7.04.2012

Where We Are



Literally we are still in Atlanta.  Figuratively I can't even begin to tell you where we are.  Trying to put into words what has happened is rather hard.   Erik and I feel as if we are stuck in some hell on earth that seems to never end.  I'll try to recap yesterday's events as we best as I can.

We started yesterday as we usually do.  Lucy was up by 8:00, with her first therapy session beginning at 8:30.  We were scheduled for non stop therapies until 11:30.  It was by going to be her hardest day yet by a long shot.  That was the goal, though.  Friday was our scheduled discharge date and Lucy was set to begin 2-4 weeks of outpatient rehab here in Atlanta the following Monday.  (we had planned a weekend full of Atlanta site-seeing for our family, including a trip to the American Girl store.)  The morning's therapies included 2 speech sessions, which is always a little worrisome.  Since being here in Atlanta, Lucy has gained body strength like a rock star.  She has blown everyone away with her progress.  Cognitive fatigue still remains a big problem.



At 10:30 we were leaving her 2nd speech therapy of the day.  She had spent 30 min on the computer doing math problems and memory activities.  I could tell while she was working that she was tired.  Her brain was struggling to put simple patterns together.  As she was walking with her walker her right hand went limp.  I sort of thought she was just being whiny because she didn't want to go to PT next.  I encouraged her to put her hand back up on the handle, but noticed that she was veering into the wall.  Panic set in and I got down in her face.  I told her to squeeze my hand and talk to me.  She tried to tell me her tummy hurt, but her words were so slurred that I could hardly understand her.  The sweet PT that was with us ran to get a doctor while I picked Lucy up and ran to our room.  I sat on the couch with her rocking her back and forth.  I was hysterical.  I kept yelling at her to talk to me and look at me.  Her whole right arm was limp and she couldn't speak.  I picked up the phone and somehow through my crazy crying I called Erik and told him to get back down here immediately.  My sweet uncle made his plane available and my cousin flew him down here within 2 hours.


(Amanda was here with me but was literally walking out the door to go to the airport when Lucy's event happened.  It was agonizing seeing her go, but I knew she had to.  Lucy's tutor and my dear friend Cissy is actually in Atlanta right now visiting her family so she was able to come be with me yesterday afternoon and the youth minister from our church came as well.  God provided those friends when I needed them most.)

When Erik got here Lucy had already had a CT and we were down stairs in the sedation room waiting on our turn for an MRI.  Lucy never woke up, except to moan or cry, after the "episode."  Thankfully Erik got here before she went back for MRI.  And I am so glad he did because as we were taking her back for sedation Lucy vomited and had a small seizure.  The doctor here wouldn't agree that it was a seizure which made me really mad.  For one, he didn't even see it.  Secondly, we know that what she had at LeBonheur was a seizure because it was recorded on EEG.  What Lucy did last night was the exact same thing.

After the MRI was read the doctor came and told us he saw tumor activity in her brain.  Of course we were devastated and scared.  We had a good cry and then made some calls to Memphis.  To make a very long story short St. Jude and LeBonheur are not willing to corroborate Atlanta's findings until they have reviewed the scans themselves.  Lucy has always had abnormal scans.  There is scar tissue in her brain from surgery, radiation and meningitis.  Without having a good understanding of what is normal for Lucy it's hard to make a definitive statement that she has relapsed.

I am angry and frustrated that we were not able to leave today.  It sure wasn't for lack of begging on our part or Dr. W's end.  Dr. W has been absolutely amazing and we just feel so blessed to have her as a doctor.  If I've learned anything since being in Atlanta its that Memphis is off the charts lucky to have LeBonheur and St. Jude in the same city.  Those two hospitals are world class and in a league of their own.  That's why we need to go back.  We need to be with the doctors who know (and love) Lucy and our family.  We are dealing with potentially devastating news and I want the absolute best doctors in the world caring for my baby.  And that's what we have in Memphis.

Today was agonizing.  Erik and I had a lot of opportunity to stare at each other, stare out of the window, stare at Lucy and fill our day with worry and tears.  Lucy was actually in good spirits today and was amazingly strong.  She did take a nap in my arms outside but other than did really well today.  She was very tired, but seemed to be cognitively in good shape.  That is what makes this whole ride so hard.  Yesterday was another "I think I'm losing my baby" day and today she looked as if nothing every happened.  How are we supposed to process that?  Are we supposed to have hope or should we start grieving?  


Honestly, I think right now I am just numb and I am mad at myself.  I feel as if I've let Lucy down.  I don't understand how I could have so much peace that we were making the right decision to come to Atlanta only to take Lucy home so abruptly.  There wasn't a bone in my body that felt it was wrong.  It will be hard leaving tomorrow because I was looking forward to what day rehab was going to do for Lucy.  I wanted this for her so badly.  I wanted it for our whole family.  It seemed to be such a perfect fit for her.  As I write this my stomach is in knots as I think about walking away from this rehab program.  It is literally painful to think about it.

I just don't understand.  Right now I am looking at this situation and I'm struggling to see the blessings that were gained here.  We have met some great people but I don't even feel as if God used us to be a blessing to anyone.  I would at least like to know that we are walking away and made a difference to someone, somehow.  Our time here was brief.  Too brief.  I can say that I will leave here with a handful of names that will be added to my prayer list.  Maybe that's it.  Who knows.  Surely we weren't brought here just to have names added to our prayer list.  Surely God would have led us to those names in another way.  Ugh.  It's just so hard to make sense of anything anymore.  My Dad told me tonight that I may never the blessings received or given this side of heaven.  While that doesn't bring my a lot of comfort right now, I will continue to pray that God would not let Lucy's suffering be in vain.  If anything good can come of it, I hope that someone will come to know Christ by witnessing the miracles that God has already performed in Lucy's life.  I will never stop praying for more.  


