Moving on Up

Or at least over.  Over the interstate, that is.  For those of your familiar with downtown Memphis, Le Bonheur and St. Jude are basically separated by the 1-40 Interstate.  As I type now from Lucy's room, I can see the cars speeding along on their way to or from Arkansas.  I wish I were with them.  Riding with my family on our way home from a Tiger Basketball game or something fun like that.  But I'm not.  I'm sitting in the hospital bed (Lucy refuses to get in the bed and will only sleep on the couch) listening to the hum of the IV pump and typing in the dark with only the computer screen as my light. 

We are slowly getting settled here and I have to tell you I am desperately homesick for the 7th floor at Le Bonheur.  I cried off and on yesterday just thinking about the "family" that we left behind.  I am totally out of my comfort zone here.  Going from appointment to appointment today, I roamed the halls of this big campus feeling confused, alone, angry and frustrated.  I wanted so badly to be here but now that I am I realize there is no turning back.  No escape until the long journey is over.  I'm still mad that Lucy has cancer.  It does not make any sense and I can promise you that after 22 days its not any easier to say or accept.  I should be at home running the last load of dishes right now, sitting down to watch a Tivo'd show and then slipping into bed for a restful night's sleep before I get the girls up for school.  No one or no thing could have prepared me for where I am now. 

Lucy has been riding a roller coaster of emotions as well. For many days I've been telling her that once we left Le Bonheur we would be going somewhere new.  I never told her it was a hospital.  Well, when it was time to transport yesterday Lucy was in the best mood.  She even wanted to open birthday presents.  Her room had been filled with gifts since her birthday and she refused to open even one! 

Her mood totally reverted back to angry once she realized that the "new place" was just another hospital.  She was so mad.  It broke my heart into a million pieces.  She screamed off and on all night, at one point even having a true psychosis meltdown.  It scared both Erik and I really badly.  The docs are weening her off of the Dex (steroids)---THANK GOODNESS!!!!  It is horrible watching her turn into a monster that I don't even recognize.  But she does still say I love you from time to time and that makes it all worth while. 

We received our schedule for the next few days.  It is jammed packed with appointments.  Everything from social work to clergy to radiology to dentist.  St. Jude does not leave a stone unturned and let me tell you that they are a well-oiled machine.  Everyone is in constant communication and all the employees have bought into the notion that they are here for the sole purpose of making children's lives easier. 

Today we had a CT scan and radiation simulation under anesthesia to prepare for radiation therapy hopefully starting next Tuesday.  If all goes well, Lucy will begin her journey to healing early next week.  While she was having her procedure Erik and I met with Dr. K who is the head of the radiology department.  Once again we had to hear the pros, cons and potential side effects of radiation.  The short of if is that Lucy does not have an option.  If she wants to beat this thing she will have to endure 6 weeks of RT treatments.  There are potential side effects of radiation and we ask that you pray specifically for mild effects and protection for her body. After her Sim, she had dental Xrays and a dental consult visit.

Erik's parents brought Ella and Jack to visit this afternoon and Lucy's spirits soared.  I did not get pics of Ella today because I could not find my camera until after she left with my mom to head back for church.  I did capture some sweet moments between Lucy and Jack though.  She was devastated when he left.  This was just one more reminder that we have got to get Lucy home so that she can heal with her family.  It is more evident to me now than it ever was before.

Please pray that we will all begin to slowly move from mourning Lucy's diagnosis to kicking it's butt!  With God all things are possible and we know He is on our side.  St. Jude built its walls with a foundation of hope.  My Jesus is my foundation of hope.  On Christ the Solid Rock I stand all over ground is sinking sand.  Everyday Lucy, Erik and I will be walking hand in hand with God on some mighty firm ground bathed in prayer by the thousands of people world wide who have heeded God's calling to pray for us.  Thank you all for being obedient and answering the call. 

A little girl's life will never be the same and neither will her parent's.  Last night and tonight I sat opening 2 huge bags of mail from friends and strangers alike, all praying for Lucy.  I mean, seriously!  I sat with my mouth opened reading letter after letter and opening will wishes and gifts for Lucy--my sweet child that most of you have never met.  I have a renewed confidence that there are a lot of great Christians out there.  I don't know why you have, but I appreciate you letting my family into your life.  What a great honor it is to be walking this road with so many. 

