Soooooo tired, last night I was up nearly all night in between changing Brody's running poos, getting him a sick bag and buzzing the lovely nurses to turn off the beeps on the machines. The day isn't much better either. Poor Brody is also sooo tired and sick of it all!
Our Christmas tree is back, we don't have 9 like we did in transplant but 6 is still alot. It makes it hard to pack them up and wheel them over to the shower, but we cope.
Doctor's have started Brody back on the steroids today as they believe his GVHD has got worse. He will be on them for 3 days to settle it down a bit and then see what happens after that. They are going to try and see if they can get the PET scan early in the week as they said they think he might have GVHD in the gut. That's what i have been trying to tell them, as he has runny poos with or without feeds, (10 poo's from 7.00am to 6.00pm), feels sick and vomits all the time. It has to be, but they are hoping the steroids will help that too, or they might put him on another thing that helps the gut.
He is getting more itchy with his rash and is still very tired. He doesn't wont anyone but me, and doesn't talk to anyone or isn't his cheeky self with the nurses any more.
But otherwise we are ok, better then some, as we lost another little friend this week. Its so hard to watch so many children with this horrible disease. A wonderful friend ( LOve you Sara) told me last night, that she was told not to get attached to other families in hospital, but how can you not, your whole life is the hospital and children with cancer. You become each others support, friend and family. You see each other all the time and have so much in common. So its really hard not to get attached. But when you hear that their child has lost the battle, its really scary, heartbreaking, a sense of lost for one of your own. Some days are harder then others.
We have another friend, that we talk too, and she is amazing as she sits in her daughters room every minute of the day, as her daughter is waiting to join god, its heartbreaking and i have shed some tears for her, but try to be strong as she needed a friend to talk to while alone in the hospital room. Since seeing my sister Sonya and helping mum and dad with my pop on the night he past, i have become a strong person and saw how they all looked peaceful and out of pain. Death doesn't scare me any more its the pain of not having them here with us that hurts.
People just don't understand what happens here in the hospital, families and children need more help to make their life better, as in Westmead children's there is over 200 children with cancer and everyday a new child is added. Queensland hospital is the same. Governments give a little bit of a helping hand to hospitals but its not enough.
Thats why i started the DVD's for sick kids facebook page, to get more DVD's for children to watch, as they are stuck in a room for 24/7, days, weeks and months doing the same old thing. Hospitals cant afford to buy things like this or other things normal children get to play with or do at home. I just wish i could do so much more for everyone.
Its so sad and depressing to be here sometimes, as you really feel everyones pain and hurt. I am not amazing or a super women, i am the same as everyone else who loves their child with all their heart and would do anything for them. I am a mother, and i am proud to have that title.
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