The plan is to be out of here by noon tomorrow.  We will transfer to St. Jude via hospital transport.  I am hoping for a plane ride, but it might be a 6 hour journey via ambulance.  Either way, by tomorrow night we will be surrounded by our family and my arms are already aching.  Lucy is so excited about seeing Ella and vice versa.  They were so precious tonight speaking on the phone.  Those two girls love each other so much.  Right now, more than anything, we need to be together as a family.  


My prayer tonight is that the Lord will grant us traveling graces, that we will be reunited as a family and Lucy's MRI will be deemed cancer free.  Everything else will fall into place after that.  There are some major hurdles to cross tomorrow.  I am asking God to go before us and pave the way.  


1 Chronicles 28:20 
"Be strong and courageous, and do the work. Do not be afraid or discouraged, for the LORD God, my God, is with you. He will not fail you or forsake you until all the work for the service of the temple of the LORD is finished. 



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106 comments:

  1. I can't tell you how relieved I am that you are going back to be together as a family. God be with you.

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  2. You have planted seeds for people that you will never know until you get to heaven. If only one other person comes to know Christ as their personal Lord and Saviour. I think your Dad said it best. Praying for you daily.

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  3. Praying for safe, fast travel tomorrow and beautiful reunions! Continuing to pray for sweet, strong, Lucy and her family. May peace be with you.

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  4. Praying for Lucy and the rest of your family tonight.

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  5. Praying for all of you Kate and traveling mercies no matter how you return to Memphis. Praying for another miracle for Lucy and another Lazarus moment for her too! You have amazing strength from the Lord and even if I'm not from Atlanta, the time you've spent there with Lucy has touched me! You've taught me how precious our time is with my one little one. I don't take any moment for granted with her these days. I hope you're return will bring along some quick answers for all of you. Kelly in Munford

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  6. Juaacklyn CunninghamJuly 4, 2012 at 10:58 PM

    Praying for a good report for Miss Lucy and traveling mercies for you all.

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  7. Thanks so much for the update... I had just logged on to check on Lucy. She has been in my thoughts all day. I can only imagine that it is difficult to see the plan in all of this Maybe sometimes God just needs you to go...not necessarily stay. Perhaps the purpose was to be an example of going when He says to go?? I can't begin to tell you how much you all are on my heart! It is so strange to feel such compassion for someone I have never met, yet I do. Please know that little Lucy has big influence! Each time I feel the need to complain about life's ordinary struggles, I think of your family. She has made me focus on my many blessings. She is so brave and has faced/overcome more than most people and never gives up! Go, Lucy! Go! You are in my prayers!

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  8. Dear Kate, I want to leave a comment to encourage you, but I don't know what to say. I'm so sorry that Lucy is having setbacks, please don't give up hope.I pray everyday that God's plans for Lucy include a complete healing. I live in Georgia and my daughter and I hoped to try and leave a gift for you when we have an appointment at CHOA next week, but I am so glad that you guys will be together with your family instead. Know that your family and your little girl have made such an impact on so many, you have strengthened my faith. Thank you for sharing with us.

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  9. I am praying!!! May our good Lord be with y'all.
    Kelley
    And I agree with what your Dad said.

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  10. I am praying for you and your family! You have great strength and faith! You and your precious daughter are a true inspiration!

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  11. Judy Walk ThompsonJuly 4, 2012 at 11:01 PM

    Praying for your whole family daily, as I have for months!

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  12. I am sorry that you had such an incredibly hard day. You guys will continue to be in my thoughts and prayers. I will be praying not only for travel mercies but I will be praying you get to take a plane.

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  13. There is no right or wrong way to navigate this path you are on. You are a mother who is trying everything you can to help your little girl. Lucy knows that and you most certainly did NOT let her down. The reasons why God led you to Atlanta are unknown now....but might be clear in the future. Or not. But what you will always know, without a shadow of a doubt, is that you went and you tried. You did not fail. Lucy did not fail. It just was for a shorter time than expected. Now you are heading home. I am so happy you are going to be surrounded by doctors and nurses who know and love Lucy and all of you. And so very excited that you are going to be with family and Ella and Lucy will be able to be together. Praying for speedy, safe, travels....as easy for Lucy as possible. Praying for your strength. Praying for Lucy, always.

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  14. "Honestly, I think right now I am just numb and I am mad at myself. I feel as if I've let Lucy down. I don't understand how I could have so much peace that we were making the right decision to come to Atlanta only to take Lucy home so abruptly. "

    Kate -- please hear this. We just make the best decision we can. And we do so again and again. There are not good decisions in times like this. They all stink. None of them are what a parent should be doing or dreamed of deciding for their child. *I speak from experience. My daughter had brain cancer and meningitis also.

    Hold in it your heart and know you are making the best bad decision you have each day. Lucy knows what is real and what matters. I can see it in her spirit across this screen.

