Saturday, December 31, 2011

2011 Recap



I don't think I've ever been so excited to see a year come to a close.  2011 was a year I will never forget.  Our lives changed forever on February 23rd and we are still dealing with the aftermath.  Probably will for many years to come.  I've said before that I would never, ever chose this for our lives.  Not for Lucy, not for my other children and not for me or Erik. 

This year alone we have experienced more hurt, more fear, more anger and more heartache than any one person should know their whole life.  Our eyes have been opened to a world we wish we never knew.  We have made friends and we have lost friends.  We have grieved with parents we hardly knew but were so connected to on a deeper level.  We have been to the depths of hell and have celebrated on the mountaintops.  We have learned to trust God, fear God and love God in a way that we have never before. 

Through this year I have been thankful for many things as well.  I am thankful for my friends.  My tried and true friends who have been by my side through it all.  I am thankful for our families.  It would be an understatement to say that we couldn't have made it for even day without their help.  I am thankful for Covington.  The town that I couldn't wait to leave when I was 18 and swore I would never return to.  Oh how I love this town!  The support and love that has been shown to our family is still unbelievable.  We have been overwhelmed and remain amazed by it all. 

I am thankful for the thousands of friends I have never met and will never meet this side of heaven.  Those of you who love my daughter and our family.  Thank you all for coming into our live and walking this journey with us.  Thank you for sharing our fears, tears and victories.  None of you will ever know what a blessing you have been to our family. 

And most of all I have come to stand in awe of the power of prayer.  The prayers that have been said around the globe for Ella, Lucy, Jack, Erik and myself have been felt on a daily basis. I know that the walls of heaven have been shaken as the prayers have flooded the throne of God.  Our Lord has been honored to hear your petitions and we will forever remain humbled by them. 

Lucy's cancer will not define her.  It will not define our family.  Rather, we will use this hurdle in our lives to do great things.  Lucy is destined for something great.  I know she is.  I also know that the rest of our family will rise to the calling of a higher purpose.  My Ella will use the hurt she felt and the compassion she has shown her sister to affect many lives one day.  Jack will read about the road his sister and family walked and will grow to have an unbridled zeal and appreciation for life.  Erik and I are patiently waiting for our greater purpose to be revealed.  Something is brewing and we are holding on tight until we figure out what it is. 

For now, my greater purpose is raising three beautiful children and caring for a wonderful husband.  I am blessed woman for sure. 





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Friday, December 30, 2011

Hurting Tonight

Tonight I write with the heaviest heart.  I can hardly breathe and the amount of pain I feel is so intense.  Our sweet friend, Justin (the one that Lucy has been with since day 1 of this journey) was taken by ambulance last night from East Tennessee to LeBonheur.  We had just arrived home from our own travels from East Tn when I got the phone call.  Kristie, his mother, was in the ambulance with him and they were headed my way.  Without a single thought I got right back in the truck and headed to Memphis.  I met her there and stayed until her family arrived 2 hours later. 

Justin has had an acute onset of tumor growth that led to sizable formations in his brain and bleeding there as well.  The family has chosen not to intervene with medicine, as the doctors have told them there is nothing they can do to help him.  He traveled back home tonight to be with his family and friends in his last days. 

I am asking you to pray for him and his family right now.  Honestly, I need you to.  I am so angry, hurt, confused, scared....I am finding it hard to put a prayer together.  All I keep saying  is "please God bring them peace."  As I hugged Kristie last night as she sat by Justin's side I thanked God for allowing me to be a part of their lives.  They are an amazing family and I have come to love Justin and Kristie so much.  I hurt for them as only a mom of a child with cancer can.  I want so desperately to make things better for them.  I know I can't and that hurts even more. 

Thank you for believing in the power of prayer.  Thank you in advance for your petitions on their behalf.

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Thursday, December 29, 2011

Tomorrow

We are headed back to St. Jude tomorrow. Going in for a dreaded weight check. I'll post after we meet with Dr. W.

Right now we are driving home from our Christmas vacation to East Tennessee. Anyone want to come help me unpack??

Wednesday, December 28, 2011

Making a blog book

This is the site I use :

www.blog2print.com.

It's really, really user friendly and I have used it for 3 books now. I am quite sure there is a fancier site for those of you who have a lot of publishing experience. I don't have that or much time so this site works best for me.

(I am not endorsing any one site. Just sharing which one I use)

Happy book making!!

