A letter to my daughter on her 18th

Wednesday 21 November, 2018

Hayley and Andrew

Hayley was diagnosed with a rare cancer when she was six. Dad, Andrew, wrote this letter to give to her on her 18th birthday - telling Hayley all the things he can't tell her now.

 

Dear Hayley,

Happy 18th Birthday!

I wrote this not long after your ninth birthday. I wanted to tell you how proud I am of you for all you’ve been through so early in life.

I don’t know how much you remember. I hope you have forgotten it all. I know I keep wanting to wake up and find out it was one big, horrible, long, bad dream. But it wasn’t.

It was in June 2016 that our lives changed forever. You were six years old. You had a cold for about four weeks. Your mum was getting a little concerned.

One day I got a call from her to say one of your eyes had turned right in to the middle and she was taking you to the doctors. They sent you straight to The Royal Children’s Hospital. All that week was blood tests, a biopsy, a CT scan and a full body MRI. We could already see you losing weight.

Hayley radiation

On the 23rd June, a nurse sat with you in your hospital room while a group of about six strangers took us into a little room at the end of the corridor. They sat your mum and I on the couch on one side of the room while they sat opposite on the other couch. They told us they’d found a 5cm mass in your nasal cavity called a Rhabdomyosarcoma.

My head was spinning so fast with all the information being thrown at us that I think my first words were, “So, is that cancer?”

The next day they installed the port to receive chemotherapy. I’m sure you remember that thing. It was there like a little bottle cap under your skin, under your right arm. It was there for more than two years as an easy access point for treatment.

The day after that, treatment started. They hit you with four different chemotherapies – technically five as they had to pump something else in before one of them to protect your heart.

One of them was a bright red colour which made your pee come out peachy coloured. You were very amused that first time and giggled each time you saw it. But that stuff knocked the stuffing out of you something severe within hours of starting. Everything you ate came up and out. Almost a whole punnet of strawberries. It was more than half a year later before you even tried another strawberry.

We were so incredibly proud of you. You did everything you were asked. You guided the nurses on how to put the needle into the port. Some days it took longer than others but you always got there. I remember you scared a couple of them. You’d say “ready” followed by this blood-curdling scream. They thought they hurt you before they started, but it was your war cry.

Hayley treatment

That first day in hospital you weighed 19.1kg. About a month later, 15.8kg. You became skin and bone. That wasn’t all you lost.

Before the cancer, every time your mum or I would try to help you with something you insisted on doing it yourself. Getting dressed, getting breakfast, doing your seatbelt up.

Your independence was amazing for your age. So young, so strong.

All that was taken away. We had to get a wheelchair and a stroller because you were too tired to walk. You needed help at the toilet. Bath. Getting dressed. Food. Actually, you hardly ate. We had to have a feeding tube installed. You’ll see most kids have them up through their nose but that’s where your tumour was. You had what was called a feeding peg so we could pump formula straight into your stomach.

Hayley and Andrew

In that first six months you were in hospital more than you were at home. You convinced me to let you go to school one day when you were feeling a bit stronger. I spent the day in the staff room so I could be there at a few seconds notice. Some of the girls in your class were so protective. They would always help you sit or stand as your frail little body struggled and your strength and confidence to do it on your own was gone.

I stood with the other parents outside the corridor at pick-up time. They were so excited to hear you were there after three months off. A minute or two after the last kid disappeared into the corridor we saw you and your entourage come around the corner. A girl holding each arm. None complaining about the lack of speed as you walked as fast as you could.

By the time you got to the door of the corridor, every parent’ s eyes were full of tears.

You called me in close because even your voice was a bit quieter and weaker. I was expecting to hear you were ready to go. Instead you whispered in my ear: “Go away!” It was a proud and slightly heartbreaking moment.

What you went through at such a young age is more than anybody should ever go through in a lifetime. I am so proud of how well you dealt with it all. Your strength at some of the toughest times would have put many an adult to shame.

There is about nine years between when I wrote this and when you read it. Although it won’t change your story I hope things have changed so that no other child has to go through the same. I know there have been many improvements over the years and your story would have been very different two decades earlier. Let’s hope treatments have improved even further again.

Happy Birthday my Warrior Princess. So proud of you and so much love always.

Dad

Brown family

No parent should have to watch their child suffer. Please donate today to help researchers find kinder, less invasive cancer treatments for children like Hayley.

 

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