1.18.2016

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.





20 comments:

  1. I am so sorry to hear this. I had very incorrectly assumed you were busy with life in a positive way because you hadn't posted for so long. I pray Lucy's surgery goes well. She is one very determined and strong little girl. An inspiration to all! Go Lucy, go!

    ReplyDelete
  2. Thinking about y'all & praying for you!! We love you !

    ReplyDelete
  3. You have more strength than I could ever even imagine. I hope everything works out for your family, and I will continue to pray for you every day. KB

    ReplyDelete
  4. I'm so glad to see you back posting. And so sorry to hear of Lucy's struggles. I continue to pray for Lucy and her family. It just doesn't seem fair but it is in God's hands and He will carry you through this as He has carried you all your life. Lucy is always in my prayers.

    ReplyDelete
  5. So sorry to hear of what else Lucy has to go through. I know God will continue to heal her and your family!

    ReplyDelete
  6. What a difficult time for you all. Thank you for your boldness in sharing your story. I know that it is doing good in ways that you will probably never know about this side of heaven. Praying for you all, hoping for a successful surgery, speedy and complete recovery.

    ReplyDelete
  7. Just a few verses to hopefully encourage you. I'm so sorry to hear about everything your family is going through on top of what you've already been through. It seems unfair--but thank you for sharing your story. Praying healing over Lucy from the top of her head to the tips of her toes!

    Psalm 94:9
    He who planted the ear, does He not hear? He who formed the eye, does He not see?

    Isaiah 35: 4-5--Say to those with anxious heart, "Take courage, fear not Behold, your God will come with vengeance; The recompense of God will come, But He will save you." 5 Then the eyes of the blind will be opened And the ears of the deaf will be unstopped.

    ReplyDelete
  8. Continuing to pray for all of you as God continues to have his arms securely around you all. What a blessing that even with all the trials and tribulations you are back in the mist of you are able to be thankful for all the wonderful things in your life. Congrats to Ella for her wonderful swimming skills, to Lucy that she got to spend special time with grandparents and to Jack who is growing like a weed and loving every minute of it. thank you Kate for being a mama who knows her kids and will fight even if you have to make a scene to get what your children need. Becky

    ReplyDelete
  9. Yes, I am one that has never met any of you, but continue to pray! Stay strong.

    ReplyDelete
  10. I've been a long time reader, but don't think I've ever commented before — as a child I had Cholesteatoma 3 times and had to have mastoid surgery on my right ear to remove it. I have 80% hearing in my left ear and only 20% in my right. The good news is Technology has improved greatly in the 25+ years since my surgeries and now there are some truly incredible hearing-aides available to make me able to hear near perfectly! Hang in there! xoxo

    ReplyDelete
  11. Kate, I always check your blog and follow your pictures on Instragram. Praying for a quick and uncomplicated recovery for dear Lucy.

    And good for you to fight for Lucy the way you did. It's frustrating that you have to but still never apologize or feel bad for doing it. You are her champion, her warrior and most of all, her mommy. Look out world, don't mess with Mama Kate!!

    ReplyDelete
  12. Oh my goodness, we were so sad to read your update. What a difficult and scary time for you all. Please know we love your little girl from afar and keep her in our prayers! You were so right to make those calls and keep pressing until you had answers to Lucy's ear issues! It's so hard to be the Momma protecting her little girl when those with the skill to fix things aren't properly diagnosing the problem! Prayers for smooth surgery and the best possible outcome for her hearing. Much love from Florida.

    ReplyDelete
  13. My prayers continue to be with Lucy and your family! May you feel His love and presence in your lives as you deal with all that is going on. Remember that He is always with you. :)

    ReplyDelete
  14. I've followed your story for a long time, and I'm sorry to hear all this. Lucy is an amazingly strong girl who always seems to have a smile on her face.

    ReplyDelete
  15. Thank you for the update. I'm sorry about Lucy's ears and Ella's Celiac. Thank you for sharing your continued story, it is important to see the lifelong effects of cancer.

    I'm glad the fundraiser was a success and that you are able to continue the great work of your foundation.

    You are in my prayers.

    ReplyDelete
  16. So sorry to hear this! You all are in my prayers! <3

    ReplyDelete
  17. Thanks so much for the update. Was wondering how all of you were doing. I will definitely be praying as Lucy goes through these challenging surgeries. And for you, so hard to see your child endure so many difficult medical issues. Keep us posted so we can pray specifically. Love your family, even though we have never met.

    ReplyDelete
  18. Just saying thanks wouldn’t just be enough, for the fantastic fluency in your writing. cash loans instant online no faxing one

    ReplyDelete
  19. Chăm sóc sức khỏe Comprehensive health care, highly qualified doctors, thoughtful neonatal care, modern medical equipment, multi-purpose hospital

    ReplyDelete