5.13.2011

Miracles


(Lucy napping in her red wagon)

Where do I even begin?  Hold on tight, this is going to be a long post.

My mind is racing as I think about what has happened over the past 48+hours.  On Tuesday I had a thriving little girl who was bouncing back nicely from 6 weeks of radiation therapy.  She was playing, riding her bike and even eating.  We were on cloud nine until around 9:30 of that night.  That's when things took a sudden turn for the worse.  By Wednesday morning things had spiraled out of control.  An emergency MRI showed what appeared to be a mini-sroke in the Thalamus of the brain.  Lucy was started on high dose steroids to treat any swelling that may be affecting the optical nerve and baby aspirin to treat a possible blood clot.  The most perplexing issue was that clinically she showed no other defeciencies, other than a vertical Nystagmus in her eyes. 

As we waited for the steriods to work, her eyes began to worsen as she continued to lose visual acuity.  As of this morning she literally could not see her hand in front of her face.  Let me just say here that she handeled all of this so well.  Erik and I were visably shaken and quite honestly scared to death.  We were watching our baby girl slowly go blind.  It was gut wrenching to say the least.  Another symptom that began to show itself was lethargy.  She had slept almost 18 of 24 hours.  Her words were beginning to slur a bit and she would sometimes have a hard time forming a thought. 

While this was going on there was a team of doctors working literally around the clock concerned about Lucy.  We received a report that emails were flying at 1:00am as doctors racked their enormously smart brains looking for an answer.  The decision for another MRI this morning was batted around 3 or 4 times, until Lucy's deterioration became too apparent to ignore.  At noon we went for the MRI.

I must stop here and give a little bit of back story.  All night and all morning, Erik and I prayed for two things.  One, for God to clearly reveal to the doctors what was going on.  Two, for the problem to be easily corrected.  Clearly the first step would be to identify the problem.  Although the docs went ahead and ordered the MRI, there was a concensus that not enough time had passed to show any variations from Wednesday's MRI.  Boy, were they wrong.

There was such an increase of swelling in the Thalamus that even to an untrained eye, I could see there was a problem.  After much deliberation it was decided that Lucy was probably suffering from a vitamin defeciency of Thiamine.  While it now seems like such a simple issue to overlook, one would never expect to see this in children.  In the Western world, Thiamine defeciency is usually only encountered in chronic alcoholics.  The doctors here only remember 2 other cases of it presenting in children.  Please note, no one can guarantee that this is the problem.  However, many great minds feel fairly confident that it is.  The way to reverse the problem is a simple antecdote.  You just replace the vitamin that is nonexsistent. 

Here's how it probably happened:  Lucy went weeks without eating.  Even though she was on TPN to receive calories, she was not receiving multi-vitamins.  MTVs are usually added to TPN, but due to a national shortage Lucy was supposed to be taking an over the counter chewable one.  In theory that is great.  But when your child refuses to eat and then vomits 15 times a day, a chewable vitamin doesn't do much good.  So basically she was in a starvation state, totally malnurished and vitamin depleted (just like I was when I was diagnosed with Celiac disease).  Here's where is gets tricky.  So, she's in this starvation state and then on Tuesday she ate watermelon and a gallon (not literally) of Whipped Cream.  Her body went into carbohydrate shock and used up an stores of Thiamine she had to process what she was eating.  The immediate onset of the vision loss was an instant reaction to this metabolic change. 

Lucy received an IV dose of Thiamine right before she went for the MRI as a shot in the dark.  No one had any clue if she needed it or not.  When Lucy woke up from her sedation she had color in her cheeks, she was responsive and....could see.  Not great, but she could make out people's faces and could tell you how many fingers you were holding up.  For those of you that did not hear from shouting "hallelujah" for miles and miles aways, let me tell you that I was. 

I wish there was some way to put into words how I feel tonight.  But I can't.  It would be like trying to describe your first kiss or the moment when you first held your baby.  I am so filled with awe, gratitude, amazement and pure bliss.  I seriously could shout from the rafters with joy.  I feel as if I am almost in shock.  I can't believe the miracles I witnessed today. 

