36 hours

I drove for 5.5 hours today and will do the same again in about 36 hours. But this might be the best 36 hours I've ever had!

I surprised my family tonight. More details to come but right now I'm rocking a little boy who has really missed his momma.

Just Some Pictures

We are here in Atlanta.  Working on getting stronger.  Working on getting well enough to come home. 

We are making the most of our time together.  Lucy, Erik and me.  There are lots of memories to be made. 

But we sure are missing this fellow 

and his sister

and dreaming of a future trip to....

designed by Daddy

A Day in the Life

**So many of you have asked for a mailing address for Lucy.  I can't tell you how much that means to us.  There are some really awesome people in this world (and Atlanta.)  I hope you will understand that we can't give out a local address.  We just don't have the space in this small room for much more than our clothes!  The other problem is that we just won't be able to transport anything more than what we came with back home.  Thanks again for loving our baby girl and our family.  If there is something you want to send, please feel free to send it to the address on our blog.  I can assure you that Lucy will get anything that is sent to her!

**I also want to say a huge "thank you" to everyone who has sent me an email or a blog comment offering meals, help, etc.  Right now we are just trying to find our groove here as a trio.  Please don't be offended if I don't respond personally to you and take you up on your request, but as you will read below our days are very busy and very emotionally taxing.  What we need most are your prayers.  
---------------------------------------------------------------------------------------------------

Today's schedule is fairly typical for a day here on the Rehab floor:

8-8:30        Occupational Therapy
10-10:30    Speech Therapy
10:30-11    Occupational Therapy
11-11:30    Child Life Therapy
11:30-12    Physical Therapy
1:30-2        Speech Therapy
2-2:30        Recreational Therapy 
3-3:30        Physical Therapy

Some days she has music therapy.  That is a favorite of Lucy's already.  Yesterday was a great day.  She pushed through with such determination and pride.  I was shocked to be real honest.  It was probably the hardest day she has had (physically and mentally) in 16 months.  This morning, its been a different story.  She's done well, but it is obvious that she is tired.  She's struggled more in Speech and her walking legs haven't cooperated as much as they did yesterday.

It's hard not to be discouraged as we watch the decline from yesterday.  Erik and I both have gotten a healthy dose of reality today.  Lucy has a long way to go, but that's why we are here.  We just have to keep reminding ourselves of that.  Trying to understand how much of Lucy's struggles are her recovering from the past few weeks' events or what might be permanent is the hard part.  I have had a few hard days recently.  Getting a bigger picture understanding of what Lucy will have to fight is part of why we are here in Atlanta.  It's hard watching your baby struggle.  Its not a comfortable place in which to live.

My friend Amber came to visit tonight and it was so nice seeing a familiar face. (and a big thank you to Erik's  friends the Boeschens for bringing us dinner.)  Amber is a Speech and Language Pathologist here at CHOA and I felt comfortable telling her about some of Lucy's challenges today.  As we talked, Erik and I tried to walk her through the events of the past few weeks.  I could tell that she was very stunned by how far Lucy has come taking into account where she was 3 weeks ago.  She told me that I had not written some of the details I shared with her.  What I apparently failed to mention over the past few weeks was that Lucy had an EEG that declared her almost brain dead on June 5th.  We had instated a DNR that banned any and all life saving measures.  We knew our baby was dying and we had begun to accept it.  We were planning for it.  We told Ella that her sister would soon go to be with Jesus.

In a meeting with Dr. C and Dr. W (two amazing doctors) we talked about what Lucy's future held.  We all agreed that a Lazarus moment would be the only thing that would save Lucy's life.  A few days after that meeting I sent Dr. W a text that only said "we have had our Lazarus moment."  It was the most poignant sentence I have ever written.  It was amazing.  I have no doubt that God has heard the prayers of many and chose to shine his grace on our child.  Almost brain dead.  That's what we were told.

Today was hard, but nothing will ever compare to the 5 days that we spent watching our daughter die.  Today was a gift.  As hard as it was, today was nothing short of a miracle.  Thank you God.  Thank you doctors.  Thank you nurses.  Today was a gift.

Home Sick and an Anniversary

To all you moms out there who are separated from your children and family due to illness, military service or work, I want to say that I grieve with you tonight.  I have never been so home sick in all my life.  I have cried all day and I am literally sick to my stomach.  My heart feels like it is broken in two.  Being an hour away was hard enough, but I knew that at any given time I could see my kids if I wanted to.  Being here, its not even an option.  What's worse is that as we spend more time here we realize that this is not a floor that is conducive to Jack visiting and Lucy's schedule will hardly allow it either.  I miss LeBonheur and St. Jude.  I miss our familiar nurses and doctors.  I miss the faces that I knew in the hallway and I miss the family that was have come to know over the past 16 months.  CHOA is great, don't get me wrong, its just new.

And don't get me started on Atlanta.  It is so big and I can't even make my way out of the parking garage.  I almost threw the Garmin out of the window the other night when it was pouring rain and I was trying to navigate to Target.  I was a mess.  I haven't felt that incompetent in a long time.  I'm going to stop having a pity party and move on.  When I look around this hospital I am constantly reminded of how blessed we are. Lucy is on special child and she has the opportunity to have a great life.  There are so many children here who won't ever have that chance.

We tried to go to chapel today.  I had to leave after about 20 minutes.  My emotions are still too raw.  It was more than I could handle.  Lucy and Erik stayed, though, as she was doing OT during the service.  These therapists are quite tricky that way.  As soon as the service was over, Erik's sister and some of her family came to visit for the day.  Boy, were they a site for sore eyes.  My heart just melted when I saw them.  It was such an immediate comfort being with family.  They even brought me us dinner, which was my first home cooked meal in over 20 days.  It was wonderful!

