Surgery Update

Hi friends. Thank you all for storming the gates for us today. God must have heard all the prayers for protection and discernment because Lucy's surgery was postponed. When the doctor heard about the rapid onset hearing loss in her "good" ear he ordered an audio gram. What showed was nerve damage and that's not good. Lucy will be on a week of high dose steroids followed by an MRI next Friday. We will assess the situation at that point and figure out how to proceed. 

        This is Lucy being "totally over it."

I appreciate the doctor being cautious as Lucy's hearing is in the balance. Please pray that the issue is vascular and will respond to steroid treatment. The second prayer would be that if the damage/loss is permanent God would make provisions for hearing in other forms. 

Third, please pray for Lucy. She is frightened, frustrated and confused. She went to bed Tuesday night being able to hear (with a hearing aid) almost perfectly in one ear. She woke up almost completely deaf. This has been very hard on her and she's just been through so much in her short 9 years. 

Thank you all for your love and support.


Ears and Determination

"Father fill my EARS with your beautiful love song and 
soothe my heart with your comforting words." Tracie Miles

When Lucy was really sick I was able to write often.  It was such a sweet respite from the numbness of the hospital room.  Now, when I have time to sit and write (which is virtually never,) it seems again like a respite from life.  It's a small distraction and one that I so appreciate.

Tomorrow Lucy goes in for her first ear surgery.  I want to be optimistic but I think It is more practical to be realistic.  Lucy hasn't had any functional hearing in her left ear for months.  I kept holding out hope that it would return but I don't think that's in the cards.  Especially now after the ridiculous ear infection that set in.  This morning we had another scare.  I went to wake her up for school and she didn't respond.  I could see her breathing so I knew that she was alive (not to be dramatic, but seriously.)  When I went over and woke her she couldn't hear me.  She couldn't hear anything.  Her right ear, her "good" ear, had no hearing.  I was scared and Lucy was very confused.  I can't imagine what was going through her mind.

But my goodness!  Have I mentioned how determined she is?  She insisted on going to school today, although we were about 2 hours late.  It was very challenging and huge kudos to her teacher for being willing to try to manage today.  Funny story: Lucy's teacher sent me a text around 1:00 to give me an update.  It said Bad News: Lucy's can't hear anything.  Good News: Doesn't seem to bother her a bit.  At one point the teacher was trying to teach and Lucy was sitting at her desk just a hummin' away.  She couldn't hear herself but the whole class sure could!

Listen, if I can't laugh at the situation I would cry myself silly.  Our life is quite comical at times.

Last week we went on a short little trip out West and had a quick family vacation before surgery.  We were very thankful the Dr. allowed us to travel so we made the most of our time away.  Lucy was registered to ski with the NSCD, the National Sports Center for the Disabled.  Last year she did the same but sat in a sit-ski which is an adaptive ski seat.  This year, however, Lucy was determined to ski.  We had not discussed this previously so I was more than shocked when this all came about.

I'll tell that story tomorrow (or the next day) because it's quite a doozy.  For now, I'll leave you with this precious bundle of POTENTIALITY.  100 bonus points to any Southern Baptist who knows what song I stole that word from.  The child that was determined to ski is my daily source of inspiration.  She reminds that me no mountain is too big and that I don't ever have to take "no" for an answer.  Lucy provides my daily lesson of courage and humility.

Tomorrow morning I will walk into the hospital worried, scared, anxious, doubtful and embarrassed at my lack of faith.  Lucy, on the other hand, will walk in ready to tackle the challenge ahead of her.  She won't look back but rather will run ahead to the finish line.  She will be brave and courageous and will leave everyone she greets in awe.  I love this kid.  She is the very best.


Hello From the Other Side

Jack after a fun birthday party

Tacky day at school

Decade day at school

Ok, so that was pretty lame but that's how life feels right now.  We are working hard to keep things going at the Krull house although some days I have my doubt we are succeeding.  I have several things to share, as we have been quite busy since I last wrote.  The Go Lucy Go Foundation was a huge success and I'm so excited to report that we raised more than $45,000 for our work at LeBonheur and with families at St. Jude.  

Soon after the dinner we headed to East Tennessee for Thanksgiving fun with Erik's family.  As always, it was a great, but too short, weekend.

When we got home from Thanksgiving travel Lucy took a quick trip to Nashville to the new American Girl Store with my parents and Ella competed in her 3rd swim meet for her school's new swim team.  

And then, as it often does, the pendellum shifted and things went downhill fast for our family.

(To backtrack a tiny bit, Christmas 2014 Lucy woke up one morning and had dramatic hearing loss in both ears but especially the left ear.  Tubes were put in Feb of 2015 and worked for about 3 days.  She battled chronic ear infections all year and we were in and out of the ENT for 8 months straight.)

