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Cooper Christensen

December 3, 2000 – July 25, 2015

I don’t know where to begin. I will begin by saying that I love my son, Cooper, more than life itself. He is the youngest of my 3 children. I have 2 older children, a daughter Jessie who at present is 21 and a son Zach who is 19. Cooper is our baby, the youngest. We fought so very hard to have him. Cooper was wanted from the very start. He was extra special, having to go through so much to have him here with us, was no easy task.

He came into this world in a hurry, (3 weeks early) by cesarean, at Buderim Private Hospital on a beautiful Wednesday morning on the 3rd December 2008. It is a story like no other. He was a breech baby, and was recommended that I stay in hospital a week prior to my scheduled date of delivery, just in case. To cut a long story short, he came in a hurry, Michael missed his birth and he was a massive 8 pd 10 ounces of cuteness. He was beautiful, if I can say that about a boy.

He was a good baby, he ate like a champion and grew fast. He passed all his milestones and we ticked off all his growth markers, as he slowly began to walk, talk and grow into his own. He is without a doubt a mini version of his dad. I get an occasional look in at different stages of him growing, but my goodness he is his dad. I’m happy for that.

Cooper is such a happy boy, he is always laughing, always happy doing his own thing. Everyone says that he is an old soul in a child’s body, wise beyond his years. I believe that. He is the most caring, gentle, sensitive young little man. He grew up quite quickly having an older brother and sister around. It was a good thing. He rarely misbehaved and never mistreated his toys or anyone around him. He looked after others and had a true compassion for others and their feelings. He is still like that to this day. He cares for people and he truly loves with his whole heart.

Today, Cooper loves Captain America, (his favourite superhero), Transformers, and playing golf on the Wii. We live on a farm with lots of cows and horses, 2 dogs and a cat. Life here is never dull. He loved to ride his quad bike, help out on the tractor and anything outdoors, he was in it.

Cooper was attending Kindy in 2013, when after a second round of eye surgery to correct a turned eye, his balance was slowly deteriorating. He was walking into walls, falling over, not able to pick toys or anything up without falling onto his head, things were not normal. I had his ears tested thinking it was an inner ear problem, I had his feet checked at a podiatrist, I went to his GP, asking for reasons why this was happening, assuming that this was in conduction with his eye trouble. I was getting more worried by this point as he was daily getting worse and I could not figure this out.

On Wednesday the 30th October 2013 our world fell apart, the day that changed our lives forever, and what started Cooper’s Journey.

Cooper was diagnosed  on Wednesday 30th October 2013, with DIPG, Diffuse Intrinsic Pontine Glioma, an inoperable, incurable brain tumor. This is known to be the rarest and horrific debilitating of all childhood cancers. The worst you could be given. Brain tumors in children are bad but this is the worst. Medial survival rates for this particular tumor is 9-12 months. The Dr’s diagnosed my child, my beautiful otherwise healthy, happy, fun loving, caring little man, my Cooper with this cancer, this monster. They gave him 9 to 12 months to live.

We were devastated, our world came crashing down, we fell to pieces. How can this be?

Now I will be perfectly honest, when I heard, read or saw stories or documentaries about cancer, especially childhood cancer, you feel for those children and their families and you physically cannot imagine what they have to endure or go through. I will also be honest and say that I never ever, not in my wildest dreams also ever thought that it would ever happen to my child, me or my family. You have blinkers on, you hear the stories and you see their faces on T.V. and you just think that must be awful for those poor families and their beautiful children, but at the same time you never believe that it could happen to you. You just believe that never my child, never us.

I can sit here typing this having 2 older children and Cooper, and you are scared of the world and what it means for them. You have fears and my greatest worries were to make sure that I explained to them all about stranger danger, wearing a bike helmet, motor vehicle accidents, especially as they both have their license, drugs, alcohol, future relationships, all the major events that you think that could bring your child harm. Having your 4 year old son diagnosed with an inoperable terminal brain cancer with no known cure, was not part of my plan, and certainly not on my agenda.

How easily your life changes, how easily we became that family you read about, or hear about, or see.Again I ask the same question, How did this happen? How did my child get dealt this cruel card? Why? That’s the cruellest part. There is no known reason, no one knows. I will live forever for the rest of my days not having that answer.

I have thought many times since that day, about all the things that Cooper will never get to experience. It is hard knowing that your child is slowly dying. It hurts just to even type this. It is incomprehensible to me that this is happening. Cooper completed his schooling years, his first love, going to college, getting his license, his first job, travelling and seeing the world, getting married, having children, buying his first home, becoming a grandparent himself. Living! I wish he could live. That is all, it’s that simple. I want him to LIVE.

This diagnosis, unfortunately, is like living with constant fear. This consumes me every second, minute, hour, day and months since we were told.

