Day 100?

Day 100----that's how my mind, body and soul feel right now.  Once we received Lucy's diagnosis we were cautioned to prepare ourselves for good and bad days.  There was no way anyone could have prepared me for today.  I woke up on cloud nine after Lucy had such an amazing day yesterday.  I just knew that today would be even better.  I was nervous about our meeting with St. Jude, but somehow I had buffered my fear with exhilaration from last night.  Today was the reality check.  And boy was it!  It has become very clear that we are facing an uphill battle and have a long way to go. 

We actually started the day on a positive note.  Lucy woke up alert and STARVING!  The Decadron (appetite stimulant) is doing its job.  She wanted a banana, pudding, sausage and lots of Powerade.  And then.....it all started coming up.  I was so disappointed.  But she still kept asking for food.  Lots of food.  And then it would come up again.  This was the cycle all day.  The doctors had taken her off Morphine and we decided that it was the Lortab that was probably making her vomit.  So now she is on 2 anti-nausea medicines (Compazine and Zofran) and a regimen of Tylenol and Motrin.  If we are not able to manage the pain this way she will have to go back on the Morphine.  That would be a huge set-back.  She has got to be off of that before we can go home.  We have got to get a handle on this vomiting situation because Lucy is down to 28 pounds.  She came in last week at 36.  Her little body has no more pounds to spare.  I put her little size 4t panties on her tonight and they literally fell off.  It was so sad.  But I know that will get better with time.

We had our meeting with the doctors from St. Jude today.  And while they did not tell us anything we did not know, the harsh realities of what Lucy is facing became crystal clear.  She will be treated under the SJMB03 protocol, which is high dose chemotherapy and radiation.  It's going to be hell on her little body and she is going to have to fight hard.  We meet with the head of the radiation department tomorrow to make some decision about the radiation aspect of treatment.  Please pray that God would make answers crystal clear

Right now we have to focus on getting Lucy stronger.  We will be working with OT and PT to retrain her muscles in her legs and arms.  Particularly her legs.  It won't be fun for Lucy but we know that once she can walk again she will be so much happier.  It's all just part of the healing process.

I am angry today.  The numbness has worn off and I think I am finally starting to process this whole horrible nightmare.  I don't know why Lucy was chosen for this.  I don't like it.  In fact I hate it.  I don't hate God, but I hate he is allowing this to happen.  Lucy is strong.  She's a fighter.  She WILL beat this thing.  But in the meantime it is my job to be mad like a mommy, cry like a mommy and then comfort her like a mommy. 

One thing that kept playing through my head today was that although I am mad right now, I still have absolute faith that God will heal Lucy.  I will pray with that belief ( "So I tell you, whatever you ask for in prayer, believe that you have received it, and it will be yours." Mark 11:24.)  And faith will get me through.  I don't know how someone would be able to take even one breath facing this battle without faith.  When I couldn't stand today, I know God stood for me.  When I couldn't breathe today, God did it for me.  He will continue to do so and will fill in the gaps for Lucy too.  When this all settles down and Lucy is not on the forefront of everyone's minds, I ask that you please continue to pray for her each day.  We were given a 6 month treatment plan that is going to turn our lives upside down.  We will make it through with the help of family and friends, but we will need all the prayers we can get. 

My friend and college roommate Jennifer sent me an email today and reminded me of a very special Bible verse that seems appropriate to the decisions we have to make this week

"If any of you lack wisdom, let him ask of God, who gives generously to all without reproach, and it will be given unto him."  I repeated this verse many a day in college, but never had any idea it would mean to much to me today.

Some special pictures from today:

 Lucy woke up starving.  I pointed the camera to take the picture and she automatically gave me a little smile.  My children as so used to seeing that dang ol' camera in their face everyday.

 Amanda and Nelson visited.  Amanda loved on Lucy all afternoon and Nelson provided some much needed comic relief at times.

 Auntie Cheri and Grandpa.  Cheri has been here since Friday and had to leave tonight.  I cried and cried and miss her already.  I can't wait until she comes back.

 A sweet moment of Daddy holding Lucy.  This is the first time anyone has held her since Thursday morning.  She insisted on going to the big potty instead of in the bed pan.  It hurt like mad, but she toughed it out and did it.  And Daddy's heart was exploding with joy.

Lucy sat up in bed and worked a puzzle during PT.  Oh how she hates PT, but never quits--even when she is miserable.  What a fighter!

Mommy got to hold Lucy, too.  After she "walked" with PT, she had to sit up straight for 15 minutes.  This was a harder task today than yesterday, but I helped support her weight to make it a bit easier.  This was the first time I've felt as if I'd actually done something to help her get better since surgery (besides lots of hugs and kisses)

The absolute most precious moment of the day.  I don't even have words for this.

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  1. First let me say that I can't even begin to comprehend what you or your little girl is going through. I read through your posts as I was fighting back the tears and thanking God for my little boys and thinking about how tomorrow is never promised.

    You do not know me but I go to church with Carla and she has asked us to pray for you all. I have and will continue to do so as I know that our God not only hears us but is all powerful and can do as He pleases, and He will do as He pleases in as much as it is for His glory and our good according to scripture.

    I wanted to share something with you in hopes of it being an encouragement and aide. I found this particular article to be an encouragement to me a few years back and ever since, and I thought I would pass it along to you.

    The article.

