4.22.2016

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.  

4.21.2016

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



2.14.2016

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!

2.04.2016

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.

2.03.2016

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.