First Weekend of Freedom

I would like to say that we woke up Saturday with a huge burden lifted off our backs; that Lucy had miraculously started eating, walking and wanted to play outside with her friends.  But that, unfortunately, was not the case.  Lucy woke up tired, lethargic and rather puny.  She slept most of the day and only got out of the brown leather chair to go to the bathroom.  It was a hard day for me emotionally as well.  I am so excited to be done with radiation, but there is a bittersweet aspect to it all.  When you are there every day you feel as if you are "doing something."  Even though it was torture leaving Lucy back in the sedation room every day, I knew we were actively working towards fixing the problem.  Now I don't have that satisfaction every day.  As I've said before I like to confront a problem head on, checking off to-do lists and creating action plans to accomplish a goal.  Cancer doesn't work that way.  We are in the waiting game of our life!

We will spend the next 5 weeks allowing Lucy's body to heal.  The doctors warned us that she would still not be 100% before we knock her back down with high-dose Chemo starting June 19th.  My desire to pack on 10 pounds by then was probably a pipe dream as well.  Our new realistic goals are as follows: 1. eat  2. walk.  That's it.  It's that simple.  We've got to get that baby eating something..anything.. and we are going to have to push her to walk more.  She needs to be almost completely independent by the time we go back for her 2nd phase of treatment.  This means that everyone involved is going to have to be willing to make her mad sometimes.  She is so used to be held and carried everywhere that she does not want to even try.  Over the past week, when she was really sick, she has regressed in her walking considerably. 

We did have a nice celebration dinner last night.  It was as much for the adults as it was for Lucy.  We felt as if we deserved to blow off some steam after all we've been through the past 73 days.  Erik did a shrimp/crab leg boil and we invited our neighbors, the Williams and Erik's parents.  We would have loved to have invited so many other friends who have been with us and helped us during this time.  But honestly, Lucy can't handle it.  And, quiet frankly, neither can I.  Between Jack keeping my hands full and Lucy needing constant attention it is hard to sit back and enjoy anything right now. 

Lucy slept most of the night, not even bothered that her sister and friends were outside playing.  She could have cared less and that was hard to accept.  She got rather sick while we were eating and I was one vomit episode away from loading her up in the car and heading to the hospital.  But I remembered something that Dr. K had told me before our last RT.  He told me that there would be days when Lucy would wake up and feel horrible.  He said she would be sick and sleep all day.  But he said give her 12-24 hours and she would
bounce back and be great.  And sure enough.....he was right.  Around 8:30 last night she perked up and decided that a water balloon fight was in order. 

So that is what we did, of course.  Mr. Brad manned the waterhose and Grandpa kept the kids busy while the rest of us tied balloons.

It was cool out, dark and late.  But that didn't stop our fun.  No way!  My baby had been asking to throw water balloons for 3 days and I was bound and determined to make it happen. 

And after it was over we had birthday cake and sang to Hyatt.  Happy 6th Birthday Hy-Man!

So what started as a horrible morning and even worse afternoon, ended on a great note.  I was so proud for Lucy and her water balloons.  We will continue to pray that God will restore Lucy's body and heal her with his mighty hand.  I have to believe that her doctors know best and a 5 week break is crucial to her body healing so that it can handle the next course of treatment.  I also have to believe that this work that God has started, He will be FAITHFUL to complete it.  That is where my assurance lies. 

I love this song from Mandisa.  It has been such an uplifting message for me lately.  I know that there are many people going through trials and struggles right now.  Many that I know personally.  We all have our crosses to bear.  My prayer for you is that you have a relationship with God would can help you through.  I will never be able to explain how my faith has been increased ten-fold during this whole trial.  My hope has been restored even today as I type this post.  My cup is refilled and my soul is happy. 

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  1. Kate, I imagine I'd feel the same way. It always feels like you have some control when your able to be proactive with a challenge. I will be praying every day that Lucy has more good days than bad the next 5 weeks and that she is able to make some happy memories at home.

  2. Praying...very seriously...

  3. Congrats on being done with radiation!!!!!!!! I'm a regular reader from Sweden...I'm also a soon-to-be oncology nurse. I hear very often that people think it's tough between treatment rounds, and after finished treatment. To be "doing something" as you say, feels important, and it also means to be in contact every day with medical staff for support.. I'm so glad to hear that Lucy eats again, and has her vomiting stopped as well?? I read your blog every day and you're always in my prayers.
    Sending hugs to you all!!

  4. I absolutely LOVE that song! I hear it every morning on K-LOVE on my way to work, usually right after my prayer for Lucy! I turn it up and have my own jam session! Starts my day off right!

    So glad Lucy felt like throwing water balloons; looks like she had a great time! Praying for Lucy's appetite to return and for her ability to walk. Keep fighting little Lucy! You have touched the lives of so many people/ strangers, and we are all thinking and praying for you every day!

    GO LUCY GO!!!

  5. Easy does it - Lucy will feel better. She's just all worn out. So glad she got to do her water baloon fight! Take care - prayers headed your way that she continues to have more good days than bad.

  6. What a challenge for us all to enjoy the things of life! I am sure it was a sweet wonderful time with the water balloons. It reminds me that our "schedule" needs to be interrupted sometimes to make the memories that matter. Praying for Lucy and the whole family!!

  7. I just realized that I misread the beginning of your post! Sorry about that! I'm hoping and praying that Lucy will start eating and feel better soon.

  8. So glad her treatments are over for now, continuing to life ya'll up in prayer. Hope you had a Happy Mother's Day!

  9. Wow & tears, praying for your sweet little Lucy, praying for all of you & healing from our Big God we serve.

  10. Such a great song--thanks for sharing! And we are still praying for you all!!

  11. praying daily for you all.
    here is another mandisa song that i love to listen to. wanted to share it