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.