After we spent some time visiting, Erik and I headed out on a little excursion.  Today is our 12th wedding anniversary and it was such a treat to be able to spend a few minutes together alone.  We had planned on dining at a nice restaurant but the appeal of a home cooked meal was just too great.  So, we settled on Fro Yo instead.  We window shopped at REI and dreamed of one day taking all three kids camping, hiking and rafting.

When we returned, Lucy was so tired.  While we played cards with in the family room, she fell asleep in my lap and slept for about 2 hours.  She had three 45 minute therapy sessions today and was utterly exhausted.  I have no idea how she is going to make it for 6 hours tomorrow.  There are times I look at her and compare her to other children on this floor.  She seems so healthy.  But then, after almost collapsing after 25 minutes of PT, I am reminded that she does need to be here.  Her body is so worn out.  She (we) have a long way to go.

Tomorrow is a long day, just as the rest of the week will be.  I am excited, though, because I am going to have a visit from two friends and I am thrilled.  My friend Carrie moved to Atlanta from Memphis several years ago.  She is such a great person and I just love her family to death.  Her whole family (Camille) treated us so well when we lived in Memphis.  We are going to have lunch or dinner one day and then her husband is going to come take Erik out the next day.  The other friend was a total surprise.  I totally forgot that a sorority sister (Pi Beta Phi) of mine lives in Atlanta.  Amber actually works here at CHOA as a therapist and I am beyond giddy about seeing her.

One day down, now clue how many more to go. We will never stop praying for many, many more years.  Oh, and Happy Anniversary Erik.  I love you more today than I ever have before.  

Getting Settled in Atlanta

http://youtu.be/Xz0U9i5jgeQ  new You tube video


Well, we are here!  Children's Healthcare of Atlanta at Scottish Rite is where we will embark on our next big adventure.  We are getting settled into our new living quarters and will spend all weekend with doctors and therapists doing evaluations.  Hopefully by the first of the week we will get an idea of how long they think Lucy will need to be here.  I snapped a few pictures of us exploring the hospital yesterday and thought I'd share them.  The hospital is very strict about what I can photograph (which stinks) so I won't be able to have many "action" shots of Lucy working hard.  I'll try to update each day on her progress and include as many pictures as I can.  You may notice that Lucy is in a wheelchair.  Until she is a lot more steady on her feet, this will be her mode of transportation.  I'm not sure she really needs it, but its hospital policy.

Left to right 2nd row:
--Erik and Lucy at the putting green
--In the lobby there is a huge display that is interactive and educational.  I need to ask why, but all over this hospital is a fish theme.
--The Koi pond outside

Left to right bottom row:
--"The Zone" is an activity center with games, Wii, etc.  We haven't been yet, but we hear its really fun.
--In the garden picking blueberries

And just for my girls....

The gift shop is amazing and has more art supplies than imaginable.  However, I am making a trip to Hobby Lobby today because as much as we love Melissa and Doug I would go broke trying to keep up with Lucy's art addiction right now.  The picture below shows her diving in to her new stash.

All in all its been a good first 2 days here in Atlanta.  Thanks to two new friends, Christy and Stacy, we now know a couple of smiling faces around campus.  We were pretty spoiled at St. Jude.  Even on our first day we knew tons of people who worked there.  And at LeBonheur, well, they are all like family.  Thanks to all of you out there in Atlanta land who have come to know our family over the last 18 months I have lots of people to call on for help.  I can't tell you all how much I appreciate the emails that you have sent.  I have read them all, although I have not responded.  Please know that if we get into a bind, I will be contacting Fran, Gloria, Sarah B, Roel, Kristine, and the list goes on.  I am so humbled that so many of you would offer help to people you have never met.  I have to tell you, after a few weeks here a home cooked meal might be just the ticket.  But right now we are ok.  We are getting settled and are adjusting well.

Thank you for your continued prayers.  If I might ask, please add Elena to your prayer list.  She is my new friend Christy's daughter and she has had a relapse of a rare form of Leukemia.  I know they would really appreciate some extra prayer.

Here We Go

5:15 am. We (erik, lucy and myself) are off to Atlanta! Please keep Lucy and our family in your prayers. We know we are in for a big adventure. I'll post more tonight.

We are expecting mighty things!

The Men in My Life (a very long post)

Today I am more grateful for my husband and my own father than I ever have been.  And I would be totally remiss if I didn't add my father in-law, too.  Both my father and Erik's father taught us how to be husband/wife and have set such a great Christian example for us to follow.  Erik's father has given up his own life this past 18 months to raise my children.  He walked away from his life in retirement, never looking back, with the responsibility of making sure that Ella and Jack kept as much "normal" in their lives as possible.  My own father has held my hand, kept my spirits lifted and provided much needed compassion when I was at my lowest.  He has helped me keep my eyes looking upward when I was at my lowest.  Most importantly, he has stepped up his involvement at work to make sure that Erik was able to spend as much time with me and Lucy as possible.

And today, I am so grateful for the wonderful husband that I have been blessed with.  I could not imagine living my life without him.  I especially could not imagine going through this sometimes insurmountable trial without him as my help mate.  We are partners.  We are true mates.

