3.11.2011

Friday Night

Well, its Friday night.  Usually we are gathered with a group of friends, kids running wild, playing Wii or playing board games.  With spring around the corner we should be outside practicing softball, gearing up for catching frogs and fireflies and doing much-needed yard work.  But instead I am sitting on the couch/bed watching Lucy's heart monitor and talking with nurses about catheters, shunts, spinal pressures and the effects of steroids on little children.  This whole cancer thing still just does not make sense.  I've tried and tried and tried to get my head around it but I just can't. 

As I've mentioned before, this whole journey is like a never ending roller coaster.  Tonight's emotion......FRUSTRATION!!!  We are still trying to regulate the pressure buildup in Lucy's spine.  She is attached to an external drainage system that looks something like this:

Over the next few days we will be slowly weening her off to see how her body handles itself.  I have had it explained to me several times now but I can't say that I completely understand.  I do know that right now they are keeping as much CSF (cerebrospinal fluid) away from her spine as possible.  The doctors are trying to give her wounds time to heal.  However....I'm growing weary of the whole process.  We should have been at St. Jude over a week ago.  We should be starting radiation Monday.  As of now it could be Wednesday before we leave here.  I want to avoid an internal shunt in her head if at all possible, but if it will make her better and get this show on the road, then let's do it!  But alas, we will spend another weekend just waiting...and waiting....and waiting.

We continue to make friends on the 7th floor.  We now know 5 families who will be in treatment with us at St. Jude.  Every day there seems to be another Medullo patient admitted.  It just makes me want to vomit every time we see another room be filled.  It's just so unfair.  If there is one thing I've learned, though, is that brain cancer does not discriminate.  It does not care if you are rich, poor, black, white, female, male.  We're all here in the same boat.  Each one of us watching and praying as our children fight for their lives. 

While we have been here something special has occurred on the 7th floor.  Families have been brought together in such a way of unification that the staff says they've never seen before.  It's been a blessing really.  Mothers talk openly about their fears, father cry freely and then sometimes we all just sit quietly and are just consoled by the fact that we are walking this road together.  I can promise you that you never, ever want to walk this road, but there is comfort in knowing you aren't walking it alone. 

On another note...

Bringing me JOY today........


Psalm 18:2 The Lord is my rock, my fortress, and my savior; my God is my rock, in whom I find protection. He is my shield, the power that saves me, and my place of safety
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13 comments:

  1. Kate, Erik, Ella, Lucy, & Jack;

    If I had to say one thing to this post- Kate you are definitely not alone. Not there int he hospital nor outside. I suddenly had a huge smile when I saw all three of your sweet babies picture. Thank you again for sharing life with all of us! Much Love.
    GO LUCY GO!

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  2. kate i found your blog from another blog i have been reading lately and all i can say is your strenghth just amazies me, you and your family are going through so much at this time and through it all you have taught us readers so much and shown us to lean on the lord more when the hard times have come, i have keeped you and your sweet family in are prayers every night and moring please know your not alone through this and please know we will continue to pray for you guys and thanks for letting us strangers be apart of your sweet daughters journey through this .... much love elisa from ,taylorsville , utah!!!

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  3. Keeping Lucy and your family in my thoughts and prayers. I can't begin to fathom what you guys are going through, but as Kerri said - you definitely aren't alone.

    There are MANY people praying for Lucy.

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  4. Good night sweet Lucy. Kate - your a fantastic mommy to your babies! Remember to take care of you too. Love you both!

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  5. I read all your posts and Lucy is such an inspiration and will continue to be through out her (long!) life.

    I haven't been able to really contribute anything until now and I wanted to let you know I babysit a 5 year old with a shunt in her head that she's had since she was a few weeks old and it doesn't affect her at all. She's doing great and I'm sure if it comes to Lucy having one she'll do great also!

    God Bless,
    Sara in New York :)

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  6. Hi Kate...just checking in on Lucy. Thru you, I am learning there are certain stages to dealing with this 'enemy' called cancer...disbelief, anger, frustration, sadness, helplessness and even combat. It seems as if there is no structure or stability to any of these stages and they come up unexpectedly and randomly and sometimes, more than one rears its ugly head at a time. You are rapidly becoming my hero...and I'm sure to many others out there. I'm sure the other families who are walking down the same path as yours are so very grateful for your presence - as you are theirs. Because of your willingness to share all of your feelings,, you have made this awful disease very real. Now we all have to take what we have learned and stand next to you (and the other families) and fight it with all we have...the power of prayer and faith in our Provider, our Healer, our Peace, our Defender, our Father. I'm praying for you & Lucy and your family..and for all the other families who are fighting this battle too. I hope you have a good night's sleep tonight. I pray Lucy wakes in the morning with a renewed strength and that her healing has already begun. You are in my thoughts and prayers. :o)

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  7. Thoughts and Prayers to the amazing Krull family and all of the families on the seventh floor!

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  8. Praying and praying and praying for your precious girl.

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  9. What a beautiful picture of your children! Praying every day for your family!

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  10. Praying for a good day, good news and peace for your family today.

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  11. When Lucy comes home we are going to have the biggest party ever! Today i am praying for everything to get regulated so she can begin her treatments at st Jude soon. Love you guys!

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  12. I have been following your blog for awhile now and I am praying for your family. Many, many years ago I was the admissions supervisor at LeBonheur and that is the place to be. The staff and drs are the best and so very caring. I know the road is long but yoou have an entire world behind you and your family.

    Vickie heydenreich

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  13. This is the first time I have ever posted to a blog - ever. I just had to let you know your family has blessed my soul. Thank you for sharing your fight for Little Miss Lucy. She is absolutely adorable! Continue to be reminded, "He who refreshes others himself will be refreshed!"

    Kotina

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