Friday, 19 March 2010

What a busy week...

So it's Friday night, well nearly Saturday morning actually, and I'm in a small 3-bed bay at the Royal Marsden with Adam asleep next to me hooked up to two machines infusing Vincristine and Doxorubicin into his middle-size body at 2ml/h. Adam is not our little boy and hasn't been for as long as I can remember. He is insistent that he is our middle-sized boy, and who are we to argue?

Now I could claim that I've been in this situation many times over the past 8 months, but actually that would be a gross exaggeration. It's only recently that I have been permitted to spend the night with his royal-middle-sized-ness (well that's my excuse and try telling me otherwise). But me and Mum can take it in turns now and tonight is my turn. It's been a rather tiring and rather emotional week. Since Adam was diagnosed we've kept quite a low profile I guess. I've never been a blogger, or a twitterer (?) or a facebook addict. We always had it in the back of our minds that once Adam was through stage one then we would start to raise money for ch14.18 antibody therapy (which is what some UK kids are already having over at Children's Hospital of Philadelphia). And I suppose we hid behind that decision a little. But after the last set of results we came to the realisation that ch14.18 wasn't the only reason why we might need to go to America and we were reaching a point where the course of Adam's treatment was starting to move out of the mainstream.

So having agreed that we needed to do something now or it would be too late (it still might be, but let's not go there) I felt we had to open up and get everything out there. I also wanted to have a decent website to focus attention and start to bring people who haven't been closely involved with our family into our world. I thought about trying to do it myself from scratch but the trouble was I hadn't done anything with websites for ages. So I roped in a very willing and very able Antonella who put together a first-cut of the design of the site within 24 hours. I like Antonella. She stays up late and plays with computers like me. Along with Lisa, who designed the Adam's Appeal logo, she is my new best friend. I somehow think that by the time this is done I'm going to have lots of new best friends.

But of course most of the words, photos, slideshows and videos are mine. And putting them together wasn't an easy thing to do emotionally. And also being so particular of course I had to do it over-and-over again until I was happy. In an obvious way it was tough and draining. But in another it was quite invigorating. Because the thing about having a child with cancer is that you can't actually do very much. I mean we try to do the right things and get Adam to eat and to make sure he drinks enough. And of course we (again mainly Mum) give him all the medicines that he has to take daily. But you're still left with the feeling of almost complete helplessness. I couldn't tell you what's going to happen with Adam tomorrow, or next week, or next month. And what does happen will be nothing to do with anything I've done. So putting together the site and kicking off the appeal allowed me, for a little while at least, to feel like I was doing something to make a difference. Spare a thought for Alison too who ended up thanks to my stupidity watching the slideshow sitting with Adam. That didn't last long.

So eventually after a few very late nights we were ready to go, apart from the Just Giving site which took longer than anything else. Nobody's fault, just one of those things, but by this morning I was getting slightly frustrated. I'd heard feedback that people wanted to donate but when they got to the site they couldn't. All I could do was ask them to come back later!

But now the appeal is officially open. And we've already got people planning to do amazing things for us. And we've got people making unbelievable gestures. There's a massive challenge ahead to raise the money we will need. All I can say is that I don't know where this thing is going to end, but for now I'm just really glad we got it started.

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