    Please do keep your posts updated.

    j razz

  2. Wow. I can't hold back the tears. Just know you and your family are on my mind almost constantly through each day as you continue to fight/endure this battle. Lucy really amazes me as do you! Stay strong and know that so many love you all! God bless you today! I hope today is filled with miracles and peace! Love, Allison

  3. Kate do you recall that the Bible verse you mentioned (James 1:5) was a part of our VBS last summer? I remember teaching it to the kids!
    God has His Hands on you even now! Know that He loves you, your church loves you, and your community loves you! Thank you for sharing the events of each day no matter how good or bad. Hundreds of us are scattered throughout Tipton County(and beyond)praying for healing and waiting for the next post because we care so much about Lucy and her entire family. I especially appreciate the pictures you share because so many people are able to be a part of the journey without being a burden or overcrowding the hospital or calling too much. You can focus on Lucy and we can see God working!
    Last night I was sharing with my mom that Lucy's granddaddy is the one who built the "stable" in my boys' bedroom. I have my mind made up that when she gets better she will have to stop by and see just how talented her granddaddy is! (Not to mention she will have to get her feet muddy in the yard with the boys. She can still wear her hairbow but the mud is a must!!)
    Hope you and Erik feel God embracing you tightly today! Go Lucy Go!!

    Angie Davis

  4. Good Morning,
    I don't know you personally or your sweet Lucy.. I followed the link from Wendy Butler,I can tell you that I never stop praying for you and your family,I can't imagine the sorrow in your heart.. All I can say is the power of prayer will see you threw this nightmare you are living.. The good Lord has a plan even if we don't like it,and he will see that you prevael.. Please give Lucy a big hug for me.. tell her angels are watching out for her...

    The Rose's

  5. Kate - Words can't express my feelings for you, Lucy, & the family right now. I, too, do not understand why Lucy was chosen for this battle, but I can see how strong she truly is, and what an exceptional support system she has all around her. I share, through your updates, your sorrows & joys, and continue to keep you all in our prayers. Thank you for so graciously sharing Lucy's story, and allowing us to share it with others.

  6. Kate,

    I just wanted to share a thought with you that was shared with me a few years ago when someone I know was facing a similar situation.

    Even though you just found out about this last week God already knew. He knew long before Lucy was even thought of, and when you arrived at the hospital he was already there, when Lucy was being taken to surgery he was already in there. He's been there the whole time and he has her in his hands. He's there...just remember that. He has a plan, and even though we don't know what that plan may be, he does. This was all in the plan.

    Lucy looks like a super strong little lady. I will continue to pray for her and your entire family.

  7. ‎"Fear not. . . . When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. . . . For I am the Lord, your God . . . your Savior; . . . you are precious and honored in my sight, and . . . I love you" Isa. 43:1-4

    Praying for your sweet family.

  8. A friend just told me about your sweet Lucy & your blog. I want you to know that you have SO many people praying for your little angel. My heart breaks & I can't hold back the tears when I read what she is having to go through.

    Although I don't know how it feels as a mother to feel so helpless when your child is so sick, I do know how it feels for her sister. My little sister had cancer when she was 2 & was treated at St. Jude for 2.5 years. I have a picture of my sister & I just like that last one of your girls together. I can only imagine the plans they are making! St. Jude is the BEST place for her to be & they will take excellent care of her. I pray that God will give the doctors the knowledge they need to treat this disease. It is amazing how strong her little body is! God will pull her & your family through this!

    Love & prayers,

  9. I know what you are going through is very tough and the only way to get through it is with our wonderful Heavenly Father. It is so great to see how strong you and your family are. Praying for you and your sweet family!

  10. My heart breaks for you Kate. As I read your post with tears rolling down my cheeks all I can think of is God will not give you more than you can handle. He IS there for you and Eric and for lil Lucy. I am amazed at Lucy's strength and determination. WOW!!! She is a really strong little girl that God has blessed you with.

    In Christian Love
    Amber Turner

  11. We pray for Lucy. And just as importantly, for the rest of your family. It's a nightmare every parent fears and prays away... Was thinking of all of you this morning, when this came across (if you know Sanctus Real, you may know Matt's son has 2nd heart surgery today) - the songs Matt just posted about being parents to kids who are very sick are real and honest, and searching for God's grace in the middle of all of this; maybe you'll find some comfort in them, too.


  12. 2 Chron. 32:7-8 "Be strong and courageous, do not fear or be dismayed... For he one with us is greater than the one with them. With him is only and arm of flesh, but with us is the Lord our God to help us and to fight our battles."

    Lay it all down at His feet today. He is strong and will fight this for you. Lean on Him.. cry out to HIm... when you feel like you can't do it, He will be there holding you all.


  13. Hi Kate,

    My sister, Ashley, let me know about your situation and sent me a link to your blog. I am so sorry to hear about what you are going through and wanted to let you know that Lucy and you and your family are in my prayers.

    Kim Leon

  14. I found your blog from a prayer request on Kelly's Korner and just knew that I had to stop by. Your story touches my heart in a big way. I'm from the Memphis area, am a former St. Jude volunteer and am still an active supporter of St. Jude. I can't fathom how hard this must be for Lucy, you, and your family but I do know that your little girl is in wonderful hands- the hands of the Lord as well as those of some amazing doctors. I will definitely be praying for Lucy during this tough journey, she is obviously such a fighter!
    "For the Lord your God is living among you. He is a mighty savior. He will take delight in you with gladness. With his love, he will calm all your fears. He will rejoice over you with joyful songs." Zephaniah 3:17
    Prayers for you and yours.

  15. your girls are truly precious.

  16. so much comes up in me when I read this and see the photos. FIRST being a mom of 2 and 4 year old girls, I hurt for you because just having my 4 year old have eye surgery last year sent me into a tale spin. Quick was her healing and quick was my faith restored. But this is such a journey and I ache and BELIEVE with you.
    SECOUND- I am a sister and have 2 of the most amazing sisters in the world. So when I see that last photo, the love between your girls just leaves me speechless.

    sister. mommy. believer.

  17. Girl, I am truly amazed by your strength. Lucy gets it honest:) May the God continue to bless you both daily.