Thoughts After the Walk

I have been waiting for the words to come to me, so I would be able to convey what Saturday truly meant to us.  

Walk Goal: $80,000

Krew Total: $82,000 (now over $85,000 and counting!)

Walk Total:$106,000 (and counting)

Number Kadyn's Krew members counted at the walk 187!

A week later,  I am still waiting because there really are no words that will suffice.  Luckily, my mom is much better at putting her feelings on paper.  So, I will share her thoughts after the walk.

We are stunned and amazed by the incredible generosity of family, friends, and this community! We are certain there are no more generous hearts anywhere. 

It is impossible describe the feelings we had when we looked around at the Great Strides Walk last weekend and saw so many people gathered together because they have been touched by the reality of Cystic Fibrosis and the challenges that our granddaughter and so many others face each day. 

It is understandable, perhaps,  why a parent, grandparent, aunt or uncle of a child with CF would be passionate about dedicating time and resources to fighting this disease. They know personally, first hand, its devastation and cruelty because it affects someone they love. 

It is quite another thing to see friends, acquaintances, fellow workers and total strangers join us and rally in support of this cause. It’s difficult to comprehend this kind of generosity and compassion.

We met a pediatric resident during our last stay at KC Children’s Mercy who told us he is considering specializing in pediatric oncology.  When we asked why he would choose to work in a field with such critically ill children, he said it’s because they have such wisdom and have so much to teach us about living. 

Perhaps that’s why children like Kadyn with CF or other life threatening diseases pull on our heartstrings so forcefully and compel us to want to do something to add to their lives.  They have a way of teaching us how appreciate every moment and to live each day like it’s our “best day ever”. They make us grateful for the blessings of our healthy children, but they also make us realize the blessings of those who see the world through the eyes of ones who don’t take their days for granted. 

Thank you for caring enough to help us help them. 

Jack and Betsy

There are not enough thank you's in the world to express our gratitude.  Kadyn's Krew, we love and appreciate you all so much!

"This is the best day I've ever had!"

No doctors, no tubes, no shots, no IVs, just pampering.  "Kadyn's Day"  and what a day she had! I am still so overwhelmed by it that I find myself crying at the littlest things!

"Kadyn's Day" happened because our dear, sweet friend Somer (hairdresser at W3 Salon) wanted to do something for Kadyn and to raise money for CF.  Kadyn was scheduled for a princess up-do this morning; however, we were not prepared for the royal treatment she received! Walking up to the salon we saw a large banner full of Kadyn's pictures, inside was a princess haven. Pink balloons, Disney music, pink bake sale items, and her throne was decorated completely!   She was showered with pink princess  presents. For once in Kadyn's life she was speechless.  There is no way for us to explain how magical it was and how much we appreciate all of the love and work that went into making this day special for our princess.  She goes through a lot.  For her to have a day of nothing but princess fun is beyond words!  Somer, everyone at W3, and everyone else who took part in "Kadyn's Day", we thank you with every bit of our hearts.

We love you!

Home...Recap

When my mom, Koy, Kadyn, I went to KC on Sunday night we expected to be home Monday afternoon.  Apparently, God had other plans...

Kadyn and I were called back to Interventional Radiology at about 9:00 Monday morning.  We walked into a large Operating Room and immediately Kadyn was nervous.  I told the radiologists she had not had pain meds of any kind.  They assured me this was a routine procedure. The track in her stomach was well established, so they would pull the old tube and insert a new one...easy as that! Luckily, I was able to stay with her during the procedure and we watched the screen of her belly as they tried inserting, reinserting, removing, conferring, (repeating) for over an hour.  Kadyn had some choice words for the "radiologies", as she called them.  I just wish I could remember them. Finally, they told me they were going to have to take a CT Scan to figure out why the tube would not go back in.  This is where things started to speed up....

