Lucy – Alveolar Rhabdomyosarcoma (Part 3 – Relapse)

Today, we share part 3 (of 4) of Lucy’s story, as told to us, by her Mum, Michelle.

Unfortunately, despite the chemotherapy and radiotherapy treatment to treat the ‘alveolar rhabdomyosarcoma’, Lucy, started showing significant signs of relapse.

We had 13 months of normality, but then Lucy started to lose weight rapidly. She didn’t have an appetite, she was tired, and had developed a weird crackle when breathing out. She thought it sounded like popping candy. I knew. She knew. But, we went around in circles, never mentioning the dreaded relapse word.

Her bloods were fine, and a chest x-ray was also fine. That Sunday, I carried her down the stairs, and after days of saying she would go to A & E, on Sunday, when she was ready, she allowed me to phone an ambulance. The next few days were a blur, but Lucy and me already knew. It was back, hundreds of tumours in both lungs. Lucy had a lung drain fitted; it seemed like gallons of cancerous fluid came out, and we flew by air ambulance to the ‘Christie’ for more treatment. We were told that Lucy’s cancer was incurable, and we had to face the fact that she would die. My little girl was going to die.

After a few months of chemo, Lucy bounced back again, and although very weak, she got on with living as best she could. The cancer though, got cleverer each time it returned, and much stronger. Every time she relapsed, she wanted more chemo; she wanted to live her life as long as possible, and be with those she loved so much. There were endless blood transfusions, platelets, infections, cellulitis, sepsis. We nearly lost her to sepsis twice. I’ve never seen anybody become so ill, so quickly. It was absolutely terrifying. To the world, Lucy put on a brave face, always smiling and happy. She was, of course, so brave, but also so good at wearing that mask too. She never discussed with her friends what was really happening. She just wanted to be Lucy, but there were lots of long nights when it was just me and Lu, hugging and crying, because she was so so frightened and didn’t want to die. She never once said, ‘why me?’ We discussed every topic, every subject. Lucy knew she was so loved, and that is something that I am so glad about. Her favourite place was home, and when asked during a hip aspiration to go to her happy place in her head, she said, ‘oh it’s in my garden, with a pink wine, but don’t tell my doctor that!’ Nowhere tropical, nowhere fancy…just home. ‘No place like home’, she always said, as our flight landed.

The final and 4th relapse was absolutely terrifying to watch. The cancer moved from her chest wall to her neck, spreading to her jaw and her gums. Again, more chemo. More radiotherapy to her neck. It was just horrendous, this horrible, insidious disease, and all that it brought with it. But, all the barbaric treatments too. My heart was shattered into a million tiny pieces. I remember one night she was screaming in pain and said she had had enough; she just wanted to go. People see the tv ads, with happy bald kids smiling. Believe me, it’s not like that. These outdated, much under-funded treatments are killing our kids, and if they do survive, they are left with life long health problems. It’s never truly over.

Lucy passed away peacefully with her family next to her, at our local hospice, on the 15th August 2014…

I’m sure this story has affected a great many people; not only from parents, or carers, of children with cancer, but many others too. Sadly, it is a story that will be repeated today, and tomorrow, and the next day. If you are affected by this story, or any of the stories or posts that we publish, please do seek professional support.

We are very grateful to Michelle for allowing us to share Lucy’s story in this way, and we have part 4, the final part of Lucy’s story, in Michelle’s words, to share later.

Best wishes to you all.

Ziggy Zoo and Betty Too
Xx