Bethan Rules is a Special Named Fund at CCLG raising funds for research into rhabdomyosarcoma.
Bethan was 7 years old when in May 2022 she was diagnosed with alveolar rhabdomyosarcoma. Her parents shares her story.
I noticed a bump on my youngest daughter Bethan who was 6 years old at the time on her left nostril in May 2021, it was skin coloured and small, I watched it over time to see if it changed shape or colour. In September 2021 it did change colour and I called my GP, we were seen by a nurse who had advised us that she didn't think it was anything sinister and to rub bio oil in it to disperse it. I tried this as advised and it changed shape and colour drastically. I sent photographs to the nurse I spoke to and said I would be back up at the surgery on the Tuesday as it was a bank holiday. We went back to the surgery again and we were referred to a dermatology unit at the Royal Hospital for Children in Glasgow.
We got our appointment in for March 2022 and we met with a doctor who sent Bethan for photographs and a scan on her nose. It came back that it was a solid lump, and they decided to send Bethan for a biopsy. She had the biopsy in April 2022 and we noticed after her biopsy that the small lump had got significantly bigger and now was growing inside her nostril as well as outside and moving up to the bridge of her nose.
We got a call on Friday the 6th of May to ask us to come to the hospital for an appointment as our dermatologist was leaving and he wanted to see us before we left. We put the appointment behind us as our eldest daughter Laurel was making her first Holy Communion on the Saturday and the girls had been looking forward to it so much. We had a full day of fun planned for them with family and friends and they both could not wait.
Myself and Bethan's dad Eddie all went into the appointment on the Monday where we met with the doctor we had seen now on several occassions, and her soon to be amazing oncologist doctor. They informed us that what they had found on Bethan's nose was a tumor and it was rhabdomyosarcoma. They were very good at explaining the basic but important details to us that morning as they explained we would not remember all the information they were telling us. Bethan was also booked in that day for a CT scan and an MRI scan. That day went by in a blur and Eddie and I still can not believe how we managed to keep ourselves composed in front of Bethan for the rest of the day.
Our week was then filled with speaking to family first, we spoke to both girls and then the endless telephone calls and appointments that would happen all that week. By the end of the week Bethan had her central line fitted and had been for a PET scan at The Beatson West of Scotland Cancer Centre in Glasgow.
We then received the news Bethan's tumour was only in her nose but they had found a lesion in her brain that would need to be operated on and biopsy taken to see if it was related as this may change her chemotherapy plan.
This was one of the worst days for Eddie and I, with a full agonising 12 hours of surgery. We have never been so glad to be reunited with our very pale, sick girl. The hours after her surgery were crucial as there are so many side effects to any brain surgery, but in true Bethan style she bounced back and was back home in the house with her mum, dad and her best friend Laurel snuggled on the couch for movies.
We were taken back into hospital the following week to receive the news that the lesion was benign and Bethan's chemotherapy plan was ready to go ahead. It was a bank holiday that weekend so we asked if we could have one last weekend of fun with us altogether as a family before it all started, and they agreed. We had an action-packed weekend and then went back into hospital on the Tuesday for Bethan to have her first cycle of chemotherapy.
Bethan went through 9 intensive cycles of chemotherapy, which should have been 3 days in hospital for her first week of her cycle. However, she spent her first cycle of chemotherapy in hospital with a spike in temperature, so she was automatically treated for sepsis (this is part of her protocol now, a spike meant she spent 48hrs in hospital on IV antibiotics), severe constipation, sickness and a drastic weight loss in a few weeks. Bethan eventually left hospital after 10 days with a nasal gastric tube to be fed through and for medications to be administered. she had also lost all her hair, which was heart breaking for us all as Bethan loved her long auburn hair, but as it was falling out it was also gathering in clumps at the top of her head so she was more than happy for it to be shaved. Bethan, Laurel and I loved shopping for funky hats in the lead up to this so we brought some into hospital for her to wear.
Laurel and Bethan are very close with only having two years between them, and whilst this was all really hard on us as a family, it was particularly tough for the girls as they missed each other so much. Bethan's treatment also coincided with covid, and although regulations were slowly getting back to normal, sadly siblings were not allowed on Bethan's ward. We were therefore all very thankful for technology and being able to face time.
Bethan's chemotherapy plan went by smoothly after her long stay. When she got to cycle 4 it was part of her protocol that she would have 28 days of radiotherapy. This went smoothly for Bethan as she was put to sleep everyday and whilst she was asleep she would also have covid tests, bloods taken, and dressings changed. Bethan recovered amazingly each day and managed to keep her weight up at this time. Her nasogastric tube was removed before her radiotherapy started and being the string willed little girl she is, it never went back in.
Bethan completed her intensive chemotherapy plan in November 2022 and everyone was delighted with her progress. In December 2022 Bethan then began 6 months of maintenance chemotherapy. After a rocky start and adjusting her plan, Bethan was able to lead a semi normal life and began settling back into school and play dates with her friends.
June 2023 Bethan finished her last maintenance chemotherapy, she then had her usual 3 monthly MRI scan and was given the amazing news that her scan was stable and her central line could be removed. This was removed in July 2023, and Bethan started back at school in August 2023 full time and is able to take part in all curricular activities.
Bethan is now a happy, healthy full of life little girl. We fill every weekend, holidays and any other times we can squeeze in to make memories as a family and will continue to do so.
January 2024 started with an MRI scan for Bethan but after meeting with her oncology team, Bethan has now had the news she is 6 months stable. We pray this continues for her, rhabdomyosarcoma is a rare form of childhood cancer, and we are grateful for the trials and research that has developed the treatment already as we would not be here today celebrating each 3 monthly milestone.
We decided to call the Special Named Fund Bethan Rules, because this was something Bethan used to say and there were never truer words spoken after what she had to go through. She had Bethan Rules down her radiotherapy mask, on balloons and printed on t-shirts to celebrate every hurdle along her journey. We all believe the saying was made for her because Bethan most certainly does rule!
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You can make a donation or pay in funds raised by cheque, payable to CCLG, to CCLG, Century House, 24 De Montfort Street, Leicester LE1 7GB. Please ensure you make it clear that the donation is for Bethan Rules so that your donation is allocated to the correct fund.