More than the moon and stars
Just before Joe lost most of his sight, I was having a tearful day and went to sit on the stairs so he wouldn't see me cry. He came through and saw me anyway. I said mummy was being silly, and that I loved him very much. He went to the toilet and got me a tissue, wiped my eyes, and sat down with me — it was as if I had Joe back for a few minutes.
He held my hand and told me he would always be with me, and that he loved me "more than the moon and stars in the sky, and the planets in space." We said that to each other every day after — it was as if he knew that one day he might not be able to say it.
He loved putting his James Bond DVDs in order, spending ages taking them out of the box and back in again. One day, in the kitchen, he screamed out that he could hardly see anything. I just held him and told him it would be okay, knowing it wouldn't be.
Do Normal Things
We tried to do normal things — going to my sister's, playing with my nieces and nephew — but he'd get scared and want to go home. When my niece Gemma played with him though, it calmed him, and he'd smile and touch her face.
We were due for his transplant in May 2003, but the donor had anaemia and we had to go home for another five weeks. Over that time Joe's condition worsened so much — he couldn't walk properly, could barely see, and became completely reliant on me. He would touch my face and smell me, and know it was his mummy, and calm down. We would snuggle up in bed and I would still read to him, just to give us both some normality.
We went out for a walk in his pushchair with my sister and the children, just to the train station around the corner from us, and had this picture taken together. He smiled for the first time in ages. It will always mean a lot to me — our special time together, before all the tests started again.
Sheffield Children's Hospital
It was time to go back to Sheffield for his bone marrow transplant — six months since diagnosis. On June 10th, Joe started chemotherapy, hooked up for six hours. The nurses said he'd need a nose tube for his medicines; he screamed when they fitted it, and I couldn't watch.
On the 15th he started cyclosporine, an anti-rejection drug, still on chemo but oral now. He was very upset for the next few days, telling me his address and asking me to take him home to his mummy — he had no idea who I was. I realised it was dementia, one of the symptoms of ALD, and it devastated me. That was the last time he spoke. But when he was upset after that, I was still the only one who could calm him — the nurses said he could sense me, and that gave me some comfort.
People brought teddies, toys and cards; our room was covered in posters and get-well wishes. It touched me so much, knowing people loved him and were thinking of us.
Transplant Day & Joe's Birthday
June 19th, Transplant Day: 1.5 litres of bone marrow, started at 4.30pm and finished at 10.30pm. Everything had gone well. What an amazing lady, giving my son a chance.
June 20th: Joe had to be fed by tube now, on around twenty drugs a day, and moved into isolation — nobody could come inside the room except us and the nurses.
June 21st, Joe's 6th Birthday: People came to see us but had to sing Happy Birthday through the intercom. The nurses painted their faces and made him a cake. They were brilliant.