3.10.2011

Two Weeks

I was about to post that we have been here for exactly 2 weeks, but then it dawned on me we have been here a week and 1 day.  I've said it before but there is not much differentiation in our days and nights.  There is no routine and no normal when you are in the hospital.  Especially when you have a child who is riding a medical roller coaster that never stops.  You can literally look up and it's 9:00pm, and you've been up since 5:00am.  No breaks...no rest.

But there is no where else I would rather be.  Let me rephrase that.  There are a MILLION other places I'd rather be than the hospital.  But life dictates that right by my baby's side is where I need to be and wild horses couldn't drag me away. 



The two pictures above probably don't show the anguish that I was feeling when the pictures were taken.  This was after I had received our news yesterday and we were preparing for our 3rd surgery.  But that was a moment in time and now we have moved on.  We have to stay focused on the prize.  The victory is ours (God's) (Lucy's) to win!

Lucy continues to work hard in physical therapy.  This picture was actually taken 2 days ago, as she was on bed rest today and just felt horrible yesterday.  I know it is very frustrating for her and she does not understand why her body is not working, but her will and determination are to be admired!  If you notice in the picture below she is using her left hand to hang the monkeys on the net.  She is favoring her left side more because the right had more damage from the tumor.  I have faith that she will work through this in time.


I felt as if we had another breakthrough today on the personnel side of things.  I've mentioned Tracy's name before as the lady sent from God to help us during this trial in our lives.  She is so good with kids and wants so desperately for Lucy to trust her.  Lucy does not trust anyone right now except her family.  All she knows is that strangers keep coming in her room and when the leave she usually hurts.  You can see where this would be tough on a 5 year old.  But today I think there was some headway made.  Lucy actually had a conversation with Tracy and told her she loved her.  Lucy even showed Tracy her light-up frog she got on one of our shopping excursions.  Although you can't see Lucy's face, I can promise you I saw a smile.


And then today, although in crazy amount of pain, Lucy asked to go back downstairs to get ice cream.  I think it was just a ploy to go back to the gift store, but I did not care.  Whatever it takes! She ended up with a Nutty Buddy ice cream cone and a HUGE teddy bear that is as soft as silk!  I think the bear is as big as she is.


As I was looking back at some of the pictures since we've been here, I noticed just how much weight they have put on Lucy.  She had lost almost 10 pound after 1 1/2 weeks here and they put her on TPN to get her beefed back up.  We need her at prime fighting weight when we get to St. Jude.  Well, it has worked!  Between TPN, steroids and the appetite stimulant she has filled out rather nicely.  I know it won't last, but I'm glad that we will not be starting out in a deficit. 

I continue to be humbled and honored by the emails, comments, messages and Facebook posts sending me encouragement and well wishes for Lucy.  Some of them I know God has used to minister to me when I needed it most.  You can not begin to imagine some of the stories I have heard.  I know it would be hard for some people to believe, but many people have written in to tell me that they believe beyond a shadow of a doubt God has revealed to them to pray for Lucy.  Some even believe they've received signs that she is going to be ok.  Even complete strangers have moved me to tears as I read their emails telling me they just know Lucy is going to be ok. 

Mrs. Charlie, Lucy's teacher, told me today that while she was praying she asked God why he would use a little child in such a way.  She told me that a voice, just as clear as a person standing her, answered that we don't pay attention as much if he used an adult.  While I get what she is saying I still don't understand why it had to be Lucy.  I probably never will.  I just told Mrs. Charlie that I was glad God was sending her a message.  I've been checking my "in box" and haven't received one yet.  Maybe I'm just not listening, you think?

Psalm 46:10 says "Be still and know that I am God."  I'm going to try my best as we are preparing for the next phase in Lucy's treatment to abide by this verse.  It's totally not my style, but hey!  None of this really is.  It's time to become a new person.  It's time to start listening to God.  I want to be obedient, but I find it so hard.  Things aren't really going our way right now and it makes it a little difficult to get out of our situation long enough to do more than plead for Lucy's life.  To be real honest, there's not a lot of time spent praying for extra things these days.  Lucy is sort of top on the list.  I'm working on it, though.  Trying to make a change occur.

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33 comments:

  1. Lucy,
    It's Erin again. Sweet heart, I cannot believe what is happening! Little angel, I promise when this cancer is out of your body....I am on my way to meet you! I have a little girl your age and we pray for you every night....and all through the day. You have become family to us. I lay over my children at night and pray that I capture every precious moment with them. I don't want to take anything for granted. Lucy, I want to take your pain away!!! God, please wrap your arms around this child tonight and bring her comfort! Please let her parents see Your plan. Lord, you knew this would happen before Lucy was even born. Why Lord? Why? When we do find out please God, bring precious Lucy back under her mother and father's wings where she belongs. Good Night Lucy! We love you!!!