First of all, we prayed specifically for God to reveal to the doctors what was going on.  Not only did he answer, but he used Lucy in an unlikely way to accomplish this.  Dr. D assured us that if Lucy had not deteriorated as quickly as she did, they would have likely waited until Monday or Tuesday to perform another MRI and things could have been dire by then.  An untreated Thiamine defeciency can be fatal.  While easily corrected, it can cause very unpleasant outcomes.  God used Lucy to speak to the doctors.  I was angry, scared and utterly out of my mind watching my baby lose her vision.  But if we had all not gone through 24 hours of hell we would still be here cashing rabbits and missing the mark.  Isn't is amazing how God answers our prayers? 

The other thing is that I have been asking God for a sign that the radiation was working.  While I spent my time looking for clues in music, writings, etc., all I needed to do was wait and let God work.  Just because he did not answer immediately did not mean he was not going to answer at all.  If Lucy had not gone through this horrific experience we would not have been able to see the scans from the MRI that showed the cancer being melted away.  While we still have many hurdles to jump before we can claim any victory over her cancer, it was amazing to see God's healing hand being laid upon Lucy's disease.  Be careful what you ask for.  Sometimes God just might answer your requests in ways that don't appear to be the most direct or easiest.  He gave me an aswer but tested my faith in the process.  While I would like to think I would pass the test, I feel as if my trust and hope in Him waivered so much yesterday and today that I would be quite unworthy of any prayer being answered.  But my God is greater than that.  He knows my heart and through his compassion and forgiveness I was able to receive his mercy and grace. 

****If there is anyone reading this post tonight that is not a believer, or doubts God's amazing ability to answer prayers, please read and then reread this post again.  He is answering our prayers and healing our daugther every day.  He hears the prayers you all have said for Lucy over and over and over.****

Our blessings came today through a horrible trial.  God's mercies were received through ceaseless tears. 

Listen here for these sweet words by Laura Story.  My anthem for this season in my life.  Thank you dear, sweet Lord for your mercy, your blessings and your love.  I bless your holy name and say amen, amen, amen. 

(Lucy's chariot taking her to the Opthamologist while snacking on chocolate ice cream.)

post signature

59 comments:

  1. Haha!! God is so good! Praise His Name!

    Continuing to pray and pray for this sweet girl of yours!

    <><

    ReplyDelete
  2. The only thing I can say is that I am soooooo utterly happy for you all! Praise God for answering your prayers. My prayer tonight will be to thank Him for answering you and next, for him to continue to heal sweet Lucy!

    ReplyDelete
  3. The wonderful testimony this baby is going to have!!! We pray for you every night and during the day! We love you! Melanie, Randall, Lydia, Kayla, Dalton

    ReplyDelete
  4. Kate,
    I have been on the edge all day. Each day I await your posts...I think we ALL do! All 1198 and then some, followers, friends, and prayer warriors. This, my friend, is such amazing news. This shows God's awesome power!! Lucy is in good...no, GREAT hands. God has chosen, handpicked each and everyone of those doctors to help HIM heal her. love you!

    ReplyDelete
  5. PRAISE THE LORD!!!!!!! I am so thrilled to see such a wonderful post! God is still in the miracle business! I'm still praying for Lucy's complete miracle!

    After I read your post the other night about the seriousness of Lucy's situation, immediately I thought of the song we all sang as kids:
    Our God is so big,
    so strong and so mighty,
    There's nothing our God cannot do!

    As I prayed for Lucy, I sang that song over and over even with my kids, hoping that God would reveal that about Himself through Lucy. And he did just that!

    PRAISE THE LORD!!!

    ReplyDelete
  6. That Laura Story song is one of my favorites because it gave me a whole new perspective on what we went through back in the fall with Jeff's shunt. God's blessings don't always come the way we expected but our faith let's us see them nonetheless. Prayers to you!

