Thursday, February 6, 2014

Plus 100




It was close to 4 years ago when the mention of a bone marrow transplant was first introduced....
At the time, it had already been over a year that Parklen had been ill.....we had just received his diagnosis and I met with a transplant doctor to talk about future possibilities.....in case the primary treatment options didn't work.

The meeting with that doctor was terrifying.  I spent the next few years dragging my feet on the entire transplant idea.  I knew that Parklen was sick, actually at times, it felt that I was the only one who really knew..... I just always hoped that the treatment plans would pan out.  That drug therapy would change his life, give him a chance.

As time went on, it became very clear to me that he was not going to get better this way.  I could tell each day when I woke up and looked him in the eyes that every moment was becoming harder and harder for him to make it through.....
A year ago last month he got very sick.

Parklen had been on oxygen continuously for quite some time, unable to breathe enough on his own to maintain a healthy level of oxygen....he had spent weeks and weeks on the couch.  He needed assistance to and from the bathroom or anywhere else he needed to be.  His pill count was past 20 a day...he was receiving breathing treatments every few hours.....he smiled still, but his eyes told a story of pain that I will never forget....

After some time in the ICU down here in Denver it became clear to everyone that his disease was no longer taking its time...  Its course of destruction had sped up to the next level.  It was overcoming his organs more quickly.....  When they had to help him breathe because he was no longer strong enough to do it alone.....the doctors became very serious.  I can remember sitting in what they call a "care conference" there were so many important people in the room.....and then there was me.  We were there to talk about Parklen's future, and I was there to plead for them to do something to change it.

Fast forward 6 months and you would see close to the same picture, Parklen still struggling to live....hanging on to what little bit of normalcy he had left....  Then, another ICU trip.  This one was longer than all the rest, and more scary than they had ever been.  I had noticed a change, not just in Parklen's health but also in his spirit.....in his personality.  He wasn't the same little boy.  When one of my favorite medical people said to me that she cannot believe that Parklen lived through the summer, I knew that what I was experiencing was him, beginning to give up.

I cannot begin to imagine what a five year old feels when their entire existence has been one of pain and sorrow.  When every day has been a struggle.  At five years old, looking at the world and noticing all of the things you cannot do.  Seeing the ugliness of sickness first hand.  Not having the ability to understand the things that are happening but knowing that it hurts.

So many things compounded over the course of the summer that led to the decision of the transplant. After years and years of fighting the idea in my mind and praying each day that the road would not lead us there, I felt peace as Devan said, "we should do it."  I was still very much afraid, but after watching my son slip closer away from me than near......I knew it was the right direction.

During the time Parklen spent in the hospital, I met with the bone marrow doctor almost every day for a month....  He was very real, very open.  He wasn't handing me a false sense of hope....he wasn't telling me he could fix my son.  He was holding open a door in which we could go through....a door that lead to a room full of uncertainty....a room with a chance at life, and a very real chance at death.  The only thing....had we chosen not to go through the door....Parklen would most certainly be on his way out of this world...if he had not already gone.  I didn't enter this room with a veil over my eyes....I didn't enter it with any certainty of health for Parklen.....  I entered this room with nothing absolute...besides the knowledge that I wasn't alone.....I was carrying my son into uncertainty with an army behind us......my best friend beside me, and on my other side....a faithful God who promises to hold us up when we cannot hold ourselves.

We moved out of our home in Casper almost 6 months ago.....to start the process...

As I look back now, I can still feel the fear that consumed me on that drive.  I can still feel the weight of the decision we had made.  The knowledge that either outcome would never change the fact that the decision had been ours.  I can remember thinking as we pulled away, I wonder if Parklen will be coming home with us.

We had many stumbling blocks towards the beginning of this process.....many things that made me, if only for an instant, wonder if we had made the right choice.  I kept saying these words in my head, "We have to try...."

I can honestly say that the last five years have been the hardest thing ever.....as a mother, they have all but taken the very strength from my bones..... I am weary, every single day.  My body has taken the toll of stress....the stress of carrying such a heavy load.  A load that was far too heavy to carry alone....and when the friends began to fall away....when I proved to be too much of a burden to bare....I was always able to fall into my creator.  I will never say that I wasn't angry...because when  your baby is sick, it makes you angry.  When your child is born into a life of suffering, it makes you angry....but being angry doesn't mean being doubtful.  I have never doubted the presence of God.....and I have felt His comfort throughout every hard moment.  There have been piles and piles of struggles that I have faced during the last five years that had nothing to do with Parklen....trouble with friends, finances, my marriage,  family.....all of them adding to the mixture of things that were working to destroy me and my faith.  But I held on.  I held on to the only thing I could.... the thing that I could not see with my eyes, but feel with my soul.

The hurts of the last five years are countless.....

but they are making their way out.

Today is more than a giant milestone for the transplant process...it is a mountain top.  It is the place where we stand.....where we can look out over our past and know that God has brought us above all of that.....a place where we can squint our eyes towards the future, and although not everything in that direction is clear, we can tell that the sun shines brightly there.....and we can smile as we begin to hike back down this mountain we have climbed.

100 days.
+100....

Parklen is a new kid.
He feels like he never has before....
His eyes are bright, his smile big....
the possibilities are endless.

But please, don't mistake this 100 day mark as the end.....
His troubles have not passed.....
the true work is only just beginning.....

He has been brought to a place of health....but his body is not whole just yet.
A tiny bug or sickness could knock him back down quickly.
It will be many many months to years before we can say our fight is over.

His doctor considers his disease to be in remission......
we must remain vigilant.
We must stand strong in the face of temptation, the temptation of slacking off.....taking it easy.
We must refuse to forget all that we have fought for.

Please never stop praying for Parklen, for our family.
Please know that even our closest friends may not see us.....
Please don't take offense if we ask you not to come by......
Please know that our family needs you still......
Parklen will have to come down for appointments frequently......

but no matter how difficult the decent may be from this mountain top where we stand....
we are up for the journey.

Thank you for taking this trip with us....
thank you for always lifting us up in prayer.....
thank you for celebrating as we have....
and for crying with us too....

Here is to day +100......to the beginning of the next chapter.....



2 comments:

  1. Prayers will still be said for Parklen and his family that this next chapter gets easier and each chapter after easier yet. May God be with you.

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  2. Our prayers continue to be with you all. God is so amazing, a comfort in times of trouble, beside us whether we realize it or not. He is with us in the good times and in the bad. I'm so happy that you know Him as your Saviour, Amanda. Just never lose sight of Him. If you do, all is lost. It held Job in good stead, and it has held you in good stead too..."when the friends began to fall away"...there is no Friend truer than Jesus!

    We love you all!

    Lisa in Dtown

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