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  2. Kate,
    You are doing great. Your strength and faith in God and your love for your family ooze out when you write. You are incredibly inspiring and amazing in ways that you can not possibly comprehend right now. Your words of faith and hope have brought more people to their knees praying for Lucy than you could ever imagine. You are teaching us to believe, to be faithful and to pray. Hugs and prayers for all of you.

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  3. Kate and Lucy--
    I have never met either of you, but I came across your blog and I was moved to tears. I am a senior at Penn State University and I am so passionate about something we have called THON. It's short for Dance Mara-THON, but it's the largest student run philanthropy in the world and it raises money each year for pediatric cancer. This past February we held THON at Penn State and raised 9.5 million dollars! I was honored enough to be chosen as a dancer and danced for 46 hours (no sitting, no sleeping) and could not be more proud to represent families like yours. If you want to know more, you can check it all out at THON.org. I am so inspired by your story and Lucy, I know you're going to come out on top like a true rockstar.
    "One day we will dance in celebration, until then, we will dance for life."
    FTK Always (For The Kids),
    Kait Sawyer

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  4. i'm so sorry that your daughter is going through this, it must be so hard. I hope she will be home with you soon!

    http://bottleblack.blogspot.com

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  5. I became a follower of your blog last week and have been praying for your family ever since. I'm so sorry that your family is going through this, but I pray that St. Jude will be able to help, and that your daughter will be cured of the cancer that she has.

    Prayers and Love,
    heather

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  6. Kate, no inspiring or encouraging spiritual words from me today....you seem to have enough them, and you sound so amazing...I just wanted to tell you that YOU LOOK AMAZING...I love those pictures of you! God is keeping you beautiful on the rollercoaster!

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  7. I am not good with words but i just wanna say GO LUCY GOOO!!! :)

    Just know that the Smith Family is praying for you sweet little girl..

    Nicole Kelsey and Daniel :)

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  8. I am sending never ending prayers to Lucy and your family. With your guys strength you will get through this! You guys have such a beautiful family! HUGS AND LOTS OF LOVE FROM KENTUCKY!

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  9. Kate, we don't know each other but share a common bond unique only to those mothers who have watched their children suffer. My daughter Micah was diagnosed with Neuroblastoma Stage IV cancer when she was just 11 months old. Lucky for us, we were only at our local children's hospital 4 days before being transported via ambulance to St.Jude where we spent the next 18 months in and out of treatments, surgeries, phys therapy, you know the drill. I was a single mom and college student and the outpouring of love and grace for us from family, friends, strangers, etc. was and still is completely overwhelming! God is so good as you said in your post!!! Micah Grace is now 10 years old and we have spent every year since her treatment ended being a poster family for St.Jude, sharing our story all over the country, media, etc. Praise the Lord for such an amazing hospital! I can't tell yet if y'all are there or at another hospital, but wherever you are, God will use the hands and minds of the people taking care of sweet Lucy to do the best they can! I have faith. We will be praying....
    I haven't updated in a while, but www.caringbridge.org/ms/micah

    This trial will test your faith beyond its capacity, but God will pick up the slack where you fail or falter.
    Believe...
    Sarah

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  10. Praise you Kate! Praise you Lucy! Keep your spirits up high with God! You are truly unbelievable individuals! We continue to pray for the healing of sweet Lucy and that God keeps you (kate) strong. Blessings and Love, Tina Anne - Eads, TN

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  11. You take care of your little girl, Lucy, and we shall do all the praying for you! Prayers are being sent UP for you and your family!

    Laurie from Massachusetts

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  12. Kate when I was told that Hallie would be in heart failure by Christmas last summer I was petrified. The images of her procedure and her 50 lb body were too much for any mother to bare. Kate I admire your faith right now bc I couldn't put 1 single thought together much alone pray. For weeks anticipating surgery all I could do was cry out my baby to God. Every time I shed "buckets" of tears, which was almost 90% of the time the Lord new my heart and desires for my baby. Yes I wasn't still either to hear him. I was too stubborn thinking of worst case scenrios he amazed me by ministering to me through other people, songs and any other way you can imagine. HE MADE HIS PRESENCE KNOWN!!!!!! I am continually praying for Lucy and your family......our God is good and I only hope to be the mother you are 1 day......with much love in Mississippi.......Amy

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  13. Praying for you in Alabama!!

