4.30.2011

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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4.28.2011

All Clear

 Im so happy to report that Lucy's shunt looks great!  The doctors are chalking it all up to over active sinuses.  We are still praying very hard that her vomiting will subside.

God is good

4.27.2011

Prayer for Tomorrow

Today has been another trying day as Lucy continues to battle vomiting. A safe estimate would be 20 times in the last 48 hours.  Of course our first fear is a shunt failure.  I have checked, rechecked and checked again the list of symptoms the doctors gave us to look for that would indicate a problem with her shunt.  Nothing seems to fit, though.  You would almost have to see it to believe it, but she will vomit and then immediately return to playing, watching TV or laughing and talking.  It's almost comical.  That being said, she is still vomiting at an unusual rate and that has the doctors concerned.  Today and yesterday she was delayed in receiving her radiation by 2 hours due to the fact that they could not get the vomiting under control so that she could receive her "sleepy medicine." 

So tomorrow around 10:45 she will have a CT scan to check for any blockages or other problems with her shunt.  I would like to ask that you pray specifically that everything will be all clear and that the vomiting will subside now that they are doing spine and brain radiation boosts.  In theory once she is no longer receiving whole head and whole spine RT, many of the yucky side effects will start to subside.  Who knows....maybe she will even get some of her appetite back.  I am also anxious to see her energy return.  She just seems so run down lately.  Hardly any stamina these days.  I know this all part of the RT, but I'm ready for our upcoming break from treatment. 

Lucy has been prescribed a drug called Periactin.  It is an appetite stimulant that is used very often in children and has proven to be quite effective.  The nutritionist is really pushing us to give it to Lucy, but we are a little hesitant.  First of all, even if I give it to her and she wants to eat, everything tastes gross right now.  Lucy says that all the food she tries tastes yucky.  That was an expected side effect of Radiation.  Another reason I am hesitant is that due to her age, she is one of the last children to receive RT each day.  I think it would be inhumane to give her an appetite stimulant and then keep her NPO until 4 or 5 each day.  So...we have made the decision to hold off on the medicine until the end of RT.  After she has completed this phase of treatment we will begin to give it to her and pray that we can pack on about 10 pounds before we start Chemo.  I know that this is wishful thinking, but it would be wonderful to plump her up before Chemo takes it back off of her again. 

As always, though, Ms. Lucy is a fighter.  She's so brave and strong.  Here is a picture of Lucy on her bike that is WAY too small for her.  We took her to get a new bike that same night and a HELMET.  Please don't fuss.  I promise she wears one.  Seriously...the child has a shunt.  Not a smart move to do anything these days without a helmet.  I'd have her sleep in one if I thought it was necessary. We just had to buy one and make some adjustments to it so that it would fit around the shunt and not hurt her.  I just think its great that she even wanted to ride. 



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4.26.2011

RT

4 weeks down. 2 to go. May God continue to protect Lucy and praying the radiation does its job.

Lucy is having a fit with vomiting. At least 15 times in the last 48 hours. We are trying some different approaches to stop it. I'd like to ask that you pray she would get some relief. She is already tired from RT and the vomiting only makes it worse.

God is good and He hears our prayers. Despite the side effects I am so grateful for treatments that have been proven to work. I am heavily burdened tonight for new friends at St. Jude whose children have incurable diseases. God continues to prove that HE is our only hope. As one mother reminded me yesterday, He is all we have and He is all we need.

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Another Day in Pictures

The Krull family spending more quality time together as a family...











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4.25.2011

Celebrating Easter

Our family celebrated Easter with a day full of wonderful activities.  The most important, however, was the Baptism of my oldest daughter, Ella.  With all that has been going on in our lives recently, we are really proud that Ella had a special day to celebrate such a wonderful life decision.  THE most important decision she will ever make.  She's such a big girl and just absolutely in love with the Lord.  She has been so blessed to have a life filled with people who love her and who have taught her about God. 

Below are pictures of my friend Nicole and her son, John Owen.  Nicole and I have been friends since birth.  She's one of those true, tried friends that will always be a special part of my life.  Nicole and I were baptized together when we were 8 years old.  What a special day to see our children welcomed into the Kingdom of God on the same day. 

Congratulations Ella.  Mommy is so very proud of you. 



