Palliverse is excited to welcome a Guest Contributor – Molly Williams – who shares with us “Annie’s Story” ahead of our #PALLANZ tweetchat on paedriatic palliative care (#pedpc) this Thursday 30th June at 7pm AEST.
Molly is a paediatric oncologist now in the last 6 months of training in paediatric palliative care. She has a particular interest in supportive care in cancer – the idea of creating a culture of concurrent curative and palliative cancer management & giving kids the best chance of cure while not sacrificing their quality of life fills her with enthusiasm & glee! She has a personal fascination with positive psychology and creative anachronisms, and makes her own beer, cheese and tonic water!
Annie’s Story, As Told By Her Doctor
By Mollie Williams
This is a story about working in paediatric palliative care. It is all about Annie, which is not her real name actually but it is a perfectly true story apart from that.
I was a junior oncology resident when Annie was diagnosed with leukaemia. It was the good kind, the kind you survive. Annie was three. She had the biggest smile ever.
I was the oncology fellow on the night that Annie relapsed. She was six, and she had a headache. The good kind of cancer was back, and it was not so good. Her smile was still amazing. I held her mum’s hand, and I thought I really love this family.
I was the palliative care registrar when Annie’s mum asked me to meet with her. Annie was nearly eight and the cancer was back again. And it was much worse now. Annie’s mum cried as she said, ‘I want her to go on a trial but it’s her body and I think she is over it. And if she is over it, I have to listen to her.’ We talked about what an amazing person Annie is, how she takes the kids who are new in the cancer centre under her wing, writes them letters of support and posts them under their doors on the ward. I saw that Annie and her mum have the exact same smile.
Annie tried the trial for one cycle, but it didn’t work and she said THAT IS IT! And we all tried to listen.
Here are some of the other things that Annie said when she was at home and out at the shopping centre and hanging around with her besties and recording her song and living her life for all those weeks while she was dying:
Mum, you have to soften your heart to Dad. He is trying, but he can’t talk like you, and when I’m gone you will need to look after each other.
The key to happiness is having an open heart. That is how you overcome grief: by opening up your heart.
How do you mend a broken heart? By living with the memories we’ve made together. Remember me, remember the wonderful things we have done together, and your broken heart will be healed. When you remember me, we are together again.
My time is very short now. I need to tell you that I know you will be very sad, that your heart might feel like it is breaking, but listen: when you feel your heart can’t go on, you must run outside and look up at the night sky. And if it is cloudy, I am sleeping. But if you can see all the stars, I am playing.
I was the palliative care fellow when Annie died. It was about four in the afternoon. At about six, Annie’s mum tells me that she felt overwhelmed with sadness. She remembered Annie’s message to her, and ran outside. It was cloudy. She shouted, ‘Oh Annie, you can’t be sleeping! You have been sleeping for days!’ Then the clouds blew apart, and she could see the stars above their house, in the shape of an A.
I went to Annie’s funeral dressed in the brightest blue, her favourite colour. Her principal was the MC, and he told this story:
You know all the kids, all of Annie’s besties and her classmates, they had been invited after she died, to sit with her, to say goodbye, and to decorate her coffin by painting it blue and choosing all the Shopkins to be inside with her or stuck on the outside! Her principal asked one of her little friends, a seven year old boy, what it was like to spend that last time with Annie. He said ‘Well, you wouldn’t call it a nice time, exactly. It isn’t supposed to be nice! But it was very, very peaceful.’
Then he got on with the rest of it: Annie had planned her funeral down to the last detail! It went from 10am to 3 in the afternoon, and then there was a huge feast. Every child at her school attended, and everyone brought a plate. There were three whole school songs; there was a puppeteer; the DJ from her favourite radio station came and spoke. And at the halfway point, called by Annie the ‘interval’, her performing arts teacher had written a play: as per Annie, a ‘funny play, with boys in dresses, because that is important for the kids otherwise it will be too sad’. Also there was a breakdancing wolf (which I now firmly believe should be in every funeral).
I had a little cry when I wrote this down. God, Annie did a great job of living! Not all of the kids’ stories are like this, but they all teach you something you don’t forget in a hurry. And it is such a privilege to walk beside them, even if only for a short while.