    No regrets, Kate. No regrets and no looking back.

    http://brokenwon.blogspot.com/

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  15. Thank you so much for taking the time to update. Praying for you all, especially for traveling mercies, wisdom in reading the scans, cancer free scans, and a wonderful reuniting of your family. Much love to you all!

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  16. Praying for you and your family as always. May God radically intervene and bless Lucy and your entire family. Thoughts are with you, Kate.

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  17. What a roller coaster. I can feel your anguish. I am not clear why you are leaving Atlanta, though, since Lucy seems to have rallied. However, I do admit to not really knowing what is going on and understand your wanting to be around those who at the very least (actually, the most) provide comfort. I guess my concern would be that the gains she might make in rehab might not ever be realized.

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  18. I am so sorry you are going through this. Psalm 138:8 tells us that God will fulfill His purposes for us. We don't have to worry about if we are doing His will the right way or making a difference - He is doing all of that for us:

    The LORD will fulfill his purpose for me; your steadfast love, O LORD, endures forever. Do not forsake the work of your hands.

    Nobody enjoys the hurt and it is almost impossible to find the "good" in the hurt, but we can find good in the Healer. Instead of asking God "why," I like to ask Him, "how." Instead of "why" is this happening, I will ask, "how" can you help me with what's happening???

    I have been praying for you and sweet Lucy all day. I will continue to do so and I pray so much that He will bring you peace tonight.
    Much love.

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  19. I can't imagine your agony. Thought about you an awful lot earlier today, and the ups and extreme downs that you go through. Thinking of you, and that little dead preschool boy they found in a dumpster near here in Memphis. Both of these scenarios got me hugging and kissing my little boys even more this week. There's just got to be a break for all of you in what seems to be an even more difficult summer than last year. Please know you all are loved with all of our hearts. I pray for your "freedom" from this awful dance with death, may Lucy know perfect health as all of you gain the much needed rest that you have lost for so long. No child deserves what Lucy's been through, she is so precious!!

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  20. Against all hope, in hope I believe...Romans 4:18


    May you know mercy, grace and peace in all things. May your be held in the warm embrace of faith and family. And in all things, may you know with utter certainty, no matter the outcome, that you made the very best decisions for Lucy and your family. NEVER look back, ever! You are doing what is best, believe that with all your soul.

    God bless Lucy, Ella and Jack and their amazing parents.

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  21. I know you and scared and confused, but you have have been on a very long journey. what you described with lucy about the numbness sounds a lot a like a child I know who has a a seisure disorder and that is identical experiences. I believe a mothers instinct is a god given talent that is hard for us to use at times. Kate you can do this. i have been a silent supporter for a long time. i pray for lucy and your family. Please just remember "Go Kate Go" we all believe in you. Thank you for the time you spend giving us updates. you have changed so many lifes. (and there is no place like home.:)!

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  22. I had no idea so much was going on with Lucy. I have been busy with family visiting and didn't see this till just now. But, Lucy was on my mind a lot today and yesterday and so I just prayed and prayed for her. God knows how to alert us.

    Hon, you can't see right now what good you have passed on to those you were around but I do know that your presence there with the prayers you prayed spread the presence of the Holy Spirit on the rehab in Atlanta. God's word through prayer was spread.

    Praying and praying!!
    <><

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  23. I just logged in for an update. Praying praying praying. I hope y'all get home tomorrow to be with familiar doctors nurses and your family. You are doing all you can. God will continue to guide you.

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  24. Praying as always for Lucy's healing. Also, I am praying for you and Erik to feel the love of so many people and the comfort of God's love. I pray for a safe trip back to those who love you so much and for wisdom for the doctors and nurses.

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  25. Hello Dear Kate,

    Thank you for the update...I've been checking the whole day too be honest. You know Kate, I've been think about what you said about not touching anyones lives b/c you were there long enough. I want you to know & with all do respect...YOU'RE WRONG KATE!!! Before you mentioned this hospital in Altanta, I for one had NO IDEA there was such a place for children!!! BECAUSE OF YOU KATE....MANY PEOPLE ARE NOW EDUCATED ABOUT NOT ONLY ATLANTA BUT ARE ALSO NOW EDUCATED ABOUT MEMPHIS'S LeBonheur and ST. JUDE!! Kate - the inside information you have provided people is truly PRICELESS!!!! You may have NO idea how many people you have helped but MARK MY WORDS KATE....I feel VERY STRONGLY YOU have helped MANY!!!

    As you know, going through Cancer is heart breaking in itself but having your child go through it is life changing and overwhelming to say the least!!! I just KNOW because of YOU and YOUR raw honestly and knowledge you have made this horrible journey even just a little easier for MANY PEOPLE. It's like10 degrees of seperation....you may not know you affected someone's life b/c you don't know them directly but you have....you have affected their lives PROFOUNDLY and for the BETTER!!!

    Thank you for your honestly and for updating us when I'm sure you would just rather hold Lucy or rest your exhausted body. I am beyond grateful!!! For many months now I have grown to care and adore your family and love Lucy. I was so thankful to see her beautiful smiling face tonight. THANK YOU!!! YOU made each of our lives greater tonight by simply updating us when we can no right to know any of your family's business.

    I will pray for your quick and safe return home. I will continue to pray for Lucy's health and strength and solace for yourself and Erik. Solace in knowing your decision at that time WAS the right decision. Solace in knowing how many lives you touch on a daily basis by simply offering a comforting hug, giving a gentle, knowing smile, and with a single stroke of a key board. Solace in knowing tonight, you calmed many people's worried hearts by the selfless gift of sharing some beautiful pictures of your baby girl and by describing how well Lucy is doing today.

