MONDAY, DECEMBER 22, 2008 08:36 AM, CST
Good Monday morning,
We thought by moving further south, we would be in for a treat with milder winter tempatures...not the case. It is eleven degrees right now and our heater is running full force.
Sicily has had two pretty good nights of rest the past two days, which can only help her little body stay strong. I wish we didn't have to leave today for more radiation, but it has to be done. It's so cozy around the house with all the kids home and Patrick on vacation. We'll be leaving this afternoon.
I was having a bit of a hard time yesterday. I'm trying very hard, but for some reason there is this since of guilt that enters my mind when I try to enjoy the holiday. I can't explain why it is there and am trying very hard to ignore it. I told Patrick that it seems like I'd want to put as much effort as possible into it, but maybe that is part of the problem. Sometimes it's hard not to think of the stupid (excuse my bluntness) statistics when it comes to Sicily's case.
When we first started out on this journey and Patrick and I did the normal research, we were somewhat relieved to find out that Wilm's, at least unilateral, has a 90 - 95% five year survival rate, meaning that in five years, that is the percentage that an afflicted person has of being alive. Bi-lateral was a little lower, but still not bad. It seems the more I find out about Sicily's particular diagnosis, the more worried and fearful I get.
While having a conversation with her radiologists, who by the way I also love, she was explaining to me why Sicily has to have eleven days of radiation versus the seven we were initially told. Having unfavorable histology means there is a presence of anaplasia...there are two types, focal and diffuse. The latter is worse, and that is what Sicily has.
I've tried to research it a little but stopped because it just doens't matter anymore that I know every little detail...it's better I don't. Because of all that, Sicily's five year survival rate drops to around 55 -65 %...still not horrible, but not great either! I'm sorry to unload like this just a few days before Christmas, but I know this all plays into why my heart is still so heavy and I'm having a hard time finding my "happy" place. I'll be okay!
Being at my sister and brother-in-law's house is always a good place to be, since we can't be home! And we are having company for the holiday. Two of Patrick's sisters are coming as well as my parents. I needed family here so much, and I am so glad they are coming. For my sake and the sake of everyone else.
Time to pull out the gum again, not like anyone has put it away...Sicily will be treated at 5:30 today, then at 7:00am the following two mornings. She will also get Vincristine tomorrow morning. She still is doing okay with the nausea control...thank you God!
And thank you God, for allowing us to celebrate the birth of you Son, Jesus Christ. I think this Christmas, I will understand the emotional aspect even more! Thank you all, too, for sticking with us. You will never know how much you all have helped us!
PS - Sicily's new favorite movie, the one we will be watching non-stop for days on end, is The Wizard of Oz. I told her that we have a costume of Dorothy that I made for Isabella many Halloweens ago, and she's already decided to wear that next year. I said that's a good idea! She is, after all, still a native Kansian...born and slightly breed there! ; )
Everyone enjoy your day! And let go of the last minute Christmas stress...it just isn't worth it!
All our love,