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  14. Hey! You don't know me...found your blog through a friend's blog but I have prayed for Lucy the moment I read about her. You are a brave, sweet momma! We are in the Lenten Season which is the best time to get closer to God - and in this time little Lucy(and her siblings)are on my prayer list. Erin from MS

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  15. Kate -

    Thank you for continuing to keep us all updated. Lucy is on my mind so much! PLEASE tell Lucy that I love her!!!!

    Hang in there momma. I wish I could give you hugs!

    Much love and prayers from Upstate NY.

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  16. Our 7 year old son had leukemia 6 years ago and went thru countless surgeries, blood transfusions and chemo for 2 1/2 years.It was the most terrifying time of our lives filled with many hospital stays and a fearful time of worry and he almost died but with God' grace we got thru it and he survived and your family will too.He's now 13 and in remission. God bless.

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  17. Continuing to think and pray for you all! Please let us know if there is anything we can do here in Kentucky.

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  18. Kate,
    What an amazing thought from God by Lucy's teacher! Your Lucy has been used by God in more ways than most adults! She has blessed our lives and taught us about God's love, about prayer, and strength! I know you would rather your Lucy not have to go through this but thank you for being willing to post your thoughts! Last night when we asked Ella waht she wanted to pray for she looked at us and said, "Lucy to get better!" It brings tears to my eyes at this moment to think of what you are going through but God IS IN CONTROL! We are praying for your sweet Lucy!

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  19. Kate,

    Although we don't know each other (but we did graduate together), I wanted to extend my prayers to your family during this difficult time. I cannot fathom what your family is going through, but I know God is watching over you all.

    My step-daughter is also an alumni of St. Jude. She was diagnosed with infantile melanoma when she was around 18 months old. The Lord has been good to our family, as she is 7 years old and in remission. I pray the Lord keeps a healing hand on your precious baby and your family.

    Kim Ballard

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  20. So glad to hear she had a somewhat ok day and was able to connect with Tracy! It must be so hard for little kids in the hospital environment, it is hard enough for adults!
    Be still and know that I am God.. that is one of the most powerful and reassuring scriptures in my opinion! Because in such a situation there is nothing we can do but to trust that believe that God is in control.
    I'm continuing praying for Lucy.

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  21. I came across your blog a few weeks ago and now I check your blog daily to see how Lucy is doing. I am Praying for her and God does have a plan for her life. Lucy has touched many lives through this blog but so have you! I just wanted you to know that the blog you wrote on March 4th entitled "Why are You Praying?" was a very powerful post! Yes I am a Christian and I pray regularly but sometimes I get in a rut of praying and wonder ...why bother if I can't see MY prayers being answered.....well first of all God does know the plan for our lives and it is through prayer that we find the faith to trust God to take care of us...not always our way but HIS.....so thanks you for the March 4th post that put PRayer back in perspective to me! God is using you in a mighty way!!!!

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  22. I'm not saying this just to be nice.

    But Lucy is one of the most beautiful children I have ever seen in my life! Absolutley stunning even when she doesn't feel well.


    I know it's so hard to try to figure out God and why He does what He does, but if He is small enough to be figured out, then He isn't big enough to be the God we need Him to be!

    Just let Him do what He has to do and hang on for the ride.

    I, too, believe your daughter will survive and thrive, and because of this trial, she ( and you ) will be more like Jesus.

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  23. Kate, God put Lucy in your care BECAUSE of your style ... don't doubt that for one moment. He knew she would need you.
    Erik, The Krull family has not yet fully realized how God is using each of you! You have been so strong for Kate. That shows just how perfectly God puts things we need in place.
    Aaron Shust's song Give Me Words to Speak has a verse where he sings out to God ‘I'm lying with my face down on the floor, I'm crying out for more' As God gives your family a voice about His saving grace and mercy, our faces are on the floor for your family!!

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  24. Dear Kate,
    We are friends of Zach and Emily Cook and we have been so heartbroken over your little Lucy. You see we have a little Lucy (Lulu) too who is 4 years old and we, like you, have an 11 month old. And I have since they were born, like you, prayed that God would allow me to see my childrens children. So I feel such a connection with you as we seem to have some things in common.
    Since hearing about Lucy I have risen in the morning with her on my mind and all throughout the day I will stop to pray specific things for her and you. I pray that God's presence and peace is felt in her room, that God will give her doctors and nurses a supernatural ability to handle this cancer in ways that go beyond their comprehension, that Lucy will be out of pain, we are praying for healing for her body, for all medicines to work, for all function in her body to be restored, and that He will give you all strength.
    I am telling you this bc only God can place a complete stranger on the hearts of so many to pray. His name is being made known, hearts are calling out to Him bc of Lucy...many probably calling out to Him for the first time. And God is being glorified!!
    I heard something yesterday that I wanted to share with you. "Sometimes the hardest things we walk through can have absolutely NOTHING to do with us."
    God only lets you walk through things that you can handle, and HE has already equipped you and is equipping you along the way. He promises to be our front and rear guard in battles and God always keeps His promises.
    I opened my bible to find a verse to encourage you and this is what He gave:

