4.12.2011

Right Now

(I started writing this today while Lucy was waiting on RT to begin.  And well, since my mood has not really changed, I figured I would finish it)

At the moment...I feel crappy.  Having a pity party.  I hate being at St. Jude.  I hate having a child with cancer.  I hate that her hair fell out last night.  I hate that I am having to shuffle kids around tonight so that I don't disappoint my oldest daughter by not showing up to her first softball game.

I want to be at home holding Jack, getting ready to pick up Lucy from the best preschool in the world where she should have been playing all day with her friends.  We should be deciding where we want to talk Daddy into taking us for lunch.  Not sitting with a hollow gut because my baby can't eat and I refuse to eat in front of her.  At the moment I could punch a hole in the wall I am so angry.  Lucy nor I signed up for this.  We don't want it, so if someone would please come take this burden away from us it would be greatly appreciated. 

I convinced Erik that I could come here alone today.  And honestly, I should be able to.  But I guess I was wrong again.  Dang!  Will it ever get easier?  I guess in a way I don't want it to.  I want to suffer through the next 5 months and then get on with our lives.  I do not want this hospital to become a part of our lives like it has for so many. 

Yesterday my lifelong, dear friend Sara came with me with and Lucy.  She is such a rock and always has been.  Little did I know she would end up being the perfect one to be with me yesterday as I watched all of my baby girl's hair fall out.  She allowed me to cry and was a great comfort.  I knew it was coming out soon, as she was shedding really badly.  Jack had even managed to pull a huge amount out on Sunday when he got a little too close.  It happened rather horrifically for me and rather peaceful for Lulu. 

When I was called back into the recovery room after her RT, I sat down beside her bed and began stroking her head like I usually do comforting her as she lay still asleep.  In one fell swoop the whole top portion of her hair fell out.  It was like she had been scalped.  My tears began to flow and didn't stop for a while.  So as she slept I ran my fingers through her hair, taking huge amounts with each stroke of my hand.  I figured I was going to have to shave it when we got home anyway so I might as well feel it for as long as I could.  It was agonizing and peaceful all at the same time.  It was as if I was able to lay to rest that chapter in this horror story.

I hate to share this picture because it was taken with my phone and it does not do this beautiful girl justice.  I have misplaced my camera uploading cord and am in a near panic state.  I have to finish this and get to bed, but I will be replacing it ASAP tomorrow.  So for now these grainy pictures will have to do. 

What you are not seeing in this picture is the sparkle of her crystal blue eyes.  She might not have hair, but she could outshine the sun with those eyes.  Oh, those eyes. 

And even since this picture was taken this morning, most of the remaining spots of hair have fallen out.  One more day and there will be nothing left at all.  It's just as well, really.  Having the hair fall out was inevitable.  I know that.  But I think it is another one of those gut check moments when you realize just what your child is dealing with.  For a while there she didn't look sick.  There were no constant reminders, nothing staring you in the face.  Now we have this to remind us everyday. 

I'm constantly reminding myself, just as I did at lunch with Sara on Monday that it could be so much worse.  We sat together in the cafeteria and I literally almost threw up thinking about all the what-could-have-beens.  Even some of the kids we were on the 7th floor will be left to deal with greater problems in the future, some life long handicaps.  Lucy may have a horrible cancer, but she is in the minority of children who have it and don't have many other challenges to overcome.  I have to be reminded of just how fortunate we are sometimes, but being at St. Jude everyday is a pretty good refresher course.  It's hard to not count your blessing as you walk through that place. 

Tomorrow is a big day for Lucy.  She is supposed to get her leg/knee brace.  She is so excited and so are we.  I just know she is going to make huge strides with her walking once she gets it.  She needs the physical support it will provide and the psychological.  She can walk, she just has to be pushed a little harder than she has been so far.  Between getting her brace and only being on TPN for 14 hours a day now she is going to love her new-found freedom.  I think I'm going to like it, too!

I'm praying that with the brace, God will allow that leg to start working properly and Lucy will be able to walk across the stage at her preschool graduation unassisted.  That is the goal we have set.  Just another milestone to reach in her journey to beat this cancer.

God is good.


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55 comments:

  1. you are right..she is beautiful...God gave her an extra beautiful face in case she had to face something as horrific as this. I continue to have a great "gut feeling" about her full recovery and pray every day.

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  2. Sweet Lucy you are beautiful!!

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  3. She is a full cup of sugar! Every bit as beautiful as she was the day before. Blessings!!

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  4. I have a VP shunt for hydrocephaly. In the fall of 2009, I was 17 and I ended up having to have 6 brain surgeries in 2 months for complications with the shunt. At first, I was desperate to keep my hair. Because there were some breaks in the surgeries, I would go to my hairdresser begging her to save as much as she could and still make me look normal. By the 5th surgery, I just didn't care anymore. It took going through all of that to show me that hair means NOTHING. Your precious Lucy is still as beautiful as ever. You all are in my prayers.

