Surprise

Everyday it's something. A little surprise for me and when it comes or how it comes I never know until it gets here. Everyday there is some new twist or turn in this thing we are doing called leukemia. I keep waiting for "normal" or for things to "quiet down", but it is just not happening. So, I guess I better not settle in yet. Today, about a half an hour before I was to give Ally her antibiotic (which they trained me to do yesterday) they called and told me to stop. Just in time. Now they want to treat her with a more specific antibiotic...I am not sure if something else grew in her blood culture, but this antibiotic would go more to the heart of the infection. The home health nurse was on her way to retrain me with this particular kind of infusion. I called the clinic to see exactly why they were changing it. They told me she grew something I cannot pronounce or spell, but the bottom line is it could be an infection in her port. I calmly asked a few more questions, and they told me the blood culture they took today would tell them more. We would know if the port is infected, and if the antibiotics would take care of it in 2-5 days. AAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAHHHHHHHH. That was me screaming after I politely hung up the phone with the nice hemoc nurse. Seriously. Seriously! Why can't I have a normal course of treatment like everyone else that has ALL?

So the nurse came out, and re-instructed me on how to deliver these infusions to Ally through her port. It amounts to lots of sterilization and four different pushes of medications in four different syringes. Not hard, but a little time consuming. Oh, and by the way, I have to do it three times a day now. For ten more days. At 3pm, 11 pm, and 7 am. I am hoping I can do it without waking her up for that 11pm shift. And 11pm is blog time too--nice conflict there. My refrigerator is full of medications and I have another arsenal of medical supplies in boxes too. Here is one set of everything I have to do, ready to go for tonight.
On the non-complaining front, Ally is in really good spirits. She created all kinds of masterpieces today with perler beads. Evan loved them too. They are little designs that you create and then I iron them together. Madden and Regan even came over for few hours this morning to create some designs. I do feel happy today because Ally is happy, for the most part. We had another HUGE thing happen in our house today. We all sat at the dinner table at the exact same time. This may sound like a small thing, but for us HUGE. It hasn't happened successfully in weeks, maybe since this whole thing started. And the other HUGE thing is....I cooked the dinner. Yes, the food wagon was absent today and Mom filled in. Ally loves these things called chicken rolls. In an effort to actually get her to eat, I tried it. And she ate one. She is eating very very little these days. Some days I think she only gets a few hundred calories. Anyway, since the dinner thing was such a big deal for us my lovely husband had to get the tripod out and take a self-timer shot for everybody to view. (all his idea) And we have no idea how to use the self timer, so we had to get the camera manual out, too. We really wanted you to enjoy this picture, and our dinner was cold by the time we ate it as a result. Do you see the little artichoke in the picture?? Little known fact about me: besides popcorn, I think artichokes are my favorite food on this earth. And I actually bought one and made it myself.
Please keep the prayers going that this infection is not in her port. I am hoping it just clears on its own with the antibiotics that I will faithfully administer to her. I do not want her to have another sugery. That would just not be a good thing for her right now.

Four months ago today my Mom was freed of this horrible disease. She is resting in peace now and I can't help but think about her today and everyday. Although she is not here, she is still giving me the strength to fight this battle for my daughter. She taught me how to fight...I'll teach Ally...and together we will win.