    God Bless You Kate...tonight and for always! xo

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  26. Praying that your journey back is easy and safe. Praying that Lucy's MRI will be shown to be Lucy's normal. Praying for each member of your dear family as you reunite. May God's blessings rain down on each of you.

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  27. I am surprised at how CHOA has dealt with it. I have only had fantastic (well ... under the circumstances) experiences with both CHOA and Winship in Atlanta. They are first class hospitals, so I don't really see what their problem is with Lucy.
    Either way, good luck and safe travels back home!

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  28. Michelle in AustraliaJuly 5, 2012 at 12:28 AM

    I prayed for an update before I logged in to check on you and Lucy. And God granted my prayer for news. Thank you for taking the time to keep us, the Legion of Lucy, aware of what is happening so we can pray. God Bless you all Kate. And I will pray for a comfortable transport home to Memphis for you all.

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  29. I am praying that you find every little bit of peace, hope, love and encouragement in each moment, and that you are aware that you are spreading those same things as you go. You are a good mother, a really, really, good mother.

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  30. Praying...Always.

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  31. Kate, I am continuing to pray for you all. I can't imagine what you all are going through but my prayer is that God will see you all through the days ahead. We have not and will not quit praying for you all!

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  32. Kate, please know that I am praying for Lucy and for you and your husband. I have no words. Just know that there are so many contending for Lucy's healing.

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  33. Im so sorry.I am Praying!

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  34. Amazing Grace, how sweet the sound...
    Jesus IS still in control...he knows Lucy's appointed days and always has...nothing slips unnoticed through His divine fingers....May they caress you with LOVE tomorrow and protect you from the enemy.

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  35. We are all thinking about you with love and hope that when you return to Memphis, the news is hopeful. Lily. xxx

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  36. Hello Kate,
    The things that I looked for in your post on your time in Atlanta were the good things, the meeting nice people, Lucy's little times of excitement, and Lucy 'being in good spirits, amazingly strong' and doing really well. Yes you must always hope and trust in what God tells you for Lucy, through HIS word to you as you seek HIM. For faith comes through hearing the word of God and is the SUBSTANCE of things hoped for. If you do your utmost to keep your mind stayed upon Him, and that word of Him' being able to do what it is not possible for man to do', then you will be kept in perfect peace. God's promises to those that believe are all 'YES' in Jesus. As christians we are in Jesus and have the right to have access to those promises. Try not to go by what your mind might be telling you if it opposes what God's promise tells you. May God bless you and bring the promise of His word to heal us from all our diseases be brought into existance for your little daughter Lucy. Amen and I give You thanks Father for Your word of truth and blessing.

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  37. Kate. Please know that so many of your followers understand your anger and struggle to understand how this pain and suffering can be part of God plan. I'm struggling right now too. A dear friend of mine lost two of her three children yesterday in a freak accident and I'm having the hardest time figuring out what to say to bring comfort and how God could do this to this loving family. I understand we can't possibly know what God intends for our lives. But when you see children impacted by such pain, it's even more difficult.

    Please know that while Lucy is always in my prayers, I'm saying a special one for you right now, that God may reveal his purpose for your visit to Atlanta so that your burden may be eased just a bit. Lord knows you deserve that much and sooo much more!

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  38. Praying for you all as you make your way home..........

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  39. Traveling mercies ... prayers continue. Take care.

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  40. Praying for traveling mercies and good test results for Lucy from here in Munford.

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  41. I check frequently for updates to know how Lucy is and how to pray. I'm praying today for your safe travel, Lucy's strength, and clarity and wisdom for the doctors. God bless you all.

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  42. Kate, I am so so sorry for you all, My heart goes out to you all and poor little Lucy, what a strong little girl she is. I can not even imagine the ups and downs that you are going through because I don't but my heart just hurts for you daily. I have to say that every day several times a day I check my computer hoping for a beautiful picture and an update on your family. My heart soared when I saw the picture of you with Ella and Jack. It has to be so hard to be torn between your family being in two different places. Kate I can only say you are one amazing woman that does not deserve to go through this. Just remember we are here with open hearts for your family even though we are only blogging friends. Good Luck on your trip back home where you all belong.

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  43. Please know that you have touched SO MANY lives - most of which you will never know.

    You and your family are in my prayers - every day and throughout the day.

    You never cease to amaze me with your love, compassion, faith, attitude - and you have shared that with so many in person and through your blog.

    God bless you and your precious family.

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  44. Kate,
    Thank you for sharing your heart! I am so thankful that God loves us and cares for us right where we are! His love and grace are an amazing thing and sometimes that is all we have to cling too. I will be praying for your family today that you will be able to travel when and how your hearts desires it. Praying also that God's love comforts you through whatever He has for you today! Praying for your entire family and the doctors! Praying in Florida!

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  45. Kate, Erik and Lucy,
    Our prayers are with you as you travel back to Memphis. You are precious to God, sweet Lucy and he will take care of you. Love to you all. Julie and Bob

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  46. Kate, sending love and prayers to you all. May God hold you tight.

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  47. Prayers are with you and your family as you go back home. Prayers that Lucy stays strong and they make sure all is well. Glad to see that you will be back with your family and see what God will bring to your wonderful family. Lucy will heal and she will get stronger. Many Prayers and Blessings!!