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  5. Lucy is gorgeous with or without hair. She is so beautiful that she should be a model! When I look at Lucy, I think of my daughter's best friend in preschool who had cancer. My daughter, Kristin, is 33 years old now. Kristin's friend, Katie, wore a pink baseball cap after losing her hair. After her hair came back in, she still wore her pink hat. She, like Lucy, was the cutest preschooler! I am keeping both of you in my daily thoughts and prayers. I live in GA but wish I lived in Tennessee so that I could help you out with the kids. Just remember, if I can't be there physically, I am there spiritually. God is good and he is listening to our prayers!!!!!!

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  6. Kate,
    My heart has ached for you today thinking about sweet Lucy losing her hair and how startling it must have been eventhough it was expected. You are a mother going through what no mother should have to, a family enduring things no family should endure. I pray each day that you all have strength of body, mind and heart. I hope you and Erik and all those sweet babies have a peaceful night filled with sweet dreams.
    Tammy Oliver

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  7. Hey Lucy you are beautiful! Not just beautiful but breathtaking!!!!! I can't wait to see pictures of you walking across that stage!!!!! GO LUCY GO!!!!!!!!!

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  8. What a beautiful head! Prayers continue for you all.

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  9. Lucy you are beautiful. The old adage that I often mention to our "bald headed" preacher-- "Bald is Beautiful" Lucy Hannah Krull you just took that to an entire new meaning for me. Love you sweet girl and your sweet momma!

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  10. From the moment I started to follow your journey, I thought to myself, Lucy is just absolutely gorgeous...with hair or not. Period. Just beautiful. And I am just forever grateful and thankful for a God that created us renewable, everyday. EVERY day we can start fresh. That's amazing to me. AND, when Lucy wins this battle, she will again have hair...it will be renewed. God is good. Praying for you everyday.

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  11. I'm mad for you. It's not fair. I'm praying for you and Lucy tonight.
    And Lucy is cute as can be with or without hair.

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  12. She's going to beat this! I just know it! Praying for all of you!

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  13. You are right! Lucy looks so beautiful!! There is just a glow in her face and a shine in her eyes. Thank you for sharing your new goal about Lucy walking at her preschool graduation. I will add that to my prayer list so I can pray for that specifically.

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  14. Look at Lucy! She is absolutely beautiful! I continue to pray for you & your family each and every day.

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  15. My two year old just asked me to pray for Lucy and ask Jesus to make her better. So that's just what we did. We are praying He makes all her "owies" better very soon.

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  16. Yep, she is beautiful but we all knew that before - hair or no hair. Continuing to pray for full recovery every day!

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  17. Without her hair - her smile seems more beautiful and her eyes seem to twinkle with magic! Before long she will have a new "sprinkling of fairy dust" on her head!

    Praying that God will give you the strength to endure... Hang in there girl!

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  18. Beautiful Lucy! She is 360 degrees of beautiful, sweet little Lucy! I just said my BIG nightly "specific" prayer for her and for YOU my dear friend. I wish I could just make it all go away for you, but am faithful and hopeful that God is going to show us just how miraculous He is! Love you tons.

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  19. She is BEAUTIFUL!!! Praying for the brace, her leg and her preschool graduation!!!! PRAYING.

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  20. Lucy, you are beautiful!!!!!!!

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  21. She is a beautiful little girl with a beautiful Mother.

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  22. Lucy's smile just seems to brighten up a room! and I don't even know her! She is absolutely gorgeous, and I am amazed at her smiling face in your posts.
    I am praying for your family!
    (ps... it's ok to be angry, please don't ever beat yourself up for how you feel)

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  23. The strenght of you shines through Lucy. Praying for your family.

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  24. Oh Kate, I just wish there was something we could all do to make this better for you, but there isn't. Just know that we all cry with you and pray for you all every single day. I hope you have a better day tomorrow. Try to eat and take care of yourself as much as possible. You need your strength. Love, hugs, and prayers! Donna Turnage

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  25. Oh Kate....my heart aches for you. Lucy is and always will be beautiful. Hang in there!!!

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  26. She is absolutely beautiful!!!

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  27. Having no hair just shows off that sweet beautiful face even more! You guys are always in our prayers. PLEASE let me know if you need anything, including any questions or physical therapy advice. I am sure this brace will give her the confidence and support she will need. Love you! Amy

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  28. Kate you were right. Who cares about that grainy picture. She is beautiful! You talk about her eyes and how blue they are...well that is still what everyone will see...those gorgeous blue eyes and that beautiful smile. Hang in there! We are continuing to pray for all of you guys!

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  29. She's beautiful and so are you mom. Her smile melts my heart. Praying for you and your sweet family. We don't know each other but I've been blessed by you and your words. I pray that the next 5 months fly by quickly with much success.

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  30. She is just so beautiful. I can't help but smile back at her pictures when I see her smiling in them.

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  31. Your sweet baby came into this world bald and beautiful, just as she is today. Her smiles make my day. Thank you, again, for sharing your lives. You gave me a much-needed reality check this morning. Take care.

