The return of 'Mr Nose' (Day +54)

It's Saturday night. Tim and Max are happily watching the cricket and "Grandpa in my Pocket" respectively, and I am stuffing my face with Chicos not particularly interested in watching either of those options. So, I thought it a good opportunity to post an update.

It had been recommended for some time that Max be allowed to eat - but preferably small amounts often through the day. Thursday this week was the toughest day for me so far. It had been a rough night with constant demands for food starting from 4am! Every few minutes Max would scream for either some sort of biscuit, noodles with tomato sauce, banana with honey, or a combination. It is an incredibly draining exercise to have to continually distract a nearly 3 year old from food - who is starving and on steroids (which increase appetite and rage!). I was trying to withhold giving Max to much food at once, as I knew full well that too much food would lead to stomach cramps, which would then lead to hours of diarrhoea. Neither option is a pleasant one: a) go insane with listening to shreaking food demands, or b) spend hours upon hours sitting at the end of Max's bed catching and cleaning up 'crap'. But as you may be able to imagine having to deal with both of these I was close to breaking point. We had passed the 3 week mark of being back in hospital, Max was the same (or worse), and no-one is able to give us any indication of how long it will take to improve. The standard response is "Patience, this just takes time and every one is different".
To top off my already unstable state, the dietitan and Dr's came in the room in the late morning and said that they wanted to try nasal gastic feeds......that meant having to put in another "Mr Nose". As this is a very unpleasant experience, a happy drug was required (Midazolam). But before this could be administered, Max was required to have 'nil by mouth' for 2 hours.....can you imagine! It was at this point I began to cry. It had all got too much.

Our Dr M was unbelievable, he said "I have some spare time, go out and grab a cup of tea, I'll stay with Max". I took him up on his offer and hoped to find somewhere to be alone for a while.....but do you think I could. I went to the bathroom, of course three people followed me (as there was only one toilet there I couldn't really stay; I went to a usually quiet parent's retreat room - a number of people were in there having some sort of party. There really wasn't anywhere else to go, so as I was feeling a little better at that point, I decided I'd just go back to our room and deal with what I had to. On my way back however, a random Mother - who I had never seen before - stopped me in the corridor, grabbed me by the shoulders and said "Are you ok? It does get better, look!" and pointed to her son, whom I'm assuming was either in remission or cured of cancer.....and there I went again. The genuine care and support of everyone on level 6 oncology is beyond words. I snuck into another small parents room only to be followed by Dr M who proceeded to say what a great job I (we) were doing "much better than many others" and although our little boy wasn't himself at the moment, he will be back. I think that has been the hardest thing this time around, Max really hasn't been himself, and that has been so difficult to deal with. I also had a visit from a wonderful guy 'Mika' from Challenge who must have spotted me with my beautifully red, blotchy face, and asked if there was anything that he could do for me. Within an hour, he had arranged for me a voucher for a 1 hour full body massage!!!

My parents (Oma and Opa) came in at around 3pm on Thursday at which time I headed over to our room at Ronald Mc House, had a shower and put myself to bed. I stayed there till the next morning! It did me good - so thank you Mum and Dad and to each and everyone of you that helped me through that horrible day. Thankyou also to Mawa for looking after Max today so that Tim and I could venture out into the world on such a beautiful day!

Anyway this post is getting too long and I'm tiered, so I'll keep it short from now. Max now has "Mr Nose" again. His poos have been 'different', at times more formed with the occasional looser session - just to keep us interested. It really is like a lottery ticket each time I change his nappy "What'll it be today? Sloppy (losing ticket) or formed (winning ticket!)"...oh the suspense!!! His skin is better overall, so that's good. Oh yes, and we have definitely been getting more smiles....which is great!

I'm now very tiered and feeling quite sick as I've finished off that pack of Chicos, so I'm signing off with the
hope of continued improvement in Max's skin, bowels and spirits......

Thankyou to Baby Jack ( and his parents!) for his special present for Max xx