It was September 1995 when we first met.  We were at a meet and greet for the Leadership Scholarship that we both were awarded at the University of Memphis.  In a cheesy little "get-to-know-you" game I found my husband.  I was mesmerized immediately.  I left that night, hardly knowing his name, and called my Mom to tell her that I met my husband.  It was November 2009 until I ever really spoke to him again.  Up until that point I would see him walking on campus and my heart would literally skip a beat.  Our first date was the 1995 U of M Homecoming football game.  Pretty much after that we were inseparable.  We dated almost 5 years until June 24, 2000 when we were married.  I can honestly say that I am the luckiest woman in the world.  I absolutely LOVE my husband.  I still get butterflies in my tummy when he holds my hand and when he kisses me.  Sometimes I feel like a school girl again in his arms.

And in case you ever wondered, he is the most amazing father I could have ever hoped for for my children.   My children adore him and he is so attentive to their needs.  I have already begun to pray that my girls will marry someone as wonderful as their daddy and I pray that Jack will learn so much from him, too. 


His love for our family has been made evident (if there ever was any doubt) since Lucy got sick last year.  He has made it his life's mission to keep our family together.  His words exactly: "cancer might have taken my daughter's health, but it is not going to take our family."  How can you not love a man with that much devotion and determination.  


I wanted to share with you something he wrote a while ago.  I debated whether or not to ever publish it.  After all we have been through the past 15 days I asked for his permission and he agreed.  I want my children to read this one day and understand how much their father loved them.  While the topic is Lucy, I think his love for his whole family is transparent through his words.  

March 9, 2012

  

It kind of caught me off guard this week when I saw the pictures of Lucy that had recently been done. I knew Kate had taken her for pictures, but I didn’t really know any thing about it.  But the one where Lucy is holding the Hope sign will always mean something more to me. Because a year ago today I truly learned what hope is.

A year ago today I was at the hospital alone with Lucy.  It was just 2 weeks after her first diagnosis and surgery to remove the largest tumors in her back and spine.  I had finally talked Kate into going home for a night and spending some time with Ella and Jack as well as to get some things from home for her and Lucy to feel more comfortable in the Hospital.

We had an ok night.  The day before had been good, but overnight Lucy had some significant pain episodes. Lucy’s Neurosurgeon came in by 6am, like he did on every morning we were in the hospital.  I had something on my mind that I had been wrestling with for a few days.  We had never been given Lucy’s pathology reports.  We were told before surgery that they would biopsy her tumors and we would know the type of cancer within a few days.  Well it was now 2 weeks later.  Of course I was starting to over analyze the situation. Many of you know I had previously worked at St. Jude for about seven years. My lab had worked on pediatric tumors. I had even done some studies with medullo. I knew the score.

We knew she had medulloblastoma, but we didn’t know the subtype.  There is a wide variety of outcome based on the subtype. Well I had noticed that one of our favorite nurses hadn’t come to see us in several days. So I start to think the worst. But I was afraid to say anything to anyone, especially Kate. But since I was there alone, when the surgeon came in, I just asked him. I caught him off guard, he looked down first. Then his words confirmed what I already knew. The initial path report said she had the worst kind.  Basically all who have this type of cancer eventually succumb to the disease.

He quickly leaves. And it is just me and Lu. I feel like I was just hit by a truck.  It is the most desperate and lonely feeling.  My words can’t convey what that felt like.  I had no hope.

Lucy slept fairly late.  So I had a few hours alone with my thoughts with her right next to me. I prayed like never before.  Begging God for a miracle.  Like Jacob, I was wrestling with God.  I cannot admit here many of the thoughts that I had that morning. But I was in a state of panic and desperation. And mostly just pain.  Pain for Lucy. That she would never get a chance at life.  That she would miss out on so much.  How this could impact or even destroy my whole family.  I begged, pleaded and negotiated with God like this until Lucy woke up.

When Lucy woke up she was different.  She was in more pain the ever before.  She had been so sore from surgery that we were having to make her turn her head a ¼ turn every few hours so her muscles wouldn’t stiffen up. Well this morning, Lucy would just flip around in bed.  Literally turning somersaults. Something was going on. She was in agony. We had the lights off and the windows covered, Lucy couldn’t stand light,

The quietness of the morning was quickly turning into hell.  She was in excruciating pain.  Nothing would calm her.  She was on pain medicine. Nothing helped. Morphine was useless.

She was screaming and flailing. She couldn’t talk or communicate. I began to change my prayers from the morning.  I started to ask God to just take her.  Don’t draw this out God, if you want her, take her now.  I prayed those words maybe a thousand times.  From about 11 to 12 that day Lucy was dealing with more pain than anyone can imagine. It was like she was being electrocuted. She had no control of her muscles. Her whole body would spasm. One episode caught me in the middle of begging God to take her. It was by far her sickest most painful moment of the last year. I believed at that moment that God was taking me up on my prayer.  All I could do was hold her hand. One of the nurses had come in the room. She held one hand and I held Lucy’s’ other. Occasionally we would look up from across the hospital bed and catch each others eyes. I knew she was emotional too. I will forever have her face etched in my mind.  She was doing her job. I was glad she was there to help me and Lu through this.  She may never know how much she meant to me.  She was my Angel for that hour. Thank God for good nurses who genuinely care.

Finally a Nurse practitioner came in and recommended Valium. In about 30 minutes that worked.

Kate called a couple times during the day.  I desperately wanted her to get to the hospital.  But I couldn’t share this news over the phone.  So I decided to wait.