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  1. Kate..
    Your sweet family...Lucy..My family and I we are praying...she is so beautiful..and has her entire life ahead of her...I can't imagine how hard this has to be..praying..bless you and your family..

  2. Hi Kate,

    Oh I am so sad for this emotional roller coaster you are on. I know this is so hard for you and your family and poor sweet Lucy. I am praying and praying for you all and have been most of today. There is another little girl with cancer, Ansley, and her and Lucy have been in my prayers much today.

    Try to make her room as homey as possible. I am sure that will help.

    Praying and praying,

  3. My Anna and I are praying for little Lucy. You do not know us but we love you guys and are waiting for Lucy to get to recover at home. Trust, believe, and above all pray and have faith. I have nick named Lucy "Lucy Ducy" don't know but it has stuck. My Anna is with my mother tonight and she is only 7 but wanted to know how Lucy was when she called to tell me good night. Now my parents are praying for our Lucy Ducy.

  4. Kate, I really don't know what to say, but I believe with all my heart that next year on her birthday Lucy will be running freely, happy, HEALTHY and whole. Her blonde hair will be bouncing on her shoulders and her blue eyes clear and full of life.

    Lucy will grow to be a woman of great resilence and strengh, not only for what she has overcome but from the example you have set for her during this adversity. Ella and Jack as well.

    Demons tremble in fear when that child turns over in bed because she is highly favored and chosen by God for a divine purpose. Her life has a calling far beyond anything we can fathom and all the powers of hell can't stop the Lord from using her for his glory.

    The world is watching this child. Not just those standing in faith with you, but those in doubt. And God will prevail. Like he did with Elijah on Mt. Caramel with Baal, God will display to the world His power and healing in sweet Lucy.

    I can't wait...GO LUCY GO!!!

  5. I too have been praying for your little girl! I have been following the little Boy Ty that Kelly's Corner also mentioned in the same post about Lucy! Once I saw that She had requested Prayer for Ty, Of course I had to check out her post. Then I Came across, Lucy! I read your blog every time you post a new post! I am praying for your little girl! Your a Strong Momma. I too have a 5 year old little girl, Calleigh mostly spelled (Callie), But she turned 5 in February and I cant help but think How stressed, Worried, Scared, you are all at the same time, Yet still have Faith in our Lord! He is so Amazing! I know he hears all of the prayers sent up for her! It does break my heart for you guys! I can't imagine, But I Know that My God is the Awesome God that you speak to daily for her, I know he is Awesome and Can do such Wonderful things!

    Stay Strong and Have complete Faith on this, She will win with Jesus by her side! Many Prayers, Love and thoughts from the Skarda family!

    All the Best & God Bless,
    Candace Skarda

  6. I check in and read everyday even though I don't comment all the time. I was in downtown Memphis last week and I drove by the church with the "PRAY" sign in the yard and said a prayer for Lucy. I know what being mad feels like as a parent. I question my daughter's craniosynostosis diagnosis everyday. I don't know why and probably never will but our God is bigger and stronger than any diagnosis. Your family is in my prayers daily. Thank you for sharing your story.

  7. I was so excited to see Lucy smiling today!!!! I am sure you find those moments such a blessing!

  8. Kate,
    The longest prayer chain has been started and has reached all the way down to West Palm Beach, FL!! I have a son who's 10 & a daughter who just turned 6. Your beautiful Lucy reminds me of my little Emily with dirty feet and a big bow in her hair! ;). I check your updates daily and now even Emily prays for her new friend Lucy, & they've never even met!
    I want to tell you that you have renewed my sense of faith in God. I know that this journey seems so unending & unbearable. I know you question, "why?"
    But please know that your faith & your daughter's strength through it all has touched sooo many lives!! I have come so much closer to not only God through your story but my own family as well!
    Little Lucy is in our prayers nonstop!

