It's Been One Week

This is the day the LORD has made; let us rejoice and be glad in it.  Psalms 118:24

It's hard to believe that it's been a week since we've been at the hospital.  One week ago today I took my baby girl to the doctor for what I believed to be a stomach virus/dehydration.  We arrived at the peditrician's office at 11:15 and by 1:00 we were at the ER at the best Children's hopsital around.  By 3:30 we received the most devastating news of our lives.  You try to process the whole experience and you just can't.  I've told many people that I can't even process what happened 5 minutes ago because you are constantly trying to prepare for what's going to happen 5 minutes from now. 

This was not supposed to happen.  Erik and I were supposed to be on a plane today heading to Colorado for a much needed snow-skiing vacation with 8 of our closests friends.  We had been planning this trip since November.  We have talked about this trip for months, looking forward to the memories that would be made.  But  now we are making different memories.  Horrible, terrible memories.  But memories that I know will fade away as the years go by and my Lucy defies all the odds.

Today was a good day.  I was in a bad, bad place yesterday.  At one point I looked at my baby laying in her hopsital bed and thought she would not make it to radiation.  I could see her dying in front of me.  I cried from the time I woke up to the time I finally fell asleep at 2:00am.  I was as far in the valley as I could have possibly been. 

And then the sun came up.  And it was a new day.  Last night I laid my baby at the throne of Christ.  I reconciled myself to the fact that she was never mine in the first place.  She is just on loan for a period of time.  While I will continue to pray that that period of time is a long, long one I am not guaranteed anything.  I resolved myself to giving it up and giving it to Him.  But don't get me wrong.  I am going to fight like Hell to keep her here.  Since my babies were born I have prayed a very selfish prayer.  I have asked God to allow me and Erik to live long enough to see ALL my children have grandchildren.  All of them--that includes Lucy.  I'm still praying for that with fervor, hope and faith.

Lucy had a great morning.  She once again suffered through physical therapy which involved standing, walking with assistance, sitting up straight, turning her head to the left and right and working her fine motor skills.  She had to sit at a table and play a short game of Candy Land.  This is one of her favorite games, but today it was sheer agony.  Walking is something she will struggle with for a while.  There are no promises as to when or how her full function will return.  The tumor in her spine was pressing against the nerve that controls mobility in the legs.  Her right side seems to have more paralysis and she has a lot more nerve damage/trauma there.  Her upper body cordination seems to be fine, but she has no muscle strength at all.  While she is at St. Jude she will undergo extensive OT and PT to rebuild/relearn these skills she lost. 

Erik and I met with the head of oncology radiology today.  He painted a little better picture than the Dr. yesterday, but still reminded us of the risks that radiation and chemotherapy pose.  While those risks are very clear and present dangers, we really don't have an option.  We discussed a more experimental form of radition involving protons instead of photons but failed to come to a difinitive reason to stray from the tried and true.  Once we make our decision about the radiation option I will share more about our thought processes.  It's just a lot to take in in a very short period of time.   Decisions like the ones we are making should take weeks to make.  We have less than 24 hours. 

They took Lucy off the Zofran (anti-nausea medicine) mid morning and removed all her IV fluids.  We did not agree with removing the Zofran but our NP thought it was necessary to see how she would tolerate eating without that buffer.  She did so well until around 4:00.  Around that time she got very sick.  It was only once but it was a big one.  While this was definately a set back, it was only a minor one.  Today was still a million times better than yesterday. 

As of this morning we were tentatively planning to try to get out of here by Friday.  After the vomiting episode today the St. Jude team thought it might be best just to do a hopsital to hospital transfer and finish this recovery at St. Jude.  I was so disappointed to hear that because I want to be home with my Ella and Jack ASAP.  However, right now this is all about Lucy.  Whatever is best for her.  She can not begin radiation until she is healthier and clearly we all know the benefits of starting radiation immediately.  Lucy has got to gain some weight also.  St. Jude feels that they might be able to control her caloric intake and even possibly supplemental feed through a button in her tummy.  This is no big deal and will be removed after treatment, but it would provide a sure-fire way of getting meat on her bones.  All of this is NOT final, just some things we are tossing about. 

Tomorrow we will go on a tour of St.Jude

Highlights of the day:

 Two guys from the football team from Brighton High School came to visit Lucy.  They brought her a Curious George monkey and a Bible.  She was exhausted by the time they got here, but she was so happy to see them.   I don't know if she thought they were really cool in their jerseys or she was just happy to get a gift.  Either way I was able to see this beautiful smile.

This was the first time Lucy let me sit in the bed with her.  Every inch of her little body aches from surgery so the extra weight on the bed just sent her spiraling.  But today I got to hold my baby--the way it should be.  I was really, really happy.

 Sitting at the table playing Candy Land

 She fed herself some ice cream.  Go Lucy Go!!


Exhausted, angry, confused and just plain not happy after PT.  Notice the blanket?  Ella was my only child to attach to an "object."  She also was my only one to take a paciferr too.  She loves to rub the satin around the edges of this blanket that my Aunt Kathy gave her a long time ago.  It was amazing how much peace that blanket brings.  God knew a long time that she would need something so comforting.  An inanimate object that she can cling to. 

Go Lucy Go!!!

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