The latest BMBs have come in. Luke is at 17%. A couple of days ago it looked like it was 20%, so this is actually amazing news.
The decision is to go the Vidaza route. There aren’t any options for us other than this, because of Luke’s heart condition, and there isn’t any benefit to waiting any more.
We pray that he is one of the responders, and that this huge financial investment will be worthwhile.
Getting someone to inject it is turning out to be an issue. Nurses can’t do it because it isn’t approved. The oncologist will, but everyone is hoping I can learn to do it at home. Why not? If it means someone gets to keep their license, I’m OK with that.
We’re still fundraising the costs, have about half covered. I’m still trying to work on the government at the same time. I’m a little closer than before, have spoken to someone at Pharmion who says they would be willing to supply it if Health Canada would cover it under their Spaecial Access Program. I haven’t got a call back from the government, of course. These folks aren’t exactly responsive. Nontheless, I will keep nagging.
It is beginning to be my strongest trait right now. I’m sure there are a couple of folks on Luke’s health care team who think I’m a ball breaking b****. If only they knew how many hours of shakes and sleeplessness I hendure after each confrontation. By the time this is all over, I will have a skin like a rhinocerous; perhaps that will be a good thing.
Meanwhile, we fight on!
Please send strong positive vibes.
Margaret
.
