4.13.2015

Go Lucy Go Race

If you've wondered where the Krull family has been for the past few weeks, we've been up to our eyeballs in race planning.  It's been a lot of work, but oh!  This year's race is going to be amazing---the best one yet!  Not only is this our 5th anniversary, but we have also added a 10k.  To date there are 695 participants registered.  Will you please help us reach our goal of 800?

This year everyone who participates in the race will get a FREE hamburger or hotdog, chips and a drink.  Not to mention a grab bag of race goodies and a commemorative race cup!

Most importantly, we are raising money for a great cause.  The Go Lucy Go Foundation supports the efforts of LeBonheur Children's Hospital through various avenues.  Hot meals, food pantry, clothes closet, the Ladybug Library and nurse education.  I want to share a few pictures with you of some recent additions to the Child Life department on the 7th floor.  The 7th floor of LeBonheur houses the Neuroscience Institute, where Lucy spent all of her time when she was there.

This is the new teaching doll that the Go Lucy Go Foundation purchased.  This $3500 doll is interactive, allowing doctors, nurses and child life specialists to show children about their illness and upcoming surgery.  I can't tell you how helpful this doll was for Lucy before her craniotomy.


Also this year, the Go Lucy Go Foundation purchased an iPad cart filled with 25 iPads.  Kids are able to check these out and use them in their rooms.  They can be used for keeping up with homework, medical education or just plain FUN!  Every kids needs a distraction when they are in the hospital.


And here is the project near and dear to my heart.  As I have said so many times before that we read books on a daily basis when Lucy was in the hospital.  Providing these books for the children of the 7th floor brings such joy to our hearts.  The books are donated with the assumption that children are going to want to take them home.  Nothing makes us happier than knowing a book that brought joy to a child while he or she was sick will also bring happiness at home.


Because of you, families of brain tumor patients and children with Epilepsy are being cared for every single day.  If you haven't registered, don't wait.  The deadline to register for this year's race is drawing near.  This Wednesday, April 15th at MIDNIGHT the online registration will close.  For those of you who want to support the Foundation as a Spirit Runner, this will be your last day to sign up.  Shirts will be mailed to you the week after the race.

Race registration will be available the day of the race for an additional charge.  Go online now and help support the work of the Go Lucy Go Foundation.  Register at www.golucygo.org



3.23.2015

It's Been a While--Lucy Update

This is Dr. Boop.  The man God chose to save my daughter's life.  

Wow.  Where do I start?  It's been such a long time since I've written or updated on Lucy.  I am not even sure where to begin.  First, let me update on Lucy.  At the beginning of February I wrote about Lucy having tubes put into her ears.  She was having a lot of hearing problems and we thought that this was going to be the answer.  Immediately when she woke up from surgery she could hear-almost perfectly.  We were amazed and ecstatic.  However, within three days she was back in her hearing aids.

Fast forward a month and a few doctor visits later and we are fairly sure that the hearing loss she is experiencing is going to be permanent.  High dose radiation left irreversible damage that she will just have to live with forever.  I am extremely thankful for hearing aids and with them she can hear almost perfectly.  While I am thankful for the aids I am still having a hard time with this one.  Honestly, its just one more reminder that she is different.  One more reminder that cancer tried to kill her.

To be perfectly frank, I'm struggling with a lot right now.  Erik says its because I have been studying the Bible and the devil is working on me.  I think he's right, but I also think it's a little more than that. I don't say this lightly, but I feel as if I have PTSD.  I'd love to know how many other cancer moms feel this way.

I miss the perfectly healthy child that I took for granted for 5 years.  I leave sporting events angry that thousands of children can run and play.  A part of me dies every time I watch Lucy struggle through a social encounter.  My heart literally aches as I see her fighting through the challenges that learning poses every single day. Yesterday as we left the soccer field I cried off and on for the rest of the day.

Most day I walk around in a fog, hardly remembering a moment of the day before.  For example, I had to call the school the other day to find out why I was charged an amount on my account.  Apparently it was for Jack's preschool registration for next year.  I was mortified when she told me that I had turned in his application the week before.  I don't even have a single memory of filling out the 6 page application.

So...yeah.  I'm pretty much a hot mess right now.  I think part of my PTSD involves this blog.  For more than two years I poured my heart and soul onto these pages.  This was my safe place--the place where my fears found words.  Now, I can't even find the words to write.  My brain stays so tired that I can hardly put a sentence together, much less write a fluent post.  I can't even keep extended eye contact with people when we talk.  Seriously, it's a real issue.  I have a college degree in communications and have lost all ability to carry on conversations.