After a particularly rough week at school and one really, really bad day I just lost it.  I seriously lost it.  I called doctors and hospitals and made a real fool of myself to be honest.  I knew Lucy was sick but I didn't seem to be getting through to anyone.  Its a maddening thing to be a momma arguing with doctors.  A new ENT at St. Jude agreed to see Lucy and a CT revealed a real mess.

Fast forward through a hospital stay and 2 PICC lines, both requiring Lucy to be put to sleep, we have an uphill battle ahead of us.

I tell this story so that I can remember just exactly how I felt during this last hospital stay.  When the nurse came in to do our home training for administering the IV antibiotics, I had a true flashback moment.  She set the supplies on the hospital table and my knees buckled.  I was weak and sick to my stomach.  I actually had to sit down before I could even continue with the training.  Every memory of the first few months after Lucy's initial diagnosis flooded my heart and soul.  I was scared and I was immediately tired.

The same day that Lucy's was admitted for her treatment, my mom took Ella to the allergist for some testing.  This is why...

This is called Dermographia and her whole body looked this way.  She was extremely tired, she vomited a lot and she stayed green.  We were very worried about her as I knew something just wasn't "right."  Can you believe it, the poor child tested off-the-charts for Celiac disease.  It's been a huge adjustment for Ella but I am happy to report that she is feeling wonderful and adjusting to her new diet very well.  There are now 5 immediate family members between Erik's family and mine who have Celiac disease.  I guess those genes run strong.

The past few weeks have been tough as Lucy is adjusting to the total loss of hearing in her left ear and hearing that ebbs and wains in her right ear. It was determined that she has a very large Cholesteatoma in her left ear which will have to surgically removed.  This Cholesteatoma is due to damage from radiation and a nasty infection that improperly treated for months on end.  Surgery is scheduled for February 4th and I am already nervous as a cat about it.  It is rather intrusive, as bone will have to be cut away behind her ear.  The infection has deteriorated the inside of her ear, leaving her with no ear drum or other ear bones.  The Otologist has prepared us for a total ear ablation in which he will clean everything out and sew her ear shut.

I know that is graphic and a lot to take in but its the reality for Lucy.  Cancer treatment, we knew, would be worse than the cancer itself.  Again, Lucy is paying the price for the necessary treatment that saved her life.

The right ear will be next.  The damage to the bone/skull is much worse in the right ear and will actually be a harder surgery.  The recovery from the 2nd surgery will be brutal, or so we have been warned.  Although the damage is worse, the hearing seems to be "intact." That is, what is left of her hearing after radiation.  The doctor feels confident that he can salvage what is there and that with her hearing aid she will have a functioning ear.

We have given this to God and we know that He is holding Lucy and our entire family through this next journey.  We are grateful for a school that is willing to work with Lucy, our family who always seems to be right here when we need them and our friends who always have our backs.  I am especially thankful to all of you who still pray for our family.  The emails and messages I have received asking about Lucy are such a wonderful reminder that so many people love a little girl they have never met.


It's Going to Be a Blast!

Hello to all from the Go Lucy Go Foundation.  Thank you for being such great supporters of the work that we do for LeBonheur Children’s Hospital and families in medical crisis.  We wanted to share with you some of the exciting auction items up for grabs at this year’s event. 

For those of you who have bought your tickets, we can’t wait to see you there.  If you haven’t yet, it’s not too late.  Go to https://www.eventbrite.com/e/go-lucy-go-dinner-and-auction-2015-tickets-18597425400 today to reserve your seat.

Live Auction items include:

6-Night Stay in Winter Park, Colorado        
·      This home located in the beautiful Fraser Valley in Fraser, Colorado. It is located only 2 miles from Winter Park Ski Resort, 10 miles to Granby, and 18 miles from the Rocky Mountain National Park. The Denver International Airport is approximately a one and a half hour drive along Highway I-70.    
·      4 bedrooms—sleeps 13
·      check out its webpage at VRBO.com listing #298647

Large Big Green Egg with Nesting Table

Memphis Night Out on the Town
·      2 lower-level tickets to a Memphis Grizzlies Game
·      Dinner at The Majestic Grille
·      Accomodations at The Peabody Hotel
Silent Auction items include:
 4 Night Cancun Coastal Adventure (includes:)
·      Round trip airfare for 2
·      4 nights at the Westin Resort and Spa Cancun (deluxe ocean view room)
·      Sightseeing and snorkeling Catamaron Cruise with open bar
·      Parasailing for 2

4 or 5 Night Royal Caribbean Cruise
·      Bermuda, Bahamas or Caribbean
·      Balcony Stateroom for 2

Ultimate Pro Sports Fan Getaway
·      Choose from up to 5,000 games in 50 markets nationwide.
  • 2 lower level seats to your chosen regular season MLB, NBA, NFL, or NHL game, or 2 grounds passes to a non-major PGA golf tournament1
  • 2-night weekend stay in a standard room in deluxe accommodations such as Hyatt, Marriott, Sheraton, Wyndham or comparable
  • Round-trip coach class airfare for 2 to participating locations within the 48 contiguous U.S.

