Rhys’ Story

In August 2021, just after Rhys’ 15 birthday he made us aware that he had what appeared to be a skin tag/mole on the top of his head. Due to Rhys’ thick hair we were not aware of it. He said It would often bleed if he knocked it but it didn’t cause him any pain, so he never mentioned it before.

We looked at the mole on his head and suggested that we take him to the Drs for a review and to remove it. The mole was looked at and a biopsy was taken for analysis.

In November 2021, we received a telephone call (due to Covid-19) where we were informed that the results had shown that the mole was Melanoma. Initially we were shocked and very scared especially after hearing the ‘C’ word. We were assured by the Drs that although this was extremely rare for someone of Rhys’ age to have, it was treatable through excision of the area surrounding the mole.

Rhys underwent surgery at Bristol Children’s Hospital not long after to first fully remove the mole through a wide local excision and, due to the mole being on his head, have a skin graft taken from just above his pelvis. This left a large area of skin a ‘bald patch’ on the top of Rhys’ head that severely affected his mental health, with him stating “Everyone’s gonna stare at me, I look like a freak”. Luckily through growing out his hair and styling it a certain way we were able to hide the majority of the bald patch, but he was always extremely self-conscious about it.

Later, Rhys had two further operations to reduce the side of the bald patch, but it was always a massive issue for him. Rhys was also required to have an operation to test the lymph nodes in his neck due to where the cancer was and the possibility that the cancer may have spread. However, this was made difficult as Rhys was born with a facial malformation on the right side of his face which made it appear slightly puffy when compared to the left. This affected the lymph nodes in his neck and the anatomy meaning they couldn’t tell for sure as to whether the cancer had spread to the lymph nodes or not.

Rhys continued to attend outpatient appointments for check-ups and to have x-rays on his neck. Rhys’ mum (Lauren) tried to push for further investigations including CT scans or MRI’s rather than relying solely on x-rays, especially due to the fact they couldn’t determine if the cancer had spread. The Drs, on the other hand, did not think further investigation was needed as all of the cancerous tissue from his head had been successfully removed. However, around October time of 2022 Rhys began to experience pain at the base of his spine. Tests were ordered (further x-rays, and full body CT scans) which revealed 2 tumours at the bottom of his spine and what appeared to be small deposits surrounding his ribs and in November 2022 we received the diagnosis that his cancer had spread and was now classed as stage 4 Melanoma.

By this time, Rhys had transitioned to adult care and commenced BRAF positive cancer targeted therapy treatment, consisting of Encorafinib and Binimetinib. These drugs came with some miserable side effects. Rhys felt very sick most of the time, especially given the number of tablets that he had to take (upwards of 20+ a day), he would often sweat profusely (especially at night) and had other issues including constipation and bouts of diarrhoea. These medications also affected his appetite reducing the amount of food he would eat causing him to lose weight.

Once the cancer had spread to Rhys spine, he endured a lot of pain on a daily basis which was managed with further medication and more tablets severely impacting Rhys life.

Rhys was very athletic and enjoyed running and loved playing football, especially with his brothers out in the garden but due to the amount of pain he was in, or the nausea he felt he wasn’t able to do many of the activities he enjoyed anymore. Being 16 and having just left school Rhys made the extra effort to go to sixth form to complete his IT diploma, as it was his ambition to become a games developer. He struggled on a daily basis to make the bus journey in to school and complete his course and through hard work and sheer determination Finally passed his GCSE English in January 2024 and completed his ICT Diploma in August 2024.

Throughout this time, we were attending various appointments and check-ups but Rhys was becoming more and more introverted often spending the majority of his time in his room not wanting to socialise with friends or family. He became quite depressed and anxious, especially in crowded places surrounded by lots of people. He often expressed that he was lonely but that none of his friends understood him. Saying “They’re all out partying and having a good time while I’m stuck here suffering”. That’s not to say Rhys didn’t have some good times. We love Harry Potter and arranged a trip to London in 2022 where we visited the Harry Potter studios and spent precious time together as a family. He was also an avid Manchester City fan and thanks to The Willow Foundation we were able to attend a Man City game and have a stadium tour in October 2023 which Rhys couldn’t have been happier with!

Sadly, in the background the cancer was taking hold. Rhys was in constant pain, and we had frequent trips to hospital to try and get on top of it. More appointments and medications were offered all of which made Rhys miserable. In May 2024 Rhys experienced spinal compression which due to a new tumour at the top of his spine affected his mobility and dexterity in his left hand adding to his misery. We tried to carry on as best we could but the pain became more and more intense and the trips to hospital became more and more frequent.

In October 2024 Rhys pain became unbearable and following further tests it was determined that the cancer targeted therapy had started to prove ineffective, and it was agreed that Rhys would undergo Radiotherapy treatment to try and manage the pain in the base of his spine. This was concluded in November 2024, but Rhys was never really the same. The pain was still there, and Rhys was in constant agony often taking analgesia hourly to keep on top of it. He had zero appetite for the majority of the time and again began to lose weight.