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  48. Wishing you a SAFE jorney back to St Judes and to Dr W. Another persons, Jenn, post was so correct. You and Eric have had to make choices no parent should have to make and you have done what is right for the time.
    We are all praying for Lucy, and for Ella ,Jack you and Eric. We also pray for the doctors and Lucy's team of care givers. God Bless

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  49. Oh Kate-This whole roller coaster makes me want to scream on your behalf. How frustrating to see your beautiful child going through this. I will be praying today that you will have a safe trip and get back to where the doctors know you. I will praise God that Lucy seems to be back to where she was before this setback. I will pray that this will just be a minor setback. I will pray that this is Lucy's very last setback and it will be just forward steps from here on out. If nothing else comes out of your time in Atlanta, you have seen Lucy heal physically. You know you can push her beyond where you thought possible. She is stronger than she was when you arrived a few weeks ago. If she must fight, she has more strength to do so. We will pray without ceasing.

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  50. Thinking of all of you and praying for a safe journey. Love on that little girl, we will all pray for that miracle!

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  51. Dear Kate, When I read your header of Where Are We the first thing that crossed my mind was - "you all are in the prayers of many people" and "firmly in the grip of the Father". This past Sunday I was giving a praise report about Lucy's Lazirus moment as we continue to pray for all of you. A young man in his 30's came up tome and told me he was so encouraged to hear the praise report testimony. Thank you for sharing your heart with us.......

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  52. Lifting you up in prayer, and believing in miracles.

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  53. The picture in this post of Lucy nuzzled so peacefully and securely in your neck is absolutely precious! Praying for the specific needs - God knows them - that are needed today.

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  54. Whether in Atlanta, or Memphis, or on the world wide wed, Lucy's story has made a tremendous impact on the lives of others. Her blessings on others may be hard for you to see, but you must know in your heart that your precious child has made a difference in the lives of others through the struggles she has endured. Lucy is a beautiful and amazing child, a precious Child of God. Lucy's story has changed me and has changed others. You and your family are an inspiration to me and everyone else who follows your story. I pray for Lucy and your family daily, just as I pray for my own. Today I am praying that you will find peace in all of this and know without a doubt that you, Erik, Ella, Lucy, and Jack have all made a difference and blessed the lives of so many.

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  55. Kate, You and your family are in my thoughts and prayers.

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  56. Kate--Our prayers for little Lucy and all of your family continue to be raised to God, daily. Only you and Erick know what choices are right for your little girl--and the ones you make are the right ones. Don't beat yourself up questioning your decisions. They are decisions made in love and concern for Lucy and even thought this trip to Atlanta is shorter than you think--huge strides were made and you learned techniqes and therapies that worked to make Lucy stronger and they can be applyed anywhere you are. The Doctors in Memphis can assess everything and set a new path of care and treatment. You must be reassured no matter what you and Eric have been the absolute best decisions and never ever doubt that. Your decisions were made from the deepest love you have for your little girl and the best medical advice you receive. You are Mommy and Daddy and NO one can feel the rightness of what needs to be done for Lucy and all your family. Prayers and Blessings for what steps you need to take in Lucy's journey....

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  57. Kate,
    I know I usually text you, but this is not important or something I need to know. They say hind site is 20/20. Well, your dad is right...you don't always get to see the blessings this side of heaven. When Ivee relapsed last January, I just didn't understand and I was angry at myself for feeling that God had healed her....just to have it come back. I thought, with all that we had been through, for the miracle I had felt he did in my heart, why was this happening again. Why did she need to suffer anymore.
    Emmett and I meet your father one week after ivee's resection in the cafeteria of Le B, the moment your baby was in surgery. It was ivee's first day out of her room, us pulling her in the wagon, attached to oxygen and sensors, looking like she had just been through the washer. My Emmett found some peace that day being able to minister to Paul. He later told me that night that we may never know why Ivee has had to suffer this again, but if for no other reason, maybe it was so that he could share and listen to Paul, to make a connection. I have hoped I could be more of a help in your journey. I wish could help more people, but I do pray, begging God for miracles. Things that will bring amazement to the lost, affirmation to the saved, and healing for the broken. I am praying dAily, often, for your miracle. I am praying for a break from the suffering, the worrying, the heartache. I've felt your words, and when you speak, I feel as though I can feel my own wounds and scars aching. I still feel your anxiety, even after all these years, my Ivee is still trying to overcome the effected of two battles with cancer, it's treatment, it's deficits. Just this week she has suffered trying to breath and cough up thick saliva and mucus that has threatend to chock and affixiate her just cause her vocal,chords and muscles aren't strong enough to cough it off her air way! Everyone of us has their battle,and no ones is more important than the others. ALL our suffering and trials is significant to God, no matter how big or small, and he wants all of them laid at his feet. I love your family. I am praying for answers....SURE answers and solutions. Always praying for you and your family, and you Lucy! Love you, Hope

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  58. Kate....please don't be mad at yourself. You can't see yourself through our eyes....and you are a remarkable woman, mother, wife, caregiver, and so much more. BUT......you are also human...a human who is hurting, exhausted, confused, and at her wits end. ....I can't imagine what the reason for all of this is. I ask God 'why' in my prayers. We may never know the answer this side of Heaven....so much doesn't make sense. I struggle with things re: my mother who has Alzheimers. I don't understand the lonnnnngggg drawn-out suffering and humiliation....don't understand it at all....and it just goes on and on and on. Of course, she's not my child....but she 'was' my mother. I'd give anything to be able to talk to her about things going on in my life....or to put my head in her lap while she stroked my hair again.... I just wish things could be "like they used to be" again.