  9. Kate,
    I am so relieved that Lucy is finally at St. Jude! Don't get me wrong, I REALLY wish she were home playing with Jack and Ella!!
    I am not lying when I say that I honestly wake up praying for you guys and I go to bed praying. Most of the time when you tell us to pray for something specific, we (me, Bo, and Jon Harris) join together as a family and pray for those things boldly! Thank you for posting specific requests!
    I am so glad to see Lucy's sweet smile today! (-Please let me know when you are ready for me and I will be there YESTERDAY!:))
    Love you guys,

  10. Can you send me the address to send Lucy something....Your family is so precious.

    or you can email me at annah99@aol.com

    Teresa P

    Shreveport, La

  11. When are sitting all alone in mucus room just remember you aren't really alone. I do not know your family personnel but my family thinks of yours daily. As I drove through Covington the other day(going to get go Lucy go shirts for the office I work at) I was so overwhelmed to see all the pink and purple ribbons all over the city. There are many people holding your hand as you hold lucys god will give you the strength you need to deal with this. There will be brighter days ahead.

  12. That picture of all of you is darling. I'm just another stranger who found your blog, but I'm keeping you guys in my prayers. I will pray tonight that she can start her radiation on time and that you will settle into your new "home" as quickly as possible. I've spent lots of time in hospitals with my mom, who has several medical conditions and is in a wheelchair, but never as long as you've been in the hospital with Lucy at one time. I can't imagine. Keep the faith and stay strong! You have many people praying hard for your sweet baby girl. She is just a little doll.

  13. Another stranger here from Baltimore MD PRAYING for Lucy with every fiber of my being. I've been following this horrible journey that God has put in your path. Nothing I can say will change it - but I hope it gives you some peace knowing so many are praying for your sweet daughter. I hope the luck of the Irish will be with you all today!

  14. We love you and your family, even though we've never met. God will truly turn this disease and heartache into a ministry and only for the good for you and those around you. Keep your chin up and keep your focus on the One who can heal her. May God strengthen and bless you on a daily basis. With love and encouragement to you and little Lucy.

  15. Praying for your little girl and family is the least we can do!

  16. I also would like the address at st jude to send lucy a card etc! My email is sunnylady8487@hotmail.com, I pray everyday for lucy and your family God bless!

  17. I am humbled by your faith. I know God will do great things thru you and your family, especially sweet Lucy. Praying for you during this difficult time and asking our God, the Ultimate Physician, to place his hand of healing on your baby girl.

  18. Hi. My name is Sunny. I grew up in Maryville, and knew Erik from there. A mutual friend posted your blog on facebook, and honestly after reading the first post (the one with the wrong diagnosis) I couldn't breathe. Lucy and your family have had my heart since then. Praying for you all every day. One of my triplets, Braylen saw me reading the blog and he now prays for Lucy too. My triplets are 5. I cannot imagine what you are going through. CAN.NOT. I do know that I will never understand the suffering of innocent children. It is truly the hardest thing for me to grasp on this side of eternity. It makes me angry & sad. I want to encourage you. God can handle your anger, no matter how ugly it feels. Let Him have it. Go for it. It's the best thing you can do. Just unload & do it often. You do not have to have it all together. Losing it doesn't mean a lack of faith. God knows we are just clay. He knows that. So feel like you have to hold it together. You just can't possibly expect yourself to be without fear or anger during this time. Of course you are trusting God. If you weren't, you wouldn't have gotten out of bed this morning. So, I guess I want to say, giv yourself a break. Grant yourself a large measure of grace.

    I am specifically praying for Lucy's disposition and her emotional well-being. She must be so sad, and steroids make my kids raging lunatics, so I cannot imagine adding that to mix for her. Poor, sweet baby.

    I saw your post about her hair....Maybe you can make it fun with different colored wigs. Let her pick her color. Purple hair one day. Green another. To me its more fun than hats or bandanas.Just a thought. Added your blog to mine asking for prayers for Lucy. Hang in there.

  19. Praying for sweet Lucy and the rest of the family!

    The Willis'
    Tupelo, MS

  20. Praying for Lucy every night when to go sleep.

  21. I am praying for Lucy and God's healing hand.

  22. Praying for Lucy and the rest of your beautiful family.