Saturday, March 26, 2011

Feeling GREAT!


This little sweetheart is looking good and feeling good.  As of today I can declare that Lucy is a different child.  She feels better today than she has in over a month.  It thrills my soul and gives me so much hope.  I just wish this was the end of it.  But its not, so we will take joy in the good days and savor each moment.

I feel as if I have so much to say.  So many updates.  First of all, at the time of writing  Lucy is 40 hours fever free.  She had to stay free for 48 hours to be able to go home.  Let me just go on the record to say that if we don't get discharged tomorrow morning there will be heck to pay!!  I am ready to get my baby home and have our family back together again.  Being apart from Ella and Jack is starting to take its toll on all of us.  Ella left here tonight sobbing because she just wants to be with Erik and me.  I, in turn, spent a good ten minutes crying as well.  It's amazing how my emotions still swing from high to low in a split second.  One minute we are praising God for the wonderful day Lucy has had and then in a moments change I am questioning how a God of love and mercy could allow an innocent child to suffer.  Not only Lucy, but Ella and Jack too.  Theirs is more of an emotional turmoil while sweet Lucy will literally be turned inside out with suffering at times.

I have to force myself  not to dwell on those questions.  Its a dangerous path to head down to be honest.  A path both Erik and I have been on too many times.  You can begin to think some pretty dark thoughts.  One of my more "not-so-inspiring" days was this past Thursday.  It was Lucy's first day of radiation and Erik and I felt as if we had just fed our baby to the lions.  Half of Japan is running away from radiation and here we are making a purposeful decision to expose Lucy to it for 33 days.  But what do you do?  She can't get well without it so we don't really have an option.  Ugh!  It sucks.  No parent should ever have to make this decision.  But right now we are praying fervently that God will hedge Lucy with a mighty shield of prection that will limit the harmful side effects of the radiation.  We are pleading with God to keep her healthy and safe

Lucy has completed 2 radiation therapies.  31 more to go!  The countdown to our 4 week break has begun.  Speaking of our break, I have already started to pray that Lucy will be healthy enough for us to do something fun as a family.  Maybe a trip to the Smoky Mountains?  Lucy has also been qualified for a Make a Wish trip, so that may happen then depending on what she wants to do.  It's kind of funny talking to her about it, though.  A 5-year old sure has no concept of the world.  I asked her where, in all the world, she wanted to go.  Know what she said?  "The lake house."  God love her!  The lake and the swimming pool are totally off limits this summer.  I'm not sure how we are going to do that with Ella, but due to Lucy having the central line she can't risk the infection.  We will chalk this summer up as a loss, but can't wait until the next one!  We should have lots of celebrate. 

Physical Therapy is still going well.  Lucy fights it, but has learned that its not an option.  It amazing how much stronger she has gotten.  They have provided us with a small walker for her to use for stabilization as we practice walking and on Monday she will be fitted for a temporary brace.  The fear is that as she is regaining the strength in her legs she might hyper extended and pull a muscle or damage a tendon/ligament.  She still has some hyperflexion in her right knee that will improve with time.  I'm still convinced that getting her home will be the best PT around.  Keeping up with Ella, Jack and her friends is going to provide all the stimulation she needs to get well.

 Coloring--sitting by herself. 

Working on the stability ball


Growing magic capsules with Grandma

On a fun note --I knew this post was going to be all over the place-- Lucy has left a permenant mark on St. Jude already.  Literally.  St. Jude just created a new garden and allowed families and staff members to paint bricks.  Rebecca, our sweet friend whom Erik worked with at St. Jude for years, painted this for Lucy.  I was moved to tears when I saw it outside.




As you can probably tell from this post, our emotions are still on a roller coaster.  I can handle the emotions, as long as Lucy's health can keep a steady pace for a little while.  I know we are in for ups and downs, but I am praying she remains well during radiation so that we can spend as much time at home as possible before we move on to the Chemo phase of treatment.  We have been told to prepare to spend more time in the hospital during the 4 months than at home.  It is going to be so hard and I already get anxious thinking about it, but once again I have to choose to live in the moment.  And right now the moment is good WONDERFUL.

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"The LORD is my rock, my fortress and my deliverer; my God is my rock, in whom I take refuge. He is my shield and the horn of my salvation, my stronghold. I call to the LORD, who is worthy of praise, and I am saved from my enemies. The cords of death entangled me; the torrents of destruction overwhelmed me. The cords of the grave coiled around me; the snares of death confronted me. In my distress I called to the LORD; I cried to my God for help. From his temple he heard my voice; my cry came before him, into his ears."

