Wednesday, December 9, 2009 9:05 AM, CST
Good morning all,
We are not inpatient and won't be going inpatient for awhile. Imagine my surprise yesterday when I found out the decision was made and someone forgot to inform us that the drug Topotecan would be added to Sicily's regimen. I pride myself on knowing and being involved in what is going on, but somehow this slipped past us. I have yet to speak to our oncologist here to find out who, when and why this decision was made, but at the same time, I am okay with it. Adding Topotecan now means Sicily is on the ICE-T protocol.
I know it sounds funny...I have visual pictures of a rapper popping up in my head every time I think about or say the letters together! This drug will be given daily (five days during the week) for two weeks in the clinic, starting next Monday. I will take Sicily in everyday and she will continue to have a CBC and be examined and watched closely. She will even go in on Christmas Eve and Christmas Day. On Christmas Day we will just have to take her up to the third floor for her infusion, which I am told takes about a half an hour, but then she can come back home.
The week after Christmas will be the time to evaluate by undergoing tests, which will be determined as the time gets closer. I'm still trying to just live one day at a time, so having a change like this...finding out we aren't going to spend the next few nights in the hospital, hasn't disrupted me too much. I hadn't started packing yet as I am learning now and accepting that things can change, and change drastically, at a moments notice.
I am and will continue to be a little on the anxious side until I can talk to the doctor. I have a hard time dealing with the feeling I am not completely in the loop. I understand how busy and stretched the doctors are and that keeping one family straight from another can be a challenge, so that is why I will work harder at double checking and asking more questions and making sure we are all on the same page! Some days it feels like a full time job! Actually, most days it does.
I still have doubts at times whether or not I am qualified to have this position, but I merely look into the sweet faces of my children and my fears are calmed a little knowing that God trusts me to take care of them! He hired me and I will do everything in my power not to disappoint or let Him down! I still carry the thought and belief, though, as the old saying goes, “It takes a village to raise a child!” So, Patrick and I can't go it alone and we know we don't need to even try. We know we have support! It's just some days I wish I had a big red “Easy” button (you know, the one Staples advertises they provide) to push to lighten the load a bit. Again, I mentally remind myself that nothing worthwhile in life comes easy, but I wouldn't turn down a day off here and there! ; ) Still, we purge ahead and make the most of the life we were given!
I will petition for a specific prayer request for the next couple of weeks. I pray that NO SNOW or ICE finds it's way to our neck of the woods. Living in east central Oklahoma, you think we'd be safe, but we had a good little snow storm about this time last year so it could happen! I just want to be able to travel back and forth to the clinic without constantly worrying about road conditions. I know the idea of a “white Christmas” from our children conjures up thoughts of beautiful picturesque views out our living room windows and winter wonderland songs coming to life, but it is one less thing I would have to worry about in a time full of justifiable worries! So, NO SNOW!!! ; )
I am going to try and accomplish a few things on my mental list of things to do today that have been slipping past me lately, like the ever elusive piles of laundry and the continuous clutter that keeps managing to build in areas through out the house. Someday, I keep telling myself...”Someday!” I will say that I am feeling better than I was last week, but I can't seem to shake this nagging cough. Still drinking lots of hot tea, popping cough drops into my mouth like popcorn and carrying around a crumpled up kleenex. It's manageable!
Everyone have a good middle of the week. I will take Sicily to the clinic Friday morning for another numbers check. Her white count has rebounded, finally, so the GCSF shots have been halted, but her hemoglobin and red blood cells haven't behaved as well, so we'll see what happens.
Love to you all!