Bay.
A chair on “Cooper’s Walk” on the Esplanade in Scarness has a plaque attached in loving memory of his brave fight.
Amanda swapped her career as a teacher-aid to become a nurse to help others in need and is now also the newly appointed Recipient Liaison officer for Rally for a Cause – a local charity that all started to help raise funds for Cooper and the family.
The character Ture of “Captain Cooper” is now synonymous with RFAC and the Dunga Derby rally, which is the charities biggest annual fundraiser.
“Looking back, a lot has changed since Cooper passed away but a lot of good has come from it.
“I’m now a nurse and able to give that help and care for others, help raise funds for brain cancer research, I’ve co-written the book to help family and children and I’m now working with Rally for a Cause who helped us endlessly when Cooper was diagnosed.
“Now I’m happily on board as one of the recipient liaison officers. I’ve been able to give back to so many others and it makes life after Cooper just a little bit easier knowing that your helping others.
“Knowing him I think he would be extremely proud, and he’d be like ‘Yep, that’s my mum’. He’d be chuffed.”
It is the charities wish to have both Where the Magic Happens book and Mikey the Martian toy available for every child suffering from childhood brain cancer, in every hospital around Australia.
May is also Brain Cancer Awareness Month. Fraser Coast residents can also log onto the Hand in Hand website and donate a $40 book bundle to families with children diagnosed with brain cancer.
Visit handinhandfbc.org and click on the ‘store’ tab to donate.