"She was just a tiny baby .... Whoever expects brain cancer?"

By Nikki Rivett, Rylee’s mum

Nothing in this world will prepare you for a cancer diagnosis. And when that diagnosis is handed to your child you wish it was you instead.

I am a mother to a perfect little girl Rylee. We celebrated Rylee’s sixth birthday recently with cake, Peppa Pig and a ballet costume.

She’s a perfect, awesome child who loves life. You’d hardly know to look at her that she’s gone through rounds of chemotherapy and numerous surgeries for brain cancer.

Rylee was just 16 months old when she was diagnosed in 2010. One morning, I noticed she was slipping sideways in her highchair and the left side of her face looked a bit paralysed.

I was terrified. I rang our GP straight away who asked us to go directly to the hospital. I remember being really worried as she was just a tiny baby, but whoever expects brain cancer?

I took Rylee to have a MRI scan the next day and then the day after I received the news. She had an aggressive eight by eight centimetre brain tumour in her head.

What do you do when you’re told that? I remember feeling shock, horror, terror. It breaks your heart as a mother to believe that maybe it is because of something you did or even didn’t do.

Rylee went through four months of chemotherapy. She had three brain surgeries. She had a shunt put into her head and had about 30 sessions of radiation. She cried when they put needles into her and ripped dressings off. The pain was on her face as the poisonous drugs were pumped into her. And all this was done before she was three.

No kid should ever have to go through anything like that. I don’t even know many adults who would be able to handle that. But Rylee, well she had such a will to live. I could see it in her eyes. In the way she talked. In the way she smiled.

Over these years we went between hope, anger, fear and despair. Until you’re confronted with the worst news, you never think about your child dying. And so we didn’t. We kept that hope up and our positivity in check.

But then one small thing can happen and your worst fears creep up on you. Rylee’s second surgery went well but then she got pressure on her brain and her little head just swelled up. We headed right back into hospital but her main doctors were at conferences. Rylee was running fevers and her head just kept getting bigger.

Rylee passed that stage but times like that just rock you to the core. And then you see other children in the cancer ward passing away and it really hits you: not every person gets to continue their life journey. As parents, we’re not meant to see our children go before us. Unfortunately I saw far too many parents go through that over the course of Rylee’s treatment.

Rylee is in a good space right now. We obviously have to live with the risk of a relapse and so she has MRI scan every 6 months.

As a mother, I am completely indebted to those kind people who support and donate to cancer research. If Rylee was diagnosed with this type of brain cancer over ten years ago she would not have survived. And if the cancer does come back, there’s not much the doctors can do to help unless there are new treatments available by then.

Cancer research gives children new treatments and new chances for survival so we need funds for vital research.

I always remain positive, because Rylee should get the life she deserves. She is crazy about Peppa Pig and she adores music. She shakes her body along and she can remember all the words to all the latest songs! One of her favourite songs is the one by Pharell Williams called ‘Happy’.

Rylee is a dynamite character of a kid. I’m grateful for every moment, every smile and every birthday we have with her.

Donate to Cancer Council and help pave a brighter future for Rylee and other cancer patients. Donations made before 30 June are tax deductible for the 2013/2014 financial year. Visit www.cancercouncil.com.au/morebithdays for more information.

Cancer Council NSW is 96% community funded and receives the majority of its funding through supporters. Without community support, vital research, prevention, and support services simply could not continue to run.