Thursday, 18 September 2014

September is......

September is childhood cancer awareness month. I can't stress enough the importance of people being aware that this dreadful disease exists in children. I wish with every inch of my body that it didn't , that we didn't need a month to mark it's existence, but instead a month to mark that it doesn't exist at all.

Sadly, it does exists, in many children and it sucks.......

When the words are told to you "your child has cancer", the fear is so overwhelming, so gutwrenching, like nothing you have ever felt or wanted to feel before. You suddenly feel as if there is no air left in the room and to simply breath becomes difficult. Your heart sinks and you have never felt so desperate for someone to help, in all your life. Because you know, that those words mean that your child could die. Truly, the greatest fear any parent could possibly have.

What you aren't aware of at that time is the journey you will take with your child in the hope that your child will survive. You don't know at that point the hundreds of procedures, the horrific treatment and its side effects and the tears that seem endless that flow from you is yet to come, along with the feelings of complete helplessness as you watch your child endure all of this.

Nothing can prepare you for this and there are no words to truly describe the heartache you endure from that moment on and forever after when your child is diagnosed with cancer. You enter a world of sadness and watch helplessly as more children come into that world and so many pass.

In March of 2012 we were told Jayden had an aggressive brain tumour, a day we will never forget. A tumour known as atypical teratoid rhabdoid tumour, or ATRT, he was 20 months old at the time. ATRT is a very rare, fast-growing tumor of the brain and spinal cord. It usually occurs in children younger than three years of age, and occurs in 3 in one million children. You only have to google its name and the information you find on it is sadly bleak. Its survival rate is less than 10% and the only form of treatment is in the form of a trial. So essentially our child became a guinea pig.

Words alone just aren’t enough to explain how devastating this is to a child and their family. I could go on for ages about the chemotherapy he had the radiation he had, the side effects he had to endure, the nightmares, the fear, the sheer torture of it all ( and I have in this blog) But nothing I say can really tell you how it truly is.

All I know is this...

that I will never forget the look on my sons face as he pleads with me for yet another procedure to stop. I will never forget holding his hand telling him everything is going to be ok when i didn’t know if he would even survive. I will never forget the screams, the cries, every temperature, Vomit, and there was hundreds, his four hourly baths to stop the chemotherapy burning his skin, catheters, wearing gloves to change his nappies, nasal gastric tube insertions, operations, Lps into his spine, needles after needles, Ct scans, MRIs and every time I’ve had to hand him over to be anesthetized. Crying in my arms, scared out of his mind and having to allow it all to happen. The most unnatural thing for a mother to do. And it tore me in pieces. I will never forget any of it. You can’t, and you won’t. Not ever.

When you leave those doors of the oncology ward and finally go home, its not over. That’s
the BIGGEST misconception.
Once your child has been diagnosed with cancer, then that’s your life. You fear everyday that the cancer will return. You go back every three months for an MRI and hope and pray it is clear, and when it is, you know you are blessed with more time. You don’t know how much time but you are so grateful for more.

Everyday becomes important and every tomorrow a fear. Your life is never normal again and the new normal it becomes is a world that is surrounded by sadness. You now know many people in similar circumstances and the hurt they feel, you do as well. You know many who have lost their children and many who live your same fear. You watch and meet new parents everytime you go back to the oncology ward and hear of so many more through the family facebook pages you have joined.
It doesn’t stop. It never will if nothing is done.

We were told when our son was diagnosed that little research has been done on our childs cancer because not enough kids get it. Ive watched a renowned researcher say that they could cure these cancers if more money was going into research.
As a parent of a child with cancer when you hear this, it kills you. If more research was done, our child would most certainly have a future, but because it hasn’t his future is unknown. And this goes for so many children.

The only way to stop other families enduring this torture is research. I don’t want any child and their family to go through what we have and are. No child deserves that.

Please, think of our kids and the kids that are sadly, yet to be diagnosed, by supporting childhood cancer awareness and donating to research. Together, we can make a difference.

- Posted using BlogPress from my iPhone