Very Poorly
June 23rd: A poorly day — sore throat, mouth and tummy ache all day, started on morphine to settle him.
June 24th: Very poorly — puffy eyes, rash, nosebleeds. His hair started falling out, so I bought a little silver box to keep a piece of it in. His breathing had changed, very heavy.
June 25th – 26th: Swollen, puffy eyes, breathing really difficult. The doctors were happy with how the transplant itself had gone, but felt it hadn't helped the ALD — he hadn't spoken or shown signs of improvement since we arrived, and was getting worse every day.
A Little Comfort
Over the next few days and weeks, Joe's platelets returned to normal and he came out of isolation, though still on more than thirty drugs a day. He mostly slept, or lay in a world of his own, apart from two or three days when he laughed and giggled uncontrollably — the doctors said it was the changes happening in his brain, but it gave me a little comfort. It was the last time I heard him laugh, and I will remember it always.
A doctor came to examine his chest, struggling and chesty, and told me Joe wasn't swallowing properly, and that it was only a matter of weeks. I was shocked and numb, but at the same time relieved for my little boy — that he wouldn't have to suffer like this for much longer.
The Waiting Game
It became a waiting game. We kept him as comfortable as possible. People came to visit, some still insisting he'd make a recovery — I felt like screaming, but most were wonderfully supportive, and I couldn't have got through those last weeks without my family and friends. Julie, one of the nurses, was like a second mum to me in there. Jude, Joe's social worker, sat and listened to everything I had to say. Without them, and everyone else on that ward, I don't think I would have made it through. They will always have a special place in my heart.
Sweet Dreams
My wonderful son passed away in his sleep, and in my arms. He fought so hard, and he was the bravest person I know. He has inspired me to live life to the full, and to never take a day for granted.
I will always miss him more than anything, but I know he is okay now, and one day we will meet again — I will see him smile and hear his voice, and give him the cuddle I so long to give him.
