3.30.2013

Ready for Him

The longer I stay on this earth, the more I yearn for my Savior to return.  I can say that will all honesty I am ready to go Home.  My eternal home.  I just don't want to leave until I know all my loved ones--and ones I don't know--are ready to go home, too.  Are you ready?  If not, please make that decision tonight.  Don't wait.  

Until then, we will celebrate Jesus on this earth and remember what He's done for us all.  Tomorrow is Easter Sunday.  I look forward to cheering "He is Risen" tomorrow.  We were all pretty proud to proclaim that tonight, too.  



While the real reason for Easter was ever present on our minds tonight, we couldn't help but to enjoy the secular part as well.  Making cookies, dying eggs and getting ready for a special visit tonight.  







Remember, if you don't have a church home in which to worship tomorrow, please join me and my family.  We would love to have you.  Just send me an email.  k8krull (at) gmail (dot) com.  


**Tonight is the last night to enter the Mucinex sweepstakes. Don't miss your chance to learn about Children's Mucinex and possibly win $100!**

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3.29.2013

Good Friday to You



Happy Good Friday from our family.  

May today be filled with the reminder of the love of Jesus for us all and reverence for his atoning blood.  As we travel today and take in the majestic beauty of God's creation, we are reminded of God's great love for us and this world.  

"For God so loved the world that he gave his only begotten son, that whosoever believes in Him shall not perish but  have eternal life."  John 3:16



**If you don't have a place to worship on Easter Sunday, I invite you to attend First Baptist Church in Covington located at 2105 hwy 59 South.** 

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3.28.2013

Day 2/3 Spring Break





Day 2/3 of Spring Break Vacation.  The mountains are beautiful, the skiing is perfect and the fellowship is exactly what we needed.  Lucy hasn't bounced back yet, though.  The day after she was in the hospital she perked up for about 2 hours, but mainly she spent days 2 and 3 sleeping.  We are trying to make the most of a stinky situation; taking turns skiing and keeping our sick children home.  It's not how we expected to spend our week, but we are so thankful to be here.  God has blessed us with so much.  Tonight I am most grateful for my family and our wonderful friends.

We drove for about 10 miles through the Rocky Mountain National Forest and stopped to have a snowball fight.  It was not too exciting for Lucy, but the rest of us had a blast!

 





 After we were done, we headed into a local town for a quick bite to eat.  Jack didn't think we ate qucik enough.


Lucy spent most of her day 2 and 3 like this:

The other two spent their nights like this:



Days 4,5 and 6 to come

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3.26.2013

Newsworthy


The day of Chemo
A funny thing happened on the way up the mountain.  Sounds like it could be the start of a great story, right? Well, it actually is.  As we were traveling on Friday, we got a call from both St. Jude and LeBonheur's Media Relations.  What transpired over the next few hours was Erik conducting an interview with USA Today and me conducting an interview with The Commercial Appeal (Memphis paper.)

Erik spoke with a reporter from USA Today about the effects of the national drug shortages.  If you remember, Lucy suffered from a Thiamine deficiency which led to temporary blindness due to a national shortage of  multivitamins when she was kept alive on TPN.  Her case has been studied by many doctors and researchers and was presented to Congress last year.  In an effort to keep the pressure on Washington and the pharmaceutical companies, St. Jude has been getting the word out in every media outlet they can.
We were honored to speak about the impact that the shortage had on Lucy's life.

The shortage of medicine in our country is something that is incomprehensible.  One might expect that in a 2nd or 3rd world country, but not here in the United States.  It is unconscionable that a family would have to be told that their child could not receive the Chemo drug that would save his/her life.  I can not begin to understand the agony that a family would live in knowing that there was a drug out there that could save their child's life, but they couldn't get it.

Please help spread this link.  The more pressure we continue to put on Congress, the better chance we have of eliminating this horrible dilemma.  "You're fighting so hard and you're so desperate. I can't imagine knowing that you didn't give them the best option."  Erik Krull, USA TODAY

 http://tinyurl.com/usatodayhoffman.  This is the link to the USA Today article.  
    