CT scan was taken
Radiologists showed me the scan and explained that there appeared to be a tear in the track and some leakage from her cecum into her system.  He explained that Kadyn would need be admitted, put on IV antibiotics and Infectious Disease would be in to see us. Another lady was there who told me the GI team was notified and we needed to go to admissions to get checked in, a room was ready for us.

Sitting in admissions, Kadyn began to be in a lot of pain.  We had to wait for over an hour for our room and during that time the pain continually increased.

Once in her room, teams of doctors came in asking me the same questions over and over again and evaluating Kadyn.  Each time someone looked at her stomach the bloating had increased and her coloring decreased.  Once I had finished talking to floor doctors, surgeons,  GI team, and Infectious Disease  doctors, the surgeons came back in and told me Kadyn was showing signs of infections. They would need to operate on her right away.

The surgeon explained they had to find the hole and repair it.  They would try to stay laparoscopically, but if they could not find the hole they would have to open her up to find and repair it.  She went into surgery and prayers went up!

So many people were lifting Kadyn up in prayer and we felt every single one of them.  We knew there was nothing we could do but pray and God was taking care of her.  In our eyes, a miracle happened.  They were able to stay laparoscopically, clear what they saw as leakage, and put a new button in her track so we could continue our home clean outs.  We really could not have received better news.

Kadyn got out of the hospital on Thursday evening.  I can't believe I am saying this, but she looks better than she has in months!  Koy and Kadyn caught up on their sleep in a hotel Thursday night. Kadyn is still cautious of her belly and her new button, but starting Friday she was running and playing like usual.

We believe in the power of prayer and that miracles do happen.  Our baby girl was sick and getting sicker by the minute.  God healed her and we have all of you who sent your positive thoughts and prayers to thank.  Thank you! Thank you! Thank you!

We love all of you very very much!

Thursday

I accidentally put this on Facebook and forgot to put it on here as well. This was Thursday...

Guess who got the O.K. to go home! We have to wait for her last round of IV antibiotics and RX for home antibiotics, but then as Kadyn says "We'll be out of here in NO time!"
Thank you for all the prayers and positive thoughts that surely put us on the fast track home!

Wednesday Night

Big day today! Kadyn was able to get up and walk around. She was slow and kinda dizzy, but she loved being up for a bit.    She ate what she calls "hard food" and tolerated it well. All steps in the right direction. Kadyn also did her first new tube treatment (in the picture above) and so far so good!  We are hoping we will be able to go home tomorrow.  I would love to post more and get some more pics up, but I can hardly keep my eyes open.  Again, thank you all for giving us so much strength through your prayers and love.  We feel them and we send our love back to you!

Tuesday Night

Kadyn did ok with the clear diet today.  She had juice, ice, a popsicle and even some bites of jello. Unfortunately, each time she ate her belly hurt almost immediately.  We are hoping this is because it was empty for so long.  Kadyn has been in quite a bit of pain today and required more pain medicine.  I think the plan for tomorrow is to try using her new g-tube/Mic Key button to give her go-lytely treatments.  My mom and Koy have been with us the entire time which is always good thing for Kadyn (and me).  Ryan and Papa Ron came today, so we had some great distractions.  We pray that tomorrow Kadyn will have less pain.  Also pray, whatever steps we take are positive and in the direction that would send us home sooner rather than later.

Thank you is no longer enough for the outpouring of support and love.  We feel so comforted by your all of your prayers and kind words.  It really does keep us going! We are extremely blessed! 

Love, 

Katie

www.kadynskrew.com

Proverbs 3:5 Trust in the LORD with all your heart and lean not on your own understanding;

No plans yet...

We have been in a holding pattern today. Kadyn is very sore but doing well. Fever has stayed down and we just got the ok to try liquids. That means she finally gets her popsicle! Definitely steps in the right direction. If the liquids stay

down and do not cause more pain we move on to the next step. We are still waiting for docs to decide what that step will be. Praying for the liquids to go down with no pain and that we continue to see positive changes.

