Lucy's rhabdomyosarcoma story

Baby Lucy

Lucy had already beaten the odds, due to complications before she was born. So, when she came into our world, the first 11 months were just bliss. We were so grateful to have her in our lives.

The nappy change

Then during an ordinary nappy change at bedtime, we found blood in her nappy and knew right away something was wrong. From that afternoon everything changed. They found a 7cm Rhabdomyosarcoma in the vagina and we were suddenly in the hands of specialists, making life changing decisions about her fertility and getting ready to start the first of nine rounds of chemotherapy.

A list of questions

Absolutely nothing can compare, only the families and members of staff actually know what that’s like. I remember in one of our early meetings with our oncologist I had a list of questions, such as ‘what clothes should we pack?’ and ‘where can we park?’. On the list I had also written ‘is this terminal?’. As a parent, to even ask this question is unthinkable. Luckily, we had such amazing support, guidance, and advice from these wonderful and caring experts, that we got through it.

Big sister Molly

Molly, her big sister, is eight and absolutely adores her baby sister Lucy. It was incredibly hard on her because she could not see Lucy when she was in hospital because of infection risks. John and I would take turns to be in the hospital overnight and be at home, so Molly only had one parent around at one time. A few times between chemotherapy rounds, Lucy became unwell and had to go back into hospital. This mostly happened during the night. Molly would be woken and taken to her grandparents. Very upsetting for a child. Luckily Molly’s school was amazing; they really helped and understood.

In remission

I’m so happy to say now, that after seven months, Lucy was officially declared in remission on the 5 April 2023. We are starting to return to a gentle, careful, ‘normal’ family life. Until Lucy gets her immunity fully restored, we need to be extra careful still. But we are together as a family. Lucy’s hair is growing back and she no longer needs any special medication.

Lucy the mischief maker

However, Lucy is not out of the woods, she is having regular scans and monitoring. This will go on probably for the rest of her life. But that’s a comfort, so we know where we stand. John and I are so grateful to all the wonderful people we have met during this experience. All the charities, support from our family, friends and even strangers who gave us gift baskets of biscuits and socks really made a difference. Lucy is just adorable and makes us laugh every day. Especially when Molly and Lucy get up to mischief.

Rene, Lucy’s mum, May 2023

Update: July 2023

Things have been going really well. We held a fantastic cake sale at our eldest daughter (Molly) ‘s school – we had so many amazing donations of cakes and we were able to bake some ourselves. All cakes were sold and we raised £231.71. We also have a Just Giving page up which so far has accumulated an amazing £677. We have also received a number of donations from family which takes all fundraising to well over £1,000. We’re really happy with how things have been going and look forward to being able to give this money to the amazing Children with Cancer UK to put to good use. We’re looking forward to planning our next fundraiser. 

John, Lucy’s Dad, July 2023 

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