    ReplyDelete
  7. Hallelujah!!! Praising God for answered prayers!!! God is SO GOOD!

    Continuing to pray for your entire family.

    ReplyDelete
  8. I heard that song by Laura Story about 2 wks ago. Each time I've heard it since, I've thought of you and your family and prayed. I am praising God for Lucy's miracles!

    ReplyDelete
  9. Love how God continues to work thru such a horrible time. Thanks for sharing Lucy's story with the world. You are a very brave mama.
    Amanda

    ReplyDelete
  10. Amazing your family is so strong. I'm speechless.

    ReplyDelete
  11. A true miracle, you are absolutely right! Praise the Lord again & again & again! So happy to hear this wonderful news!!!!

    ReplyDelete
  12. Many many prayers for Lucy and your entire family! God is so very good and faithful! I just poster the song on my blog a couple of days ago! www.brianlair.blogspot.com

    Shea

    ReplyDelete
  13. I am so very happy and relieved to hear that the amazing doctors were able to figure out what was going on. I am also so happy to hear of the tumors meling away. God truly is amazing and I am glad He is healing your little girl.

    ReplyDelete
  14. wow! praise God!

    praying in south texas-
    kara

    ReplyDelete
  15. Kate,
    I am one of the many "stranger" followers of your blog. And know that my heart and prayers go out to little Lucy and all of you. This post about faith and being tested is so very true. I am so glad that you are able to look back and see the answers that God is giving you. Your faith need only be as small as a mustard seed. So remember when you fail the tests that He is giving you, it's ok. I fail them often. But the key is to keep believing and get back up and keep going.

    Your latest post reminds me so much of a story by Max Lucado. I'd like to share a link with you - I follow Max daily and his daily devotional emails can be great reminders as to how great our God is.

    http://www.maxlucado.com/static/email_archive/2010/03.19.html.

    I sure hope you have time to read this because I think you would really understand.

    Praying for you and proud of your faith!

    Shelley Patterson

    ReplyDelete
  16. I am in tears as I read this post. I just happened across your blog and so glad that I was able to read this. You have a very beautiful daughter and although I don't know you I am so very happy that your prayers have been answered. I am a cancer survivor and have been in remission for a little over a year.
    I will keep your sweet daughter Lucy in my thoughts and prayers.

    ReplyDelete
  17. Wow and wow again!! This is amazing, I'm praising God with you!!!

    ReplyDelete
  18. I'm speechless....and in tears!!! How awesome is our God!!! I have prayed countless times over the past 48 hours and could not begin to imagine how you and Erik felt. God listens, and HE IS AT WORK right here with little Lucy!!!! Keep fighting pretty girl. Everyone, and I mean everyone, is on your side, whether we have met you or not!!!

    GO LUCY GO!!

    ReplyDelete
  19. Praise God!!!! My husband and I have been praying and sharing Lucy's story. Our God is wonderful. I am overjoyed and couldn't begin to imagine how ecstatic you are!

    ReplyDelete
  20. Praise the Lord! I can't understand not believing in Him after reading this post.

    ReplyDelete
  21. I have been thinking of her - so happy to read this amazing update today!!

    ReplyDelete
  22. Kate - I've been following your blog for a few months now. I pray & think about you & your family all the time. I volunteered yesterday at my daughters school trike a thon to raise money for St. Judes. I told your story to so many people. I don't even have the words to describe the compassion I feel for you. Stay strong & hold tight to your beliefs.

    ReplyDelete
  23. wow! wow! wow! so happy your prayers were answered, and lucy's sight (and yours!!!) were restored! continuing to pray for your sweet little one!
    laura henson
    tupelo, ms

    ReplyDelete
  24. Kate,

    Thank you so much for allowing us to journey through this in prayer along with you. It must be difficult to be so open to everyone, but it is such a blessing to read about God's hand at work. We're continuing to pray and believe that Lucy is on her road to recovery!