Churchill Downs VIP Experience
  • VIP Private Jockey Club Suite for 2 at Churchill Downs during the Spring, September or Fall Meets
  • Race Named in Your Honor & Trophy Presentation
  • 3-night stay in a standard guest room at the Hyatt Regency Louisville
  • Round-trip coach class airfare for 2 to Louisville, KY1

Other items of interest:
     American Girl Doll- Maryellen doll and book
     Week's vacation at Water's Edge Condominium (May 7-14) Ft. Walton Beach
·      Yeti Cooler 65 oz
·      Commercial Grade refrigerator
·      Restaurant Gift Certificates
·      Art from local artists
·      Fine wine
·      Phillip Ashley Chocolate tasting for 4
·      Costa Sunglasses

And many more items that you will just have to see! 

Remember, it’s not too late to purchase your ticket.  Go to https://www.eventbrite.com/e/go-lucy-go-dinner-and-auction-2015-tickets-18597425400  today to reserve your seat.

We can’t wait to see you there!


Weaknesses and Upcoming Scans

This past week Jack has been sick.  He fought a nasty virus which caused him to spike high fevers that brought along vomiting.

Did I mention that I have to host a Dinner and Auction on November 12th?  You know, that Go Lucy Go Dinner that I spend months preparing?

I think I spent as many hours praying for protection for my family as I did cleaning up puke messes.  Admittedly, this prayer was completely selfish because I don't have "time" for anyone else to get sick.  Not now.  

In between the vomiting, the cleaning and the precious time holding my sweet boy I battled the defeated feeling that was slowly encroaching its way over my soul.  "How in the world would I ever be ready for the event?"  "I lost a whole week--I'm doomed."   "Maybe its just not supposed to happen."  My poor husband---there were lots of tears shed this week and I'm sure I was more than pleasant to be around.

I tried to get work done when I wasn't caring for Jack.  I tried to make phone calls, plan menus and  secure auction items.  It seemed that the harder I fought to make the Dinner a priority over Jack the more the pieces would unravel.

And then I stopped.  I just quit.  And this is why:

But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me.  2 Cor 12:9

At the moment I admitted my defeat and stopped trying to rescue myself God sent some amazing friends to start picking up the broken pieces and began restoring my heart and faith.  Friends that jumped to the rescue getting auction items, a team of friends that will be handling huge assignments at the Dinner, sweet friends who began sending encouragement over the phone.  And there were even larger possible answered prayers that seemed to come from absolutely nowhere that ignited a spark in me like I haven't felt in a long time.  God is so very good.  

I am so thankful for God's promises to hear and answer our prayers.  I am also thankful for the burden that He placed on our heart for the Go Lucy Go Foundation.  In my devotional this morning I read the following 

"Oh the burdens we lovingly bear but cannot understand! Oh, the inexpressible longings of our hearts for things we cannot comprehend! Yes we know they are an echo from the throne of God, and a whisper from His heart. "  Cowman

We didn't go searching for an opportunity to create a non-profit organization.  Before Lucy got sick I didn't even know that there were families suffering that needed the help we could provide.  But God, through Lucy's cancer, placed on our hearts a groaning, an echo, greater than anything we could have ever dreamed or imagined.  Its the greatest blessing we could have received through her sickness.  

Last week we received a "random" call (God doesn't do random) from a hospice organization in Memphis.  There was a family in need of a lot of assistance.  The child needs to come home on hospice; the hospital has done all it can.  Because of her cancer she is very immune compromised and the single mom's house is not in any kind of condition to bring her home.  The carpets are molded and mildewed and the utilities had been turned off for several months.  

Because of the work of the Foundation and the generous donations from you we were able to have their utilities turned back on and we are having all the flooring replaced in this child's home.  There is nothing we can do to save this child's life.  Other than a miracle from our creator, this child will die soon.  But we are able to give the gift of "normal" and "family" to this mom so that the child can come home and die surrounded by her brothers and sisters.  

THAT--that is a burden, an echo, that I am willing to not comprehend but bear for the rest of my life if God wills.  

Blessings upon blessings have come my way since Lucy was diagnosed.  The honor of using your donations to help this family is one of the greatest yet.  

So, there is a Dinner and Auction on November 12th that we would be honored for your attend.  You donations help make sure that this kind of work is able to continue.  Can't come to the dinner but want to make a donation?  We would be grateful for that too.  Or maybe you have an item that you would like to donate to the auction?  Just let me know and we would be honored to have it.  You can go to www.golucygo.org to find out more.  

Also, as you are saying your prayers the next few days we sure would appreciate one for Lucy.  She has scans on Monday morning.  We are asking for clean scans and we continue to pray for complete healing for her brain and body.  

Many blessings to you!