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It’s been quite a while since I’ve posted. 2016 to be exact.  So much life has been lived since that time.  Remission, middle school, high school, building a new house, a new puppy, baby Jack no longer a baby, double Cochlear implants, horse therapy, drivers license, and most recently a major reconstructive foot surgery.  It makes me tired just talking about it.  

Right after Lucy was born I started my blog as a family scrapbook.  After Lucy was diagnosed, this space became a safe place for me.  It was a place where I could go and say all the things I was feeling or thinking.  Often the words flowed almost as quickly as the tears.  So many people decided to read along each day and I will forever be grateful for that.  I truly believe that it was the prayers of so many readers that brought us through some very hard days.  

Coming back to this safe space has been quite a journey.  It’s been since that post in 2016 that I’ve even opened this page.  I’ve often wanted to write but I just couldn’t.  And who knows?  Maybe I won’t visit this page for another 3 years, but I’d like to think I will.  

Our family has changed in so many ways.  Each child has reached amazing milestones and continue to make my heart swell with pride.  For kids who have been through hell and back, they sure are rocking life.  Erik and I have faired pretty well, too.  Our priorities as parents have changed and that has helped us keep our crazy ship afloat.  Home life is challenging when you parent a child with special needs, and I promise its not near as easy as most families make it appear.  Our household would not function without us working as a team, as every day presents its own challenges.  

There are so many things that I want to share; so many milestones I want to remember.  There are parts of Lucy’s (and our family’s) story that deserve to be told.  Beating cancer was a major victory, but life since then has been hard.  There are still many tears shed and lots of questions still being asked.  We were given a “new” child at the age of 6 that we had to learn to parent.  We also had to figure out how to parent the siblings of that very special 6 year old.  Some days are better than others, but I think we are doing pretty darn good!  

For anyone out there that still may read this, “Thank You!”  Thank you for loving our family through this crazy thing called social media.  Thank you for praying for us.  I’d love it if you still would.  Hopefully over then next weeks/months I’ll be able to go back and recap life over the past 3 years.  It’s been a wild ride for sure!


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!


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!