It's Been a While

Well, hello to anyone who might still be out there.  It's been a while.  I wanted to share an update with you all of Lucy and our family.  I hope this will give you all encouragement and will serve as a huge THANK YOU for the years and years of prayers for our family.

Lucy is doing well.  In about 4 months she will have her last set of scans before she will be in remission.  72 months!  Can you believe it?  When I stop and think about where we were and where we are now I just stand in amazement.  Lucy still has challenges, as she will for the rest of her life.  She has lost all hearing in her left ear and she has lost most of her hearing in her right ear.  With a hearing aid she can function well.  She does have sudden onset hearing loss occurrences and we don't know why.  We have to get her to the doctor and start her on a steroid regimin within 24 hours of the onset.  Its extremely frustrating and "I don't know why" is an unwelcome response.

School continues to be a daily challenge but in true Lucy style she rocks it every day.  She works harder than any other child I know and I am so very proud of her.  It takes all hands on deck with her learning but we are surrounded by an amazing team.  God put us in the perfect place for what He knew our life would demand.

Here is a video we just did for our annual Go Lucy Go Dinner and Auction.  I hope you will enjoy it. It's fairly emotional for me but it sure does tell a great story.  Maybe I'll be able to write a little more often.  It's nice being back :)

GLG Dinner Video from Sarah Villane on Vimeo.


Jail Break

In a crazy turn of events, I'm happy to say WE ARE HOME!  

It's amazing what a well timed phone call and some college courses in persuasive arguments can do when you are in the hospital.  

Home.  It's such a great place to be.  

In between PICC line placements and Track and Field meets I did my best to be mom to all as Erik was father to all. We don't do many things well, but sometimes-just sometimes-we get this family thing right.  

The PICC line took longer than expected so as Erik and I impatiently waited to see our baby we were getting location updates from Ella.  Counting down the minutes until her first event, I was able to kiss Lucy's forehead as she was still recovering from surgery and then drove as fast as the law allowed to Ella's meet.  Thankfully, I made it in time for her 3rd long jump turn.

And Jack, well don't worry about him.  He was entertained by my father and his cousin Maddie.  

For tonight, all is well.  


Unfortunate Familiar Faces (hospital)

It's been such a long time since I've been able to pull up this page.  Every day I think of things I want to say or things I'd like to share, but the force that keeps me from opening the computer is strong.  Maybe its enemy warfare or maybe its just a general anxiety attached to this precious outlet I had for years.  Either way, I'm writing today and from a very unfortunate, familiar place.

Room 710.  A room we've seen before, a place we know like a grandmother's home.  LeBonheur's Neuro floor.  Lucy is fine but gave us quite the scare this week.  On Sunday she slept all day and started to run a high fever.  The next morning she was admitted for dehydration.  Due to her crazy medical history she was to be monitored closely, which turned out to be a blessing.  After being at the hospital for several hours Lucy had a large seizure followed by 3 more over the next 30 minutes.

She stayed in the ICU for a day and a half and now we have made our home back on familiar ground.  It doesn't look as if we will be leaving any time soon, much to all of our disappointment.  We are praying that if all cultures and tests come back negative she may get to come home next Tuesday.  The task for Infectious Disease is to determine what happened, why, what medicine to continue and its dosing and duration.  No small feat when you have very little information to work with.

I have to tell you its a bit surreal to be back up here as a patient.  I am here quite often as an ambassador for the Go Lucy Go Foundation.  We serve meals, we provide financial assistance to families and I work as a mentor.  But being back on this side of the door is different.  And its hard.

I kind of wonder if God wasn't making sure I never forget what its like to walk the halls as a worried mother.  I've been reminded that families are hurting, they are scared and they are in need.  The feelings of all those first days so many years ago haunted me as I walked the halls last night.

Lucy even had to take advantage of the clothes closet that Go Lucy Go keeps stocked.  Thank goodness we bought all those like girls undies!

For those of you who still follow Lucy's story and have waited on an update, I apologize.  I'd give an excuse but I don't really have one.  All I can say is that opening the computer is just hard.

I would, however,  like to invite you to help us continue our work at this amazing hospital.  If you are so inclined, it would be amazing if you would sign up as a Spirit Runner for the 6th Annual Go Lucy Go 5k/10k.  With your Spirit Runner registration you will get a t-shirt mailed to you!  If you are local, there is still time to register to run or walk in the race.  Here is our t-shirt this year (we kind of love it!)

All of this can be done on our NEW website.  Go check it out!  golucygo.org


Love Day

It's been quite a roller coaster at the Krull house as we have been fighting the battle of the ears.  I am very happy to report that Lucy is responding well to steroids and her hearing is almost back to where it was. Where is was wasn't perfect but it sure is better than no hearing at all.  Where she was/is now is almost completely correctable with a hearing aid.  The left ear, as we now have confirmed, was damaged beyond repair from radiation.  That's OK as long as we keep the right ear event free.  

In between multiple doctor appointments this week we were able to serve Valentine's dinner to the Neuro floors at LeBonheur Children's Hospital.  Our Go Lucy Go money was hard at work.  We fed more than 90 meals and awarded $3500 in financial aid.  I can't tell you how rewarding it is to meet with families whose children are fighting for their lives.  The determination, the sense of urgency, the raw emotions and limitless faith of moms and dads in fight mode is more than inspiring.  

Go Lucy Go has a big announcement to make.  The lady below is Stacey and she is our new Executive Director.  I am elated to have her help and I believe that God answered our prayers when we asked for assistance.  We believe that God ordained the work of Go Lucy Go from the beginning of our journey.  From the very first days after Lucy's diagnosis it was evident that a true need existed in the hospital.  We immediately jumped into action by sharing the gifts we were so abundantly given.  It was a natural reaction to our horrible situation.

For 4 years Erik and I have done the best we could with Go Lucy Go while being parents, spouses, church members, school leaders and community members.  Unless you've walked in the shoes, life after cancer is one you just can't imagine.  The daily stress level that we live with is, honestly, quite unhealthy.  To be perfectly clear, we would live with 5x the amount of stress as long as our family is all together.  Reaching out and asking for help was the result of a spiritual battle between me, God and the enemy.  I didn't want to let go but I knew there was so much more purpose and potential for Go Lucy Go than I could manage.  Living in "that" moment everyday-the moment that led us to founding Go Lucy Go-was tearing me down.

Stacey has come along side of us, handling the day to day duties and the organizational component of the job.  She has a ton of great ideas and you'll be hearing and seeing a lot of exciting things from Go Lucy Go in the months to come.  We, in turn, are relieved of the daily stress which allows us to mentor families and be the servants that God called us to be.  I am grateful and continue to stand in awe of God's provisions for our family.  Thank you all for your continued support.

Happy Valentine's Day from us to you!


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.