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Sisters

Ella came with Lucy, Mom and me today.  These sisters just LOVE each other (when they aren't fighting, that is.)
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4.23.2011

Awake

Yeah, I'm supposed to be asleep right now.  But I can't.  So I'm awake reading the comments that people have left on my blog.  Reading the blogs associated with the comments.  Realizing that although I may feel as if I am the only one living through hell on earth, I'm not.  As a matter of fact, I am humbled to realize that my situation is actually not as bad as others.  Don't get me wrong, no situation is worse than the one you are living.  However, there are a lot of sick children in this world and a lot of hurting parents.

As I sit consumed by my own sorrows, I have been taken to my knees this weekend to think about the blood of Christ.  How on Good Friday our God allowed his son...his only child...to be sacrificed for my sins.  I can honestly say that Gods' sacrifice means more this Easter than it ever has before.  I would never, ever begin to compare my hurt with God's, but I do know what it is like to lay your child at the altar.  The difference is that Jesus never had an option for salvation from his death.  He was born to die.   It's the only reason he was put on this earth.  Our God allowed his son to suffer and for a moment, carry the weight of the world's sin so that we all would have eternal life. 

Everyday I pray and pray that God would spare Lucy's life.  I pray that God would heal her.  Jesus never had that option.  What he did for us that day at Calvary can never be duplicated.  That one act of selflessness was the greatest deed in the history of this world.  For that I am eternally grateful. Really, really grateful. 

I look forward to tomorrow as we celebrate the miraculous act of Jesus rising from the dead.  I think of the story of Jairus' daughter.  He assures the people of the community that her death has not been in vain.  While Lucy is not "dead" I pray that her illness with not be in vain.  If God is going to allow her to be sick, I pray that somehow, someway God will be glorified through it all.  I am praying for a miracle the same way Jarius did.  I want God to just touch Lucy and make her well.  Still praying for the miracle of Biblical proportions.  Thank you dear God for dying on the cross for my sins.  Thank you for preparing a way for me in this rocky life and even in the afterlife.  I have faith because HE LIVES.
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Today the girls decided they wanted to roast marshmallows.  So...what did we do?  We roasted marshmallows of course.  87 degrees.  Hot as heck.  We roasted marshmallows because the girls wanted to.  Not because it made sense and not because we particularly wanted to.  BUT because Ella and Lucy wanted to.  And that's the way we roll these days.......



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4.21.2011

Coming to an End

The end of a great Spring Break, that is.  What a wonderful, refreshing time we have had this week.  The constant sound of giggling children running around the house has been music to my ears.  I have to be honest.  Most of the time when we are all together I am usually ready to go home by the end of the week.  I've usually had my fill and am ready for my own life back.  But tonight as we said goodbye to one sister and her 3 children, I fought back tears and longed for the days when we used to live 1 block from each other.  That was a long, long time ago and I am quite sure we took for granted just how lucky we were.  We'd all give anything to be that close now. 

I have such wonderful pictures to share, but that would require me to keep track of my camera cord to upload my pictures.  Seriously.  Can you say a bit distracted these days??  I'll find it tomorrow and share them then.  Erik's other sister leaves Saturday morning and I'm sure there will be more tears then. 



I have felt safe this week.  At times, for even a brief moment, watching Lucy play with her cousins-laughing, joking, smiling--I forgot she was sick.  Granted, reality would slap me in the face very quickly, but those brief moments of denial were wonderful.  It is maddening trying to make sense of Lucy's cancer.  I know I have to stop trying to understand it, but I just can't.  Even last night I was videoing Lucy dying Easter eggs with her cousins and I got so choked up I had to leave the room.  I cried my eyes out with a broken heart and angry spirit.

I rocked Jack to sleep tonight and prayed my little heart out.  Tonight's prayer was asking forgiveness more than anything.  I am so utterly full of doubt and despair right now that I feel so guilty.  I feel as if I am at an all time low in my faith.  Tomorrow Lucy will finish her 4th week of RT.  I know I should be counting down the days until we are done, but I'm honestly a nervous wreck.  4 weeks after her last RT, she will have an MRI that will determine how effective the radiation was.  It makes my stomach turn in knots just thinking about it.  The "what ifs" have invaded my mind and have completely taken over.  I just can't seem to shake it. 

Anyone reading this blog that has felt I was such a "woman of faith" before is surely disappointed to see the real me tonight.  The me that is terrified that all this hell I have allowed my baby to go through will be in vain.  The me that is scared to death I may lose her.  The me that wants to shout at God for allowing this to happen.  And the me that is so conflicted in her emotions that one minute I am literally crying thanks to God for every second I have with my sweet Lucy and then torn apart with sadness the next.  I'm a wreck to be honest with you.  Actually what I am is a mother who loves her child so much it literally hurts.  My mind hearts, my heart hurts and my whole body aches from desire to see her whole again. 