Psalm 18:2-6




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29 comments:

  1. I will pray that you guys are home together tomorrow night, and that being with her sibs gets her motivated for PT. What an amazingly hard time you are going thru. I cannot imagine.....but I will pray without ceasing. Love, the Hensley's

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  2. Praise God! So happy that y'all have had such an awesome day. I continue to lift up your sweet family in prayer. I especially pray that y'all will all be at home together very soon!!!

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  3. Kate - So, SO wonderful to hear about Lucy's spectacular day! Your heart really must be ready to explode watching her work so hard with PT & do things on her own that she's been struggling with over the last month. God is SO good, and knows our every need! I can't imagine how extremely difficult it must be at times to keep those dark, "what ifs" at bay, but I will pray specifically for strength and trust in the Lord. We will also pray for Ella & Jack, for understanding and love. May Lucy continue to grow stronger every day! GO LUCY GO!

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  4. Praising our great God with you tonight!!!!!

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  5. I don't know you, but have been following your story for several weeks (from Kelly's Korner). Your strength is amazing-- it is only outweighed by Lucy's! I have prayed for you and your sweet angel every day. Today my 16 month old and I participated in a St. Jude's "trike-a-thon" in Lucy's honor. It was a privilege to raise money for such a worthy organization. I pray her time there will be as short as possible, but that her bright light will touch many lives while she is there.

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  6. Great news! When things slow down a little, I'm gonna share with you how your "Thankful" post was MY message from God. God has never failed to answer me. Sometimes I may not listen and misunderstand it for him not coming through but I've learned to open my spiritual ears and low and behold he has never failed to let himself be known. I was so taken aback by your post, that I had to call my mother late at night to tell her about it! I had just been talking to her on the way home from church earlier about something I was praying about that night. When I got home I thought I'd check on Lucy before bed and there it was. God's word in the form of your words! There's a little more to it than that... Just know that we often do things with very good reason, even though we have no clue.
    Thank you for sharing Lucy's victory with us and I know, it will be a victory. She has the best of the best physcians on her side.
    Praise God for it all!
    Krystena

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  7. I'm so happy she is having such a great day! I really hope it continues=)

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  8. Mother of 3 PRAYING daily for Lucy.

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  9. Mother of 3 praying daily for Lucy and for your family. Praising with you today!!!

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  10. I love that smile!...that strength she has! I am so proud of her, you and Erik, and Ella too. I know sometimes it feels as if God lifts His hand, then slams it down again, doesn't it? I can't imagine, Kate. Let today be a reminder of God's love. Through this roller coaster of emotions, and I can imagine how your brain gets to twisting and turning, stay strong and know that we are all on our knees out here! You know that if you need me, I am ALWAYS here. I am only a text or phone call, or even a few miles away, but can be there quicker than you can say Lucy! ;) Love you all...GO LUCY!!!!!!!!!

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  11. She looks soooo good in this picture!! I'm so happy about that! Love you! "Sari"

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  12. Praise God yu had a good day for you sure did need a break. And what a strong girl Lucy is! Way to go Lucy! Keep at it girl.

    Praying,
    <><

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  13. So good to read the good stuff happening. Still praying for you all!

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  14. You guys tug at so many hearts... Wonderful to see Lucy's smile. Hoping tomorrow finds all of you at home, and that next four months are gentle yet effective for Lucy. What empathy is born from such large, unified desire to see your daughter healed, a miracle performed! Wishing your kids to spend lots of time together soon; for you to be able to hold all three of them close.

    Praying for protection and strength for any days ahead; for sovereign knowledge that nothing lays outside His path for any of us. Let Lucy walk down her road in confidence.

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  15. SO excited about yalls FABULOUS day!! Lucy looks soo great! Just like she feels so much better! Amazing how Gods working in and thru your family! I think of all of you very often and read the blogs daily! I LOVE seeing your faith and courage thru all of this!! Yall are TRULY an encouragement to all of us! THANK YOU for sharing Lucy and your family with all of us!

