Jacob W

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Jacob’s symptoms began at the end of 2021 with headaches and sickness and his Mum also noticed that his eye was turning inwards. Following an optician’s appointment Jacob was referred to the Eye Department of Queen Alexandra Hospital where an MRI revealed a build-up of pressure on his brain which was blocking fluid flow. Jacob was sent straight away to Southampton Hospital where his neurosurgeon revealed that Jacob had a brain tumour. The family’s world fell apart.

Jacob was admitted for emergency surgery the next day to release the fluid build-up on his brain. Jacob’s Mum, Donna said, “We were told that Jacob would’ve died if he hadn’t had the surgery when he did because of the pressure on his brain. It was absolutely terrifying. He then had more surgery a couple of weeks later to remove the tumour itself.”

The surgery was a success with most of the tumour removed and Jacob recovering well. But during one of his regular MRI checks in October 2022, they found that the tumour had grown back, resulting in further surgery.

“By this point Jacob’s eyes had been seriously affected and after his surgery, the team decided to use a type of radiotherapy called proton beam therapy to help reduce the chances of the tumour growing back. We went up to stay in London, going to UCLH every day for six weeks for treatment. It was during this time that we met Spread a Smile.

“We were in one Friday and met one of the lovely Spread a Smile artists who created a beautiful sign for him to go on his box for all his hospital playthings. Jacob loves Rubik’s cubes so the artist drew his name on it with a Rubik’s cube, which he loved. We also met a balloon modeller who made him a Rubik’s cube out of balloons. She said she’d never made one before, but she did a brilliant job and he thought it was fantastic.

“After that Jacob would look forward to going into UCLH every Friday as he knew he would see the Spread a Smile team. It helped him get through the week. Even though it was the worst time of my life, if you ask Jacob, he will say it was the best time because of Spread a Smile. He looks back at that time at UCLH so fondly and they helped him deal with what he was going through and find a routine within it which was so important.

“Marina the Spread a Smile artist also painted his radiotherapy mask for him which he had to wear for proton beam therapy under anaesthetic. Jacob wanted it painted with a space theme and every time he was put to sleep for his treatment, he would dream he was going off to a different planet. It helped to make it a positive experience and give him happy memories and he now proudly displays the mask. It wasn’t a scary mask because it was his space mask.”

“Spread a Smile has given us so much. During the Easter holidays, when there were less things to do in hospital, Jacob and his cousin did an online magic show session with them and it was so much fun. He has learnt magic tricks which he can now do himself. Jacob finished his radiotherapy treatment in April 2023 and even though we are out of hospital now, Spread a Smile is still there for us. They sent him a Smile Hamper at Christmas time full of presents and organised a special online zoom party for his birthday. They are so kind.  

“When we were in hospital I was sat chatting to their team about music and I mentioned I liked S Club7. The next thing I knew, they were all singing ‘Reach for the Stars’ for me. It was something just for me and such a special moment which made my cry. I was so grateful and touched.

“Everyone is so awesome. A lot of people have helped us through this awful time but Spread a Smile has helped us both more than anyone. They were there for us at the worst of times in hospital and to this day as well. I’ve felt so supported and less isolated and that means so much. Jacob’s ‘wish’, organised by Make a Wish, is to go back to London and visit UCLH so he can see the Spread a Smile team.”

Jacob is doing well and has regular MRIs to keep an eye on his brain. He said, “Spread a Smile are really COOL! I love the magicians and the dog that came in was really cute. I met a guy that made up poems and he made up one about my Auntie and Cousin coming to visit. It was so brilliant.”

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