We continue to be overwhelmed with your prayers and love. Thank you more than words can say!

Humbled

Right now, I am sitting in a chair facing Kadyn who is lying in a hospital bed...again.  I am looking through the texts, emails, and posts people have sent and I am so completely overwhelmed.  I have been trying to type my feelings for over an hour and it is just too hard! There is absolutely no way to express how much we appreciate all of the prayers, thoughts, support, and love.  Kadyn is such a special little girl.  She is stronger and more brave than I could ever be! Her smile and spirit are contagious.  While getting her IV today, more and more nurses kept coming into the treatment room to listen to her.  One nurse finally said, "I guess we know who we need to visit if we are ever having a bad day"

Yes, she was talking about the 3 1/2 year old who was having tremendous stomach pain,  had just been poked and prodded for over an hour without any pain meds,  told she would not be going home as she had planned, but spending the next few nights in the hospital, had not had a piece of food all day, and then taken to the treatment room for an IV where she was able to make numerous people smile.  

God is so great! He made Kadyn exactly as she needs to be for the obstacles she will endure.  

Today has been a very scary and unexpected day.  Each word spoken, typed, and written about Kadyn was felt by her and the rest of our family.  Kadyn was lifted up in prayer by so many people today.  There is nothing more powerful than a group of people praying to God for the same thing.  THANK YOU!

Kadyn will get better.  She has been on a very hard road for a long time.  She is still fighting.  We continue to pray!

THANK YOU! THANK YOU! THANK YOU!

Love, 

Katie

Great Strides 2012 Kadyn's Krew

Kadyn's Krew Kickoff

Attention Kadyn's Krew and friends..

The Great Strides Walk for Cystic Fibrosis is only a month away so we're getting into high gear!

We would like to kick off this year's effort by first saying thank you to all of you who have contributed in some way to Kadyn's Krew. It is because of you that we have been able to collectively raise over $100,000 for Cystic Fibrosis over the past 3  years!

As a small token of our gratitude for all you have done and continue to do for us and for all those who are battling CF, we would like you to be our guests this Friday, September 14th, at a Kadyn's Krew Kickoff.

Please join us from 6-8 at the SRC Conference Center directly behind the SRC corporate offices at 531 S. Union.* We'll enjoy food, drinks and music while we catch you up on the past year and get our 2012 Krew organized and ready to make more Great Strides for CF this year.  We will be passing out "Change for a Cure" jars at this time too!

Hope to see you there!

*Turn north off of Cherry on Union just west of Hwy 65

If you can't make it to the Kickoff but, would like...

• To register for the walk please go to www.cff.org/great_strides/katiecarroll (mobile devices will not show full site)

Even if you signed up in years past, please do so again so we'll know who we can expect to be walking with us!

•  A  "Change for a Cure" jar please email us at kadynskrew@gmail.com and we will get that to you!

January 2012-August 2012 Update

2012 has been full of challenges for Kadyn.  We usually like to sugarcoat things as much as possible.  However, there is just no way to sugarcoat what Kadyn has endured the past 8 months.   When her treatment regime was increased due to the cecostomy in December, we looked forward to having "our Kadyn" back pain free. But as we all know,  life does not always go as planned.

Here is the rundown of hospital stays since November:

• 5 days in November for a bowel clean out
• 8 days in December for a clean out and cecostomy
• 1 day in February for chait door placement (step 2 cecostomy)
• 3 days in April for a clean out, endoscopy, biopsy, colonoscopy, and motility testing
• 4 days in August for clean out and ct scan

Total days in hospital = 21

Today...we are waiting to find out where we go next for treatment (Buffalo, NY or Columbus, OH)

From the motility testing done in April, we know that Kadyn's intestines do not move like they should.  We are searching for the best solution and hoping that our next hospital stay will be to fix this ongoing problem.

I read a quote today that stopped me in my tracks.

