Wednesday, January 2, 2013

Life By Paper

At the time of this writing, the countdown ticker at the top of the page reads 10 days until Emma's No Mo Chemo. Ten measly days (and as of today, the day I'm posting, only 5 days!).

Mostly I am excited. Overjoyed. Grateful.

However, there is also apprehension. My life has been lived according to a piece of paper for two years and seven months now. That's a long time to be controlled, and the thought of no longer having to live according to St. Jude Children's Research Hospital's guidelines is a little bit overwhelming.

You see, they have dictated what I do every single morning for more than 2 1/2 years--give Emma her antibiotic. They have dictated what I do every single night before I go to bed for over 2 1/2 years--give Emma her chemo. They have dictated what I do every single Tuesday--go to the clinic for much of the work day. They have told me what I must do every time Emma runs a temperature of over 100.4 degrees--make the hour drive to the children's ER. Not only that, but they've given me regular reminder calls, occasional out-of-town visits to the main hospital in Memphis, and stacks and stacks of paper work, blood draws, and measurements.

What will I do when I no longer have to live my life according to a piece of paper--a roadmap, as they call it?

I don't know. I guess I'll just try to enjoy it. Suggestions?

9 comments:

  1. You'll celebrate, you'll be unsure. You'll be happy and sad. You'll wonder for a while how you will cope. Then things will fall into place and your life will be normal.

    But most of all, enjoy the fact that she is done and that you can move on.

    Finally, give her a great big hug to celebrate the fact that each day you still have her with you.

    Does that help?

    ReplyDelete
    Replies
    1. Oh Terrie, thank you so much! It does help, because you've reminded me to take it one day at a time. :)

      Delete
  2. This summer it will be our turn for no mo chemo. I had to laugh at the part about the road map as ours ran out on Christmas Eve and it was one of the first things I asked for when we went to clinic that Monday.

    We are looking forward to the end of chemo but I know I'll never rest easy for the rest of my life when Emily gets a little sick. It will be a huge adjustment to not calling the clinic when Emily shows a symptom of a virus or bug.

    ReplyDelete
    Replies
    1. I know what you mean. We may be done, but it will never be over. :(

      Delete
  3. Terrie said it best. It's a blessing to see Emma healthy every day, one day at a time!

    ReplyDelete
  4. You will thank god that you had St. Judes to rely on all this time, but I know you probably thank god for them everyday already.

    And although you will probably never be free of the 'worry' maybe after she is free of chemo treatments, you should just try to enjoy your little girl even more than you normally do. Spend extra amounts of time with her!

    I'm so happy she is doing so much better and so close to her treatments ending! That is truly something to smile about! I hope and pray that 2013 will be a fantastic year for your family!

    ReplyDelete
    Replies
    1. I hope 2013 is a great year for all of us!

      Delete
  5. Thank God! Only 40 more hours, and she'll be done! Here's to a brilliant 2013. :)

    ReplyDelete