Saturday, July 30, 2005

Reds are Meds.

So yes, this is a picture of our calander for this week. All the red things are Abby's meds... Crazy huh?! Abby's doing great with all though, I don't know if we could say that for Tifffany and I but we're doing OK. Here's the typical daliy schedule for a few more days and then we'll see if we have to keep up the antibiotics or not.

6am- hook up Abby to Vancomyacin
8am- unhook her, and put in a Vanco/Heprin lock (in her Broviac)
8am-Kytril (to counteract nausea)
8am after breakfast... Zantac
8am after breakfast... Mouthwash and Nystatin (to keep mouth sores at bay.)
12pm after lunch Mouthwash and Nystatin
2pm hook her up to Vanco again
4pm unhook her and give AraC
4pm lock her with Vanco/Heprin
6pm Zantac
6pm mouthwash/Nystatin
7-8pm give her 6-TG(hour after food, no milk, no citrus... they make it not work, milk, or super potent, citrus).
10pm Hook her up to Vanco
12am unhook her and lock her with Vanco/Heprin

I write that all for my memory as much as I do for your information. Lots to take in and do huh. But as I said, Abby is doing really well with all. She is playing much more with Anna, walking around pretty good, and is very giggly. She doesn't want to leave the house much but neither do we after 3 trips down to CHOA last week. They ended up putting her on a second Antibiotic on top of the Vanco for a couple days last week becuase she had a little fever and they wanted to make sure it wasn't the blood infection. She's had this blood infection for pushing 3 weeks now so they are really trying to knock it out for good. The crazy thing is that she might not have had any blood infection, it could all just be contaminates from handleing it but they don't want to take any chances, so they treat it and keep culturing the samples.

Other than that, there really isn't much to say. This is just our life now, and it's pretty demanding. But the high pace is offset by having my smilely little girl back and that is worth it all.

Off to drink more coffee.

Tuesday, July 26, 2005

Starting DI, round 2

Hey all,

I took Abby down to the eye doc yesterday and we stopped by CHOA to get her blood counts. The machine said that she wouldn't pass, ANC 400, but when they did the manual count under the microscope she passed with a 748! Weird, I was sure that she wouldn't make it especially after they ran it on the machine and it came back with a 400. Anyway, she needed a 750 to start the 2nd part of Delayed Intensification (I put the roadmap here that should be big enough to read) so she will start today.

Today on the menu is: 1 Spinal tap with Mexthotrexate chemo, 1 dose of Cyclophosphomide, 1 dose of Ara-C, and 1 pill of 6-TG... to counter the side effects of these chemo drugs she will also get Kytril for nausea, Zantac for her stomach, and Nystatin & Perodex 3 times a day as a mouth rinse. They sure know how to load these kids up huh!? Well from here on out the mountain of meds should be substantially smaller.

Please be praying for no side effects on these drugs as some of them have pretty scary yet uncommon side effects such as making the patient sterile. Here is a good link for side effects of the common Leukemia drugs if you want more info.

As for the hair situation, yes it still is gone, just some rouge hairs left looking for company. Actually she has lots of peach fuzz. If you want to see what she looks like click here. It's amazing how quickly it all came out and yes we're still getting used to her new look. Once her cheeks go down a bit and she can smile with out her cheeks closing her eyes that will be better too. Not much to say about her eye from the doctor. He'll see her in 6 weeks and then we'll decide on surgery then, most likely they'll do a surgery.

We'll lots to do on day 29! Hope all is well with you.

Sunday, July 24, 2005

Hair today, gone tomorrow

Hair today, gone tomorrow
Originally uploaded by fireater.
Well, actually that would have been a better title a couple days ago being that Tiffany finally cut off what was left of her hair yesterday morning.

I've know it was coming and during the last big round her hair definitely thinned out a bunch but I still wasn't looking forward to it or was I prepared for it all to just come out so fast. Basically it took about 24 hours for her to go from looking pretty normal in the hair department to real sparse. It just came out by the handful, the weirdest thing really, kind of made me nauseous, I don't know why, it just did. I didn't want Tiffany to cut it at first but by Saturday morning I decided that she would probably look better without the remaining hair since it was so spotty.

The first night that it came out she was just bald on the top with the mullet look in the back, she decided to dress up. She got this little skirt on, and some beads, put on a bikini top over her shirt and some clip-on ear rings. I was working downstairs when all of this was going on and when I came upstairs and saw her I couldn't help but laugh. She was all decked out as pretty as could be with her wispy hair just smiling with how beautiful she has made her self. I didn't tell her but all I could think in my head was that she looks like a bag lady... with Gollum's hair.

Actually it is great to see her all lit up and trying to be all beautiful, dressing up, playing, laughing and smiling more it really does offset the fact that her appearance has changed so dramatically. Those are the things that make me see my little Abby more. Past the chubby cheeks, the wandering eye, and her little bald head I really do see daughter more now and that is a great thing. It is amazing how Decadron can change not only Abby's appearance, but also her mood, emotions, and metal functions so much. Crazy stuff. Her face and belly will get more normal looking in the next couple months but she will still have quite the puffy, "moon face" as they call it through the term of her treatment since she'll be on Decadron for 5 days out of each month.

As for us, we're tired. Abby still isn't sleeping very well at night. Actually the last couple nights I found her sleeping on the floor our room or the guest room in the middle of the night. I don't quite know why but I think she is just sore and achy and is having a kind of Decadron withdraw since she wasn't weaned off of it like is often done with these drugs.

Well, speaking of tired, I'm gonna go take a nap. I'll post a puffy-faced-bald-headed picture for you all soon... you have been warned. :)