I know that God chose my family for this battle and He equipped us with all the tools for fighting that we needed during the battlet.  I just wonder when the war ceases.  Because right now it seems like every day is still a struggle.  I didn't mean for this to end up as a pity-party but I needed to be honest.

Ella and Jack continue to thrive and I couldn't love them more.  I am trying to respect Ella's privacy a little more as she is starting to become such a lovely young lady.  We haven't really talked about it but I'm sure she's becoming a little more sensitive to my telling her business all over the internet.  I will just say that she's just a ray of sunshine everyday and so full of life.  She is making all A's and excelling in so many extra curricular things.  She's got one of the lead roles in the church spring musical and she's playing club soccer.


Jack--woah.  What can I say?  This precious boy---he is everything I ever dreamed a little boy would be.  He is wild, adventurous, passionate and super loving.  I get a least 5 million kisses a day.  I absolutely love this child.


Thanks for hanging with our family (and me).  As I am finding out, Lucy's cancer diagnosis is something we all deal with every day.  Some days are good.  Some days are bad.  Some days just suck.  But we keep on moving and fighting.  One day at a time.


2.23.2015

4 years today



4 years ago today.  The diagnosis that rocked her world.  Everything changed in the blink of an eye.  

She's still here.  She's still fighting and kicking cancer's butt.  I am so proud of her and love her with every fiber of my being.  

Will you come celebrated with us?  The 5th Annual Go Lucy Go 5k/10k is April 18th.  Come run, walk, bring a stroller.  Come for the Kids Fun Run, come for the food, come for the party!  Whatever you are looking for this race has got it!  Maybe you just want to the t-shirt and that's cool, too!

Register now (or order a shirt) at www.racesonline.com

This is the race you DO NOT want to miss.  


2.20.2015

Ice Storm 2015


Today is day 9 of Spring Break Part 1.  9 days we've been confined to this house.  Add to that the 1.5 weeks we were here before that with everyone being sick and that makes us being on lockdown for almost 3 weeks.  While I have thoroughly enjoyed being home I would be lying if I said I wasn't ready for everyone, including myself, to get back on a schedule.  Because to be honest, if I don't get out of these stretchy pants, get back to the gym and start another Whole 30 it's not going to be pretty!


Several areas around us have had the luxury of snow.  We, on the other hand, have had nasty, dirty ice.  At least we had one day to play on the ice before it started melting.  









Icy, cold and undesirable weather is supposed to be with us the rest of the weekend but hopefully Monday will bring a new week!

2.19.2015

Great News from Surgery

(sorry for grainy iPhone pics)

Today Lucy had a very minor surgery procedure.  It wasn't a major surgery but it sure was important.  There was so much riding on its success.

Ive mentioned that Lucy has had a lot of hearing loss since Christmas.  She basically was working on about 20% of her capacity.  Even with hearing aids in she was struggling.  Every day we could watch her withdraw more and more from life.  She as distant from us as a family and she didn't interact much with her friends.  She dreaded going to church and she had really begun to cling to me when we were in public.  She was nodding yes to everything you said or answering with random comments when you asked her questions.  This past week she even woke up crying one morning saying "I just can't hear anything."  After all she's been through this one just broke my heart.


There were two issues that needed to be resolved today.  First there was chronic fluid build up behind her ears.  We knew this had been there for a while but she had not been healthy enough in the past to put in the PE tubes that she needed.  It was such a simple procedure that we felt 99% sure would help her regain most of her hearing.  The second issue was a little less glamorous.  Thanks to high dose radiation that destroyed most of the secretion glands in her ears and damaged the lining of her ear canal, Lucy is not able to expel ear wax like most people.  I know, gross right?  What happens is that the ear wax becomes like cement and clogs the ear canal.  So, you combine the fluid with the cement and you have a nasty little situation.


The thumbs up tells you all you need to know.  The surgery was a huge success and she woke up (after the anesthesia grumpies wore off) and said "I can hear!"  Talk about smiles.  Erik and I were all grins!  Only time will tell if one set of tubes will do the trick or if Lucy will have to have permanent tubes.  Permanent tubes are definitely not desirable but given the radiation damage the doctor couldn't take them off the table.

Only time will tell and God has a perfect plan for her little ears.  Thank you again for all your prayers and love.  It still amazes me that so many of you still care for my girl.

Oh, and Ella is still just rocking life and winning every day.