SATURDAY, JANUARY 31, 2009 02:12 PM, CST
I'm at home with the other kids as Patrick came last night to switch places with me in the hospital. It's his turn to be on watch. He had a bit of a rough evening as the needle came out of Sicily's port when he tried to pick her up and a new needle had to be inserted. She just started getting her Cytoxin chemo drug but fortunately it hadn't made it all the way down the tube and through the needle yet. It was a little traumatic for Sicily and daddy, as well, but they managed to get through it. He said she was a brave little trooper as always.
They are still at this moment waiting for her transfusion which we had expected to start this morning, yet nothing has happened. I'm a little on the miffed side as she was supposed to get it and be done before her next chemo treatment which is to be started around 5:00pm. The transfusion takes a few hours, so it looks like her chemo will be pushed back, which means she most likely will have to stay a good portion of tomorrow in the hospital. After the chemo drips for one hour, Sicily has to get Mesna, the drug used to protect the inner lining of her bladder, once every three hours for three consecutive doses, so it takes nine hours. Once again I allowed myself to run on expectations and I'm letting them upset me. I should let it go, but I just want my family at home!
Last I talked to Patrick, which wasn't too long ago, I could hear Sicily singing and carrying on in the background. At least she is not in any pain or miserable for that matter. If she can take it, so can I!
I know a lot of people question and even ask how we do this. I honestly think I am going through life right now with rose colored glasses. It's easier to act and look like things are normal sometimes, at least in my own mind. And it's pretty easy to do when you have such a little powerhouse leading the way, as Sicily does. The only problem is that when news is bad or complications arise, I feel like we have farther down to fall.
Case in point, when we received the news of unfavorable histology after Sicily's initial surgery. Things up to that point had gone so well and smoothly that we just knew they would continue to do so. I was alone with Sicily in the hospital room rocking her to sleep in a chair when her oncologists came in to talk to me. He confirmed that Sicily's tumor on her right kidney contained anaplasia...really bad cells. I sat and cried. And cried. And cried. I know this doctor has had to report not so good news to parents before, but he sat there almost speechless...not really acting or knowing what to say to me. I was a little dumbfounded but maybe that was his way of dealing with the situation. I don't know why my mind has regressed back to that day...maybe it's so I can buck up and see how really good Sicily is doing right now and that this hospital stay, like the last, is a whole other picture and experience than before!
As I held her Thursday night and watched the red devil (the knickname given to Doxorubicin for it's color and toxicity) drip into my daughter's IV, I prayed and prayed that it is doing it's job...and for that, time will only tell. So I ask that that be the specific prayer request for Sicily right now...that the chemo she is currently receiving and the past radiation treatments are doing what they need to do with minimal side affects and minimal harm to the rest of her little body!
I love that little girl more than life itself, as I do my other wonderful children. I just want so bad for her little body to be healed! Pray, pray, pray!