Wednesday, January 11, 2012

Lifting my hands

Since my avoidance issues have prevented an update on Keegan's health for so long, we will once again have to resort to our friends, the bullet points.
  • Keegan's last set of labs were very stable, and his HLH markers were actually a touch lower too.  We are trying to stretch out time between labs, so if all else seems ok, we won't recheck until the 23rd!  We have continued to wean Keegan's steroids by a paltry amount every other week, but at least we're still weaning without too many big hiccups.
  • He has been off of tube feeds since before Christmas and mostly maintaining his electrolyte levels with a few tweaks and supplements.  Since the last steroid reduction, we've seen some of his old tummy issues start to come back, but we're not ready to draw conclusions from it.
  • Keegan has an appointment with his nephrologist tomorrow.  His kidney numbers have looked okay, but we haven't been able to reduce his diuretics or blood pressure medications.  We're anticipating a repeat of the kidney function test we did last year sometime in the near future.
  • Friday, he will finish his developmental/autism testing at Scottish Rite hospital.  The neuropsychologist at Children's did the initial testing at the beginning of December, and the developmental specialists at Scottish Rite will help us round everything out.  I didn't ever really explain all that went into the autism diagnosis.  Essentially, the neuropsychologist reviewed all the brain MRIs Keegan has ever had and used them to interpret the examinations and testing that she had Keegan do.  Ultimately, Keegan has suffered some extensive brain damage over the years from hypoxic events (lack of oxygen to the brain from his surgeries, ECMO, heart defect, etc), strokes, and the increased pressure on his central nervous system from inflammation due to HLH.  Much of Keegan's "autistic" behavior can be directly related to a specific medical issue, however the autism label will help us get the best treatment and education for him.  All of that is currently taking a backseat to his medical issues though.  
Which brings us to our trip to Cincinnati.  I haven't explained much about that yet either.  

We have an appointment on January 25th to meet with the immunodeficiency and bone marrow transplant team at Cincinnati Children's Hospital, the world's leading experts on hemophagocytic lymphohistiocytosis.  They have been researching Keegan's case and running many additional tests in advance of our meeting.  Audrey has an appointment on the 26th to be tested to see if she is a possible match for her brother.  There is no doubt we are taking Keegan where he needs to be for the best decisions to be made for his future.  But we can't help feeling anxious about it.  Mostly because there isn't really a good outcome from this.  

No bone marrow transplant would mean that there is nothing more we can do essentially.  The cocktail of drugs he is on now is not something he can stay on long term.  Not even for another full year.  And yet, there are few drugs remaining that hold much possibility for helping him.  As "stable" as he appears to be on the surface, he is far, far from it.  This is the high side of the wave - the crest.  When it will crash down is anyone's guess.

A bone marrow transplant may ultimately "cure" his HLH but won't affect his status as a heart recipient and all that comes with it.  Nor would anyone wish a BMT on their child any more than a new heart.  The chemo, the complications, the aftermath.  It can go well or horribly wrong.  That is, if we can even find a match for Keegan.  No one seems to know off-hand if it will even be possible given the fact that he has already had one donor that alters his body's antibody make-up.  

Just like with much of the last four years, there is no crystal ball to point us in the right direction.  No matter what we end up doing, it could be wrong.  We're starting to face questions that are less about his health and more about maximizing our time with him.

I suppose I've been avoiding posting about all this information because not putting it in writing meant not admitting it to the world.  Not admitting it to myself.  I know the odds; I know the options that await to us.  We are doing everything we can to take advantage of every minute of apparent health, no matter how superficial, and every day that Keegan has a smile and is feeling ok.  But the crushing feeling that it is all fleeting overwhelms us at the end of each day.  

It should seem fairly obvious that my faith has wavered over the last few months.  The few posts I have managed here don't hide it very well.  Every night as Keegan falls asleep, I fight back tears as the uncertainty of his future swirls in my mind.  Some nights, I can't summon the strength to fight them.  I can't lie about that.