How it Happens

Ever wonder how you can be in such a good "place" in your life and then all of a sudden things take a turn in the wrong direction, quickly?  How you can feel so close to God and feel so secure in your Christian walk and then all of a sudden you start doubting the one who gave you life?  Well, here's how it happens (in my life at least):

When I get scared, confused, feel as if things are spiraling out of control, I lean so heavily on God.  I pray--oh, how I pray. (Like when we were last faced with this feeding tube issue.) I pray with such amazing fervor.  And I mean every word that I pray and I truly believe God can and will answer those prayers.  Then things begin to settle down and my mind is removed from those issues that were burdening me and I get distracted by everyday life.  My kids, my house, my husband, my friends.  All of a sudden, those fervent prayers decrease to a morning prayer and night prayer.  You know, when I find time. 

I start trying to work things out on my own.  I start answering my own questions, solving my own problems.  And then....BAM!  Smacked in the face again by the reality that I have abandoned the very God that has so many times rescued me from myself.  Today is one of those days. 

Jack has been sick, Lucy has been sick.  I am scared that these past 3 days have pushed Lucy back so far that she is going to end up with the G-tube after all.  We are having to make some hard decision about school for her next semester and I have been making myself crazy with my calendar trying to make it all happen. 

As I stood in the shower this morning with my mind racing with a list of to-do's a mile long I just lost it.  I cried and cried.  I am angry with myself for doing this again.  Why?  Why do I do this all the time?  Why can't I just live a life of constant submission to God?  Things sure would be a lot easier and a lot less stressful if I would.  This will be a struggle for me the rest of my life.  Thanks to this type-A personality I was "blessed" with, letting things go just isn't my cup of tea. 

So, here are the things I am letting go of today:

1.  We have decided not to send Lucy back to school in the spring.  2 things are going to have to happen.  We either have to find a tutor that can come in, or she can go to, every day for at least 2 hours a day.  Or, I have to find a sitter who can come over every morning and watch Jack so that I can teach Lucy.  I know what I want to happen--I want to find a tutor.  However, I am open to whatever God wants.  I just need to get an answer soon.  There I go again!  This morning I had typed out an email/text sending it to every person I know asking for suggestions for tutors or sitters.  But I never sent it.  Something just didn't feel right about it.  I am going to sit back for a few days and see what will happen.  God will answer this for me.  Just not right this minute.

2.  I am worried about Lucy's weight.  She is so weak.  She has not played with her cousins at all this trip and has spent most of her time curled up on the couch.  I want so desperately for her to be normal again.  It really, really makes me sad and angry.  But I know I can't force her to be something she is not ready to be yet.  I know she will get there.  It is just going to take a lot of time.  We go back to St. Jude on Friday and I will heed the advice of the Dr. W.  If she feels we are too far behind the curve, then a feeding tube it will be.  I will accept it and move on and be very grateful that I got to have my family all under one roof for Christmas.

3.  Fear of the future.  And when I say fear I mean total, gripping fear that makes me want to vomit.  Yesterday Erik and I did a little after Christmas bargain shopping.  I found a major steal on some little knit dresses for Lucy.  Out of habit, I picked up a few Christmas prints for the next year.  As I was looking at them I allowed myself to think the unthinkable.  "What if she's not....."  I can't type it.  Thinking it was hard enough. 

So, this is where I am today.  I'm a mess.  But I have history to look to and from my worst messes is where God shines the brightest. 
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Scans

Our dear friend Kellan is having her 3 month post treatment scans today. Please say a prayer for clean scans and peace for her parents.

Tuesday, December 27, 2011

Ugh

Jack is sick. Coming from both ends. Sorry. I know that's gross. Lucy apparently didn't get rid of her CDiff on her last antibiotic so She is sick again. Started 2nd round of meds today. Let's just say things here aren't so great. Merry Christmas to us!

FINALLY!!!

On December 27, 2011 I finally finished posting for 2010.  Woo hoo!  Now I can print my 2010 blog book AND my 2011 blog book.  This has been weighing on me for some time now and thanks to some great family members who are occupying my little wild man I was able to finish today.  If you would like to see the posts, here are the links.  It was very sobering looking at pictures of a healthy, happy Lucy.  But it gave me a lot of hope for the future.  I'm just ready to have my family whole again.

http://erikandkatekrull.blogspot.com/2010/12/all-dressed-up.html
http://erikandkatekrull.blogspot.com/2011/11/random-holiday-fun.html

http://erikandkatekrull.blogspot.com/2010/12/christmas-morning.html

http://erikandkatekrull.blogspot.com/2011/12/christmas-2010-east-tennessee.html

http://erikandkatekrull.blogspot.com/2010/12/more-christmas-pictures.html


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Saturday, December 24, 2011

Christmas

Tonight we attended a Christmas Eve service at a local church.  It wasn't "our" church, but what I realized when I was there was that it didn't matter.  We were all there with the same purpose.  Preparing our hearts for the celebration of the birth of our Savior.  It was a wonderful service, followed by Christmas Eve dinner with my parents and brother. 






