Well... we had three and a half days of a treatment free Joshua and it was awesome! On Friday we went to Sylvia Park and it was fabulous, going there and taking our beautiful son with us. The kids each got a toy, Joshua got a special bear from the teddy factory which of course has a spiderman costume and has been called 'spiderbear'.
We also got him out yesterday afternoon to his cousin Lanis first birthday. He hung in there for an hour and a half which I thought was very good considering. It was great to see extended family, my cousin Scott and his wife Catherine, my Aunty Mary and Uncle Alex. If theres one good thing I can say for something 'tragic' like this, is that it brings family together. You always think about 'making the effort', but it never happens, we are all so caught up in 'our bubbles' that it's hard to see out of them.
Joshua's behaviour is improving dramatically, it's been hard, because although he's really sick and you will do anything to make him happy, he is still a 'son' and a 'brother' and a 'grandchild' and this means that he still needs to function as such. my latest catch-cry is; 'Joshua, we know you are sick, but you are still part of this family, so please don't..... hit your sister, not share the ipad, throw your food at me!" the other morning, he asked for porridge, which I dutifully made, then dismissed it when it arrived. He threw such a hissyfit I wheeled him outside in his pushchair and left him to it for five minutes. He got over himself very quickly. As a Mum it's tough, the other kids know he's getting special treatment, but they don't have the 'concept' of his illness.
Grandad looks at me with dissaproval one night, because I relent to Daniels nagging and take the coveted 'ipad' off Joshua who then howels with mortal dissaproval.Dad tich, tich's me "He was so happy!" he said. "But Dad, he's had it all day! Daniels got to be allowed a go at sometime!" Its hard going, keeping the peace.
The other issue that we are still having is 'people'. Joshua just doesn't want them around. My super outgoing son has gone shy, very shy. We have two Joshua's, the one that nods and shakes his head when he's spoken too, hides in my chest or hides in his blanket and the Joshua that we see, that engages and smiles and can be subjected to tickles.
We also unfortunately at the end of this weekend said goodbye to Nana, which was really hard. She was here with us for 24 days, kept us all afloat. She's been my backbone, my Mum.
Well onwards and Upwards... this morning (Monday) we became 'cancer patients' and we are into stage 2, so far Joshua has had:
20 days in hospital
15 'blood tests'
1 lumbar puncture
23 Therapy sessions
2 stitches in his head without local
2 drains removed
1 catheter removed
6 IV lines
79 procedures in total.
And it's just the beginning.