    Please....just know you're doing all you know to do even though it may never "seem to you" to hit the mark. Even though you may be feeling un-endingly helpless, just your presence, your arms, your kisses, your words of comfort and encouragement give Lucy more than any medicine ever could.

    My words must sound so hollow to you. If it were my child, that's exactly how I might feel and what I might think.....no matter how much you do, it will never "feel" like enough. But "you are" Lucy's blessing....God picked you to do the earthly part....as hard as it is. You're giving it all you've got..and then some more. You are an extraordinary "mama"........!!

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  59. Thinking of your family today. Love, love, love the pictures of sweet Lucy. She still has fight in her, you can see it!

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  60. I know God is with you every single step of the way. We are all praying. Hold on tight and let God do his work. I love you all and wil continue to pray.

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  61. Kate -
    I don't know you personally, but have followed some of your blog through a mutual friend. As a mom of 3, including a 2 year old girl, I have been blessed by your faith and encouraged by you pushing through each day, sometimes one step at a time. I don't have answers for you. I know making someone else 1,000 miles away feel encouraged while you are induring such heartache, does not take the heartache away - as much as I wish it could. Know that another momma thousands of miles away from you is praying for you, you daughter, your 2 other children, the doctors, and your entire family.
    Reading your story reminds be to be grateful for the little blessings God has provided.
    You are a living witness to each one you come in contact with. I can precieve your sweet, Godly spirit in your writings. So, to see you or speak to you in person in which the Spirit of Christ is alive and active, I can only imagine the way you are touching lives. Just sitting outside holding your sweet baby demonstrates an unconditional love and as others see you holding her loving on her and not giving up; you encourage other parents, grandparents, to keep believing, keep trusting, keep fighting, and keep loving. I can only imagine another parent who was growing weary and tired, seeing you holding her outside and was encouraged to keep on keeping on.
    "People are not looking for you to have it together, they are looking to see what happens when you don't" - Beth Moore
    You are concerned about the lives you touched while in Atlanta, and impacting more lives while there, my dear, that is letting Christ's Holy Spirit live through you even when you don't have it together, no mom could possibly feel they have it together while enduring these circumstances, but through Christ... you do!

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  62. Prayers for traveling mercies for you all! And your dad is right that you will not know ALL of what God has done through your family's journey this side of heaven but just looking at the comments on your blog it is obvious that Many Many people have already been touched in ways that only be explained by knowing God has been in every situation. Please do not doubt your decision, I know that is much easier said than done, but you had peace so it WAS right! I pray God will reveal some of the answers to you to give you peace because you deserve peace right now more than anyone I can think of.
    In Christ's Love,

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  63. Dearest Kate, do NOT feel like you let that sweet baby down. You DID make the right decision by trying to help her get the intense p.t. she needed to help her get stronger. She just got sick while you were there. You didn't do ANYTHING wrong! You and Erik have been doing everything in your power for this little girl and I say KUDOS to you! Your family has such love and support from each other and you all have such a strong faith. Don't be mad at yourself. You did the right thing. Prayers going out to you all. And I am praying for good results when St. Jude reads her scans. Much love!

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  64. Dear Kate,may this Word encourage you today:
    Romans 15:13 May The God of YOUR HOPE so fill you with all Joy & Peace in believing(through the experience of your faith) that by the Power of The Holy Spirit you may ABOUND & be OVERFLOWING(bubbling over) with HOPE.
    Be BLESSED,Ashley

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  65. Kate, please know that you ARE a good mother and you didn't make any wrong decisions! The decision you made to go to Atlanta only proved to Lucy that you believe in her. You were thinking of her best interest and quality of life. Your dedication, continuous love and support for Lucy proves that you are the best mother she could ever wish for! I have never met you but I can see this thru your posts.

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  66. Dear Kate, please know that Lucy and the rest of you are in my constant thoughts and prayers... May our God hold you close to
    His heart today and give you peace and strength!!

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  67. Kate, your family continues to be in our prayers. I pray also the doctors receive clarity and can provide you with a revised treatment plan so Lucy can be w/her family as she recovers.

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  68. My heart aches to read of all that you, Erik and Lucy have been through in the last 48 hours. I will be praying ceaselessly today for your safe return to Memphis and most importantly, for clear scans!!!!! Please know that you did not let Lucy down. You couldn't. You prayed for direction and you followed God's call for Lucy to be in Atlanta. Although in this moment the reason God led you to Atlanta is unclear, you went as the Lord directed. How better could you serve your daughter?

    I can only imagine how out of control things must feel right now, and from one fellow extreme type-A'er to another, I know it must literally be maddening. But, during this tempest, try to hold onto the truth that God IS at the helm. This verse was in my devotional earlier this week and it made me think of you and Lucy:

    "I will lead the blind by ways they have not known, along unfamiliar paths... I will turn the darkness into light before them and make the rough places smooth. These are the things I will do; I will not forsake them." Isaiah 42:16 (NIV)

    He's certainly led you and Lucy down a long, winding, twisted and unfamiliar path, but that darkness will be turned to light and those rough places will be made smooth. He's got this. I know it.

    Much love to you all...

