Thursday, August 4, 2011

clinic visit 8/04

I have much to say but not really much talent in wording things well. I also stutter should you ever know me in the flesh...its especially awesome when I get on a tirade. (of course, this is crazy rare) I imagine then, that this will be a post with a plethora of "verbal diarrhea" as I call my rantings, raving and/or rabbit trails. Lets see how well you can follow along.

Today Piper had her 2 week checkup since being discharged from the hospital due to that amazingly sneaky virus of which we have no name. She is doing wonderfully. Eating, attempting to get around and basically being the silly two year old that she is. When Piper was admitted, they stopped her chemo both the daily 6mp and the weekly Methotrexate in an attempt to get her counts back in the typical Maintenance range. Today her counts looked great...still beautifully normal. And I thought that they would restart both the chemos I mentioned above as well as her monthly Vincristine. But nope.

Chad said that the final decision will be made tomorrow but at this moment they are planning to stop her treatment. Piper is due to have 6 more weeks of chemo before ending her two years of treatment in mid-September. This honestly freaks me out. I know the steroids are doing a number on her bones, I know her immune system is shot and I know ending chemo would do wonders for her...but I was not prepared for this. I wanted Piper to receive the max amount of chemo within her two years, not end prematurely.

When Chad relayed his conversation with Nurse Lois and watched me put on my angry eyes, he only laughed and said that Lois was prepared to hear from me tomorrow. I don't want to be " that mom" but thankfully these people are accustomed to me and my questions and opinions. They still look forward to see Piper and I walk in the door so Ive not bothered anyone too much yet.

So blast it all they want to be done. No hoopla, not big to-do, just an end. The concern for an infection, virus or bacteria now apparently outweighs the concern for leukemia. I'm not sure if I should be comforted by this or up in arms. Being the persevering woman that I am, I see Leukemia as a very targeted and specific infection, virus or bacteria are possibilities and those my friends, are easy to mentally side step. I don't want to stop this fight yet and I don't ever, every want to see this beast return and I cannot help but worry the two could easily go hand in hand.

Tomorrow I will be making a call or two. I am praying for peace and I am praying that they are receptive to my concerns. I am also praying to remember just how far we have come and that God reminds me of this when I find myself clinging to the ceiling.

(I knew I should have gotten that medical degree because then I could be mom AND the doctor and thus, the boss...more chemo for all! fight on little cells, fight on!)

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