Saturday, July 7, 2007

Day 45

Katlyn is doing very well. Her neautrophil count as of yesterday was 473, which is a very good sign because she didn't go down. Who knows how long it's going to take her to make her way back up, but I'm very optimistic that's that is what we are seeing. Each time Katlyn has her cells checked we will know more and more and be even more sure of ourselves. It's really hard to base her numbers on one blood count, instead we need to look at the whole trend. From what I've learned, watching over a week or so gives a better idea. So looking at the past week, gives me the idea that Katlyn is up. She's still a little below 500, but she'll get there soon.
I was talking to her doctor about whether or not they will give Katlyn's cells back to her. When she had her harvest done, the took some cells and set them aside just in case they needed them for anything. They are the only cells they have that haven't been exposed to the gene therapy. At 30 days the doctors have the option of giving Katlyn back her cells if her neautrophils aren't above 500 for three blood counts. Well her doctors seem to agree that at this point, giving Katlyn back her cells wouldn't have any benefit. They would like to keep them in case they need them down the road for anything.
Katlyn had some research blood taken on Tuesday and I haven't talked to the doctor about anything they've found yet, but he told the nurse to let us know that the ada activity was good and he would talk to us on Sunday. So I'm just patiently waiting to hear what he has to say tomorrow. I think it must be good. Any signs of ada activity worth noting would be a good sign, because that's what Katlyn is lacking. He had told us they weren't expecting to necessarily see anything this early. We'll see what he has to say tomorrow.
Another thing I found out was that Katlyn will be coming back here once a month for the research blood to be taken. So it will be a month from the Tuesday that just went by. I think we will probably be still here because we have to stay here for at least two weeks after Katlyn hits the 500 mark. Besides, we would like Katlyn to be exposed as little as possible, ideally not at all. The less plane trips the better, is the way I see it. It really wouldn't make sense for us to go home one week and come back the next. It think it would be in her best interest to wait it out.
So we are trying our best to get things at home all sorted out for when Katlyn goes back. We need to purchase hepa filters, a water purifying system, tear up carpets etc. etc. It's really quite a struggle since we don't know much about the hepa or water purifier. Besides that neither of us has worked in a really long time. I'm trying to do a little research to see if there's any funding available for the water purifier. It would be nice if we could find something, because from what I've seen so far, they are not cheap. It's not optional though. Katlyn must have clean water for both consumption and bathing in order to go home. Things will work out.