I keep reminding God that He can't blame me for my feelings. He should have never given Lucy to me if he did not want me to love her so much. He should have never made her so perfect in the first place if he did not want me to fall madly in love with her and cling to very being. I just can't help it. She is an angel sent to me-an absolute undeserved blessing. And I'm not the only one who loves her.  She is surrounded by family, friends and strangers alike who are all pouring their all on the altar of God asking for his mercy and miraculous healing grace. 



And I should probably give you all a heads up, too.  Since Lucy was diagnosed, I've been pleading for Jesus to return.  Just come on back, Lord, and take away all this hurt from us all.  I have lived nothing short of a sinful life, but I do know that I am a child of God.  My husband is a Christian, our families are, my oldest daughter now is and my two youngest are covered by God's understanding and sweet mercies.  So...yep.  We're ready.  Come on and get us sweet Jesus.  No healing on this earth will even begin to match the healing that we will experience in heaven. 

I am still just dumbfounded by the number of people who have read and still continue to read this blog.  In a way it is a blessing and a curse.  A total blessing because of the number of people who are praying for Lucy's healing every day.  I could have never reached this many people without this outlet.  And even though I spend a lot of time in the valleys these days I know for sure that your prayers are working.  I covet those prayers and ask that you please don't stop.

At the same time, however, the blog has been a bit of a curse.  While I always try to be as honest as I can with my emotions and feelings, there are times I probably hold back as to not truly convey my anger and frustrations with God.  I would never want to be a stumbling block to anyone.  Tonight, though, I had some things I needed to get out.  My tears were just not doing the job.  It was time to put fingers to keyboard.  My desire, however, is that you will understand my fear and anger but also realize that I have full faith in a God who never fails.  I view my relationship with God like I do my own family.  There are times when I want to yell at them or not talk to them but I always love them no matter what.  I never turn my back on them and in the end we are still family.  That's how it is with God.  He knows my heart, so I might has well speak the words.  He reads my mind, so I might has well verbalize my hateful thoughts.  And after I do, I feel these wonderful, loving arms wrap tight around me and reassure me that he still loves me.  I'm still his child and he wants nothing but the best for me and Lucy. 

One day I hope to understand the depths of how greatly my faith has been solidified through this trial.  It actually doesn't even make sense.  I know that today I am running a little low, but in general this whole ordeal has brought me to my knees, every day a little closer to God.  That in itself has been a blessing.  I am grateful for my salvation and grateful for a loving God who loves my Lucy even more than I do. 


Last week Erik and I spent some time in the meditation garden at St. Jude and I wanted to share this picture.  We have a long, long journey ahead of us and I look forward to spending more time in this quite sanctuary talking with God.  


Sorry if this post has been all of the board, but that's what happens when you are utterly exhasuted and its 11:00 at night.




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4.20.2011

4.19.2011

Softball in the South

If you are not from the South, I don't know if you can appreciate girls and softball.  Maybe it is as popular in other parts of the country..I don't know.  All I know is that here it is a way of life.  Boys play football or baseball and girls play softball.  I played growing up and even in high school so softball was always an important part of my life.  I have to say that things are just a bit different now.  It's a lot more competitive and kids work a lot harder at it at an earlier age than before.  With all this said, I've dreaded Ella joining the race for many years.  She moved up to the next league this year and admittedly, she is a little behind the curve and who knows if she will ever catch up.  But I can tell you that she has a blast and I can say that without a doubt that is all that matters.  I might not have said that even a few months ago, but having a sick child has helped me put things into a totally different perspective.  Things that mattered before don't matter now. 

I should be able to make it to most of her games, but a fever or cold might take me away for several days so I am enjoying as many of them as I can.  Her team is not likely to win many games (if any) but they are just a joy to watch.  Ella is such an angel and has the best heart.




Lucy continues to do well with Radiation.  She is still battling vomitting and feels pretty wiped out at times.  But as usual, she is such a trooper and is staying strong.  She is developing an attitude that we are having to deal with at times, but I am convinced that this strong will is what is going to pull her through this ordeal.  Being a mom is really hard right now because I want nothing more than to caudal her and give in to her every whine and whimper.  But I had a turning point moment about a week ago and I decided that it was time for me to be a mommy again.  It's been so hard, but my whole attitude and emotional wellbeing has been better.  I am no longer letting her emotions dictate my ability to parent and she seems to have responded so well.  Can you even begin to imagine how hard it is to put your sick child in time out or take her DSi away when she refuses to participate in PT? 

