And So It Goes

Our new life, that is.  Today was another stark reminder that we have a very sick little girl.  The big pill of reality is sometimes hard to swallow.  Lucy has sat in the chair all day with either Erik or myself holding her while she took naps in between watching TV.  She has only gotten up to use the bathroom.  Best guess is that she has vomited 8 times since she woke up this morning.  It's a miserable way to spend even a day of your childhood, much less months.  Erik and I are exhausted and we aren't the ones that are sick.  I can only imagine how tired Lucy's little body must feel.

It is 6:30pm and I am in the bed.  Not because I want to be, but because I have to be.  Erik has taken his parents, Jack and Ella to eat fish at a friend's house.  Lucy fell asleep as I was doing her dressing change on her central line.  So...that means that I am here until she wakes up and then we will see how she feels.  She so badly wants to go see her friends but she is just so tired.  And because she vomits when she sleeps, I have to be within arms distance in case she were to choke.  Someone has to keep a vigil at all times when she sleeps and tonight it's my turn.  Don't get me wrong.  I don't mind.  I know this is what I need to be doing.  But the honest angel on my shoulder tells me I have to admit that I am a selfish, selfish person who just wants to go hang out with friends.

I just want my old life back.  I want Lucy's old life back, too.  I have grown weary of watching my baby vomit herself into exhaustion everyday.  I am tired of seeing my baby put to sleep everyday to receive radiation that, while prayerfully eradicating her cancer, also threatens many unwanted side effects.  I am tired of doing central line dressing changes as she cringes with the fear that I might hurt her.  I am tired of doctor visits, Physical Therapy, CT scans, MRIs and 2 hours drives back and forth to Memphis every day.  I hate watching life go by without her in it.  Her friends, her school, softball, swimming.  The list could go on and on. 

(this is the Buzz Lightyear CT machine that we went in Thursday to check for a shunt blockage.  Lucy is such a brave girl and just climbed right up on the table.  She laid perfectly still, knowing that the treasure chest was the next stop!)

(Lucy woke up and we went to join our family.  She slept the whole time we were gone, even though she insisted on going.  I bet we've banked another 4 vomit episodes, too.  It's 10:15 and I'm finally finishing this post.)

This, however, is our new life and I guess it would serve me well to get used to it and stop complaining.  Actually, I don't complain all that often.  If I have to say so myself, I think that in general I've been able to keep a pretty good attitude most days.  Don't get me wrong.  I have my moments EVERY day, but God has filled me with an indescribable peace that gets me through each day.  The reality is, even though I am quite pissed off about the whole situation I am learning to give thanks for various aspects of each of the things I listed above as hating.  For example, I hate making Lucy suffer through PT but I am so grateful that she is able to walk and will one day be able to run and play like other children.  I hate driving to Memphis every day but I am so grateful that I live close  to the BEST pediatric cancer hospital in the world and that I get to be home with my family every night.

(Lucy at PT last week)

Let's see...I hate Radiation but without it my Lucy wouldn't have a chance.  There would be no hope (baring a miracle of course.)  I hate doing dressing changes but I am so grateful that Lucy does not have to get poked and prodded every day with needles.  I think you get the picture.  All those things that I hate about Lucy's cancer have been windows to a world of thankfulness and gratitude that I am blessed to experience.  No one wants to go through anything like this.  It rips my heart in a million pieces to see Lucy so sick.  It is absolutely heart breaking.  But my walk with God will never be the same.  Because I am so torn apart, I have no where to look but to Him to get me through this.  I should be so angry with God right now, but I've never felt closer to Him than I do right now.

I'd like to ask that you continue to pray for Lucy's vomiting to subside.  It seems to be getting worse and I am afraid that if we don't see a quick improvement that Dr. W is going to want to admit her for observation.  We are so close to be doing done with this phase of treatment and I would hate to spend it in-patient.  God can take away this burden that she is carrying right now.  I know he can.  I just pray that he will.   

Another thanks to everyone who has sent cards, letters, gifts, donations and most importantly prayers to Lucy.  We continue to be so humbled by the love that you all have shown.  I will forever be indebted to the people who have allowed our family to come into your homes and you all have showered us with prayers on a daily basis.  We are all so undeserving (well, Erik and I are.  Lucy is pretty amazing.)  I will make this promise to each of you reading, just as I have to God.  No matter what Lucy's outcome may be, I will never, ever forget the children and families at Le Bonheur and St. Jude.  I will spend the rest of my life "paying forward" the good will that has been shown to my family during this time of tragedy in our lives.  I don't know how that will manifest, but I will pray that God will open those doors when the times is right. 

****Don't forget to sign up for the Go Lucy Go 5K Run/Walk benefiting Le Bonheur Children's Hospital.****

Going to bed now.  These other two beauties need me, too.

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  1. Each post leaves me bawling my eyes out, praying dilligently for your little Lucy and praising God for the blessing of my family. Your faith is truly inspriring. Even your moments of anger and sadness are inspiring because you refuse to let them overtake you. You keep God number one in your heart and life throughout every trial and it is blessing to witness. Thank you for posting your journey for us to see!

  2. i read every single one of your posts and after every one, i think to myself "Lucy is such a blessed little girl to have those 2 as parents!" God bless you Kate and Erik! Lucy continues to be in my prayers. I have shared your story with so many and there are so many prayers for that precious angel.