We tried to make Christmas of 2024 as memorable for Rhys as we could, but again, due to his pain and lack of appetite he was unable to enjoy it as much as he would have wanted to. Rhys adored Christmas and it broke our hearts to see him so unhappy on his favourite day of the year.

The pain again became too much and on 17th January 2025 Rhys was rushed to hospital with severe pain in his spine. He again underwent multiple tests, CT scans and X-rays and on the 18th January we were told that his cancer had spread throughout his body into his lungs, heart, liver and into his brain and we were told that Rhys did not have long left.

We were then transferred to the cancer ward (Lowen) in Treliske where we were seen by Rhys consultant who provided a glimmer of hope stating that “this is still manageable, and I’m confident that immunotherapy will get on top of things” Sadly, this was not the case.

Laruen and I spent all day looking after Rhys on Lowen and took turns spending nights with him and began to notice subtle changes in his behaviour. On the morning of the 27th January Lauren came back to the ward and noticed a considerable lump on Rhys’ head. This was not noticed by the nurses and due to his poor mobility, we thought he might have fallen during the night. Lauren insisted that Rhys undergo a further CT scan where it was discovered that the tumours in his brain had bled. There were discussions with professors about operating on Rhys brain and we were transferred from Treliske Hospital to Derriford. There we spoke with a Neurosurgeon who explained that due to the location and size of the tumours in his brain operating was not an option. He then showed us the two scans that had been performed on Rhys’ brain (9 days apart) to show that there had indeed been a bleed, and the tumours had grown considerably. Sadly, on the 28th January 2025 we were told there was nothing they could do and Rhys didn’t have very long left. We then had to have this conversation with Rhys and told him that sadly, he didn’t have long left. We asked him what he wanted to do and he said “Go back home to Cornwall”.

Sadly, in the background the cancer was taking hold. Rhys was in constant pain, and we had frequent trips to hospital to try and get on top of it. More appointments and medications were offered all of which made Rhys miserable. In May 2024 Rhys experienced spinal compression which due to a new tumour at the top of his spine affected his mobility and dexterity in his left hand adding to his misery. We tried to carry on as best we could but the pain became more and more intense and the trips to hospital became more and more frequent.

In October 2024 Rhys pain became unbearable and following further tests it was determined that the cancer targeted therapy had started to prove ineffective, and it was agreed that Rhys would undergo Radiotherapy treatment to try and manage the pain in the base of his spine. This was concluded in November 2024, but Rhys was never really the same. The pain was still there, and Rhys was in constant agony often taking analgesia hourly to keep on top of it. He had zero appetite for the majority of the time and again began to lose weight.

We tried to make Christmas of 2024 as memorable for Rhys as we could, but again, due to his pain and lack of appetite he was unable to enjoy it as much as he would have wanted to. Rhys adored Christmas and it broke our hearts to see him so unhappy on his favourite day of the year.

The pain again became too much and on 17th January 2025 Rhys was rushed to hospital with severe pain in his spine. He again underwent multiple tests, CT scans and X-rays and on the 18th January we were told that his cancer had spread throughout his body into his lungs, heart, liver and into his brain and we were told that Rhys did not have long left.

We were then transferred to the cancer ward (Lowen) in Treliske where we were seen by Rhys consultant who provided a glimmer of hope stating that “this is still manageable, and I’m confident that immunotherapy will get on top of things” Sadly, this was not the case.

Lauren and I spent all day looking after Rhys on Lowen and took turns spending nights with him and began to notice subtle changes in his behaviour. On the morning of the 27th January Lauren came back to the ward and noticed a considerable lump on Rhys’ head. This was not noticed by the nurses and due to his poor mobility, we thought he might have fallen during the night. Lauren insisted that Rhys undergo a further CT scan where it was discovered that the tumours in his brain had bled. There were discussions with professors about operating on Rhys brain and we were transferred from Treliske Hospital to Derriford. There we spoke with a Neurosurgeon who explained that due to the location and size of the tumours in his brain operating was not an option. He then showed us the two scans that had been performed on Rhys’ brain (9 days apart) to show that there had indeed been a bleed, and the tumours had grown considerably. Sadly, on the 28th January 2025 we were told there was nothing they could do and Rhys didn’t have very long left. We then had to have this conversation with Rhys and told him that sadly, he didn’t have long left. We asked him what he wanted to do and he said “Go back home to Cornwall”.

This is by no means the full story as there are too many details and instances to remember but I hope this gives you an insight into the struggles Rhys faced, how brave he was and just how hard he fought over the last 4 years. The things we have seen and the pain we have been through have shaken us to our core but we will never forget Rhys and what a fighter he was.

Rhys passed away on the 15th March 2025 at home surrounded by his brothers and his beloved mum and we want more than anything to honour Rhys’ last wish and make sure this happens for him.

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