3.05.2011

A Day of Therapy



(Lucy gave baby Jack a huge smile and kept pinching his cheeks.  I think she really misses him.)


It was a day of therapy...for us all.  We had several visitors throughout the day that put smiles on our faces and brought a much needed distraction to our day.  I do have to admit that this morning/early afternoon I was very emotional.  After seeing my baby break down because she's just realized that she would be spending her 5th birthday in the hospital, I was spent. 

For about 3 hours today I had a good pity party for myself and cried...alot.  I am over it.  I am mad.  I want to take my baby and go home.  I want to be with my other children. I want my family whole again.  I want Lucy to play softball, I want my girls to do swim team, I want Lucy back in school.  This sucks!  Cancer sucks.  The whole damn thing sucks.  I want to go to the top of the roof and scream.  Then I want to hit something..someone..whatever..whomever. 

But I can't and here we are.  Nothing left to do but deal with it and move forward.  Several changes in plans today.  Due to the meningitis, looks as if we will be inpatient at LeBonheur for 5-7 more days.  Then we will head to St. Jude inpatient for 2-3 weeks.  More than likely we will be delayed in starting radiation for one week.  I am really, really bummed about it but I trust the doctors and they feel as if this is best for Lucy.  She can't even begin to handle the radiation until she is stronger. 

At one point today, Lucy sat in Erik's lap and slept.  She just gets so tired of sitting in bed, but is hooked up to a heart monitor all the time so she can't really move around a lot.  Erik's lap is always convenient and she feels so safe.  He told me later about this conversation:

Lucy- "Daddy, I want to play with Ella in the play room."
Erik- "Well then we have to listen to the doctors and take our medicine.  The doctors are here to make you better."
Lucy- "But Daddy, I can't play with Ella because I can't walk."

Oh, it just breaks my heart.  I know she will walk again one day (hopefully soon) but it is so hard for her to understand.  When Erik got her out of bed to use the restroom he stood her up and asked her to take a step.  She tried and then stumbled and almost fell.  She got so mad and started crying.  I am hoping that this anger will fuel her physical therapy sessions.

Speaking of therapy, we all participated in a little therapy today.  Erik went home last night and spent some time with his parents and Ella and Jack.  He was able to bathe them both, put Jack to bed and sleep with Ella.  I think it was uplifting for all involved.  They were all back at the hospital around noon and I spent the afternoon loving on my baby boy.  I have seen Ella throughout the week several times and she won't sit long enough for me to smooch on.  Ella had Grace E. to play with all afternoon so that made her happy.  The highlight of the night was when Lucy's best friend Hyatt came to visit.  Then I did a little Target shopping and Pei Wei eating with my friend Amanda. 


Oh My Goodness!  She was so happy I think she could have floated off of the bed.  When he walked into the room they locked eyes and smiled, then laughed and then smiled some more.  He sat by her in bed and held her hand while they watched Monsters vs. Aliens.  Then they played their DSi's for a little while.  After about 25 minutes, though, she was spent.  She had to take a nap.  She just has no stamina, but this was the happiest I had seen her since surgery.  I just thrilled my soul. 



Jack played in the little car with 2 of my uncles and had a wonderful time...


Cousin Maddie was the first visitor of the day and made Lucy laugh, although she was very concerned that Maddie was going to mess with the tubing to her iv's.

  
One last glimpse of my baby boy before I go to sleep.



Lucy will more than likely have another Lumbar Puncture tomorrow to help drain the spinal fluid buildup.  While it is not a big surgery, she still has to be put to sleep.  I will keep everyone posted for sure!  Thank you again for your continual prayers.
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10 comments:

  1. Ugh, I have read several pages on here my friend, and my heart is so heavy and burdened for you all. I am a mommy too, and I can't even begin to imagine what you are going through. I can only sit and pray....but that is HUGE! I will be earnestly praying for you all daily, hourly, minute by minute as you come to mind. Praying for healing, for comfort, for strength, for endurance, for hope, for the peace that passes all understanding!!! Please, please keep us updated as you can. Let her know there are tons and tons of us out here praying!