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  32. This can't be easy. Sounds like you're doing the best you can do. I'm glad you have such a big prayer team! Go Lucy Go!

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  33. Oh, she is so beautiful!!!! She looks so much more like her baby brother now :)
    Hugs and prayers to all of you!!

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  34. We continue to pray for your entire family! And we all think Lucy is the most beautiful little girl ever!

    The Quarles Family
    David, Lori and Wilson

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  35. She is beautiful!!!!!! Praying for ya'll daily... saying extra prayers that Lucy can walk across that stage as well! Hugs and lots of love from Kentucky!

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  36. You have a beautiful girl! You are so strong, I know you will all make it through this! Praying for you everyday!

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  37. She is so beautiful Kate. So many prayers are going strong to you, Lucy and your family.

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  38. Still praying for you and your family. I admire you and most definitely Lucy. She is so much stronger than I would ever be. Lots of love and hugs.
    Steph

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  39. She is absolutely beautiful, and yay for the brace!!!! Continuously praying for all of you!

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  40. Kate, I can't imagine how this is for you, but you are strong- you need to give yourself credit! I think it's great that you don't find this easy, or "normal", it never should be, by feeling this way, you are staying grounded! Keep doing what you're doing- it's working because the way it sounds, Lucy is taking it in stride and not as upset as she could be!
    I wanted to share a little something with you that I feel is pretty neat. Two years ago, we planted a couple Maple trees in our back yard. The smaller of the two was very scrawny, and with every strong wind, I thought we'd lose it, but she remained strong, and now seems to be stronger than the bigger one. We "gave" each of our daughters a tree, and told them they could name their tree. Kylie my oldest got the taller one and named her Rosemary. Kaylee, my youngest got the smaller one, and named her Lucy. I didn't think much of it until yesterday when we were out back and I pointed out the them how strong and full Lucy had become. They both looked at me at the same time, mouth's open wide and said "LUCY!" "She's our lucky Lucy tree mom!" So, as I hoped that our Lucy tree would grow stronger, I also pray that your beautifuly Lucy will continue with her strength. She now has a "lucky tree" in our backyard.
    Blessings,
    Toni

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  41. i have been following your story through a friend of mines blog. but have yet to post anything. there are no words i'm sure that anyone can say. please know that me and my family are praying for sweet lucy. i think she looks absolutely beautiful. hair or no hair. and that smile. it reaches her eyes and i'm sure reaches right to your heart. my little boy caleb is 5 and he has been praying for her as well. but right now i am praying for strength for you as i cannot imagine the immense pain you must be going through. i pray he would give you strength and lift you up. and through it all he would wrap his arms around you.
    Amanda

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  42. Oh Lu you're a beauty, with or without hair. You're silly little grin and true-blue eyes make people forget to see anything else anyway :)

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  43. As I sit here trying to convey words that will comfort you, nothing seems like the right thing to say. Lucy is your beautiful, precious daughter - with or without hair - she is beautiful. Would you rather she had it? Of course. But, it will be just a step in the full and complete healing for Lucy that I am praying for. Love, prayers and strength for you and your family as you endure this marathon.

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  44. She is just as beautiful as the day I met her.

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  45. I stopped in the middle of this post and prayed for your family and cried. I cannot imagine what you are going through right now and it really does make all of the things we complain about on a daily basis seem so trivial. God is good and I pray that Lucy's body will heal. She looks beautiful, as always.

    Love in Christ,
    Lindsey

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  46. sweet girl! She is just as beautiful! This must have been so hard for you. Watching our babies suffer is absolutely gut wrenching.

    Praying for more steps forward toward the end of this road for you. And that our heavenly Father will reveal himself to you more clearly through this.

    Keep fighting Lucy!

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  47. She is beautiful Kate! You and Lucy will both get through this! I agree with you, Sara was probably the perfect person to have with you yesterday. She is a great shoulder to cry on and with you. I am so glad you are surrounded by strong friends and family to help you through this time. We are praying for you.

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  48. Lucy looks BEAUTIFUL!!! Thank you for sharing this journey and allowing us to pray for Lucy and your entire family! Sending love, prayers and healing!!!

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  49. Hi...I am so sorry you are going through this. We just had a breast cancer scare with my mother and the entire time I couldn't imagine having the experience this with a child. Sending prayers your way!

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  50. I may not be able to see the color of her eyes in the picture, but her beautiful, warm smile reveals much more. Saying a prayer even as I type this.

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  51. Oh how beautiful your precious Lucy is!! The sparkle in her eyes does shine through! It is Jesus love and the love that she see's reflected in her Mommy's eyes! You are a rock Kate and God is using you. I cannot fathom how awful this is for you.

    Praying for you. Asking God to allow Lucy to walk unassisted across the stage for preschool graduation! Our God is a God of miracles and we're asking for one!! (Errr....many miracles, but adding this new one today!

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  52. Lucy is so beautiful, inside and out. I am praying for her and all of you!

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  53. Go Lucy Go! Walk Lucy Walk!

    Still praying for you all!

    Carmen Pfeifer

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