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  16. YES, DEAR LORD, YES!
    THANK YOU FOR A GOOD DAY!
    THANK YOU FOR THAT FABULOUS SMILE!
    THANK YOU FOR GIVING KATE AND ERIK AND THE REST OF THE FAMILY STRENGTH AND KNOWLEDGE OF YOUR PRESENCE!
    THANK YOU FOR DRAWING NEARER TO ELLA AND JACK IN THEIR PARENTS' ABSENCE!
    THANK YOU FOR THE IMPACT ALL OF THIS IS MAKING ON SO MANY PEOPLE!
    GOD, WE ASK FOR LUCY TO BE HEALED!

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  17. Praying for peace, strenght and freedom from cancer. Mother of three in Texas.

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  18. I am continuing to pray for Lucy and the rest of your wonderful family! May you keep trusting and feeling His love around you! He continues to walk with you--may you keep feeling His presence. I read this quote and thought of you and all that you are experiencing. Hope that Lucy has another good day today--she is such a precious little girl! My thoughts and prayers will continue to be with you!


    "He uses those hard dark places to refine us, to grow us, to make us more like Jesus. Through devastating circumstances, we see deliverance by our Deliverer; healing by our Healer; comfort from our Comforter. The things He teaches us in the dark we would never know about Him otherwise. So we honor Him when we stick around and remain faithful, when we hold on through this pain, when we depend on Him. Whatever your dark and devastating circumstance is, please don't walk away from Him. Please don't turn your back on Him. Please don't abandon Him. Besides, where would you go? He has the words of life."
    -Donna Pennell

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  19. Hi Kate...What an amazing day for Lucy and for all of you yesterday! Those days have got to brighten the days that aren't so good. I am praying for lots and lots of the good days!! I look forward each day to seeing her smile and reading about her progress...from a mommy's point of view. So many times we distance ourselves because it is just too painful. It's easier as a parent to not allow your mind to wrap around a situation like yours. But thru you and sweet Lucy, I've learned that is not what we are supposed to do. I am praying for you all daily so are my boys - my Dalton who is 8, asks about Lucy several times in the course of a day - he always wants me to check for updates on Lucy - It is precious to see him become aware, and have compassion, for someone like Lucy who is going thru this. He prays for her daily. I hope your day today is a blessed one and full of love, happiness and peace thru the Holy Spirit. Continually praying for strength and wisdom and good reports for Lucy. Lots of hugs! Laura

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  20. It was so nice to see a picture of Lucy smiling! She is a strong little girl! Sending UP prayers everyday for Lucy and all of the family.

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  21. That SMILE!!! Looks like things are going good:) I am so thankful and we are continuing to pray things go well!

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  22. I have been following your journey, I am a mom to four children and I read your blog every night before tucking my children in. Your post today makes my heart so happy, Lucy looks so thrilled to be up and feeling better!! I hope you are able to feel the support of all of us thinking of you and praying for your beautiful family...
    Go Lucy go!!!
    Warmest wishes
    Kelly

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  23. "There will be a day with no more tears, no more pain, no more fears... and we will see Jesus face to face!" This is so true and I live for this promise. HE will wipe away all of our tears.. Yours and Lucy's. Your whole family's.

    I'm praying for your family and appreciate reading her updates. Lucy is a strong little girl!! Kids are amazing, they really WANT to get better! This drive creates an amazing resilience that is hard to understand, but brings great hope.

    I hope Lucy has a wonderful week, at Home, and is able to rest in her own bed. You too!
    Hang in there.

    fellow mom of a sick child.
    -Patty

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  24. Praising the Lord for her amazing day and her fever coming to an end. Love to see her smiling face. Praying for continued strength, peace, and healing for ALL of you!

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  25. Kate, your entire family is in my prayers... In addition to Lucy, Ella has been heavy on my mind. I can only imagine the impact of this on the entire family but Ella is just a little girl needing her family. I know that God will sustain all of you through this. I check in several times a day to check your posts. Please keep them coming.
    God's blessings to all of you!

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  26. Have you heard of Super Sibs (http://www.supersibs.org/)? They do some cool things for the sibling of kids with cancer. I bet it would be awesome for Ella.

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  27. Looks like a little ray of sunshine made it your way! I'm so happy to hear she's having a few good days. Let's keep this up. Go Lucy Go!

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  28. I love her smile, it warms my heart. Continued hugs and prayers from our family to your's.
    ~Heather in OH

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  29. Still praying in Gallatin. Glad for the good news and prayerful for all of you, grandparents included! May the radiation only do its job on the bad stuff and may Lucy eat lots of cow cupcakes! God bless you everyone. Cynthia

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