            
The second media opportunity we had was with the Commercial Appeal, the local Memphis paper.  The article is below, as you can't read it online without a subscription.  (I did include a link in case you can access it.)  The Go Lucy Go Foundation was asked to fund the creation of a book that was written by one of the nurses on the Neuroscience Floor of Lebonheur.  We were honored to be a part of this process and I love the finished project.  The book is just one more reason why LeBonheur Children's Hospital remains one of the nation's best pediatric hospitals.

http://www.commercialappeal.com/news/2013/mar/26/book-eases-fears-of-patients-and-parents-at-le/



Photo by Kyle Kurlick

Le Bonheur Children’s Hospital neurosurgery coordinator Brittney Lee wrote a book to help patients like Devin Pelt, 10, know what to expect if they're diagnosed with a brain tumor. "The need was so apparent," said Lee, 30, whose job is to educate families about surgery and treatment.

Illustrated by Russ Evans, “Joey’s Wish” features a soc-cer-playing boy who goes through brain tumor surgery.Photo by Kyle Kurlick // Buy this photo
Illustrated by Russ Evans, “Joey’s Wish” features a soccer-playing boy who goes through brain tumor surgery.

Brittney Lee saw a need at Le Bonheur Children’s Hospital and filled it. Her effort is making life a little easier for patients and their families on the 7th-floor FedEx Neuroscience Unit at the hospital.

Lee, 30, the neurosurgery coordinator, a registered nurse and the mother of two, knew how scary and confusing a brain tumor diagnosis is for children and their parents. Lee is often the first face that families see at the hospital after a diagnosis. It’s part of her job to educate them about what to expect in surgery and treatment.

So she decided to write a book to help ease those fears. That book, “Joey’s Wish,” was published last fall, and since then has been making a difference at Le Bonheur, where about 180 brain tumor surgeries are done a year, and it is beginning to be requested by other hospitals.

“I feel like this has God written all over it,” Lee said. “I don’t feel like this came from me. It fell into place too easily. I feel like the need was so apparent, and I’m just humbled that I was the one that got to be able to be the instrument used to put it together.”

The book came together in a serendipitous manner last summer. First, Dr. Fredrick Boop, chairman of the department of neurosurgery, brought back a book along the same lines from an international conference, commenting that it would be nice to have something like it here. Since it was culturally specific, even translation would not make it suitable for Le Bonheur.

“I saw the book, and I knew that the need was there, and it was like it clicked,” Lee said. “So I sat down, and it took me about an hour and a half to write this story.” Her original storyline follows Joey, a typical soccer-playing kid who experiences symptoms, goes to the doctor, gets a diagnosis and goes through brain tumor surgery and recovery at Le Bonheur. In the end, he helps ease the fears of another child.

“I’m a mom of two, a 5-year-old and a 2-year-old, and I read to them constantly,” Lee said. “So I kind of knew the language style to use.”

She had a story, but needed illustrations. Russ Evans, a graphic designer who lives in Pinson, Tenn., near Jackson, saw a Facebook post seeking an artist for the book. Within a week, he had responded, agreeing to do the work pro bono. Soon after, he visited the hospital to get an idea of the setting for his watercolor illustrations.
“It was just a challenge to illustrate something that somebody had had the vision to write,” said Evans, 51, who is the graphics supervisor for West Tennessee Healthcare in Jackson. “It was right up my alley. Plus it’s going to help these kids deal with something that is pretty scary.”

At that point, Lee needed money to produce the book. Enter another angel: The Go Lucy Go Fund, founded by the parents of a Le Bonheur patient in appreciation of the care she received. The fund, which raises money for educational purposes at the hospital, paid for the printing.

“The Go Lucy Go Foundation chose to fund the book, ‘Joey’s Wish,’ primarily because of the memories we have of the day we told our 4-year-old daughter, Lucy, that she has brain cancer,” said Kate Krull. Her daughter, now 7, was treated for medulloblastoma, which is cancer of the brain and spine. “Brittney was able to put into writing all the things we wish we had known to tell Lucy and her sister in terms that they could understand.”

The hospital’s child life specialists and the Family Partners Council, which is made up of parents of patients, vetted the book. Given a thumbs-up, it was printed by the hospital’s print shop. And three months from start to finish, 250 copies were ready to be put into the hands of patients and their families.

“There are so many times when I give patient families their information and tell them what they can expect, and I go home and I think, ‘How in the world would I explain this to my child?’ ” Lee said. “I thought about all that when I was putting the story together.”

She was adamant about wanting the book, which is targeted to ages 3 to 10 but useful also for older children, to reflect the hospital.

