Tuesday, 17 August 2010
Stem Cells. What Stem Cells? ...
After the second stem cell harvest last Wednesday and Thursday we have collected a total of 4 million cells. It's not a completely disastrous outcome but neither is it what we'd hoped for. Having been told that the requirement for transplant is 2-3 million cells we have the absolute bare minimum. Therefore, as things stand, there is simply no room for manoeuvre. After surgery the plan is MIBG therapy with stem cell transplant and then high-dose chemotherapy with stem cell transplant. That will be all the cells used up. Any further treatment options that cause bone marrow depletion would be ruled out. More MIBG therapy, for example. We are going to inquire about collecting cells direct from bone marrow extraction, but it's something The Marsden haven't done for a long time and they seemed to suggest last week that there would be little point as the cells are most likely just not there. Still we'll ask the question.
The stem cell harvest itself was largely uneventful. Adam screamed the place down when it came to removing the vascath from his groin this time. Knowledge is a powerful thing - the previous experience of removing the dressing, stitches and line definitely had a negative effect on him. For some reason he'd imagined it worse than it really was (not that I am suggesting that it was in any way pleasant). In the end we adopted the brute force approach. I held his arms down, Alison held his legs and the nurse whipped the line out. I say whipped because it really was a two second job. Adam's response when we let go of him was "What, is it out already? That was quick."
Away from hospital business we've been trying to enjoy the summer holidays as much as possible. Last week I took Jake to watch the England friendly at Wembley. I'd never taken him to Wembley before and so it was nice to get to do something like that with him. Still, I couldn't help but wonder as we made the trip back home whether I would ever get the opportunity to do the same with Adam in years to come. As enjoyable as the evening had been it was this thought that dominated as I quietly cried a few tears into my pillow that night.
I also have to report on something a little bit crazy that we did whilst we were away at the end of July.... we bought a caravan on a holiday park. Completely on the spur of the moment whilst visiting a friend of Jake's. When I say on the spur of the moment I really mean it. Owning a caravan is not something that has ever been mentioned before, even in passing, in all the years we've been together. And yet in the space of little more than 24 hours we selected, sited and signed contracts on one! It just seemed like the perfect thing to do. Forget the cost - it's just more money on our mortgage and the success of the appeal has greatly reduced the chances that we'll have to finance treatment via that route. What it means is that we can get away as a family, down to the coast, take in some sea air whenever we have the chance. And we are able to set things up so that when we are there we have everything we need to replicate what we do for Adam at home. Last night Adam was sitting outside drinking a glass of milk and cooling down after a game of 'It'. I heard him having a conversation with Alison;
"Do you like the caravan Mum?"
"Yes of course."
"I do. I love it."
That's more than good enough for me. I'm so pleased we've done it. We have absolutely no idea when we will next be able to go on a family holiday like we have in the past; it could be years. However, now we can steal days away when Adam's not in hospital. Having something positive to focus on, something for everybody in the family to feel good about, has given us all a boost, We've been there these past two weekends and hope to spend as much time there as possible before Adam goes in for tumour surgery at the end of August.
Adam and Alison are even starting to become quite well known on the children's ward at Chichester hospital, though a large part of that is down to the Nintendo that they supposedly left there and had the nurses hunting high and low for, only for it to reappear in the boot of our car the next day. I asked Adam whether Mum was embarrassed when she told the nurses we'd found it. "No" he said. "But I was."