    ReplyDelete
  25. Our prayers are definitely being answered!! God is awesome!!

    ReplyDelete
  26. Thanking God for miracles - hallelujah!

    ReplyDelete
  27. oh Kate...my heart has ached for you all the last few days. I can't imagine the fear Lucy was experiencing, and the torment you, erik, and the rest of your family was experiencing. I seriously can't imagine. I just told someone yesterday that I was trying to put myself in your shoes and imagine how I could handle something like that...and I said I think I would have been in the halls screaming!!!!
    I was overjoyed to hear the good news last night. We've been praying hard for those beautiful eyes of hers. God is not only proving Himself to you, but to all that are witnessing your life. Love you friend.

    ReplyDelete
  28. I've been clicking on your blog so often for an update. I am thankful and hopeful. Wonderful news... and prayers continue for all of you and especially for Lucy.

    p.s. Your story sounds like one of the more dramatic episodes of House. Wow!!

    ReplyDelete
  29. Hi Lucy and Family,
    I was SO happy to hear that the root of the problem was found, and that Lucy is bouncing back from this trial. I just wanted to let you know about another family going through a shockingly similar journey as Lucy is. They are the McRae family, and their daughter Kate is battling cancer as well. She has gone through RT to her spine and brain, I believe. I was hoping that you could draw strength from this family and allow them to draw strength from you. Always praying for Lucy,
    Maisie

    ReplyDelete
  30. Crying tears of joy and I don't even know you. What a beautiful story Our God is writing for your little Lucy. Praise The Lord!!!!!!

    ReplyDelete
  31. What an amazing amazing story and proof of our loving Lord. Continuing to pray for Lucy!

    ReplyDelete
  32. I am in awe of your strength and faith! Tears of joy are in my eyes and praise for God in answered prayers.
    "What time I am afraid, I will trust in Thee." Psalm 56:3

    ReplyDelete
  33. Every non-believer should read this. Every believer should memorize. What an incredible, incredible story of God at work.

    ReplyDelete
  34. Footprints in the Sand

    "One night I had a dream--
    I dreamed I was walking along the beach with the Lord
    and across the sky flashed scenes from my life.
    For each scene I noticed two sets of footprints,
    one belonged to me and the other to the Lord.
    When the last scene of my life flashed before me,
    I looked back at the footprints in the sand.
    I noticed that many times along the path of my life,
    there was only one set of footprints.
    I also noticed that it happened at the very lowest
    and saddest times in my life.
    This really bothered me and I questioned the Lord about it.
    "Lord, you said that once I decided to follow you,
    you would walk with me all the way,
    but I have noticed that during the most troublesome times in my life
    there is only one set of footprints.
    "I don't understand why in times when I needed you most,
    you should leave me."
    The Lord replied, "My precious, precious child,
    I love you and I would never, never leave you
    during your times of trial and suffering.
    "When you saw only one set of footprints,
    it was then that I carried you."

    So thankful to hear that Lucy is receiving the treatment she needs and is improving. This poem always brings me comfort. Hopefully it does the same for you.

    ReplyDelete
  35. Everytime I here these songs I think of Lucy and your family.

    Fight Another Day: Addison Road

    Beautiful, Beautiful: Francesca Battistelli

    ReplyDelete
  36. Footprints in the Sand

    "One night I had a dream--
    I dreamed I was walking along the beach with the Lord
    and across the sky flashed scenes from my life.
    For each scene I noticed two sets of footprints,
    one belonged to me and the other to the Lord.
    When the last scene of my life flashed before me,
    I looked back at the footprints in the sand.
    I noticed that many times along the path of my life,
    there was only one set of footprints.
    I also noticed that it happened at the very lowest
    and saddest times in my life.
    This really bothered me and I questioned the Lord about it.
    "Lord, you said that once I decided to follow you,
    you would walk with me all the way,
    but I have noticed that during the most troublesome times in my life
    there is only one set of footprints.
    "I don't understand why in times when I needed you most,
    you should leave me."
    The Lord replied, "My precious, precious child,
    I love you and I would never, never leave you
    during your times of trial and suffering.
    "When you saw only one set of footprints,
    it was then that I carried you."