Lucy drifted in and out of consciousness for the next few ours.  A hospital volunteer brought a dog by the room and Lucy did get out of bed to pet it.  After that she laid in my lap. Just me and her. I was still praying, but by this point I was just numb. I was almost paralyzed with hopelessness. My phone rang a few times. Lots of friends left text messages.  I couldn’t respond to any of them. Josh Pastner called and left a message. The Tigers were getting ready for the CUSA tournament that day. Just like they are today. The outside world hadn’t stopped like my world had. Nobody knew what I knew.

When Kate got to the room around 2, I couldn’t bring myself to tell her right away.  I wanted to let her have a few moments with Lu first. I’m pretty sure she saw right through me.  She came around the bed and sat by me on the chair and asked what was wrong.  I told her. And then we balled our eyes out together. I’m not sure I cried all day until that moment. We walked out of the room and left Kate’s mom to sit with Lu.  We just stood in the hall and held each other and cried. People walked by and we never looked up. 

The neurosurgeon and his assistant called us into the office to discuss and try to comfort us.  But Kate and I both knew the truth. Our baby had no hope of growing up.  Neither one of us liked the idea of putting her through chemo and radiation if there was no hope.

By the time we got back to the room it was well after 3.  I don’t remember talking after that. We just stood around Lucy’s bed in disbelief.  For the next hour or so we were in total despair. Hopeless.

Kate’s dad came up to the room sometime during this hour, but I’m not sure when.  But the four of us stood around the hospital bed and just looked down at Lucy. One of the nurses came in and I’m not sure what she asked, but Kate reached down to Lucy and touched her pillow. It was wet. Lucy is leaking spinal fluid out of the back of her head. I think it is about 4:30.  Nurses rush in and we all quickly realize that Lucy will be having emergency surgery. I decide right then that God has answered my prayer.  He is going to take her on the operating table. I absolutely knew it to the core of my soul.

Once the decision for surgery is made, the four of us stand around the bed and say some prayers preparing for the surgery. It is now about 5:30. I just remember it being so dark in the room.  The window shade never got opened all day long.  We couldn’t turn the lights on.  The sun was setting or had set outside.  It was just dark.  And for me quite hopeless.

I should tell you now that almost every day around 5:45, the food service called to remind us that we hadn’t ordered dinner yet. Lucy wasn’t eating anyway. And truthfully neither were Kate or I.

Well the phone rings. It is on my side of the bed. I pick it up and slam it down. I was frustrated. Didn’t they know what we were going through? Of course they didn’t.  I was telling my precious daughter good bye.

The phone rings again.  Nancy grabs it first and answers.  It’s the neurosurgeon’s assistant.  I really didn’t want to talk to her either.  Kate and I were thinking about hospice. They encouraged treatment.  I didn’t want to fight with her about it anymore on this day. I reluctantly take the phone. She says she wants me to talk to the Dr. from St. Jude and quickly puts her on the line.  I don’t want to talk to her either. 

She says that the final and more thorough pathology report came in.  The initial path report was incorrect. Lucy did not have the worst kind of Medulloblastoma. There was hope. Lucy had hope.

I know that the Doctor was still talking. But I don’t know what else she said. I was crying like I have never before or since. What had been the worst, most grueling day of my life just took a 180 degree swing.

Lucy still has a nasty cancer. But we now have a fighting chance of beating it. I was overjoyed. But emotionally spent.  I couldn’t control it anymore.  I wept for over an hour.

Of course like everything else in our journey, there was no time to sit around and contemplate. They came to get Lucy for surgery. It was her second one since her major surgery to remove the largest tumors. The surgeon needed put in a spinal drain to relieve the pressure in her brain and spinal column.  It was the pressure that was causing her pain earlier in the day. Her nerve endings had been misfiring all day long.  She had post operative meningitis.

We went with Lucy downstairs.  Her surgeon grabbed me and hugged me.  I swear I saw him tear up. It was an incredible moment.  He handed me a copy of the pathology report and said to frame it. Surgery went well. And the day closed with a hopefulness that has stayed with us ever since.

The Post That Needs to Be Read

There is a post that I’ve needed to write.  I’ve sat down to do it several times, but Erik and I just haven’t felt that the time was right.  It’s a very complicated issue but we feel that 1. We owe it to the legions of prayer warriors who are storming heaven for Lucy  2. We need more prayers and 3. Until now, we weren’t sure it mattered because Lucy was so very sick and we didn’t think we were coming home regardless.

Please read this thoroughly and take no more from it than what I am telling you.

Over the last few days we received conflicting opinions about Lucy’s recent medical events.  It has taken a long time for us to process this new information and we still aren’t quite sure what to think about it.  We have spent many hours consulting doctors, trying to make some really big decisions.  In a nutshell, there may possibly be some conflicting results about Lucy’s cancer reoccurrence.  I want to stress POSSIBLY.  I want to be very clear.  Lucy had a positive test from her CSF.  It’s hard to deny that fact. However, while we haven’t been able to rule it out we haven’t confirmed it either.  What has come into question is that there is a chance those cells were distorted by high doses of antibiotics, the infection, or the very high fever that Lucy ran for 2 days. 

Please understand that we are being very cautious with this information.  We can’t allow ourselves to get carried away, because there is a positive test out there that will hang over our heads for a while.  The doctors will retest in 6 weeks and then retest again 6 weeks later. 