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  69. Kate, perhaps the strength that Lucy has gained in Atlanta is just what she will need for the days ahead! Praying for smooth transit back to Memphis from my home right down the road. I think of Lucy each time I see the LeBonheur heart!

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  70. We are so sorry for everything your family is going through. Every night our girls say a prayer for Lucy and your sweet family. It was not part of nightly ritual to say prayers but I can tell you that since the beginning of June when Lucy got sick, my girls have prayed every night for your family and for everything they are thankful for in their lives. We will continue to think about your family daily and pray for better news back home in Memphis.

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  71. Bless you all. I have been checking for an update. I have been crying tears of joy and sorrow with you. I just have to say, that baby girl of yours has the most BEAUTIFUL smile! It is forever etched in my mind! I love to see her smile! Prayers for you and your family Kate. We are all praying in the Locke house!

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  72. I can't imagine what you are going through. I am praying for you all. It's sometimes hard to understand why God permits these things. I'm still questioning him about my sister and I last yr when both went through cancer. Mary Adair

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  73. Hi Kate, I've been following your blog for awhile now - and wanted to tell you that we pray for you and your family every single day. Before I started following your blog, we had fallen away from daily prayers, and your family brought us back.

    As for your purpose in Atlanta - you might not ever know. But God does. I would have to say that you've reminded me that even when we don't know our purpose, we should trust in God that living our days as he planned is in HIS purpose.

    We will continue to pray for you all.

    Love,

    Cathy

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  74. The roller coaster continues and you amazingly put one foot in front of another, fighting for the most precious of all - Lucy and your family. Your blog has become my "morning coffee" and nightcap. We may never meet, but I continue to pray for your daughter and family. I also look at your pictures and marvel at Lucy's strength. Her eyes show a strength and determination that give me hope that a set back is just that . . . a step backwards, but not the end of the journey. You are all remarkable. May your trip back to Memphis be safe and finish with a measure of reassurance. If nothing else, your brief time in Atlanta did give her some physical strength that will help on the next leg of your journey.

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  75. Saw this and thought about sweet Lucy!

    http://www.facebook.com/photo.php?fbid=260598424039738&set=a.260598254039755.42055.126294430803472&type=1&theater

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  76. Kate, All I can say is GOD BLESS YALL< And give yall the strenght that yall need to indure all of this , My heart goes out to you, your a mighty powerful and strong person,
    Lucy, has touched SO many hearts,
    It's all in GOD"S hands, And he will see yall threw this, AGAIN, GOD BLESS,

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  77. Dear Friend,

    Words can not explain what your family has experiences

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  78. I continue to pray for your entire family daily. Praying for your travels today.

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  79. Praying for Lucy, Kate and Erik as you travel back to Memphis. Praying for God's anointing on Lucy and for HIS spirit of comfort and peace to envelope your entire family! God is STILL in control and I will continue to pray for miracles!! We love you Lucy!! "We can cast our burdens on Him confident that Christ will sustain us!" (Psalm 55:22).

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  80. Praying and praying and praying...for peace, love, and faith for the Krull family.

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  81. praying, praying , praying

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  82. Kate,
    I am praying for you in Tampa. I have just finished a Beth Moore study on Esther and I am aware of God's reversals of circumstances to bring about His destiny for you. He's got your back in all of this. If you are being moved back to Memphis there is a reason and your faith and willingness to share here on facebook are changing the lives of people in Atlanta, Memphis and around the world. Lucy is priceless and even this despicable suffering has value in God's plan. We will not stop praying for peace amidst this incredible storm. Will continue to love and pray for all of you, but especially you as a sister in Christ. Safe travels!

    Dianne in Tampa

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  83. I will never give up praying for more miracles for your sweet, sweet girl! I will remain steadfast in praying for her, for you and for everyone close to her. You have given so much hope to so many through your blog and sharing this journey. Hope is a powerful motivator. Keeping hoping and keep praying...I will too. You are an amazing momma to an equally amazing daughter and miracles do happen.

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  84. I am praying you get to st jude quickly and safely. May God reveal His work and give you the sweet peace and comfort that only HE can give! Keep your eyes looking up and believe that He is able to do abundantly more than we can ever ask or imagine! He is Cod and He is the one who gives life!!

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  85. Praying for traveling graces and for healing graces and for whatever it takes for peace in each of your hearts... God Speed...

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  86. Prayers continue for you all.

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  87. Kate,

    Our thoughts and prayers continue to be with you, your family and friends, the doctors and nurses, and everyone else whose life is touched by Lucy's story. Please remember that you are doing your very best for Lucy, and you carefully make decisions based on love and prayers. You would never make a bad choice because you have been relying on God's wisdom to carry you through this journey. Don't start second guessing any decision because you allow the devil to enter. Your faith is strong; your love for Lucy is strong. You are a wonderful mother to all three of your children, and they know this now and will remember your selfless sacrifices and strength when they are older. You are a shining example to everyone who knows you and to everyone who follows your story. Stand firm in your faith in God. He is using your precious child, and her suffering is not in vain. Even your brief trip to Atlanta had purpose. Although the reason may not be evident now, there is surely a purpose for the change. You even said you felt at peace when making the decision to go to CHOA. God's Hand was at work then, and it will continue to guide you. Your strength, courage, patience, love and faith have brought you this far. Everyone has overwhelming days, and you've managed to hold it together for a really long time. The world continues to pray for you. And we continue to delight in the pictures of Lucy's beautiful smile. Thank you for continuing to share your journey. We'll keep praying. Go Kate, go!

