Dialog Box

Children's Tumour Foundation of Australia

Carey & Jess' Story

Nothing can prepare you for a children’s oncology ward.

No brochure, movie  or specialist appointment can adequately prepare you for how it feels or what you will see when you walk in to your first chemotherapy appointment for your child. My instinct was to turn and run, but I knew I could not outrun this reality.

Jess was diagnosed with Neurofibromatosis type 1 (NF1) at 9 months old. Like many other children with NF1 she had café au lait birthmarks. I had been diagnosed with NF when I was giving birth to Jess. 

As a new mum, I had to quickly learn what this diagnosis meant for me and then discovered that I had a 50% chance of passing it on to my children. I felt a deep sense of guilt when Jess started forming birthmarks all over her, because I instantly knew that she had inherited this condition. 

Receiving a diagnosis as an adult gave me a false sense of what living with NF would be like. As far as I was concerned, I was happy and healthy, with some birthmarks and lumps that started appearing during pregnancy.

I saw a doctor and was told that the “lumps” were moles and so for me, life continued like normal. Despite reading about Neurofibromatosis and what could happen, it was easy to dismiss the serious health complications.

That’s the thing about NF, it affects every person differently. No two cases are the same.

Jess was four years old when she was diagnosed with an optic glioma; a type of tumour that is common in NF1 and grows on the optic nerve. I tried not to worry because I knew of other children with an OPG that only experienced mild symptoms. I lived in this sense of denial for the 12 months, until her next MRI. The day we got her results, was the day that our world came crashing down around us.

I was not prepared to be told that Jess’s optic glioma had more than doubled in size in just 12 months. I felt the floor move beneath my feet and my brain began to scramble to take in all of the medical terminology from the specialist."

Jess had just turned 5 and we were expecting to hear that her tumours were stable. Not only had her initial tumour grown substantially, she had also developed a second optic glioma on her other optic nerve which was causing her vision to deteriorate drastically.

I wasn’t prepared for the physical pain caused by the diagnosis of a tumour. It is a pain and deep grief that I would never wish on another parent.  

Our beautiful ballet dancer, who loved unicorns and Barbies now had two optic gliomas. To make matters worse, we discovered that she was also experiencing colour blindness and the tumour on the right-hand side was compressing the nerve. This meant Jess could no longer see properly out of that eye. 

If we were to save Jess’ vision, we had to start chemotherapy immediately.

You cannot describe to someone how it feels to go from having a healthy and happy child, to requiring chemotherapy. You start to wish for things to be different and wonder what we did to deserve this? But when I looked down at my daughter, I saw her strength and unbelievably, her smile. Like everything else that Jess has faced as a result of her NF, she took it in her stride and simply accepted this course of treatment.

Everything about that first day is a blur. I recall giving myself an internal pep talk to hold it together and not cry. “Whatever you do, don’t cry”. I remember being shocked at the number of children in the ward and at how amazing and well trained the nurses were. I remember feeling nervous and anxious and then scared as I watched my beautiful girl have chemotherapy injected into her body. 

I had the realisation that monitoring bloods, going to hospital, and revolving our lives around chemotherapy cycles was our new normal.

The day Jess started losing her hair was definitely harder for us than it was for her. 

She continued to laugh and shine in a way that made the term “NF HERO” resonate deeply. She epitomized strength and courage and a cheekiness that would make Ironman bow out of respect. I have no doubt she would be a beloved member of the Avengers if given the chance.

Chemo has been hard. For the first 10 weeks we had to travel from Canberra to Sydney for weekly chemo treatments. In these first 10 weeks we were hospitalised twice. Once was from a hang nail. I didn’t realise how susceptible to infections Jess would be. Jess had a tiny cut on her finger, went to school and somehow picked up a staph infection. 

The infection spread quickly to her blood and infected her central line. That meant a week-long stay in hospital- which was made even more difficult because of COVID.

COVID has made this journey almost unmanageable and excruciatingly difficult, especially for my son, Matthew. Jess is only allowed one parent in hospital with her. Her brother cannot visit her. As parents one of us has to stay downstairs with Matthew, while the other leaves Jess alone in her hospital bed to swap over. So that we can both be there for each of our kids and try to get some sleep. If I want to update my husband with what is happening with Jess, I have to update him over the phone, there is no time at swap over. Jess isn’t allowed to leave her room or her ward and all of the children’s services that are usually used to preoccupy and entertain kids in the oncology ward have been closed down.  The loss of a support network has broken us more than once.

This new reality is cruel. I am now beginning to understand things that no Mother should ever have to. I can recognise the eb and flow of chemo on Jess’ energy and mood based on her blood cell count. I now prepare for “low weeks” when her white cells will drop, and she is more susceptible to infections. I become super overprotective and overly cautious during this phase and am hyper aware of germs and personal hygiene. I can’t let anything slide and now I know that a tiny cut on her finger can mean an extensive hospital stay. I know that Jess’s appetite will change so I make her pancakes and try to sneak in some pureed pears to ensure she gets nutrients. Some days we can laugh and find pretty headbands to make her feel beautiful without her hair. Other days, I rub her back as she complains of feeling sick. Some days I cry and other days I sob."

I want people to know that even though we are determined to beat this, and we brave each day with a smile. As a family we walk around with broken hearts and fragile minds, bunking down to fight our first major battle against NF, all the while knowing this is unlikely to be the last battle NF causes us to face.  

This chemotherapy cycle will be our life for the next 12-18 months. At this stage we are unsure if Jess will get her eyesight back or if it has been permanently affected by her tumours. If the chemo doesn’t work, Jess’ best chance will be access to drug trials like the TinT MEK Inhibitor clinical trial, which thankfully, the Children’s Tumour Foundation have helped fund. There are no other treatment options. This is life with NF. 

I am in awe of my little girl. I am now able to see past her lack of hair and recognise the beautiful, happy and positive girl she has always been.

By September, we will be a matching pair. The only way I can regain any sense of control right now is to direct all of my pain and anxiety into something meaningful. I have committed to fundraise in the NF Hero Challenge and shave my hair when I reach my goal of $5000 for the CTF.

Hold your children close, because you never know when your happy and safe world will come crashing down.