What a difference a day makes
WOW. What a crazy 4 hours it has been. Last night i sent an email to Dr. Yeager asking him what he was thinking now that we know where Eden's platelets are and he replied about 1pm this afternoon and had been conversing with Dr. Mosse in Philly all day. They both agreed that we should start the ABT-751 right away. Right Away? Right Away! So I emailed him back and said can we talk tomorrow at Clinic? ( I was supposed to be driving to Cleveland for a meeting for work....OOPS) Shortly after that email he called to say yes he would be there and we had a few minutes to chat then and he does not think its a good idea for her to wait for platelets to start a different study but said we could try a drug that is sometimes known to improve platelets but only works about half the time if that. So that is where we were and then i got a call from Pat B which is Dr. Mosse's nurse and we started talking and i explained what we wanted to do and she said that was fine but why did i think the ABT-751 couldn't help Eden?? So i began to explain what i have been telling all of you all this time that it might hold it steady but we wouldn't see improvement on this drug.. And she said that is not true at all. So what we have thought to be fact all this time is not at all! So, i talked with Rourke and we decided in light of the facts we have now that it makes sense to get her on treatment NOW. So Monday morning we are headed to Philly. She will be there Monday through Friday for all the tests required for this protocol and then she must go back every 21 days for the next few months and then every 42 days for as long as she is on it. I was thinking i could still make my meeting in Detroit next week but i guess that would be pushing my luck?? LOL
We feel so very blessed each and every day that we still have our sweet girl here in our arms and that she is feeling so well. We know to many parents out there that have only the memory of their child to hold onto. I cry for those parents so often as it is not fair to lose a child EVER!
Eden went to school all day again today and she is feeling oh so wonderful! We will keep you updated as the plan progresses.