The 'Disney Fund' is snowballing in that we've had another offer of some funds as soon as we sort things out and make it all official. PJ has looked into it and we need to set up a Company Limited by Guarantee so as it's all legal etc. We also will initially raise funds for the Disney trip, but if at some stage we need to pursue other, more pioneering treatment such as proton radiotherapy in Boston (if the tumour does not do what want it to and skip town), then we'll use the fund to ensure we are able to do all we can for Leo. Along the way, we're also going to raise funds for Clic Sargent who have and still are, an absolute Godsend for us and plenty of other children and families in similar positions across the UK.
PJ and I will be speaking with Leo's doctors tomorrow to find out when a good time would be for us to plan the Disney trip for Leo. I will also speak with the Christian Lewis Foundation who are a charity who help children like Leo to get to Disney so more details to follow.
Things are also snowballing as PJ is talking about throwing himself out of a plane, all in the name of Clic Sargent and with a parachute on his back, although he may split it with the Disney Fund. And I am trying to get in touch with all the old celebrities from both the sports world and showbiz whom I once knew who can help us organise a big night of celebration, dancing, singing, eating, drinking etc etc, and to raise some funds either towards the end of this year, or perhaps next year is a little more realistic...it's not as though we have enough to think about, is it??
Right now, PJ and I are feeling like we need to use our energies to focus our lives for the greater good. It's too easy to become marooned on Planet Cancer and so if we can use this energy to raise funds for Leo and support other children and their families, then why not? If ever there was a time when we felt that life is to short, now is it. Yes, we've moved to Chicago and yes, we've moved to Spain, and talked about doing so many other things. Now is a time for action and so if we're not motivated to take action now, when will we be?
The other final snowballing effect is it looks like we may be able to move into the house here in Bristol in the next week or so - as long as it's still available. It will be a very small step to normal family life but a step, all the same.
Finally, Leo's not done so well on this round of chemo. By that I mean he's been much more sick and much more tired, but very cute with it. He was pretending to be in school this afternoon and was having 'conversations' with Miss Cara (his fabulous teacher at King's College, Murcia) whilst also telling me to go to work! Do you think he's trying to tell me something? He's also managed nearly a whole jam sandwich which will be his first proper 'meal' for 3 weeks!
The docs have kept him in hospital after completing his chemo this morning as his line is still not so good; it's better but not 100% so it's a wait and see game right now. Whilst the decision had been made on Thursday to take the line out, as it's responded well to the IV antibiotics, perhaps we'll get away with it this time. I'd rather them not take the line out; not because of the two general anaethetics required to take it out and then put another one in. I'd rather the line stayed put as I don't want Leo getting all excited and thinking he's better. It will be awful to then have to tell him he needs another one and I fear it could set him back mentally. Sounds silly to say that about a three year old but his mind is just as crucial as the rest of it as we've learned over the past few weeks. We're on top of the mental game right now with him and he's in a good place. I think seeing Sophie, Andrew, Julia, Jack and Marie over the past weeks has boosted him immensely, plus the 'pillow /anger' talk PJ and I have had with him, and so we want to do all we can to prevent any cause for regression to the angry Leo we had seen before.
Anyway, tomorrow's another day...
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