June 21st: Joes 6th Birthday: People came to see us today but they couldn’t come in the room they had to sing Happy Birthday through the intercom, Very sleepy today. The nurses painted there faces and made a cake for him they were brilliant!!!
June 23rd: Poorly day , sore throat , mouth and tummy ache all day started on 90 ml of morphine given to settle him. Slept until 3am up for 30 mins and settled him until 7 am.
June 24th: Very poorly today, puffy eyes, rash and nose bleeds, given 110ml of Morphine and his cocktail of 20 drugs . Hair falling out today so bought little silver box to put a bit of it in. His breathing has changed, very heavy
June 25th: Very Poorly today swollen and puffy eyes, breathing really difficult, really feel helpless at the moment! Joe is given a nebulizer and calms down
June 26th: Dr Vora & Dr Sharrad are happy with the Bone Marrow transplant but they feels it hasn’t helped Joe and maybe made him worse with the ALD
I was so frightened now we might have cured Joe like this, I felt so guilty for having these feelings! But he hasn’t spoken or made signs of improvement since we came here he is just getting worse everyday. The doctors stopped his Lorenzo’s oil as they didn’t think it was helping and there was a chance he could breath it in to his lungs.
Over the next few days and weeks joe’s platelets were back to normal and he was out of isolation, still taking more than 30 drugs a day but at least people could visit now.
Joe either slept or would be in pain or would just lay there in a world of his own, apart from two or three days when he would laugh and giggle uncontrollably.
It was so wonderful to see and gave me a little comfort but the doctors just said it was the changes in his brain and things shutting down that made this happen. This was the last time I heard him laugh and I will remember it always.
We would read to him and have lights and sounds around him but he didn’t really have any response, I missed the sound of his voice so much and just wanted him to hug me back, it was breaking my heart. I used to go for a shower every morning and cry and pray that Joe wouldn’t live like this forever; I just couldn’t bear to watch my beautiful boy suffer anymore.
Everybody would tell me he would make a recovery but I just knew that he wasn’t going to, then one day a doctor came to examine Joe’s chest because he was struggling to breath and very chesty and he told me Joe was not swallowing properly and it was due to his ALD and he wasn’t going to survive, his condition had become progressive very quickly and it was only a matter of weeks. I was so shocked and numb but at the same time relieved for my little boy that he wouldn’t have to go through life in this much pain anymore and he would soon be at peace.
Over the next few weeks it just became a waiting game we kept him as comfortable as possible, people came to visit still insisting the doctors were wrong and he was going to be fine! I felt like screaming!!!!! But most of them would be very supportive and I couldn’t have got through the last weeks without all my family and friends. All the nurses were brilliant and one partcular nurse called Julie was like my second mum in there she kept me sane and was always there for a chat or a hug whenever I needed her. I also made a good friend with Jude, who was Joe's social worker. She was fantastic and sat and listened to what I ever I had to say. Without these two and all the other nurses and doctors, I don’t think I would have got through it, they were all amazing. They will always have a special place in my heart.
Joe needed more and more pain relief he was on Morphine and midazalam and he was never awake which was a blessing. They told me that he was in a coma at the beginning of August and that it was only a matter of days now, my days and nights were just a daze and I treasured every minute with my beautiful boy. I remember laying with him about week before he passed away and telling him that it was ok to go and Mummy would be ok and I would make him proud because I was so proud of him I wasn’t going to let him down ever. Everybody came to say goodbye that week it was so hard everyday I just wanted to die with him but I knew I had to stay strong.
Sunday 17th August 2003 at 8.25pm 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 ok now and one day we will meet again and I will see him smile and hear his voice and give him the cuddle I so long to give him, but until then he knows that I love him more than the moon and the stars in the sky and the planets in space
Sweet Dreams My Angel
Love you millions
Mummy x x x x
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