    So thankful to hear that Lucy is improving, and praying that she continues to do so. This poem always brings me comfort, hopefully it can do the same for you.

    Darby (Prince Edward Island, Canada)

    ReplyDelete
  37. What a wonderful post!! I don't know your family but have been following your blog and praying for your family. My 5 year old daughter had a Trike-A-Thon for St. Jude at her preschool yesterday. After telling her about Lucy this morning, she said that she hopes the money that she raised will help Lucy feel better soon. She also asked if she could pray for her too. Praise be to God!

    ReplyDelete
  38. Praising God with you today....this amazing miracle speaks right to my heart. I often wonder, really, does prayer change anything? Does Jesus still heal the way he did so many years ago? Yes...I see that he still does. I will continue to keep your family in my prayers and thoughts! God bless and be with you today!

    Sandra

    ReplyDelete
  39. I though about that Friday and actually told a patient about Lucy and what was happening. I actually told them the same thing you said...I hate that you guys had to experience that but without that little "bump" in the road you wouldn't know that the Cancer is better. God is so awesome. We continue to pray daily for you guys and we are believing in our prayers to be answered. One of my favorite patients (Laura will remember her) Ms. Wilma Lindsey would say "This is not Lucy's disease. Its God's. Give it to him and let him do the work." I am praising God for this miracle!

    ReplyDelete
  40. Kate~ I love you my friend. God is working. As I fasted for Lucy yesterday each time I thought of food I said NO- God I know you are working in the life of this baby girl.
    As I sat last night and read your post to my entire family we cried. We shouted and we praised God all together. Thank you for allowing us to go on your journey with you. My 12 yr old posted her hearts cry for Lucy on her face book page.
    Praise God from where ALL Blessings come from.
    I love you my friend!!

    ReplyDelete
  41. this is amazing and humbling. I will continue to pray for you and your family.

    ReplyDelete
  42. Praise God from whom all blessings flow! Thanks be to God for giving doctors the wisdom and knowledge to do what's best for your sweet baby girl.

    ReplyDelete
  43. God bless your family! All three of your kids are so beautiful! I will definitely be saying a prayer for Lucy. As a mother, I can't imagine what you're going through, but soon when everything's back to normal and Lucy is 100% healthy again, you will have this blog to document the journey and see how far she's come. I know she'll be grateful for it too when she's older.

    ReplyDelete
  44. Hey Kate! You dont know me but i read your blog almost daily. Let me just say that this blog inspires me BIG TIME! I have a four year old daughter and cant even begin to imagine what you go through as a mother each day watching your sweet Lucy suffer! I hope this doesnt sound strange but as i opened a prayer book I have at home the other day it opened up to a prayer to saint Lucy! The crazy thing is she is the patron saint of eye ailments! I just wanted to share that with you and tell you that my family will be praying for your family and that God will continue to heal your precious little Lucy! You and your family AMAZE me with your strength and your perseverence! Your faith is to be admired and it shines so brightly through this blog! You have and continue to touch so many lives and you should be very proud! What a BEAUTIFUL and SPECIAL family you are raising! God Bless You! Go Lucy Go!

    ReplyDelete
  45. Praising the Lord with you this afternoon!!! God's timeing is always perfect...He is never early and He is never late!! Continuing to storm the gates of heaven for your family!!!

