Saturday, May 26, 2012

Day + 10 Stuck Inside with too much time to think

This afternoon, we went into the hospital for our only appointment which was just to get Kayla's GCSF. When we checked in, we were informed that she was supposed to be in an hour earlier for a blood draw. Yet again, we were not called prior to our original start time to inform us that there was a start time change and appointment added to our schedule. So, off we went to Assessment Triage to give blood. While Kayla was getting her G, the on-call doctor came in and told us that Kayla was also going to need to get blood and platelets again! It's only been 4 days since the last time. Ugh. It takes about 45 minutes or more to get the blood ordered and then another 3 hours once it starts. So, there went our Saturday. It's ok. Her ANC is only 200 still so it's probably best that we keep her inside anyway. 

Maybe it's not a horrible thing to be stuck inside where there is air conditioning when it's 98 degrees out, but this wasn't in our plans for a Saturday off. When am I going to learn that I can't plan anything?  Ever again.  I have been having a little bit of anxiety again about how hard it will be to go back home and try and live normally again. The idea of booking appointments and working is hard to swallow. Going back, I will have to work more then ever.  I worry I won't be able to bite my tongue when asked questions that I have literally poured my heart out about in this blog.  I lose it in grocery store isles when I hear mom's complaining about their kids having a cold. I have caught myself scowling at mom's who's babies are wrapped in hemp baby carriers in whole foods wanting to yell out, "it won't protect her." I feel absolute disgust when I see parents yelling at their kids and physically threatening them.  Do they not realize how lucky they are to have what they have? 

I get scanxiety* at even just the thought of the upcoming visits back here. I have always been a planner.  Now, I find the thought of planning anything in the future gets my heart racing.  The kids would LOVE to have a dog again. I had originally promised that after Anthony started Kindergarten (and I had more time to train it) this could be a possibility. Not now. Who knows what our future holds. Part of my brain tells me that we still have to go on living our lives and not think too far into the future. Part of me says it would be completely irresponsible to even consider anything that can't be cancelled or returned.  

Denny and I had a long chat late into last night about how "lucky" (and I use that term loosely) we were that the situation worked out the way it did. With Anthony being the age he is, it made us all able to be here as a family this time. If the tables had been turned and it was Anthony, would we have been able to take Kayla out of second grade to be here as a family? Probably not! So, it's kind of strange mixture of emotions... grateful and sad.  So scared that the only thing that keeps us so positive is being here together. I am afraid to think of what it would be like if we were split up.  Just when I get all wrapped up in my own problems, I walk downstairs and see a beautiful vivacious girl, just about Kayla's age, who will not be going home. She will be kept comfortable as the cancer eventually invades. My heart will ache as we watch her parents leave St.Jude for the last time. They don't get the luxury of experiencing *scanxiety.  It is not fair. Not fair at all! So, I try and focus on the fact that we will be bringing our daughter home. No matter how scary the rest seems to us right now, we need to stay focused on that. The rest will come as it will. It's already planned out. We just don't get the sneak preview... nor do we want it!

*Scanxiety-  
(Adult / Slang)
(Noun) (informal, among patients) the tension and fear that is felt leading up to the time one learns the results of a scan
Usage: The scanxiety began a few weeks before her scan and continued to increase until she received her results!


Family = LOVE

5 comments:

  1. My prayers are always with you all.

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    1. Connie MacQuarrieMay 26, 2012 at 10:09 PM

      What a priceless picture of Kayla, Denny and Anthony. All of you contribute so much to each other and seem to know just what that role is.(Even if it isn't clear at times) The picture tells a story beyond words and makes us all proud that we are connected to you in some way. Our hearts are full tonight of love and compassion for you. I marvel at what a wonderful family you are. Good luck with the last session. Thinking of you always, Connie

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  2. Big hugs, Annie! From personal experience, don't let the what-ifs freeze your life. You guys have accomplished so much, you re a STRONG family, full of love and compassion. A puppy may just provide some emotional healing and support for everyone. New life at home will become life at home in no time. I can understand the separation anxiety of leaving the safety of St. Jude's; but I have every confidence that you will all be fine at home again. And you're right, you can't control life or see the preview. So live like there isn't one! It's something I wish I'd have done sooner, myself. I have much love and respect for you and how you've handled this remarkable journey you've been on. I'm confident that you and your beautiful family will come out ok. And Kayla, you kick that last session in the booty. You can do it!!!!

    Allyson

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  3. What a beautiful photo! Cuddled and connected, looking away from the camera, at peace....so lovely. As you said, "the rest will come as it is" ... unplanned. And that's hard on those of us who like to plan! Zen helps, we know what's here in the moment...like this photo, captured like a poem of love. Hugs and love to all, AuntieAnn

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  4. what a cute and loving family =). Love the picture!

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