    For He will command His angels concerning Lucy to guard her in all her ways; they will lift her up in their hands, so that she will not strike her foot against a stone.
    She WILL tread on the lion and the cobra; She will trample the great lion and the serpent.
    “Because SHE loves me,” says the LORD, “I WILL rescue her; I WILL protect her, for she acknowledges my name.
    She will call on me, and I WILL answer her;
    I WILL be with her in trouble,
    I WILL deliver her and honor her.
    WITH LONG LIFE I WILL satisfy her
    and show her my salvation.”
    Psalm 91:11-16


    I will not stop praying for her healing and that in the mean time His salvation is being made known. You are an amazing mommy and daddy and are doing an awesome job!!

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  25. Honey, It is OK that all you can pray for now is Lucy's healing. Any other prayer that needs to be said is where Jesus intercedes for you. Never EVER feel guilty for not having time to pray for anything else other than her healing. All else will be taken care of by the One who took our place on the cross and continues to intercede on our behalf when our humanness cannot do what needs to be done. Keep on keeping on that is all that is asked of you at this time.....Giving God the glory and praying on your behalf.
    Joan Hanks

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  26. Your faith and strength are amazing. Know that in NC, we're praying for all of you.

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  27. Dear Kate, I have been reading your blog for the last 2 days. My family is interceding on Lucy's behalf. May you rest in His promise...Romans 8:26-28 (The Message) says this.....
    Meanwhile, the moment we get tired in the waiting, God's Spirit is right alongside helping us along. If we don't know how or what to pray, it doesn't matter. He does our praying in and for us, making prayer out of our wordless sighs, our aching groans. He knows us far better than we know ourselves, knows our pregnant condition, and keeps us present before God. That's why we can be so sure that every detail in our lives of love for God is worked into something good.

    Praying for sweet Lucy and each one of you!


    Sitting at the feet of Jesus on your behalf,

    Amy Morgan

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  28. You have a beautiful family. I'm praying for your sweet Lucy. She's a fighter!

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  29. My heart is broken that you all are having to walk through this trial in your life. I'm praying for your beautiful Lucy and the rest of you as you fight beside her.

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  30. That picture of Lucy doing her therapy with the monkeys just about knocked me out - the determination and struggle on her face to do that simple action. I can really see what a little fighter she is - probably gets it from her mommy and daddy. Hang in there and know my prayers include sweet Lucy and your whole family.

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  31. Hi there! Just wanted to say Lucy and family are in my daily thoughts and prayers! It has been a little over a week since I first came across you blog and story and haven't stopped thinking about your journey since. I hope and pray you make the trip to St. Jude soon! Take girl pretty little girl named Lucy!

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  32. Hey it's me again. Hope you don't mind strangers commenting on your blog. Maybe one day at St. Jude we will meet:) My son is there every four weeks like clock work. He gets a treatment through an IV. He has actually gotten to where he looks forward to going.

    Lucy is looking awesome girl! She is building on your strength. You don't know it now but this will make you stronger than you ever believed you could be. You will never look at Lucy the same again. You will begin to see her in a much different light because she is doing something most adults can't handle. I admire her so much for her strength! The Lord is looking down and he is keeping her in his sight. DON'T GIVE UP even when they give you bad news. They aren't the ones who will be making that decision. Lucy is strong she will beat this and you will see how awesome and wonderful both the Lord and your child are:) My love and prayers to you and your family. :) <3

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  33. Erik and Kate
    I have been following Lucy's story and am heartbroken for your family's struggle but inspired by your strength and ability to express your faith in such a beautiful way. Lucy has taken hold of so many people who are now her prayer warriors....she is undoubtedly a special young lady. I have a close friend who spent 1 year in isolation at St. Jude with her son who is now 8 Years old and thriving. It is an amazing place where miracles are happening everyday. I have 3 sweet babies of my own and we are praying for Lucy and your family each night. My 9 year old asks about her every morning and every day when I pick her up from school. Your beautiful Lucy is touching the lives of people near and far. I hope God gives you all strength of body, mind and heart.
    Tammy Oliver

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