Friday Night

Well, its Friday night.  Usually we are gathered with a group of friends, kids running wild, playing Wii or playing board games.  With spring around the corner we should be outside practicing softball, gearing up for catching frogs and fireflies and doing much-needed yard work.  But instead I am sitting on the couch/bed watching Lucy's heart monitor and talking with nurses about catheters, shunts, spinal pressures and the effects of steroids on little children.  This whole cancer thing still just does not make sense.  I've tried and tried and tried to get my head around it but I just can't. 

As I've mentioned before, this whole journey is like a never ending roller coaster.  Tonight's emotion......FRUSTRATION!!!  We are still trying to regulate the pressure buildup in Lucy's spine.  She is attached to an external drainage system that looks something like this:

Over the next few days we will be slowly weening her off to see how her body handles itself.  I have had it explained to me several times now but I can't say that I completely understand.  I do know that right now they are keeping as much CSF (cerebrospinal fluid) away from her spine as possible.  The doctors are trying to give her wounds time to heal.  However....I'm growing weary of the whole process.  We should have been at St. Jude over a week ago.  We should be starting radiation Monday.  As of now it could be Wednesday before we leave here.  I want to avoid an internal shunt in her head if at all possible, but if it will make her better and get this show on the road, then let's do it!  But alas, we will spend another weekend just waiting...and waiting....and waiting.

We continue to make friends on the 7th floor.  We now know 5 families who will be in treatment with us at St. Jude.  Every day there seems to be another Medullo patient admitted.  It just makes me want to vomit every time we see another room be filled.  It's just so unfair.  If there is one thing I've learned, though, is that brain cancer does not discriminate.  It does not care if you are rich, poor, black, white, female, male.  We're all here in the same boat.  Each one of us watching and praying as our children fight for their lives. 

While we have been here something special has occurred on the 7th floor.  Families have been brought together in such a way of unification that the staff says they've never seen before.  It's been a blessing really.  Mothers talk openly about their fears, father cry freely and then sometimes we all just sit quietly and are just consoled by the fact that we are walking this road together.  I can promise you that you never, ever want to walk this road, but there is comfort in knowing you aren't walking it alone. 

On another note...

Bringing me JOY today........

Psalm 18:2 The Lord is my rock, my fortress, and my savior; my God is my rock, in whom I find protection. He is my shield, the power that saves me, and my place of safety