But somehow I have to find the strength to put a smile on each morning when he awakes.  As his mother, I have promised him that I will fight for him.  That I will soldier on, and that I will do my best to make every day one where he feels at peace, no matter what tomorrow will hold.  The only way I can do that is by trusting that God has made the same promise to me.  He will not forsake us.  He will carry us and provide the strength that is needed each day.  

What I've come to realize lately is that I don't have to feel overwhelmed by His promises to know that they remain.  Faith does not always mean that my worries will be erased forever.  Grief and pain are human nature.  Hebrews 11:1 says, "now faith is confidence in what we hope for and assurance in what we do not see."  I have faith in this promise that God's plan is bigger than my son's life.  He will make this glorified, of that I have no doubt.  It doesn't necessarily make living in it day to day any easier, but in hindsight, my faith gives me that comfort.  Even if I never see that promise come to fruition in my lifetime, it does not make it any less true (Hebrews 11:39).

Lately though, my faith has not even been as strong as the paragraph above was easy to write.  Sometimes faith is even more basal than that.  Sometimes I just have to put my knees on the ground, and I can find the strength to stand back up again.  It is not me that takes that step.  He does it for me.  The mere act of being there, of lifting my hands in praise, reminds me of this great love.  I can be completely honest and human with God and expect that His response will be no different.  I can pour out my disappointment and despair.  That's when He loves His children the most.  When I don't think that I can make myself believe it anymore, I can do this one act and His mercy comes rushing back.  And damnit, even if that is all I have in me for the day.  It will be enough.  He will always be enough no matter how this ends.

"I Lift My Hands" - Chris Tomlin

Be still.  There is a healer.
His love is deeper than the sea.
His mercy, it is unfailing.
His arms, a fortress for the weak.

Let faith arise.  Let faith arise.

I lift my hands to believe again.
You are my refuge.  You are my strength.
As I pour out my heart, these things I remember.
You are faithful, God, forever.

Be still.  There is a river.
That flows from Calvary's tree.
A fountain for the thirsty.
Pure grace that washes over me.

Let faith arise.  Let faith arise.

I lift my hands to believe again.
You are my refuge.  You are my strength.
As I pour out my heart, these things I remember.
You are faithful, God, forever.


Stacie said...

Well said. As hard as it was to say it. And as harder as it is to live it. What a testimony you are through these trials. People love to see such transparency through pain. You aren't perfect. The pain is real. Yet, you still rely on God for the grace to get through each day. And HE will get you through, no matter what. Oh, how we need to get together soon. Message me with dates that might be good. Close to your house. If only to talk for 30 minutes. Or we could set a phone date we both get a warm cup of something and chat on the phone instead Praying for you, friend.

Much love,
Stacie Smith

Andrea Riojas said...

Your honesty and thoughts strike me so deep. I pray for your family often and think of you each day. I hope your trip will bring an encouraging plan for sweet K. Please call me if you need anything, until then, prayers will be lifted.

Anonymous said...

I worked in the Child Life dept. at Childrens when Keegan was a baby and I have been following your blog ever since. You and your family have a special place in my heart and I have no words to express how much you all inspire me even though I just meet you once. You are an inspiration to all the moms and dads that follow your story, with sick or healthy children. The love that you have for your children is contagious and I love them as if I knew them. I know I can not do anything to take a piece of your stress and worry away from you but just know each day I read your post I feel your words and wish I could do more. But as I have learned from you over the years we just trust with all of our hearts that we are following our path and the plan we have not created for ourselves, to take everyday and love our children and let them feel how much we love them. Thank you for finding the strength to post about Keegan and your family I know it is not easy but through the happy times and the difficult times I will be there to listen to each word you ever write. Cynthia

Anonymous said...

Just wanted you to know that you and your beautiful God given family have stayed and will continue to be in my prayers. You are so strong. I will continue to pray that you keep God close where He wants to be. Joy exists.

Gwen Rawls