The reindeer are fed and the children are snuggled tight in their beds. 


Thank you ALL for being a part of our lives.  I feel as if my family has grown in a unimaginable way this year.  I wish you all the peace and blessings that only God can bring you in the years to come.  May you all prosper and be blessed with good health.  Thank you for loving our family. 

Merry Christmas!

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Friday, December 23, 2011

Ugh-Oh!!

This is what happens when you leave food on the table at our house. 




The adventures never end with this one!

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Thursday, December 22, 2011

Time

Time...something I don't have a lot of these days. 

Time...all Lucy needs apparently. 

Gained another 2/10th of a kilo today.  That comes to almost one whole pound (.9 pounds) in one week! 

God has this.  He really does. 
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Wednesday, December 21, 2011

LeBonheur Christmas Dinner

For all of you who have asked about and want to help with the Christmas Dinner, here are the details:

We will be serving Friday night, the 23rd.  I know its the not the same as Christmas Dinner, but that's the last day that Wells Kitchen, the caterer, is open before Christmas.  And with things so up in the air with Lucy, its the best we can do. 

That being said....we will plan on serving dinner at 6:30 on Friday night.  If you are interested in helping, in ANY way, I need to know.  We will need a few servers (although not too many), we need some gallons of tea, some desserts made and we will still take monetary donations to pay for dinner.  We also need paper products: salt and pepper, plates with dividers, solo cups, aluminum foil and plastic serving utensils and well as forks and spoons. 

The 7th floor is so excited about us coming and it is such a huge blessing to the families that are spending this holiday facing life threatening illnesses.  Please know that your contribution, no matter how big or small, is so appreciated. 

I need to hear from you if you are interested in helping in any way.  Please email me at k8krull@gmail.com

Thank you so much and Merry Christmas!!!

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Update

At Lucy's doc appointment yesterday she had gained 1/10th of a kilo.  Clearly not much at all, but at least she did not loose any.  She will go back tomorrow for another weight check.  I will post again tomorrow.

Disney pictures will come eventually.  I'm thinking its going to have to wait until Erik is home for a few days during Christmas.  Jack is very jealous of the computer.  He doesn't like to share me with anyone or anything :)

Thank you all for your continued prayers and support.  Merry Christmas to you all!
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Monday, December 19, 2011

Encouraged and A Christmas Gift

I just want to say thank you to all of you who have sent encouraging comments to me via email or this blog.  I have never felt so uplifted as I have this past week.  And I have to tell you, I think your prayers are working.  For the past 9 months I haven't allowed myself to wallow in self-pity and despair.  But this past week I completely swam in it.  I was so depressed.  The weight of the stress that I was living with was about to break me.  Last night, even, I went to bed at 6pm and woke up 6 times throughout the night with an upset stomach.

But this morning the Lord answered my prayers and I awoke with a renewed sense of hope and peace.  Lucy has been eating better the past 2 days.  I don't know if its enough to keep us free from a G-tube, but its progress.  Even if she ends up needing help, I can say that we all did our best to clear the hurdles.  That sweet little girl has tried her hardest to eat.  God love her.

So, thank you all.  Thank you for your sweet and caring words.  Thank you for your prayers.  Thank you, once again, for loving a little girl that you may never meet this side of heaven.  I may not respond to your comments, but I promise I read them.  Every single one of them. 

And here is a bit of encouragement for you.  If you have not spent all of your Christmas budget and are looking for the perfect gift for those "hard-to-shop-for" relatives and friends, let me suggest Compassion International.   Compassion International "exists as a Christian child advocacy ministry that releases children from spiritual, economic, social and physical poverty and enables them to become responsible, fulfilled Christian adults."

My girls were given the task of going through the gift catalog and picking out what they would like to give.  We are doing these gifts in honor of special people in our lives.  They chose several items and I narrowed down our list to a grouping that fit our budget.  I was able to print our some great cards detailing what the girls chose that I wrapped and presented as gifts.  My grandparents seemed pretty honored to have a goat bought in their honor!  I only wish our family could do more. 

I am encouraged today by you, my dear blog friends, and by my God. I don't know what our doctor appointment will bring tomorrow, but I do know that my God has it under control.  As my friend Sarah D. would say "he's got this."  Yes, yes He does.