  3. God bless you Kate. Keep posting all your feelings as you are such in inpsiration to all of us and SO NOT SELFISH!!! I am praying specifically for the vomiting to subside and will post to my FB prayer partners.
    God bless each one of your family today!

  4. Praying. So hard to know words to write. I don't. I am just crying out to God on Lucy's behalf, on your entire family's behalf. I am thankful He knows every piece of this, every feeling, every fact. I know He is bigger and He is acting even if you can't see it all. One stitch in the tapestry.

  5. I don't know you...I stubled across your blog from a "Pray for Lucy" button just a few days after Lucy's diagnosis. My heart is heavy for you...and I lift you and your sweet Lucy up every day in prayer! Thank you for your honesty and your openess thru all of this - I can't even fathom the burden you, your husband and Lucy bear! Please know there are prayers being offered up in Louisiana!

  6. Praying for no more vomiting. You are an example for all of us on how to handle these situations. I love that you are honest about hating this but going on and being thankful that it is all available. I can see the honesty in your words that you can not do this on your own, but you can do it because God is with you.

  7. It's good to hear you say that you don't complain that much! You really don't! At least not on your blog. You have raw honesty that none of us strangers deserve. Thanks for sharing your life with us and for sharing specific ways we can pray for you and your family. God is good.

  8. Praying every day, Kate... and the boys don't forget either :) Cade's one-liner prayer at my parents house last week was, "Dear God, Please help Lucy get all better. Amen." You all are in our thoughts & prayers

  9. Kate, Not a day or often many times during the day goes by, without special prayers and thoughts of Lucy and also you. My heart breaks that Lucy is still vomiting, and not feeling up to playing. I so miss her beautiful smile. Continuing to ask God to please free Lucy from the vomiting, and allow her to have some pleasant times, interacting with Ella and Jack, as well as her friends.
    You Kate, are doing such a great job balancing your time with your children, and I praise God, that you have such a wonderful support system. It is hard enough to watch your child be sick, but then to have other children that need attention also, makes things even more difficult. When you feel down, please shut your eyes for a moment, and feel the strong hugs that are being sent to you, take a deep breath, and know that God will help you take that next step! Always in my thoughts and prayers.

    Sending Many Hugs to you, and Butterfly Kisses to Lucy!

    A Mom-Mom in NJ

  10. Praying with everything I have that Lucy's vomiting will subside. My daughter wrote "Go Lucy Go" on our kitchen chalkboard and there it will stay to remind us to pray for Lucy.

  11. I continue to keep you and Lucy in my thoughts and prayers.

  12. I don't know you or your sweet Lucy, but came across your blog on someone else's blog. Your family reminds me a lot of my family...I have a 5 yr. old daughter too...Ellie Joy. Whenever I watch my Ellie doing her everyday, normal stuff I remember to pray for Lucy. I wish you didn't have to go through this trial...I think of your family often throughout the day and will keep you in my prayers. It is amazing to me how the Lord connects the hearts of those who are His. Even though we are strangers, you are a mom like me and you are in the the midst of one of the greatest battles you may ever face. Just know that one more "sister" in Christ is praying with you.
    Sandra in WA

  13. Hi Kate,
    I've been reading your blog for sometime now and have never commented.
    I want to now though.
    You are such a strong, loving & amazing person. Your only human & being slightly selfish & wanting your old life back is completely and utterly normal.

    You are an amazing Christian and I dont have to know you personally to know that. You are completely devoted & I could learn a thing or two from you.

    I am a 20 year old engaged australian who hopes and prays that one day I may have such a family as beautiful as yours.
    When I read your blog I can't help but be inspired by you.

    Even though you have struggled so much with this cancer, I KNOW she will beat this.
    I know she will come through.
    I know God will answer your prayers.
    No matter what happens Kate, stay strong, keep your chin up & know how much God loves you.

    I like to think everything happens for a reason.
    You may not know what the reason is now, but someday you will. You will look back on your life one day & say, I understand now. It all makes sence.

    I know cancer is such a hard thing to think that something good will come out of it.
    But there will be. Even if it is just the strength & love & compassion that your family has together & your stregthened love for God. It is enough. To have that is an amazing thing.

    Kate, I pray for you & your family. I know God gave you your three beautiful kids for a reason. He knows you are strong enough to deal with cancer. He knows you will become a better person from it.
    He knows your an amazing person. And I do too.
    Thank you for sharing your life with us here & thank you for being the person you are.

    You are beautiful.

    Thank you & God Bless.

    P.S. I dont know if it will help you at all, but I know it also inspires me. There is this blog called 1000awesomethings.com and everyday it counts down one awesome thing that sometimes we may overlook. Somedays it can be a big thing, Sometimes It can be small. But it does make you think & really appreciate those aweosme things around you that you may not have ever stopped to think about.

    God Bless you Kate.

  14. Oh yucko, poor little Lucy--poor Mama. I am sorry you 5 are all having to go through this, it's miserable. I', praying things will start getting better.

  15. I wanted to share a verse with you this I ran across tonight, scripture always seems to help me when nothing else will. You are in my prayers.

    Rely on the Lord! Be strong and confident! REly on the Lord!
    Psalm 27:14

  16. I hope and pray that the vomiting will ease soon for sweet Lucy.

    I just signed my hubby up to do the 5K. I am hoping my 7 yr old will also do the kid's run.