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Benjamin's Story

Benjamin's family visited Ben's Retreat from March 27th.

"Benjamin was a healthy normal child, he was in the fire cadets, he loved football and was a Chelsea supporter although he always came with me to watch Manchester United. From the age of 6 he was in a football team firstly with the school but as he grew up various other clubs too. He used to go kick boxing and when he got older that progressed to boxing. He had his first serious girlfriend Kelly at the age of 15. He left school and became an apprentice carpenter. He absolutely loved this. He enjoyed the banter with the other workers even though he was sometimes the brunt of it lol. He passed his driving test aged 17. He loved driving. Then COVID hit and he couldn't have an 18th birthday party.
April 2021 he started getting stomach ache. I told him to write down what he was eating. I wondered if he had developed a gluten intolerance. He went to see the GP on May 7th 2021. I will never forget I came home from work and he was stood there with a piece of paper shaking and said can you take me to hospital please? The GP had told him he had an enlarged bladder and to take an overnight bag as he wouldn't be coming home.
When we got to A&E they wouldn't let me in with him due to COVID. I was going to wait in the car but he sent me home as they said it would be hours. They did blood tests and a CT scan as they thought Benjamin might have a hernia. Benjamin stayed on the phone to me constantly the whole night apart from when he went for his scan. He was scared he shouldn't have been alone he was only 18. Anyway 3am the doctor comes in the room and says you have a mass in your abdomen, I asked was it his bladder or a hernia he said no he was just a general doctor the scan needed to be looked at by a specialist. He said you can stay in of you like but there is no point as no one will be able to see you until Tuesday as it was a bank holiday weekend. Benjamin asked can my Mum stay with me the Dr said no so Benjamin wanted to come home. I picked him up and as he got in the car he said I know it's something serious. I said how do you know that, he said the Dr looked at me like he felt sorry for me. We went home, we didn't even know where Benjamin was referred to. We got a letter in the post for another CT scan and a biopsy of the lump. The biopsy was May 26th. Still we didn't know what was wrong. May 28th I came home from work. Benjamin was very ill with a temperature and in bed. He went to his Dads for the weekend and came home bank holiday May 31st looking pregnant. I said I would take him to hospital he got upset and said no can I just go to the doctors tomorrow because the hospital won't let you in. Against my better judgement I agreed.

June 1st I rang the doctors and the GP called me back within seconds and told me to bring him straight in. She examined him and thought he may have internal bleeding from the biopsy. Benjamin asked What's wrong with me? She said has nobody told you he said no. She said you have lymphoma. He asked what that was and she explained it's a type of blood cancer. He just burst into tears. She sent us straight to the hospital and she phoned ahead with instructions that he is not to be left alone they have to let me in. When there he was taken for another CT scan and put on a drip. About 5pm a doctor came to see us and apologized to Benjamin as he felt people hadn't been honest with him. He explained he has lymphoma but they don't know what type until the biopsy results come back. He said as cancers go it's one of the easiest to treat so Benjamin was lucky. He told us that since the scan on May 7th (it's now June 1st) that the lump had grown over 5cm in every direction and was now the size of a rugby ball. We were transferred by ambulance in the early hours of the morning to the teenage cancer trust unit at Addenbrookes. 9am, 5 doctors came in. The haematologist said in 25 years it's the biggest lymphoma lump he had ever seen. They sent Benjamin for no end of tests and a pic line to be fitted. One of the tests was an ultrasound on his kidneys. At 5pm again 5 doctors came in, one was a urologist. The lump was blocking the tubes between the kidneys and the bladder. Benjamin had to have an emergency operation and couldn't start chemotherapy until after. We were taken to intensive care and later that night he had the op. Thursday 3rd June Benjamins biopsy results were back. The consultant came to see us within twenty minutes of receiving it. Benjamin had stage 4 Diffuse large B Cell Non Hodgkin's Lymphoma. He explained some of the chemotherapy had nasty side effects and that There is a chance he would go blind in his 50's. Benjamin said but if I don't have it I might not make it to 50. He hugged me and started singing in my ear Daniel Bedingfield's we got to get thru this. Benjamin had to have 4 cycles of chemotherapy over 4 months as an inpatient as it was a very intensive regime. Half way through he had a pet scan and over 60% was gone. After the end of treatment he had to have another pet scan. While waiting for the results Benjamin had been able to come home and he had his 19th birthday in September 2021. We went back for the pet scan results and were told there was still 4cm left and he would need radiotherapy to get rid of the last bit. We went in and he was measured up and tattooed ready but over the weekend became very ill. I had to rush him back in and the cancer had grown to 12cm and twisted round his bowel. So he had a different round of chemotherapy which failed. It was then switched to a different type of chemotherapy, the plan being if they could get him into a small enough remission Car T therapy could be tried. At this point he had to go onto kidney dialysis. Benjamin was struggling to breathe as the lump was pushing on his lungs so they put him into an induced coma after administering the chemotherapy to give it chance to work.

After 10 days the lymphoma perforated Benjamins bowel. He couldn't have surgery as his platelet count was so low because of the chemotherapy so they had no choice but to switch everything off and let him pass no November 2nd 2021. He didn't know he was going to die and neither did we. I think we were under a false sense of security as they had already saved his life once with the kidney operation and he had gone into partial remission. 5 months from official diagnosis to death after being told he was lucky it's one of the easiest to treat.

I know everyone says it about their children but Benjamin really was the best. He was so kind, never in trouble. Even the fire service sent two fire engines to his funeral and read a tribute to him.

Benjamin was my only child and I feel so lost. I am so grateful to Tom and the Ben Saunders foundation for this generous holiday to give my partner and I time away from everything just to think and remember Benjamin.

We have been through so much trauma in a short time and even now the coroner is still involved and we don't have a death certificate. How appropriate that we will be staying in Ben's Den x x x"

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