We are a family of four. Dad Phil, mum Shelley, Charlie age six and Max age two. Charlie was diagnosed with Langerhans cell histiocytosis (LCH) in April 2017 before his 3rd birthday.
We had no idea that this condition existed until a skin biopsy on his groin area confirmed the LCH. Prior to this, we had sought a dermatologist for nearly two years who had tried many different topical treatments. When we finally received the biopsy results it was a relief to find out a reason for his horrendous skin condition.
We were referred the next week to Dr Picton at Leeds Children’s Hospital who confirmed immediate chemotherapy was needed. The confirmation of chemotherapy was a shock however we knew this was the best option to help Charlie’s skin Langerhans cell histiocytosis. Within ten weeks of commencing treatment Charlie’s skin had cleared up amazingly, this was a year’s worth of treatment.
After Charlie’s treatment the LCH became present on his scalp, with ongoing monitoring, a CT scan was advised, this then showed a shadow on the brain, to which we were advised to Charlie would require chemo again. Charlie commenced this in April 2020, age five.
Charlie is soon to have his last round of chemo and we hope that his future CT scans show positive results and that the LCH stays at bay.
From the moment we arrived at Leeds Children’s Hospital, four years ago, Candlelighters have been amazing to us and Charlie. From the Play Workers on the Day Unit, which Candlelighters helps to fund, playing with Charlie and using distraction techniques their role has always been vital for our visits.
On each visit to the hospital, we also visited The Square, this was our chance to have a rest before the hour journey home. The staff at The Square were always welcoming with a cup of tea for me and crisps and chocolate for Charlie.
Candlelighters have always been supportive and we will be forever grateful. Most recently, Charlie thoroughly enjoyed the ‘lockdown’ craft sessions and the Christmas Quiz!
Getting to go to Centre Parcs was amazing and we’ll always hold fond memories of our time there. Having quality family time was just what we needed and helped put a smile on Charlie’s face away from hospital visits.
Since Charlie’s diagnosis and knowing the invaluable work that Candlelighters does I have raised money by doing the abseiling and most recently a charity skydive! I have also raised money for new books for the oncology wards to hopefully put a smile on the children’s faces.
Thank you to all of the Candlelighters team for making our trips to Leeds Children’s Hospital more bearable, every one of you always has a smile on your face and put us at ease.
Charlie’s Mum x