We would try and do normal things like go around to my sisters house and take him to play with my nieces and nephew but he would get very scared and want to go home.
But when my niece Gemma would play with him it calmed him down and he would smile at her and touch her face, that was lovely to see. We were due to go for his transplant in May 2003 but when we got there the Donor had anemia and we had to go home for another 5 weeks!!! So disappointed!!
Over the next 5 weeks Joes condition worsened so much, he couldn’t walk properly, couldn’t see hardly and was completely reliant on me for everything now, his tantrums got worse and he would cry so much, all I could do was cuddle him and make him feel safe. He would touch my face and smell me and he knew it was his mummy and would calm down. We would snuggle up in bed I would still read to him, just to give him and me some normality. I found it so hard doing everything on my own, people would help occasionally but Joe wouldn’t go with anyone else so it was hard to do a lot of things but we managed. We went out for a walk in his pushchair with my sister and nieces and nephew just to the train station around the corner from us and we had this picture taken together and he smiled for the first time in ages and it will always mean a lot to me, our special time together before all the tests started again.
It was time to go back into Sheffield hospital for his Bone Marrow Transplant it was June now, 6 months since he was diagnosed, he had lost so much in that time but we still had to give him a chance!!
June 10th 2003, Joe started his chemotherapy he was hooked up for 6 hours.
The nurses said he would need a nose tube so he could take all his medicines as there were so many, he screamed when they were doing it I couldn’t watch, he was so upset and didn’t understand what was happening. We eventually calmed him down and he slept all night.
June 15th, started cyclosporine (anti rejection drug) still on Chemo but oral now. Joe was very upset today gave him something to calm him down. This went on for the next 3 days. He was really upset and all he could say to me was were is my mummy she’s left me, then he told me his address and told me to take him home to his mummy, he had know idea who I was, it totally devastated me and I realised he had dementia , the doctors told me that was one of the symptoms of ALD, I just hugged and hugged him to see if he could touch my face and smell my hair like he did before but he just looked confused an scared . That was the last time he spoke I just felt so desperate and frightened. But when he was ever upset after that I was the only one who could calm him down, the nurses said he could sense me which gave me some comfort.
In between we had visitors, people would bring him teddies and toys and lots of get well cards, our room was covered in posters and get well wishes. It touched me so much knowing people loved him and were thinking about us.
June 19th TRANSPLANT DAY: 1.5 litres of Bone Marrow, Started at 4.30 pm and finished 10.30pm everything had gone well today. What an amazing lady for giving my son a chance.
June 20th: Joe had to be fed by tube now as he couldn’t keep anything down it was called TPN and about twenty drugs a day! He was in isolation now nobody could come inside the room except us and the nurses.
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