Wednesday, September 1, 2010

The Plan

So, what do we do??? After the shock and horror subsided momentarily, the most pertinent question was what do we do? Over the course of the first 72 hours of this monstrosity, a plan began to emerge, a plan that once we were back in Santa Barbara and met the medical team here, was finalized.

With the amazing help from the Cedars Sinai and Santa Barbara medical communities, Todd and I are 
at peace with the treatment program that has been developed for Nina. We quickly realized that we didn't want to do any clinical trials that would cause undue pain and, equally important, not bring dignity to our honey-girl! This is not to say that we are not open to doing clinical trials or trying other treatment options. However, all of these considerations are evaluated through the lens of only bringing Nina and our family a strong quality of life!

So the treatment plan is as follows:

1. 6 weeks of radiation Monday-Friday
2. Constant prayer
3. Decadron (steroid to reduce swelling in brain), Zofran to prevent nausea, Fluconazole (to treat thrush/yeast infections caused by steroids), Prevacid (to protect stomach), and tylenol as needed for pain
4. Constant prayer
5. Potential clinical trials (e.g., immunization treatment paradigms)
6. Constant prayer

Last Tuesday, Nina had a port surgically place in her upper chest which makes sedation and all lab work bearable. In fact, Nina is already becoming habituated to the daily barrage of vital signs assessments, flushing, IV connections, etc. She is such a strong little girl. Her will is so remarkable it strengthens me on a daily basis! How is that my dying daughter is giving me strength??? That shouldn't be, but it is.

Each time she is pissed off because some new person in a medical uniform is talking to her and trying to make her laugh, I am strengthened! Each time she wakes up from being sedated and throws a huge, fat tantrum because she still wanted to sleep, I am strengthened! Each time, she demands a new food ("I want ribs!") after being poked and prodded, I am strengthened! Each time she gives me a slobbery kiss right before she is knocked out with sedation, I am strengthened!

I am so sad that Nina must undergo such measures but I am so proud of her! Each breath she takes transforms me, and I am beginning to believe that is true for hundreds of other people as well!

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