A mum has told of her heartbreaking final words to her 'brave' teenage son as he died next to her. Kyle Smith, from Liverpool, was just 19-years-old when he passed away at Claire House Hospice on the Wirral on February 23.
The teenager, who had been diagnosed with Ewing Sarcoma, had shared his story with the ECHO last year in order to raise awareness about the cancer, which mainly affects children and young adults. Now his mum, Amanda, said that her son died 'peacefully' while she was by his side.
She went to see Kyle at the hospice with her sister, took her daughter upstairs to bed and then came back down. She got on the bed and spoke to Kyle first.
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She said: "I said to him 'I am sleeping right next to you mate and if you need to go, you can go. Just don't go anywhere without telling me'. I gave him a kiss on the cheek and he went to me 'K' and that was the most he had spoke in hours and he closed his eyes and took a deep breath and that was it."
After his diagnosis, Kyle told the ECHO that he started having trouble going to the toilet and experienced cramp like symptoms. He said: "A month before I was diagnosed, I started noticing issues when going the bathroom.
"My water stream tended to cut off and I had pain cramps in my stomach. It kept getting worse so I went to see the GP, and he did a urine sample to see if I had a urine infection and that came back clear."
The keen basketball player went back to his GP who performed a physical examination, but couldn't find anything that could be causing the pain. When Kyle woke up with painful cramps a few days later he went to hospital.
After further tests, Kyle was given the devastating news a 15cm by 15cm cancerous tumour had been discovered in his abdomen and he was diagnosed with Ewing Sarcoma. The cancer grew aggressively in Kyle's abdomen and impacted his bowel causing his stomach to swell which he described as leaving him "looking nine-months pregnant."
Amanda said when her son was first diagnosed it was not classed as terminal, however the cancer eventually stopped responding to chemotherapy. After trying alternative treatments which made Kyle more ill, the teenager took the brave decision to stop chemotherapy.
The 40-year-old told the ECHO: "He's got a little brother and little sister, they have both been amazing and dealing really well. He tried to speak with them as much as he could.
"Before he passed away, he was trying to explain his decisions, because he chose to stop chemotherapy because it was only going to prolong the agony rather than fix anything. So he chose to stop the chemo and then he got an infection and they said basically the antibiotics were just holding the infection at bay, they weren't going to get rid of it and he would go downhill drastically once he stopped the antibiotics.
"So Kyle bravely chose to do that and he came home to spend time with his family and be at home. He came home for two weeks and myself, my sister, my niece and my cousin we all looked after him at home until the last day we took him to Claire House in the Wirral."
Throughout his whole journey Kyle bravely shared his story on his TikTok account scousekyle to raise awareness of Ewing Sarcoma and to urge teenagers to pay attention to their bodies. Amanda continued: "That's his legacy so to speak.
"That's all he wanted to do, he wanted me, his brother and his sister to continue to try and put the word out there for other teenagers to pay attention to their bodies and not just ignore things because it's embarrassing to go to a GP because you can't wee properly or just silly things. But things some teenagers would ignore that could possibly change their lives that they could get help for sooner."
Amanda said Kyle enjoyed gaming, his PC and social media and was an A* student who was about to start studying accountancy at Hugh Baird College before Covid hit. The mum-of-three said she believes his "dark sense of humour" is "what got him through most of what he went through."
She said: "He was amazing throughout his treatment, he shocked many, many people. He was so brave, we are all so proud of him. His little brother and his little sister have someone to look up to for the rest of their lives as someone they should be proud of."
Amanda added "every thought" she has is of Kyle, she said: "I don't think it has hit us all properly yet to be fair. It's devastating, every thought you have includes Kyle in some way or other and it was heartbreaking to watch when it is your child and you have arranged their funeral."
The mum also wanted to thank staff at both Clatterbridge Cancer Centre in Liverpool and Claire House, who she described as "amazing". She said staff at Clatterbridge would organise patients to have nights such "takeaway nights".
Amanda said staff would always be trying to cheer patients up, she added: "Even down to the hospitality staff they were amazing, they would have a laugh and a joke with them and even if they were in a bad mood they would try and cheer them up."
To follow Kyle's journey on TikTok, please click here. Advice and support for anyone diagnosed with Ewing Sarcoma can be found at Sarcoma UK – which has information on Ewing sarcoma as well as general support for people with sarcoma.
