Feeling slightly uneasy but assuming it was some kind of cyst or insect bite, we called AXA for advice. They told us to contact our local GP in the morning. Beth was immediately referred to A&E for scans with the Paediatric team in our local hospital in Jersey. She had a CT scan, X-ray and then MRI to try and determine the cause of the lump. At no point had we thought it to be serious until we were given the mind blowing and devastating news that they suspected it to be cancer. 

Our world in the blink of an eye was completely tipped upside down. I can only describe the feeling of hearing this news alike to being on the scariest roller coaster, one you really don’t want to be on and there’s no getting off. She had no symptoms that stood out. She had felt tired, but then all her friends did as we were approaching the Christmas holidays. She’d had night sweats, but that was nothing unusual for her as she’d always been prone to getting hot in bed. She had no pain and and the lump had not been visible when in the bath 2 nights before. None of it made sense.

We all travelled by plane to Stanmore Hospital for a biopsy which confirmed our worst fears. This cancer was rare and aggressive. The doctors confirmed it was a bone cancer called Ewing sarcoma and like most people, we had never heard of it, let alone known any children with any form of cancer. We had just a few days to pack our belongings, arrange flights and accommodation, ready for Beth to start treatment in Southampton General the week leading up to Christmas. 

We were terrified but tried to keep calm and upbeat for Beth. She was amazing, so calm and strong with everything that was presented to her. We had no idea how long we would be away from home, but Southampton was soon to become our temporary home for the coming months.

On Christmas Eve, Beth had something called a double Hickman Line (or Wiggly) fitted. This was surgically attached to Beth's main artery in order to give treatment and transfusions directly through a tube. She woke Christmas Day to Father Christmas doing his rounds on the ward, enough time to open gifts and then at 2pm she received her first round of chemotherapy.  

Initially she had 9 months of chemo alternating on a 2 weekly rotation, one combination lasting 6 days and the other 3 days, all spent in hospital. There was very little time in between treatments, certainly never long enough to fly home to see her friends, but she made the most of any time she had by gaming with her friends and having video calls. She was forever laughing during these times and we are always so grateful for the love and support her friends gave her.

The initial scans had shown cancerous nodules on her left lung. The lump on her left Scapula measuring at 7cm and the nodules had not reduced significantly after starting chemo, but by the 4th round the nodules had gone and the lump was starting to decrease. A date for surgery to remove the tumour and affected bone was set to be carried out at Stanmore Hospital in May 2021.

The surgery went well, removing her entire left Scapula up to the ball socket of her shoulder and along with it the entire tumour. She would have slightly limited movement of her left arm as a result, but this didn’t impede on her day to day.

She took it all in her stride and on waking up from surgery instantly asked for chicken nuggets and her iPad so she could start gaming with friends again! The same week prior to the operation Beth underwent surgery to remove and preserve tissue from her ovaries, to be frozen and stored in case Beth struggled to conceive later in life due the treatments received.

On return to Southampton she proceeded with 3 more rounds of chemo and then in July 2021 we said our goodbyes to all the lovely nurses, packed our bags again and moved to London so that Beth could start 6 weeks (30 rounds) of Radiotherapy at UCLH. 

The preparation for Radiotherapy was tough. In order to ensure treatment is given accurately every time, Beth had to have dots tattooed on to her skin.  This was agonizing as a parent to watch. Beth had always been so calm about procedures but needles terrified her and this simply felt barbaric. The nursing staff and play staff were amazing at helping to keep her calm, but nothing prepares you for some of the procedures that take place in order to give treatment.

Beth also received 2 more rounds of chemo whilst in London, bringing the total amount of chemo treatments to 14, not to mention all the blood and platelet transfusions and admissions for infections due to severe dips in her immune system.

Finally, after 9 months away from home, Beth could finally return home to Jersey after being given the all clear and ringing the ‘end of treatment' bell. She came home to an amazing welcome by all her friends and couldn’t wait to get back to some kind of ‘new’ normality. She celebrated her 12th birthday with her friends ‘trick or treating’ dressed in an inflatable dinosaur costume and then we took her to Lapland just before Christmas for a holiday of a lifetime, far from the Christmas spent in hospital the year before.

Beth had missed her last year of primary school but threw herself head first into secondary school life. She was doing amazingly, determined to move on and just have fun. By Spring 2022 Beth had had clear 3 monthly scans and this included one taken in April.

Not long after, Beth started to experience pain in her right shoulder. We started to feel concerned but it was assumed from check ups that it was due to her over compensating for the lack of strength on her left side. The pain increased over the coming weeks and after us pushing for further check ups as we had become seriously concerned, an X-ray was carried out. In June 2022, just 2 months after having a clear scan, we were told that the cancer had returned, this time in Beth's right lung.

We were shocked and heartbroken. We had always held onto hope through out the last year and a half, but now we were being told that nothing more could be done to cure this. We had to make a decision whether to put Beth through a clinical trial which meant more time away in hospitals and the possibility of never seeing home again or having the support of a palliative care team in Jersey and Beth spending her last months at home, with the love of family and friends around her. We decided that the latter was the kindest choice and with that we set out to make her time left as comfortable as possible, giving her the dignity and love that she so truly deserved.

Beth took her last peaceful breath in the early hours of Monday 3rd October 2022, 12 days shy of her 13th Birthday, with her mummy, daddy, dog and cat firmly by her side.

By creating this fund  in memory of Beth, we hope to raise awareness of bone cancer, in particular Ewing sarcoma which grows so rapidly in children and therefore a quick diagnosis is critical. There is a need for doctors to recognise symptoms early on and to trust in a parent's concerns. No one knows their kid better than a parent, something we have learnt from our own experiences and from other parents who have been through a child’s cancer diagnosis. We want to see kinder treatments, not treatments that still date back years and are not combating this cruel disease to the extent we would hope for.

We are told consistently that bone cancer in children is rare, therefore funding for the research is not given priority. To us this makes no sense -  other things in life that are ‘rare’ are treated with upmost respect, with urgency to be protected. Bone cancer in children should be no different. 

Beth was rare; she was a shining light in our lives that we were blessed to have and in her name we are determined to make a difference for others going through this with ‘Love Beth x’.