I started a Facebook page called Cooper’s Journey, to spread the word about DIPG, to allow family  and friends to see how Cooper was doing and let people become aware of all Paediatric Cancers, but especially to bring much needed awareness and funding for research into DIPG. This is one of my latest posts from Cooper’s Journey Facebook page. It has been 1 year 8 months and 6 days since Cooper was diagnosed.

26th June 1015

DIPG- Diffuse Intrinsic Pontine Glioma. A rare paediatric brain tumour that affects children between the ages of 5-7 years of age, and it’s terminal. No cure has been found in over 30 years. They don’t know why it chooses your child over another. They don’t know why your child has been dealt this monster. They don’t know why? Funny thing is. I want to know why? I wish I knew why? WHY? I know that until I take my last breath I will never get the answer. Why?

DIPG- Cooper’s life sentence. The day that this monster crept into our lives , to destroy our happy family, to destroy our plans for his future, for our future as a family. My life sentence surges within a world that will one day be without him, for the rest of my life.

They can tell you everything that this monster will take from your child, give you facts and books and you google everything, and I mean hours and hours of research looking for answers, for something, but reality is it just tells you, how it will slowly take little parts of him, slowly, his freedom to play like other 6 year old boys, to go through the motions of school life, playing sport, figuring himself out as a person, a career that he excels and loves to do, passion for life his friends and family, dating, marriage, a family of his own. All of this taken by 4 letters, 4 words. DIPG – Diffuse Intrinsic Pontine Glioma. ( The Monster )

A day for Cooper now involves waking, us moving him from his bed to his wheelchair, where he spends his days, now since he has mostly lost his ability to walk, this week he had to have a catheter placed, so we now tend to that, his right side of his face droops on one side, his speech is getting harder to understand, his right arm and some fingers are losing their ability to work, using a shower chair to shower him, all of this within the last week.

The emotional, physical and mental exhaustion cannot ever be fully understood, until you walk this path. The books the articles read, are nothing compared to seeing and physically dealing with the harsh reality.

We are so lucky and privileged to still have Captain Cooper still fighting everyday. It’s getting harder to fight, and it is getting exhausting, but you can’t ever stop, you can’t ever give up. He hardly ever complains about Dr’s appointments, meeting new Dr’s, having procedures, taking multiple different medications daily, MRI’s, 6 weeks of daily radiation. He just deals with it and does so with a smile and some witty one liners and always a laugh. I love that he still, today, can still laugh, despite everything.

In reality too though, we sometimes have a day, one of those days, for me that was yesterday, a build up over not only the past nearly 20 months dealing with this monster, but doing unimaginable heartbreaking planning for the inevitable this past week, that no parent should ever, ever, ever have to go through. It’s not right, it’s not normal and it certainly should never have to be done.

Sometimes though, all the burdens we carry, just all of it, becomes too much, and then that day comes, where you just hit your brick wall, that moment where I could no longer continue to put on my happy face, keep my emotions in check, control the urge to want to scream bloody murder and if I am totally honest, RUN. Run away from this monster that is attacking my son. Or at the very least, hide under my doona and just hide. But I don’t, I get up to face a new day, why because Cooper does and always with a smile.

Although as a parent, who would do anything for her boy, I don’t run, I stay, I am present and I treasure every moment, I make memories and I continue to give him my all. My emotions are always kept in check in front of him, and are only ever released in the comfort of my shower often in the dark alone. In public my award winning face and Oscar winning performance kicks in, and it’s all for one person, Cooper!

He has his moments as do we, he cry’s asking for his old body back, so he can play again. He wants to be normal. Such a simple request from a 6 year old boy, who is still smart enough to know what he is missing and how much he has changed, physically, and mentally.

So tonight I just wanted to put it out there, allow a private and personal piece of me, my life, my view on this monster. I want people who follow Cooper’s journey to understand the harsh reality of this deadly Brain Cancer. I want people to get behind organisations like Brainchild Foundation, Cure Brain Cancer, The Cure Starts Now Australia.

Brain Cancer can only be beaten if we find a way to beat this monster through research, and that needs funding, donations, big or small it can all help.

Thank you for taking the time to read, and if you donated. Thank you. It may be too late for Cooper, but let’s stop it from happening to any more children. They deserve so, so much more. They deserve their life, not a life sentence.

At the age of 6, Cooper died on July 25th, 2015, one year, eight months and 26 days after his DIPG diagnosis. 

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Please get behind Jenny and Mark Mosier, who have started their foundation, Michael Mosier Defeat DIPG Foundation, in honour of their son who lost his brave and courageous battle against this monster DIPG. We need to raise much needed awareness and funds, so one day when parents receive the news that their child has DIPG, they can also hear the words, but we now have a cure.

Thank you

Amanda Christensen

Cooper’s mum.