Saturday, September 17, 2005

Home and Healing

Well, we got home earlier than expected last night, around dinner time. Our good friends the Maddocks had dropped off dinner and it was waiting for us. I (Tiffany) sat with Abby while Mark got it all ready. She did really well. She doesn't do well with one of the relaxing meds they give before going into the OR so Mark went in with her, all gowned up. He said she was just chatting away with everyone and asking about what everything was. Then they put her under and he laid her down on the bed and left. 3 hours later we saw all the docs (in the meantime I took Anna to the zoo, she had a ball) and everything went fine. She has a new mediport on the opposite side (left) and the broviac site is healing without stitches. Her eyes are pretty red and bruised but will look worse than they feel for her. She also had a spinal tap and two doses of chemo. She came out of the anisthesia pretty confused and upset that her eyes were draining and she couldn't see but once we got her into the van she fell asleep and did fine for the drive home. Anna sang us Barney songs and a few made up ones of her own about flushing the potty the whole way home so we were kept entertained! Thanks for all the prayers! The next few days will be filled with her getting used to her eyes, healing from all the pokes and prods and starting the side effects of the steroid and other two oral chemo meds we started yesterday for this new maintenance phase of her treatment. So pray for lots of patience for us and that no infection develops in her eyes, there's a 10% chance of one. But all her blood work is excellent right now so that's good! Oh, and the doc said that the broviac needed to come out, it was hanging by a thread and looking pretty, well, lets just say it wasn't as clean as when it went in!

Thursday, September 15, 2005

Surgery Tomorrow (or today, if it's Friday when you read this:))

I've know this was coming. I've known it. But once again, over the head it has hit me.

Tomorrow morning we will make our trek down to Denver again for another start of yet another phase, the last and longest phase, Maintenance. A rotating cycle of redundant treatment that will last about a year and a half. We'll start it all off as I said in the last post with a barrage of surgeries, chemo treatments and oral meds at home... just to keep things exciting.

And oh yes, don't forget about Decadron! Grumpy Ville, here we come. Hopefully it will be a bit better this time... but I'm not holding my breath. I think the hardest part of these time is the fact that she is always doing so good right before them! Swinging, playing, laughing, running... And then tomorrow, things will change and she may be back to sitting on the couch sucking on her fingers, smelling her blanket and asking for lots of pasta dishes to keep her satiated. Just not really looking forward to it if I may say so.

But on the flip side, we have had a great few weeks and this will be mild in comparison to Delayed Intensification! Even if it is tough, it should only be that way for about a week. Once the Decadron wears off, she should bounce right back. And it's fall, our favorite season! So, once again we'll take it in stride... but that stride still concerns me.

I was talking to a friend at work and saying something about how this whole treatment has felt like a really long run. The first part you are just pooped but then you kind of get in the groove, get your second wind and feel pretty good, then further along, you really feel good...still hard but you're just in the zone. That's were I feel like I am lately, just came off a big hard run up a hill but I'm still running, the whole family is actually, and yet I feel really good. My concern though is that somewhere in this next part of the race, the year and a half long part, that I'm gonna hit the wall, bonk out, my legs finally failing me...

That's my concern, that's my metaphor, that's my families' life right now.
Pray that things go well tomorrow, that Abby does as incredible as she has in the past, and that our families emotional, spiritual, and physical tanks will be filled up for the journey that still lies ahead!

Thanks for all of your comments, prayers, encouragement, notes, meals, financial help, friendships, and even for taking time out of your day to read my often disjointed little rambling about Abby, my little trooper of a girl who has been through more than I'll ever be able to comprehend... and still, for the majority of the time, has a smile... A BIG, BIG smile on her face.