11.8.10

[DADA POSTING]

First and foremost, a huge thank you to everyone who made our fundraiser last night such a great success. We had a great time, and got to meet a lot of new friends, some of whom we've only known virtually up until last night. We even met some other families going through a similar situation, reminding us just how many of our friends and neighbors will be affected by cancer in one way or another. Amy's is a great place, and they also do a lot of charity/community-service type stuff there, so we can't wait to start going there after treatment. And a big thank you to Andie, who was a natural as a fundraiser (and emcee). She basically went to every business in FXBG and talked them into donating to the fundraiser. It's like she's in the mob, except she was doing good instead of offering them "protection." All of the proceeds will really help make Evy's treatment down in Alabama happen!

Today was the first day of 51, AKA the last round of chemo! We can't believe round 17 is finally here. Evy needed her last spinal tap, and since the semi-sedation meds in the clinic had been making her really sick, we decided to expand the cycle by a day and have her tap done at the hospital under full sedation. We stopped at the clinic for some count checks and to say hi (especially to the folks there who were Brave and Shaved. They look great!), then we were off to the hospital. Of course, some waiting was involved, but the area where they do sedation has plenty of toys and the nurses there are great. It ended up starting only an hour or so late, which pretty much qualifies as "on time" in the medical world. The procedure was pretty quick, and then I just had to annoy Evy to wake her up so she could have a cookie and some juice, which she had been begging me for beforehand, since she couldn't eat. At first, she was asking me for a banana, and I told her I would get her one. Then, we were sitting in the waiting room, and some child circuit in her brain clicked, and she asked me "banana?...COOKIE!". It was as though she remembered that she can pretty much ask for anything during these type of days and I'll try and get it for her. There was a messy throw up on the way home, but she felt better when we got here, and was excited to talk about Santa (who we'll be seeing several times in the next month or so) and to show off her new Christmas book that we bought today.

Tomorrow through Thursday we have our final three days of chemo! I know a lot of you are wondering, so here's what will happen after that. She'll have her normal cycle of counts dropping, maybe a platelet or blood transfusion, and then her body will recover. Then, they'll be giving her every test they have, not only MRI's of her brain, but full scans of her spine and chest, checking her kidneys, her hearing, her eyes, her heart again, etc. [As Jill had mentioned, the last Echo/EKG went better than the previous, and her heart functions were normal except for some slight enlargement. Hopefully, as she gets bigger, she will "grow into" her heart. It definitely put us at ease. And we will be holding her last dose of Doxo, just to be on the safe side].

Assuming all her test look good, her line will be removed, and then we'll move to a schedule of clinic visits about once a month to keep an eye on her immune system, and make sure there are no lingering effects from chemo. She will have MRI's every 3 months at first, and those will slowly spread out to longer intervals. Our biggest focus at the moment is getting her used to eating again, so that she can lose her feeding tube. This is a bit up and down, but she has been very enthusiastic about trying different stuff out. It also might be a matter of us backing off on her feeds, just to get her nice and hungry. But we'll worry more about that once chemo isn't making her nauseous.

The prognosis at this point is very good, and we didn't dare hope for such an outcome one year ago.

I'm posting some pics below, mainly of the girls looking adorable in their Halloween outfits. Hope you enjoy, and thanks again to everyone who helped out last night!