In the unit with finger crossed

Ciara is now settling in to the high depenency unit and getting in to one of her new DVDs. Walking With Dinosaurs this evening. I can't remember who got that but if you are reading...thanks.

A couple of posts ago I mentioned that Ciara was going on a trial for a drug called Difibrotide to help prevent a liver disease called VOD. From what we understood, the trial meant 50% of patients would get the drug continuously while the other half would get it only if there were any symptoms. From what we hear, those who have it continously from the start sail through the treatment without getting VOD. However because of a lack of stats, they don't know for sure if it is the pre-treatment with difributide that is causing this or whether they just wouldn't have got VOD anyway. We previously thought that taking Ciara off the trial would allow us to pre-treat with difibrotide any way. This would be good for Ciara as her liver functions, while not bad, as yesterday's blood test revealed, aren't perfect either, and the chemo drugs she's going to be taking won't help that. Unfortunately the drug is not as profitable for the company as it used to be. There's not much of a market for paediatric drugs as it is and difribrotide is very expensive to manufacture. My heart bleeds for their poor shareholders. As such, the only way of getting the full treatment is the fifty-fifty chance of going on the trial. There's no other way of getting the drug short of actually getting the disease. (I wonder if they've checked on eBay).
So we're at the mercy of a trial manager in Italy tonight and we will find out in the morning if Ciara is one of the lucky 50% who can difribrotide from the start. So, fingers crossed again.
Yvonne has now headed over to Ronald McDonald House. The staff at the house have saved the best room for our time of most need. It's big, has both a shower and bath, plus a balcony! We can now sit out and watch the drunks stagger home and have a ring side seat for Crumlin's fine street fights.