    ReplyDelete
  46. God I do know that you hear these prayers and requests being made now for Lucy to be restored and I pray now Lord that you will continue to bless her and to show her you are God and you are Still in Control of her situation, and as you have promised you will never leave nor forsake us especially in our times of need. Per Chris Tomlins lyric Our God is Greater, Our God Is Stronger, Our God is Higher than any other, Our God, I ask these things Believing in Your Precious and Holy Name…Amen...TYL

    ReplyDelete
  47. PRaising God! I am beyond thrilled. As my eyes filled with tears and I had goosebumps, the reminder of God's goodness is just so mind boggling. Rejoicing rejoicing and praising Him for his miraculous ways

    ReplyDelete
  48. Kate, This reminded me of the children song, "God is so good, God is so good, god is so good, He's so good to me...He answers prayers, He answers prayers, He answers prayers, He's so good to me!"
    What an amazing testimony your entire family will have at the end of this trial! You are already using this trial for the Lord and I know will continue doing so! People's lives are being changed (including mine) because God is using your family! He has chosen you for this specific time and trial to spread His news! (I'm sure you would rather have passed on this mission from God(-:) but here you are showing God's glory!! We are praying...
    Ella (my 4 yr old) wanted to say Hi to Lucy..."We are praying for you to feel better Lucy!"
    Just wanted to encourage you that we pray for Lucy daily!!

    ReplyDelete
  49. Praising God that He has answered your prayers and is restoring Lucy's sight and wiping out the cancer. I LOVE that song by Laura Story. I posted it on my blog a couple of weeks ago.
    Yesterday I heard another song that I've grown to love and thought of you. It's called Give You Peace by Echoing Angels. Look it up and listen to it on youtube when you get a chance...you'll be blown away! Praying for you everyday... God is Good!

    ReplyDelete
  50. God is good! I sat in my bed the other night saying a prayer for your daughter. I think of Lucy everyday. I think of you as a mother everyday. Bless you and your sweet family!
    melissa from s.c.

    ReplyDelete
  51. Even though we have never spoken a word, met on a street corner, exchanged smiles or even shaken hands.....your words and your story touched me so deeply than I would have ever imagined. My heart goes out to you and I want to say "Thank you" for the reminder on just how good our God is. It's easy to blame him and forget his name when we are being tested. I will continue to have you and your family in my thoughts and prayers for a speedy recovery. God Bless!

    ReplyDelete
  52. I am overwhelmed with joy and admiration for how great and AWESOME is OUR GOD! What a wonderful miracle and what a wonderful gift to you! I am soo happy and soo thankful that we serve a mighty God!

    ReplyDelete
  53. Praise the LORD!! Such wonderful miracles! It reminds me of our own journey through our Sarah's cancer, when God came through in ways like that SO MANY TIMES. He truly, truly does do miracles and answer prayers today. I wish everyone could just believe!

    ReplyDelete
  54. I am so happy and relieved beyond words! All I could think of when I read this WONDERFUL news, was "Ask, and You shall receive"! I am blown away, that every single thing I prayed for, (along with you, and everyone else), was answered. Like you said, if there is anyone out there that still doesn't believe prayers can work, all they need to do is read your entry. Thank you Lord, for not only hearing our prayers for Lucy, but for guiding the doctors to restore her eye sight. My heart is smiling with this news. Love to sweet Lucy, and hugs to all. Please give Lucy a big squeeze from this Grandmother! Lucy has touched so many hearts, and is loved by many of us, she will never meet.
    Sending Hugs!
    A Mom-Mom in NJ

    ReplyDelete
  55. God Bless you, Erik, and Lucy you are ALL so strong we will continue to pray for your family!!

    ReplyDelete
  56. Praise god! We read your blog and pray for Lucy everyday!!

    ReplyDelete
  57. I think I held my breath reading this entire post...I am so happy that there were answers for you and for your Lucy...I am in awe of her courage and strength...she is truly blessed to have such amazing parents in her life.
    Continuing to keep all of you in my thoughts...
    Stay well
    Kelly

    ReplyDelete
  58. I've been reading your blog but not commenting. I just don't even know what to say sometimes. You inspire me so much with your faith and honest words. I have cried so many tears for all of you. I can't imagine your fear over Lucy's vision problem. Sooooo happy she is winning this fight on all fronts!!!! She is such a fighter! Thank you for sharing and I will continue praying!!

    ReplyDelete