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Friday, December 16, 2011

And So It Goes

I am posting from my phone so this will be short and sweet. Today we met with Dr. W. I love that woman. She was so honest and straight forward and reaffirmed the things that we both knew. 1) Lucy has lost too much weight. 2) We are fighting a major uphill battle. 3). We don't have much time to make hard decisions. 4) even if she does start eating we still have to worry about refeeding syndrome.

So with that being said we left the hospital with a new appetite stimulant and 3 days to gain weight. We will go Tuesday for a weight check and will know then if Lucy is destined for a feeding tube.

Fast forward to post doctor visit. Lucy asks for spaghetti and we set out on a mission to find some. Not many places carry to-go spaghetti. We find some and Lucy goes to town. I haven't seen her eat like that in months. It was so awesome. After she was done we gave her her first dose of medicine.

Fast forward an hour later. Lucy has a violent reaction to her new medicine and mom and dad are scared to death. Panicked called to Dr and one scared little girl. Everyone agrees that her little body is just too run down to handle this medicine.

Lucy is sleeping in my arms right now as we sit in a dark room. I am praying over her with emotions that only a mom can feel. It's in God's hands. I am handing it over to Him completely. I trust that He only wants what's best for her and I know he will provide the answer. Right now I am trusting in Him. That's all I have left.

And wouldn't you know. This really isn't something I can control after all.

Second Trip

Well, we are headed back to the hospital today.  This time we are going specifically to meet with the doctors to discuss a game plan for Lucy.  I prayed all night for wisdom and a clear mind.  I have to admit that my brain is a little murky right now.  While I want to fight the feeding tube with all my might, the mother in me sees it as something that I can control.  It is the first thing in 8 months that I can physically do that will make my baby better.  Does that make sense?  Cancer is cancer.  Chemo, radiation and lots of prayers are the only answer.  I can't do anything in my own power to make her cancer better. 

Eating though, and weight loss, that's a different story.  I went to bed last night with a near migraine from stress and the tears that I shed yesterday.  This is literally eating me alive.  I feel as if I am watching my baby starve to death and there is not much I can about it.  Except this stupid feeding tube.  With it, I can actually CONTROL something in our lives again. 

But is that what God wants for my baby?  I am asking for wisdom so that I can see past my own fears and trust that He knows whats best.  I am praying that God will give the doctors wisdom as well.  I am praying that the answer will be crystal clear today, with absolutely no room for doubt. 
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Wednesday, December 14, 2011

A Happy Moment Today

Rough day today but for a moment she enjoyed the nice weather.

A Happy Moment Today

Rough day today but for a moment she enjoyed the nice weather.

Its a Start

One of the best pictures of the whole trip, taken by my SIL Cheri.  When Lucy saw Minnine Mouse she hugged her for no less than 5 minutes.


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Tuesday, December 13, 2011

Another Bump in the Road


(the girls and Jack and I grabbed from Fro Yo today while we waited on Lucy's special medicine for her tummy)

Just as I was preparing my Make a Wish revealment post yesterday, Erik and I made the decision to take Lucy back to St. Jude for some ongoing stomach issues she has been having.  I won't get into details, but just know that she has suffered from lots of intense stomach cramps and diarrhea.  Another thing that has been concerning to us is the amount of weight she has lost.  We knew that once she stopped receiving TPN, there could potentially be some weight loss.  However, she has lost almost 4 pounds since she began eating on her own.  So, all this combined, I knew we would all rest better if we made a visit to our favorite doctor in the world. 

Lucy had to have an IV started once we got there.  That was a miserable experience to say the least.  She cried so much after that trauma that she fell asleep in my arms until we got to see Dr. W.  Thankfully her electrolytes and vitals all looked great.  Her ANC, platelets and WBC were all great, too.  She did receive fluids before we left, just to be on the safe side.  We didn't leave the hospital until after 9pm. 

While we were there we discussed the weight loss issue and the team all agreed that she had fallen below the threshold of acceptable weight loss.  Her poor little body looks so pitiful.  Lucy is also not making great strides in PT either.  We all feel as if that is a result of her not having enough caloric intake throughout the day.  She is just too weak and her muscles don't have the fuel they need to grow.  So...that being said we have some major hurdles to clear still ahead of us. 

I would be remiss if I did not add that there was talk of a feeding tube.  The very thought makes me sick to my stomach, but I know that something has to happen.  Something has got to change. 