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  88. You are in my prayers now and always. You must be exhausted right now. I agree with Jen. You've made hundreds of us aware of another Children's hospital that we can support with prayer and in other ways as well. I hope you get some much needed rest.

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  89. I have been praying for Lucy all day. I pray Lucy gets great scans. Please know my prayers will not cease for Lucy and your family. XXXOOO

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  90. Kate,
    I've been following your blog for a few months now, and just had to comment today - that photo of you and Lucy says it all. You look so tired and stressed, but are still trying to smile, and still giving comfort to your girl.
    I have nothing helpful to say, except that I am praying for sweet Lucy and your whole family.

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  91. You and your family are never far from my thoughts, and always in my prayers.

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  92. Know there is hope...My son Nolan was diagnosed with metastatic anaplastic medulloblastoma in October 8,2009. He has since relapsed 2 times. All his treatments were at CHOA Scottish Rite. We are not promised a cure of course but he's doing really good on a metronomic chemotherapy plan. Things are not perfect but he is able to enjoy family, friends, vacations, going to school and just being a kid. If you are interested in talking you can e-mail me at britt62084@bellsouth.net
    Nolan's websites are www.praying4nolan.blogspot.com and www.caringbridge.org/visit/nolanblake
    We have been following Lucy for a while now but haven't commented. I just wanted you to know there is support and we are praying for you!
    Brittany, Nolan and family

    our friend created this on facebook. It's all the research he's done on relapsed medulloblastoma
    https://www.facebook.com/pages/Relapse-Medulloblastoma/321335704549698

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  93. Just wanted you to know that my family prays for you daily. My almost 3 year old wants to see pictures of "little Lucy" as she lovingly calls her and if we ever forget to pray for her, she pipes in offering confident prayers for Lucy's healing. Love and Continued Prayers from Olive Branch, MS.

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  94. Kate, praying for your sweet girl!! Praying for traveling mercies and a great day tomorrow for everyone!!

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  95. You are truly in the fire! My heart aches for you and Lucy! Love and prayers are sent your way!!!!

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  96. Lots of hugs and prayers!! Believers always make an impact on the people they around. More so when they don't think they are. Thinking and praying for you.

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  97. I'm praying that you made it back to Memphis safely, and that Lucy's doctors are able to find out quickly exactly what happened. They're the experts on her and I pray that they give you good news. God is good!!!

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  98. Thank you so much for opening your heart and sharing this difficult journey with us all! God continues in control and I trust that includes healing, full recovery for Lucy and joy in your family!

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  99. my husband after brain surgery would have seizures off and on even on medication,that is probably what is happening to her. it is scary till you get use to it.but in most people they do fine. take care and you and your family are in our prayers.

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  100. Hi Kate...my name is Allison, and I sit next to Amber at work at CHOA :). Ever since she told me about you all and this blog, I've been looking in on you. When I found out you all were coming to CIRU, I sorta felt like I was one degree from a celebrity :). I have a very different, but very difficult history with my little boy, john, who is fighting Menkes Disease, and currently winning (thanks Charlie Sheen...). However, i do know that winning is a word that can last a lifetime, or just a fleeting second. I am always on alert-I can NOT imagine how you are dealing....I will not try, because the only ones who KNOW are Y'ALL. Not a soul on this earth knows better, now matter how well they know you and Lucy, or how little.

    You are an incredible mother, your husband, an amazing dad. Ella....a big sister that should be envied, and sweet Jack-are there words? Your story doesn't tug at my heart, it bares it to the awful and beautiful world. It makes me count my blessings, and it makes me stronger in faith, by making me angry, vulnerable, sad, and stronger. I often feel numb from the (different, but similar???) emotions that are brought to me by John-directly or indirectly. You have made me less numb....so I can feel again. I need that-for my son, for my marriage, for my daughter, for me, to keep on marching. Not walking, not crawling.....I need to march. You HAVE touched someone....my family thanks you and that brave, warrior child of yours.

    I cannot stop, but cannot stand....looking at the picture of her asleep in your arms. My heart is bleeding for you, but my spirit is pissed and is fighting for you as well. You are always on my heart....

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  101. First of all I want to say I am sorry about your sons relapses and, of course, initial diagnosis. If I've learned anything it's that cancer is mean and ugly and totally unprejudiced. I hate very thing about this way of life. Secondly, thank you for sharing your course of treatment and the Facebook link. I am too afraid that we might just need all this info sooner than later.
    I will pray that God would grant your family
    Mercy, strength and divine healing during your battle. I am going to check out your blog as well. Thanks again for gettin in touch with me.
    Forever grateful,
    Kate

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  102. Much love and prayers for Lucy and for all of you tonight. God is there when you need Him the most. He is there helping you now.

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  103. Kate

    I am praying constantly praying that God will bring u strength and anything else you need.
    Melanie suria

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  104. Behold I am the Lord, the God of all flesh; is anything to difficult for me? Jeremiah 32:27

    Praying!!!

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  105. I read this post yesterday and found myself thinking of it when I woke up this morning. I think you reach more people than you will ever know just by sharing your story. Maybe the sense of peace you had when you arrived was not supposed to be about anyone else. Maybe that sense of peace was God`s gift to you. You have a fantastic family, you are a fantastic mother. You deserved that sense of peace. Maybe God knew that you needed that sense of peace to re-fuel for whatever is next.

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