You were given this life because you were strong enough to live it. 
                                                                                                                                               -unknown

This is so true.  Kadyn was a born fighter.  She has this unstoppable spirit and an overwhelming love of life.  I was looking for pictures of Kadyn for the Kadyn's Krew website and as I scrolled thru the thousands of pictures I have of her and Koy,  I realized that she is smiling in 99% of them.  I truly believe it is because Kadyn knows what it is like to have days no one could endure with a smile.  This, in turn, makes all the other days that much brighter and makes her that much happier.  I have had friends tell me that they love to watch Kadyn when she is experiencing something new because the look on her face is that of pure joy.   For me, it is truly one of the best sights in the world.

Koy and Kadyn have brought so much joy and love to our lives.  They are true blessings.  While Kadyn's diagnosis was one of the hardest realities to grasp, we are learning to live our lives to the fullest and we refuse to waste a single second.  Having a child with a life-threatening disease has taught us to do just that.  We pray every day for a cure, and when we aren't praying, we are playing, laughing and loving on the two greatest gifts we have ever known.

We have been overwhelmed with the love and support of our family, friends, and even strangers who have joined our fight against CF.  There are no words for how much we appreciate all of you.  We know we could not do this without you!

Home Sweet Home

We got home tonight and it feels so good! Once we get settled I'll post more about Kadyn's progress. Thank you and lots of love!

A New Day

Kadyn had a MUCH better day today! She even got out of bed, walked around, and ate a little bit. Her belly pain was a lot less than yesterday. So, as of now, we are still on track to go home tomorrow. Good thing because Gamma and Koy headed home today and I'm not sure Kadyn is going to believe "Koy is sleeping, but will be back soon" much longer.

I posted some pictures of the day. You'll see Kadyn had a surprise visitor that definitely put a smile on her face. This has been a very difficult hospital stay. It is never easy to see your child hurting or in pain. There are many bible verses and prayers that have played over and over in my head while watching Kadyn endure all she has this week. However, I keep coming back to the song Blessings by Laura Story. Here are some of the lyrics, I am sure you will see why it brings me so much comfort.

We pray for blessings
We pray for peace
Comfort for family, protection while we sleep
We pray for healing, for prosperity
We pray for Your mighty hand to ease our suffering
All the while, You hear each spoken need
Yet love us way too much to give us lesser things

Cause what if Your blessings come through raindrops

What if Your healing comes through tears

And what if a thousand sleepless nights

Are what it takes to know You’re near

What if my greatest disappointments

Or the aching of this life

Is the revealing of a greater thirst this world can’t satisfy

And what if trials of this life

The rain, the storms, the hardest nights

Are Your mercies in disguise

We are so thankful for all of you and the support we receive daily. Thank you never feels like enough. We love you!

Relaxing

Koy doing anything just to be close to Kadyn

SANTA!

"I'm fweeee"

We've been waiting for that smile for awhile

So much work to catch up on!

Recovery

We had quite a night last night! Kadyn developed a fever of over 101 before bedtime. The nurses checked it hourly and it finally broke, with meds, around 3 am. Kadyn woke up in a relatively good mood, but as the meds wore off she began to change as well. She had a very rough day and has been on pain meds all day today. Because of the fever, level of pain and distention of abdomen they took her down for an x-ray. She is extremely full of gas, so they will definitely keep an eye on her. Tomorrow is a new day and we are praying for Kadyn's comfort as well as healing. We are definitely tired, but I have to say we would not be nearly as comfortable as we are without my mom. She is a true angel! She dropped everything in a second and was on the way with us. Staying nightly at a hotel with Koy, reading to Kadyn, entertaining both, sitting with me, you name it she does it and we could not do it without her. Thank you mom!!

Thank you friends and family for your continued love, support, and prayers!

We love you!