This morning the NP called and said that Lucy did test positive for C-Diff.  I can tell you that I have never been so happy to hear that my child had an intestinal disease.  You can only imagine the fear that I entered the hospital with yesterday.  (Stomach cramping was the major symptom that led us to her initial diagnosis.  I was a wreck all afternoon.)  While this is a nasty little bugger we have to deal with, it gives us some hope that within 48 hours she will begin to have relief from the diarrhea and stomach cramps.  Once those subside we hope she will start to eat more.  At least what she does eat will stay in her body.   

So we have a game plan and we are going to watch her weight like a hawk.  If we don't see improvement in the very near future, we will be forced to consider the unfavorable options before us.  I know so many of you have poured your soul into praying for my little girl.  For that, I am forever grateful.  But if there are any prayers for her left, please ask God to grant her an appetite and the ability to fight this infection. 

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Make A Wish


I will never forget the day that Dr. B's head nurse, Tracy, walked into our hospital room, probably a week after Lucy's first surgery, and told me that she had just submitted Lucy's name to Make a Wish. Not knowing much about Make a Wish, except that it was something sick children got to do, I freaked out. In an instant, tears began streaming and I bravely asked "does this mean Lucy is going to die?" That's what I thought it meant when you were granted a wish. I think Tracy was taken aback by this rather frank question and quickly reassured me that Make a Wish was so much more than that.


(Lucy and Becky)

This quote was taken from the Make a Wish website: "a wish experience is frequently a source of inspiration for children undergoing difficult medical treatments and a positive force that helps them overcome their obstacles. A wish experience is often more than a dream come true: It’s the catalyst that rekindles their belief in themselves and the promise of their future."

(Lucy with Allie and Elizabeth)

Do you know that I actually had someone send me a message that our family was greedy and selfish for accepting a trip from Make a Wish. That we were cruel for stealing a child's wish since Lucy was on the mends. I obviously did not respond, since there was nothing I could say to such an ignorant person. However, I stand firm in believing that if anyone deserved a wish come true, it was Lucy.


I do pray that Lucy is healed from her cancer. I also pray that it never, ever comes back. But the sheer hell that my child went through for nearly 8 months made her deserving of this trip and a lifetime more to come. No one will ever know how much hurt Lucy suffered, how this cancer will change her life and what challenges she will face going forward. I love the quote above because moving forward after treatment is a huge challenge. There is such a mindset that these children acquire that makes it hard sometimes to get on with life. They have been knocked down for so long that many forget what its like to live "well."


On Thursday, December 1st, Lucy's class was invited to participate in a Christmas party at my Alma-mater, Covington High School. Little did she know that this was the day she would be granted her wish to visit Disney World to meet Buzz Lightyear! The student body, under the leadership of the Student Council, adopted Lucy as their Make a Wish grantee this year. Our family was honored that our local school was able to grant Lucy's wish. It meant so much more being so personal. A huge thanks to Mrs. Becky Todd for agreeing to make this happen at CHS!!!



The school put together the most wonderful revealment and we were literally blown away.  There were crafts for the kids to do...


There was the reading of the specially written story all about Lucy and her fight from beginning to end..


And a visit from Santa himself...(thanks Walt!!)


Ella and Jack were made to feel so special and Erik and I even got some TV face time!  It was hilarious. 





(this is Erik and I trying to hold ourselves together when they had someone sing "When You Wish Upon a Star.  Serious waterworks!)

 


Me trying to describe the days' events would never do the experience justice.  All i can say is "thank you" from the very bottom of my heart.  "Thank you, thank you, thank you."


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Monday, December 12, 2011

Racing for a Cure

The St. Jude Marathon and 5k was held on Dec 3rd.  Team Lucy was well represented by friends, family and strangers alike.  Of the 16,000+ runners, I would take a guess that very few actually personally know a child suffering from a life-threatening cancer.  But like with Lucy, so many people have grown to know and love her through the advent of social networks and the old-timey prayer chains and word of mouth.  So, even if there was not a blood relationship with a child suffering from cancer, there is an emotional attachment for probably each and every runner. 

St. Jude is an amazing hospital and will be a part of our lives forever.   Because of the generousity of people throughout this world, St. Jude is able to help families like ours have HOPE.  Hope for a future, hope for a cure and hope for a life without cancer.  Thank you to all who participated in the Marathon, Half-Marathon and 5k.  Thank you to the ones who walked in honor of Lucy.  And thank you to all who walked in honor/memory of the thousands of children who suffer from childhood cancer. 

A special thanks to those I know that came in from out of town.  It was wonderful seeing so many friends from college (especially all you Pi Phis!)  A huge thank you to Kristie Lyons for organizing our huge group and designing our great shirts!  Team Lucy looked fabulous!!!









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