Lucy's story

Charity Fundraising

We have been doing various little bits and pieces to generate some fundraising for Children with Cancer UK. I ran a chocolate tombola, sold refreshments at Ben’s school panto and the school helped me to run a little raffle. We have made £309 which is going towards my cousin Anjie’s fundraising – she’s taking part in lots of runs including the Virgin Money London Marathon.

Lucy fights her little heart out every day, nearly always with a smile and a wave. Her resilience and spirit are inspirational. Lucy is still under close observation but thanks to research and treatment, we feel really positive about the future.0

Update on Lucy, now three years old

I am pleased to report that we have had a good year. Lucy has not had to endure any surgery or chemotherapy.

Lucy is now at a nursery school and goes for 2.5hrs a day, five days a week. She is still unable to walk unaided but, with support, is becoming increasingly more confident. Her speech is coming on really well and she can count to ten and has started to be able to identify some colours.

Lucy still relies on an NG tube for fluids but she is currently eating well. We are having MRI scans every three months, under general anaesthetic. The last one in October showed ‘no significant change’ to the previous one. She has another booked for Jan 2015.

We are looking forward (hopefully) to a happy and healthy(ish) Christmas!

Although Lucy hasn’t had any active treatments for a while we have never had a conversation with the doctors where the word remission has been used.  She undergoes regular monitoring.  Also her lifelong health problems haven’t been caused by the intensive treatment she’s received, but more from the location and nature of the tumour itself.

Sarah, Lucy’s mum (January 2019)

Update: February 2022

Lucy continues to be closely monitored by the children’s hospital. Thankfully the remnant of the tumour has remained stable. However, the endocrine conditions she lives with as a result of the tumour are lifelong. The doctors don’t think she will get through puberty without medical intervention. Sometimes it feels like everyday brings a new challenge for her. Currently we are waiting to see which secondary school she will go to. There is a lot to think about.

Update: January 2024

It’s always a bit scary to say it out loud but Lucy is doing well at the moment.  She is in year 8 at mainstream secondary school and manages fairly well with the help of a lovely SEN team. The ‘slither’ of tumour that remains has been stable for a good while now so at her last oncology appointment the decision was made to stop routine ‘monitoring’ scans, which again is great news but also a little bit frightening to not know for definite what’s going on inside her head. She had a couple of other ‘scares’ last year. She had numerous tests, including a biopsy as they found growths in her liver and thyroid.  Thankfully, the doctors have agreed that no treatment is needed at the current time but will continue to monitor her. I also discovered I had a rare cancer of the ear and following an operation to remove my ear canal, had to spend seven weeks away from home undergoing proton beam therapy. She stayed home with dad and brother Ben but it was tough on her (on all of us really).  I’d really like to get her doing some nice fun stuff this year but could do with a lottery win to enable it. As you probably find with lots of the children you deal with, she is not demanding and just happy when well to spend time with the people she loves. Lucy is on regular, lifelong medication, including a daily injection of growth hormone. 6 months ago she was also started on Hormone Replacement Patches. Lucy is having weekly physio to help build muscle tone/strength and stamina. She is also having play therapy to try to help her overcome her phobia of needles/bloods. All in all (and keeping fingers and toes crossed), Lucy is making good progress.