Tonight

Kadyn has been sleeping a lot since she got out of surgery. When she does wake up she is pretty uncomfortable. We are hoping her meds will help with that. I'm updating from my phone and it is not as easy to blog on as the computer. Hopefully, tomorrow I can post some pics. Thank you so much for all the prayers. Like we have said many times, God is so great! We love you all very much.

#4

Kadyn is done and all went well. Thank you God! I haven't see her yet. They said they are going to wake her up a bit before we can see her.

#3

She's in...

It is the Lord who goes before you. He will be with you; he will not fail you or forsake you. Do not fear or be dismayed. (Deuteronomy 31:8)

Surgery Day update 2

They are still planning for surgery at 1:00

Surgery Day

As usually Kadyn is an anomaly...

They took Kadyn for an x-ray this morning to make sure her bowel was completely clear before sugery. Since she has been on Go-lytely and only clear liquids since Saturday afternoon you'd think she would be clear. Well, she isnt...
All of us are pretty confused. So, they have already given her a couple enemas and a suppository this morning. Her output is the opposite of clear, so we are waiting to find out what we do next.

Her surgery is scheduled for 1:00. We are hoping she is clear by then and we don't have to postpone. Kadyn is very hungry and just like her mama, an empty stomach makes her a bit grouchy! She just fell asleep and despite everything this morning she looks like a peaceful sleeping beauty. God is great!

I'll post when I know more. Thank you for all the calls, texts, etc. We feel your love and support and it is so appreciated!

Day of Waiting

Monday (I think)

Ever been locked in a small hospital room with a highly emotional, tired, and extremely hungry, but can't eat, two and a half year old...girl? I sincerely hope not and I absolutely do not recommend it :)

Today was our day of waiting. No meds, needles, or new tubes... just hanging out. Gamma and Kadyn did some crafts and made an adorable elephant puppet. We played princesses and watched Beauty and the Beast. Alison came for a visit and brought a super fun Dora pack and Kadyn was pleasantly surprised when 3 balloons with some of her favorite things arrived from the Browns. (THANK YOU!!)

Things only got better when daddy and Koy arrived. The kids played and fought just like they would at home. Ahhh the little things :) Ryan and I both teared up a bit when Koy wanted so badly to wake Kadyn from her nap. When she finally woke up he crawled in bed right next to her and said "Hi Kadyn!! Hey big grrrl! You wake up? You wanna play with me?" He loves her so much...

We talked to Kadyn's GI specialist this evening. Kadyn will have a cecostomy tomorrow. He is thinking that she will need to stay in the hospital until Friday to make sure everything is working correctly. Because this surgery may not be a solution to her problem I was very curious about the game plan from here on out. This is basically how he explained it....

Her bowel is not working properly and we need to figure out why. Right now, the only sure way to clean her out is thru an NG tube. This is a very traumatic and uncomfortable experience for her, so we are doing the cecostomy to make this process easier on her and improve her quality of life. While we are doing this we are also giving her bowel a chance to rest. It is extremely stretched out and he is afraid that the testing they need to do would be compromised because of the size of her bowel. So, instead of doing a diversion surgery to let her bowel rest this is a much easier procedure to accomplish the same thing. If we are lucky, the cecostomy is all we will need. She will keep the tube in and her bowel will heal itself. He said it could happen! If not, we will do motility testing to find out what part is not working, cut that part out, and sew the working parts back together. Obviously, we are praying for the miracle!

I cannot adequately express how much we appreciate your kind words, positive thoughts, and prayers. Kadyn is an incredible little girl. She fights for what she wants and wins. We know this battle will be no different.

Tonight, Koy, Gamma, and I are in the hotel while Ryan and Kadyn are at the hospital resting up for her big day. We pray for comfort and peace for Kadyn, wisdom and steady hands for the doctors working on her, patience and quick healing with manageable pain in the days to come.

John 14:27 Peace I leave with you;my peace I give to you. Not as the world gives do I give to you. Let not your hearts be troubled, neither let them be afraid.