Until then, we are hitting the ground running.  Lucy has made amazing progress the past week.  So much so that we are working with our team of doctors to get Lucy admitted into a children’s inpatient rehabilitation hospital.  Our hope is that Lucy will be able to receive the kind of care that she needed 6 months ago.  The kind of care that will allow her to have a “normal” life.  One free of stomach pains, free of the fear of walking, free of frustrations when she can’t play with her sister and friends.  The kind of life that every 6 year old wants.  The kind of life that every mother and father wants for their child.  Because, even if Lucy has a short time left we want it to be the best quality time we can give her.

We have no idea how long Lucy has on this earth.  It could be weeks, months or YEARS!  What we do know is that Lucy deserves the chance at life.  Erik and I have decided that if 3-4 weeks of rehabilitation will get her back on track for living then it will be worth it.  All the doctors agree that sitting around waiting 6 or 12 weeks on her next cancer screenings would be such an injustice to Lucy...and to our whole family. 

Leaving my family behind will be agonizing.  This is not the summer I had planned for my children.  I wanted to badly to make up lost time from last year.  As frustrating as it is, there is no denying that we have been given a GIFT.  We are absolutely convicted that God is leading us in the direction of rehab.  We are going to go for it, making every accommodation possible for our family to remain intact.  More than likely it will be for no more than a month.  We can do this! 

I want to say thank you again for the ceaseless prayers.  I feel as if our family is living through a miraculous event. A miracle if even for a few extra weeks or months. There are no other explanations.   We serve an awesome, powerful God.  Someone left a comment a few days ago that we should have had more faith in doctors than God.  This person said that doctors are the only ones with saving powers.  Well, let me be the first to tell you that most every doctor in this hospital had given up.  There was nothing more they could do for us.  (i must add that we have been completely blessed with wonderful, amazing doctors).  My child is talking, walking and full of life today not because of a doctors healing touch.  No, my child has been touched by the merciful hand of God.  She has been blessed.  We have been given a gift.  

Slumber Party

Tonight's post will be super quick.  I just wanted to let everyone know that Lucy had another good day.  She has been very tired today, but steadily making progress.  Her appetite still continues to be strong and she walked from the bathroom to the bed (with help) 4 times today.  OT was a bust, as she slept a good bit of the afternoon.

We were surprised by a visit from our friends the Watkins.  For those of you who have been following from day one, you will remember Lanie.  Lanie passed away from her fight with Medullo this past year.  Her parents drove yesterday for about 7 hours to come visit with us.  It was such a surprise, but I have enjoyed every single moment we have spent together the past 24 hours.  They are amazing people and we have shared so many of the same experiences.  Cancer is a horrible road to travel, but sometimes there is comfort in knowing that (unfortunately) there is someone who understands.  REALLY understands.

We are having a slumber party tonight..complete with science project and everything.  We made these focus bottles that I found on Pinterest.

Ella is curled up in the fold out chair with Erik, although I am about to move her onto the couch with me.  Lucy is out and I've got my eyelids open with toothpicks.  Sleep is calling.  I am going to answer.

Scenes from a Hospital

I don't know what to say.  There are no words that could begin to describe the state of awe that we continue to live in.  One week ago today I held my dying child, planning her funeral.  I had picked out the white dress she would be buried in.  I had arranged for Jack and Ella to have a nice outfit to wear.  I had begun to make a list of the songs that would be sung and the special things about Lucy that would be mentioned in her eulogy.  I had ordered a portrait of Lucy to be displayed by her closed casket.  Erik and I had called to arrange for 3 plots at the local cemetery.  I know this is a bit morbid, but I need to remember just how serious this situation was.

Lucy when her eyes were still not focusing

Please don't get me wrong, the situation is still serious here.  But oh my!  God continues to bless sweet Lucy with improved health, brain function and unbridled determination.  There are no words.

Doing a little fishing in PT

What's happening in Lucy's life is miraculous.  I am grateful for the amazing team of doctors, nurses and therapists we have been blessed with, but I know where the true glory is to be given.  It's the same place I was willing to give glory even if the tables had turned the other way.  The reality is, the tables can still turn at any time.  But right now we are full throttle to recovery from this horrible virus/bacteria that tried with all its might to take my daughter's life.

Would you look at these cheeks?  High dose steroids are good for something!

Have I mentioned that I am walking on sunshine right now?  God is good.  He really is so very merciful to those of us who are so unworthy.  I have no idea what the next few weeks/months will bring.  Actually, I have no idea what tomorrow will bring. What I do know is that our family has been given a gift.  We have been given another shot at life with our family.  I'm not sure what God has in store for us, but I pray that this time I am willing to listen and obey.

Lucy and Miss Cissy, our friend and Lucy's tutor

Lucy and her Aunt Ro (my sister)

 I am uploading the videos of Lucy's recent PT sessions to You Tube

http://www.youtube.com/watch?v=sKvzaszW4_A&feature=youtu.be

http://www.youtube.com/watch?v=aEqenWUS68U&feature=youtu.be

http://www.youtube.com/watch?v=olDstmiQ2CM&feature=youtu.be

We are once again trying to juggle long days in the hospital with making sure Ella and Jack feel safe and loved.  Erik's parents have picked up and "moved" to town once again.  My mom has stepped into the role of hospital coordinator again.  My sweet Dad is working so that our family business doesn't fall apart.  This is not the life that I ever wanted to live again.  This is not the summer I had been planning for.  I guess if there is one thing I've learned its that WE are not in control of anything.  Whether you believe in the God I pray to or not, we can all probably agree that as hard as we try we have no real control over our lives.  There is a greater plan in play that shapes us into who we are meant to become.  One trial and one triumph at a time.