Well, its sheer misery.  I swear it is harder on me than it is her.  It's amazing though.  When I put my foot down and make her follow the rules, she does so well.  She immediately gets it together and just shines.  I realize she is pushing her boundaries and I admit that those boudaries have probably been extended from before.  But hey, this is a team process.  If I am asking her to adapt to change, then I guess I am too. 

This is hard on all of us.  No one said it would be easy.  I just don't know that we had a clue HOW hard it would be.  I was reminded tonight through a song on KLove that God promises that if He brings us to it He will bring us through it.  I am clinging to that thought tonight as I continue to struggle with comprehending cancer and its ability to wreck utter havoc on families and especially children. 

I am grateful tonight to be home with my family...all of them.  Erik's sisters are here and we are surrounded by cousins.  It's wonderful.  We wouldn't have it any other way. 
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The Chosen Ones

I don't do this often, but I wanted to share this poem that a sweet reader posted last night in my comments.  It really struck home with me.  I have no clue who wrote it and I do not take any credit for it.  It is wonderfully written and I could never put pen to paper in such an eloquent manner.  Kudos to the writter.

The Chosen Ones

Not just any child could walk this uphill road.
These children walk it everyday, carrying a heavy load.
They show us heights of courage that we may never reach.
They show us what it is to fight a fight you cannot teach.

We stand beside them knowing there is no guarantee.
 Except the One we started with to love them endlessly.
They are the special chosen ones, God knew it from the start.
He picked each child for cancer by measuring their heart.

The ones that measured biggest would someday face a test.
The challenge is to understand - God loves them more, not less.
He's using them to move our hearts closer to His own.
Teaching us to trust His plan and fear not the unknown.

For God can move a mountain and part the raging sea.
He wants our struggles offered up and given forth to Thee.
He smiles upon the chosen ones, before they're ever born
and blesses them with courage to walk through any storm.

His love for them surpasses ours and cannot be denied,
for in the dark of suffering His light will not subside.
No matter what the outcome, there is the greatest peace,
in knowing deep inside their hearts, His love will never cease.


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Momma Bird

I feel lost when my chickens are not all in the coop together.  I can't stand it when we are apart.  That is why Lucy's month long hospital almost broke me.  My sweet friend Sarah sent me this ring yesterday.  This way I'll always have my birdies in the nest.


Mine is the one with three pearls.  Blue for Jack, purple for Ella and green for Lucy. 

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4.18.2011

Catching Up

Now that we are spending more time at home and the weather is so nice, my camera is in overdrive.  I am not a great photographer and I don't really know how to use the fancy photo editing software but I do love to take pictures of my kiddos.  They are so programmed to smile when they see the Kodak come out that I have to laugh sometimes.  Even when Lucy was so sick in the hospital she would still smile when the camera was on her!

I'm not going to do a lot of editorializing in this post.  I just wanted to remember the first fishing trip of the Spring of 2011.  It was the first outdoors outing since Lucy's diagnosis.  And although she didn't have enough stamina to last very long, she had a great time while she lasted. 






 (a mother duck has laid eggs in my parent's circular drive)


My grandfather, who was very ill while Lucy was in the hosptial was discharged from his second hosptial stay the day we went fishing at my parent's house.  I had not seen him since February 22nd, the day before Lucy was diagnosed.  It was the day of his reconstructive surgery.  While he was sick, the family determined that it was best that he did not know about Lucy.  My grandmother knew, but she gae everyone that visited him strict orders not to tell him.  His health was so unstable that she knew that hearing of Lucy would be more than he could handle.  While Lucy was not up to sitting in his lap, Ella sure was.  My loving, super compassionate 7 year old just about wore a hole in Paw Paw's lap trying to snuggle.  Oh, it thrilled my heart to see them together.  I ask that you please continue to pray for my grandfather.  He goes to his oncologist on Monday to determine the course of action to treat the two different types of cancer that he has.  My grandfather is a strong, strong man, but he has been through so much lately.  He needs his strength back to fight the battle that lies ahead for him. 

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Medicine Room


My newly created arts and crafts/sewing room has now been transformed into the not-so-wanted (but much needed) medicine room.  This is just one box of medial supplies that Lucy requires on a daily basis.  Just a glimpse of our new normal.

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