The characters are like the people the patients will see. Dr. Awesome is the pediatric neuroradiologist, Dr. Good is the neurosurgeon, Sunshine is the child life specialist, Hope is the physical therapist. “Just little metaphors for them, so it’s not so scary and to give them a feel of the love that we have for them and that we care,” Lee said.
Joey and his mom visit the Wishing Wall in the lobby level of the hospital, and he goes through Bunny Lane before surgery to pick out a toy.

Dr. Paul Klimo, chief of pediatric neurosurgery at Le Bonheur, said the book helps make his job easier. “I think it’s very valuable for the kids and for their families,” he said. “It takes them through a typical start-to-finish journey of a kid that has a brain tumor and needs surgery and postoperative care. It breaks it down in a very easy-to-read-and-understand process.”

There is room in the back of the book for parents to take notes or jot down feelings. A note from child life specialist Jessica Kellough gives tips on how to approach the subject of a brain tumor diagnosis with children of various ages.

Lee said the book is designed for parents to read to their child. “It’s important for the parent. It gives them words to help explain to their own child what’s going on, and it’s important for the child to hear it from someone who is very close to them where they feel safe and secure.”

Tracy Tidwell, director of the pediatric brain tumor program, said the book is “one of the best things that’s happened to our brain tumor program.” She said she’s seen a parent use the book, by making a game of finding the places in the hospital that are in the book.

“I think in the eyes of the child just knowing Joey and knowing that Joey’s OK means everything,” Tidwell said.

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3.24.2013

Unexpected Night

It's not how we thought we'd spend our vacation for sure. In the hospital. And it's not even the one I was worried about!

Lucy went from ok to really, really sick in like 6 hours. Mixture of altitude sickness and Jack's cold. 103 fever. Because of radiation she doesn't have the ability to mount any defense without extra meds. So Jack's cold is like x10 for Lucy.

She will be fine. Just have to get her hydrated and full of meds. We sure would appreciate a prayer or two.



3.23.2013

We Made It

Well, we made it to Colorado.  It's been an interesting trip so far.  Jack started getting sick the day before we left and he's sort of gone down hill from there.  There have been a lot of sleepless nights for us all.  I'll just be real honest and say that traveling with a sick baby is the pits!


 

Ella is having a blast skiing.  She is so much stronger than last year and it shows.  Isn't she beautiful?


Lucy has been very emotional since we've been here and after a little prodding I realized she was really upset that she couldn't ski.  She cried, I cried, Erik cussed.  It really isn't fair and my heart is broken for her.  Thankfully there are lots of extra things to do here in Winter Park.  Tonight we went bowling and she had a blast!  I think we had found a new hobby for her.  Look at this face after she made a strike.






I'll be posting when I can.  After all, we are on vacation :)

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3.20.2013

Encouragement

I just wanted to pop in quickly tonight to thank you all for the encouraging words. I told my Mom today that sometimes when I share my emotions through my blog, God sends just the right comments my way. I am very grateful for the prayers you all continue to send our way.

I do want to clarify one thing, though. Lucy has the best kindergarten teacher we could ever ask for. Her homework is appropriate and I really love our phonics based reading program. I just didn't want anyone misunderstanding me.

I'm taking the kids on a little Spring Break trip tomorrow. We are excited, but packing for all of us is a true test of endurance. 3 suitcases, 1 carry on full of medicine and 3 backpacks. This is going to be fun!

Be sure to check the blog over the next few days. We have filmed a video promoting the Go Lucy Go Foundation and I hope to upload it soon. We have also done some radio spot about the 5k. My favorite part is Lucy's radio spot.

Stay tuned!




3.19.2013

The Will to See


I sat down to write last night and nothing would come out.  My fingers couldn't move and my brain totally shut down.  I literally stared at the computer for 30 minutes wanting to write, but not able to will myself to move.  I'm not really sure why either.  All in all it was a good day.

I think my mood changed after helping Lucy with her reading homework.  She got so frustrated and cried.  A   lot.  I could just see the defeat in her eyes.  She was so discouraged, and so was I.  It is such a helpless feeling knowing that her limitations may be irreversible.  Commercials for the learning centers seem to taunt me as I know that even they may not be able to help Lucy overcome the obstacles in front of her.

Tonight's reading was much better.  I think that's whats so hard with Lucy.  Some nights/days are good.  Others are not.  Its a roller coaster for sure.  We never get to stay in neutral for very long.  The highs seem to be very high and the lows are almost rock bottom.  They are for me, at least.