Here are a few pictures of us trying to make life work.  I did go home last night to watch Ella at VBS parent's night.  It was agonizing leaving Lucy and Erik at the hospital and I didn't sleep a wink, but both Ella and Jack were thrilled that I was home.

I will never, ever be able to say thank you for all the prayers that have been sent above for Lucy and our family.  Please continue to pray for understanding for Ella, peace for Jack and most of all HEALING for Lucy.

Good Morning

This little girl would like to say "good morning" and "thank you for your ceaseless prayers."

God's miracles continue to amaze us every day.

Another Day of Improvements

I am exhausted.  It's been another long day.  The biggest news of the day is that the Opthamologist came in today and did an eye exam on Lucy.  He did not detect any acute optic nerve damage.  In other words, he did not see any damage that would lead to permanent eye loss.  PRAISE GOD!!!!  Lucy was able to see a few more things today but still has significant eye loss.  If all the doctors are right, this problem will eventually correct itself.  We just have no idea how long it will take.  In the mean time I have one frustrated and scared little girl.

Tomorrow is a new day.  We are expecting God's miracles to be revealed further.  Just as today.  Just as yesterday. Lucy will start PT, OT and Speech tomorrow.  These will be in very abbreviated formats but now is the time to start pushing her to see just how hard she is willing to fight.  I know she's got it in her.  I can see it in her eyes.  I really can.

Ella had a swim meet tonight and I have gotten report from Erik that she totally dominated the pool.  Especially in her 25m Butterfly.  I am insanely proud of her!!

I'm so ready to get my hands on Jack that I can hardly stand it.  Oh, I miss him terribly.  Being away from my precious children is absolutely heart breaking.

Thank you for your continued prayers.  I have to admit to all of you that your faith is so much greater than mine.  I have been shamed and humbled by how thousands of  people around the world never stopped praying for a miracle for my Lucy.  I, however, was only able to pray for mercy and no suffering.  Why wasn't I praying for a miracle?  Had I really stopped believing God could provide one?  I'm not sure.  But if I ever had doubts I have been reminded that the child I was ready to bury 4 days ago looked at me today and told me she loved me.  Unsolicited.  Because she does.

I have faith.  I believe in miracles.  I serve an awesome God.  I will never, ever stop praying for Lucy's miracle.

A Lazarus Moment

I would never try to compare anything in Lucy's life to the great miracles that happened in the Bible.  HOWEVER..today's event was as epic as any Lazurus moment in my opinion. You can watch this video that I took and see a little girl who was basically in a coma for 5 days open her eyes and talk.  YES!!!  Talk!!!

http://www.youtube.com/watch?v=vDn5g0Hs5zY&feature=youtu.be

Her interaction with us lasted about 15 minutes and then she was done.  She almost immediately went back to sleep and we haven't seen her eyes since.  If there had not been 10 people in the room (not all related to me) I don't think anyone would have ever believed it.  Everyone was in tears.  Even our nurse!

While those 15 minutes will forever be etched into my mind, today continued to be a day of ups and downs.  We had a Family Care meeting with our entire team of doctors and were bombarded with tons of information, much more than my feeble mind can process.  There are still so many unknowns in this whole equation.  I am going to take a moment and try to lay out the facts in note form.  This is for my own good as I  know that one day I will need to look back at this and remember the whole picture. 

What we know:

• An event happened in Lucy's body that caused 40 C (over 104.5 F) fever that persisted for more than 48 hours. 
• This event caused her body to shut down and the high fever is likely to have caused the seizures. 
• She has lost most of her ability to communicate, minus brief comments and interactions.  All of which I must note are purposeful and meaningful. 
• We do know that her vision has been greatly impaired.  We think she might be able to see something, although we are not sure what or how much.  She can not make out faces and can't even tell you if you are holding up a ball in front of her face, but she seems to be tracking.  
• During periods of awake time she is consumed with frustration, fear and confusion.  She cries for long periods of time although she does not appear to be in pain.   

Theories and Facts:

• The doctors are beginning to think that maybe Pink Eye led to a viral infection that leaked into Lucy's brain.  Possibly through the shunt.  This we will probably never know.  
• Today's EEG revealed NO seizure activity and NO brain damage.  PRAISE GOD!!!!!!!!
• Today's EEG did reveal a very tired brain that had a lot of recovering to do.
• The doctors do not feel as if the eye sight issues are permanent.  This, however, can not be verified until an Opthamologist is able to do a thorough exam.  That will probably not happen until Wednesday. 
• Most, if not all, of Lucy's deficits are reversible and Lucy should make a pretty strong recovery. 

It is known that our bodies have a memory system where neurological events are stored.  For example, if a stroke victim were to catch the common cold he or she might be knocked down for several weeks and might exhibit some symptoms of the inital stroke (slurred speech, paralysis).  What the doctors are theorizing is that when Lucy's body contracted this virus (if that's what it really was) her body's memory took her back to the time of her Meningitis and Thiamine Deficiency.  She has most of the clinical symptoms of Meningitis and she has lost her eyesight like she did with the Thiamine issue.  Again, this is theory and we are just working with the best information we can put together.  

There are so many things that I don't know.  There are so many things that I may never, ever know.  But what I do know today is that I witnessed a miracle.  I saw life in my baby's eyes that I never thought I would see again.  I saw a little girl who was created with so much fight not even a life threatening illness or a cancer reoccurance can keep her down.  Today was amazing.  

For the past week Erik and I have taken turns holding Lucy in a chair for hours on end.  We each hold her until either our bladder is ready to bust or our bodies just can't take it any longer.  The very thought of putting her in her bed is more than I can take.  When we have laid her down we have been convinced that it would be our last time to ever hold her.  We have spent many nights preparing to wake up to a child who has passed on to heaven.  