    Loving you all from Washington state,
    Deanna and family

    http://joeanddeanna.blogspot.com/

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  2. Kate,
    My name is Jana. I found your blog tonight and cried at what your family is going through. I am a Christian mother of 2 (Ella~4yrs, Easton ~1year) I agree with you, Cancer Sucks!!! My brother in law had it and wore a rubber band with those very words!!! Please know that our family will be praying for you! Tomorrow morning I will be sitting with my daughter and sharing with her Lucy's story. She got a doll for Christmas and named her Lucy so I have a feeling that your daughter's name will be prayed for daily in our house! Please continue to write and update us. Could you please let us know if there is an address where we could send Lucy a birthday card. We would love to be an encouragement to her, Ella, and the rest of your sweet family!
    Your new prayer warriors,
    The Millers

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  3. Kate-
    You dont know me(I know you get that alot on here =)) but I got news of your page thru Brad Cook. He and his wife are in my small group at Heartsong church. Lucy and your family are on our prayer list.
    As I read over your pages about Lucy, it breaks my heart. I have an almost 2 year old(her bday is March 13th-March babies are awesome!) and cant imagine what it would be like for my baby to be ok now and then in a few years something happen. It really makes you want to depend and rely on God that He has a plan and its not ours. Anyway, I spent a while last night reading over the pages and pages about your precious Princess(and your family). Ive been praying for yall since. Thanks for letting all of us be a part of your lives even if its not physically. Lucy is a strong little girl and SO precious! That little face is so sweet!
    Prayers for peace and rest tonight!!
    Stacey

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  4. I just found your blog this evening. My heart is breaking for your daughter and your family. I cannot fathom what you are dealing with. Please know your little girl is deep withing our prayers. She is a brave girl and she'll beat this. Just you wait and see!
    God bless and stay strong.

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  5. “Lord, to whom shall we go? You have the words of eternal life. We believe and know that you are the Holy One of God.” John 6:68–69 (NIV)

    Even if we don't understand God's plan-- we know he is with us. As I was reading Rick Warren's daily devotional I started praying for Lucy and your family. We love you!

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  6. I have been reading your blog for a couple of days . . . found you through Kellys Corner. My heart is hurting for you and your sweet family. Little Lucy is absolutely precious. You are remaining faithful and there is no doubt in my mind that God is going to bless you all!! Stay strong and faithful, praying hard for Lucy to gain strength and for healing . . . praying for strength for the rest of your family, wisdom for the doctors and therapists working with her. May God bless you all.

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  7. Oh to see that beautiful smile AGAIN! I know i posted those same words yesterday but it makes today seem better to wake up and look at your blog and see her smile. Everytime I think of you I say a prayer. I am amazed at her drive and her motivation. Most adults aren't as motivated as she is. Keep up the good work Lucy! Keep your eyes on Jesus, he is right there with you! Believe in his word and his promises!

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  8. Remember I can do all things through Christ who strengthens me.

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  9. What a refreshing day for all! It looks as though everyone benefited from the day of therapy. I hope that Lucy has such a special birthday celebration. I pray for many smiles and a HAPPY day.
    I wanted to share with you a praise song that my 3-year-old, Addison, and I sing often. I’m sure you’ve heard it. With Lucy and your family being in the forefront of my thoughts and prayers, I often catch myself singing or thinking of this song.
    “My GOD is SO BIG. So STRONG and so MIGHTY, there’s NOTHING MY GOD CANNOT DO!”
    Sending prayers from Maryville!

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  10. I found your blog from arianna's(bennett'smom). I wanted to let you know I am holding Lucy and your family up in my prayers. I pray her smile will return. I pray the pain meds will control the pain. Praying for Lucy in KY.

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