In Sunday school this past Sunday my Dad spoke of the amazing miracles Jesus performed in the Bible.  It was a lesson that I could hardly sit through without tears.  Lucy's life is a modern day testimony of God's miracles.  Over and over he proved Himself.  I told the class that (besides a few dark moments) I never really doubted that God could heal Lucy of cancer.  Cancer was never bigger than Him.  What really made me doubt and fear the most was when Lucy went blind..twice.

When her sight was restored, both times, I knew I had been a part of a miracle of Biblical proportions.  My faith, along with Lucy's vision, had been renewed.  I still have nightmares about those dark days when Lucy couldn't see.  Whether or not it is rational, the prospect of Lucy going through life without being able to see was almost worse than living with cancer.  To have had sight for 5 years and then to have nothing; well it was more than my soul could bear.

I guess all these things have been weighing on my mind lately as I have watched Lucy struggle with reading.  I think about the limitations on her life as she grows up if she can't read well.  I think about the joy I get from submerging myself in a great book.  I want that so badly for Lucy.  I pray every day that God would continue to work miracles in Lucy's life and that she will continue to beat the odds.  She is tough and she will fight.  We will, too.  We would appreciate your prayers as we work daily to overcome the challenges in front of her.


And if you want to know why I'm really losing my mind, this video pretty much sums it up.

video



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3.17.2013

Weekend Goodness

What a glorious weekend it was in West Tennessee.  The weather was unseasonably warm and we all had a touch of Spring fever.  I cleaned out closets and did a major Goodwill sweep of the house and garage.  Erik laid four scoops of mulch (with a little help from me) and trimmed all my Crepe Myrtles.  We still have a lot of mulching to do but things are starting to look good around here.  Jack spent every waking minute outside this weekend and Lucy enjoyed her share of Popsicles on the back porch.







Ella practiced softball all weekend long.  She has learned how to throw the ball against the roof to practice her pop flies.  We decided to let her try softball again this year, after a hiatus last year.  She moves up to the next division this year and we were very hesitant to put her back in the softball arena.  Here is West TN, softball is HUGE.  It is very competitive and when you commit to playing you have to give it your all.  She begged and pleaded; and even went as far as to stop art lessons for a few months so that she could play.  I have been so pleased with her commitment to practicing and her desire to become better.  Practice starts this week, so life is really about to get hopping!

The most exciting thing we did this weekend was go to the Zoo.  I think I was the most excited one in the truck.  I couldn't wait to see Jack's face when he finally got to see the Elephants.  It was everything I thought it would be.  He was in awe at every turn.  The girls also had a great time, although I think we wore sweet Lucy out!  She was exhausted when we left.







This whole weekend I was keenly aware of how blessed we are.  We are finally becoming a family again and it feels so nice.  Doing normal things, like working in the yard and blowing bubbles at the sun, has never been more rewarding.  I'm not sure we will ever live without the fear and knowledge that things can change in the blink of an eye for us, but right now things are good.  And good is a really great place to be.

 **Don't forget to enter the Mucinex sweepstakes. Don't miss your chance to learn about Children's Mucinex and possibly win $100!  http://erikandkatekrull.blogspot.com/2013/03/a-craft-kind-of-day.html**


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3.14.2013

Hearing Aids

*Register now for the 3rd Annual Go Lucy Go 5k, benefiting the Go Lucy Go Foundation and LeBonheur Children's Hospital.  April 20th, 2013.  Spirit Runners are welcome and receive a t shirt (which can be mailed.) Go HERE to register.*


It's official.  My baby girl can hear again.


When Dr. White turned them on, the look on her face and in her eyes was priceless.  While I was so happy she could hear again, I felt horrible that somehow I didn't know.


The feel of her hearing aids will take some getting used to.  She is really excited about them and knows they are going to help her hear, but they are uncomfortable right now.  This is to be expected and thankfully she really only needs them during class time for now.  We have no idea what the future will hold for Lucy's hearing, but we are just going to take one day at a time.  

Sometimes technology just blows my mind and this is one example.  These tiny little hearing aids have so much power.  They are capable of so much.  It's really more than I can wrap my little brain around.  I don't have to understand it to appreciate it, that's for sure.  Tonight I am so very grateful to the doctors, nurses, Audiologists and scientists who work so tirelessly to improve our lives.  Especially the lives of the precious girl above.  


What to hear Ella play the piano?  (Its actually a mommy/daughter duet) She's only 2 months into lessons and I'm really impressed!  Go HERE to see it.  






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