But God continues to amaze.  He continues to answer our prayers.  He continues to use Lucy's little life to touch so many people.  I compared this emotional, mental and physical race we are running to a Tsunami.  Not a wave that a surfer might ride to reach shore quickly.  No, a tsunami.  One that starts in the middle of the ocean and travels thousands and thousands of miles with no shore in sight.  And quite honestly, I don't even know what shore are we headed for!  

The reality is we have a very, very sick child.  We know that the 15 minutes we got out of Lucy today were amazing, but there are 1440 minutes in a day.  You do the math.  It's not very impressive.  But those few short minutes were enough to give me hope that I just might get to take my baby girl home and actually have some quality time together as a family.  It might just happen.  That in itself would be a miracle.  

We will be in the hospital for 10 more days.  We are going to begin some simple forms of PT, OT and speech tomorrow.  While we are here we are going to try to re-train Lucy to eat.  If we could get out of here without a feeding tube it would be amazing!  What a blessing to get to spend our time together without that worry and fear.  

I have been blown away and encouraged beyond belief by the hundreds of comments that have been left for our family.  I am humbled that so many people love our little girl.  She really is our "light."  I will never stop believing for the ultimate miracle. 

Never stop praying. 

Fresh Air

We went for a walk this morning. I'm not sure Lucy realized it but she sure seemed peaceful.

Specific prayers

I should be sleeping. I have never felt exhaustion like I am feeling right now. But sleep continues to elude me. So I guess I will have a therapy session.

So many people along the way have said countless times about how Lucy's story has changed lives. How God is using lucy to bring people closer to him. I pray that one day I can appreciate it. Maybe one day I will be able to be thankful for that. Not right now though. I just can't seem to put my mind around why a great and powerful God has to use a 5 year old child to change people's lives. I just don't understand why God, being so omnipotent, can't just change people's hearts.

So as I wrestle with this thought for years and years to come I would just ask all of you who have left such kind comments to not let lucy's suffering be in vain. For those of you who have said she's changed your life, shes made you a better mother, she's turned your heart back to God...please don't let her suffering be in vain.

It's easy to get wrapped up in the story while we are all living it. But in 1,2,5 years from now will you remember a little girl named Lucy? I promise you if you had ever really met her you would never be able to forget her.

God created Lucy differently. I now wonder if He made her so full of life because he knew what a short life she would live and He allowed her to enjoy it just a little more acutely than other children.

Lucy has communicated with us very minimally the past few nights. She has, however, rattled off phrases and smiled some. It's almost as if she is remembering every happy thought shes ever had. We've started writing down the things she is saying. She's talked about building sandcastles, riding the boat, hunting for Easter eggs. She's even fussed at Jack a few times. That was hilarious!

I've realized that my child has lived a blessed life because all she has are happy memories. There are no hard times Or bad moments to relive. She even managed to smile her way through 18 months of hellacious cancer treatment and continuous rehab.

I will never, ever get up on my daughter. EVER. As long as she has fight left in her I will be right beside her. My heart aches beyond words because I wish i could fight for her. I wish I could trade places for her. But I can't. All I can really do is hold her and comfort her. When she becomes semi alert during the day she whines and moans until I pick her up and hold her. And then that's what I do until it's time to go to bed. Hours upon hours upon hours of sitting and holding and comforting. I know it brings Lucy comfort but I honestly think it does for me. There is no greater validation in the life than to know that your arms can take away hurt, fear and sadness. I have told Lucy everyday, many times a day, how grateful I am to have been chosen as her mother. It's been one of the greatest gifts in my life.

I don't know if we will ever leave this hospital. Lucy's little heart is beginning to show signs of fatigue. Her little body is so weak. Cancer aside, I'm just not sure her body can fight off whatever it is that has wrecked havoc upon her system. We want to go home to spend some quality days as a family but right now she is too weak to move. So we are hunkered down. Fighting this battle here in the place where we asked to be.

LeBonheur Hospital. The place where I found hope 18 months ago and the place where I am now finding peace. We are surrounded by doctors, nurses, and hundreds of other employees who fell in love with Lucy last year. They have made it their mission to make sure we are comfortable and feel as safe as if we were at home. These friends we have met along the way are guarding our family as if we were holding the queens crown jewels. But, I guess we are in actuality. We are holding the Kings crown jewels.

Many have asked for specific prayer needs. I will list a few but know that blankets of prayer are needed because there are so many specific needs that I can't even begin to wrap my mind around them:

-rest, mercy and no suffering for Lucy
-understanding and no fear for Ella
-a constant remembrance of my love to fill Jack
-Lucy's father. My precious husband. May he continue to grieve and not feel as If he has to be strong for any of us
-Lucy's grandparents and immediate /extended families
-restored faith for all of Lucy's friends and all the little children who have been praying ceaselessly for healing.
-Lucy's doctors, nurses and other care team members
-eventual healing for our family

Much love--Kate

Update

The past few days have been a whirlwind. We've had a few good moments but a lot of hard ones too. Last night it was hard for Erik and I to pull our eyes away from the monitors. Things were not looking great, but it's almost 24 hours later and Lucy is resting better than she has for the past several nights.

Human emotions are a crazy thing. One moment Erik and I can be sobbing uncontrollably and then in a snap talking about making the bed. The tears come fast and heavy. And then we find strength that is unexplainable to make it through the next moment.

We spent a good deal of time today talking to doctors. I am begging for a schedule..a plan. But the reality is that there is nothing at all we can plan. Nothing.

We will remain in the hospital until Lucy is stable enough to come home. The goal is to get her home as soon as possible so that we can spend some good time together as a family. For that to happen everyone agrees that a full course of antibiotics to treat meningitis needs to be administered. That will happen over the next week with an evaluation at the end to determine if another week is necessary.

Thank you for your continued prayers, love and support.

One BIG Request

I'm not sure why I didn't write this yesterday. Maybe it's because it's just too hard to even speak of. It is also the source of a lot only anger right now.

As many of you prepare to go to your place of worship I would ask that you please ask God for a specific miracle.

Lucy has lost her eyesight. Whatever (besides cancer) it is she fighting ( meningitis, infection, virus) has claimed her vision. No one is sure if it is permanent but Lucy does know she can't see. One of the last things she said to me was that she couldn't see. She then proceeded to cry herself to sleep and hasn't been very alert since then.

I guess it's a blessing she sleeps 24 hours a day. At least she isn't scared. However, if our ultimate goal is to try to get home and have any quality of life moments with her then her eye sight becomes a huge equation.

Please pray for miraculous healing for my child. Please pray for her eye sight to be restored. But most of all please pray for mercy and no suffering.

Yesterday, for the first time in about 15 months, I honestly prayed for Gods will to be done. I haven't stopped pleading and begging for my child's life but I can say that I am now prepared to accept her healing in any form.

Thank you all for your prayers. I swore I wouldn't get on Blogger for a while. I guess, though, this really is where I have found my therapy for the last
18 months.

I find myself right now doubting that there could be a loving God but at the same time having faith because thats all I've got.

I've been told by other mothers who have walked this road that in the coming days I will have strength that is truly beyond anything humanly imaginable. I sure hope so. Because what I feel as a human causes me to stop breathing. The pain is unbearable and my heart literally screams.

We have been surrounded by our family and closest friends which is everything I could hope for. I have found comfort in the thousands of messages you all have sent and truly appreciate the respect and privacy we are being given.

I know that as a "family" many of you have grown to love Lucy. For that reason I will try to update as often as I can. 18 months ago you guys began to sustain me on a daily basis. I am thankful for the thousands of people who have and will continue to pray ceaselessly.

She Will Find Peace

Dear friends,

Lucy's cancer is back. There is nothing we can do. We don't have a long time with her but we are determined to make the most of every minute.

Our only prayer is for mercy and no suffering. We have to protect Ella. She knows but we want her to be safe. Thank you for your love, support and prayers.

We have moved

We have moved to LeBonheur and will be in ICU until further notice. Prayers are coveted more than ever.

Quick Update

I don't have long but I wanted to give a quick update on whats gone on today.  I will make it short and sweet.

Lucy has maintained a fever of at least 104 and often 104.5 for more than 18 hours.  She is basically in a state of delirium from the fever which has, thankfully, not allowed her to fully appreciate the pain she is in.  She is being treated with some big gun antibiotics for what we feel may be meningitis.  We have been taken aback by today's revelations, which now include potential meningitis, an emergency CT scan, and an emergency MRI.  She also had her g tube removed, her shunt tapped and will have to have her shunt removed and then probably replaced later this week (if we can wait that long.)

I don't want to sound overly dramatic, but things are not good here.  We truly covet your prayers and ask that you keep Lucy in your continued prayers.  She is very sick.  We have a long way to go towards recovery.  The road, as its been laid before us, is going to be long and possibly hard.  Erik and I are devastated and very scared.  I hurt for my other children and long to be a family again.

I will update as time allows.  I know my faith has been tested before, and I'm not sure I can sustain much more, by my only hope is in Christ.  I ask that you go before Him and beg for mercy for my precious child.

Do You Remember That Post From The Other Night?

You know, the one where I talked about "one day?"

Well this "one" day has landed miss Lucy in the hospital. We are at St. jude waiting for surgery tomorrow.

Her body is rejecting the Gtube and she vomited so much today that it came out. She has been leaking fluids into her gut which has been causing her severe pain.

It's been a horrible night and we sure would appreciate some prayers for our girl. We have some tough decisions to make before tomorrow. Something's gotta give. Lucy has suffered for too long.

Ella's First Triathlon

Today Ella participated in our town's first annual kids triathlon.  She swam for 50 meters, biked for 1 mile then ran for1/4 mile.   I can't even begin to explain how excited she was about this event.  To be honest, I was as nervous as a cat this morning.  My adrenaline was pumping, so I can't imagine what Ella was feeling.

Yesterday, we spent some time driving over the course and practicing her transitions.  When this morning came, 9:30 couldn't get here soon enough.  In the first event, the 50 meter swim, Ella completely dominated. She was the first one out of the pool and had quite a lead on her bike.  She lost a little speed when she had to ride her bike on a gravel path, but she managed to regain her pace one she hit the pavement again and led the pack the rest of the way.

In the picture above you can see a bit of me running with Ella.  I am no runner (at all) but when I saw her round the corner with sheer exhaustion in her eyes I went down and met her and ran with her to the finish.  She ended up with a 2nd place finish and I was absolutely amazed at her performance today.  She really, really wanted a medal and bless her heart she got one!  2nd place in her very first triathlon.

The exhaustion didn't last long.  As soon as she got her medal and some orange slices she perked right up and was able to cheer on the others as they finished.

 Way to go sweet baby girl!  Mommy and Daddy are so proud of you.