Wednesday, May 23, 2012

Feeling the weight.......

My shoulders have felt heavy. 

I feel like I am gasping for air.

When it comes to Parklen..........I feel overwhelmed. 

Denver has been back and forth with me, still with no certain plan.

A couple of years ago, I was given a meeting with the BMT (Bone marrow transplant) team.  It was one of the hardest things I have done to date.  I was told that often, as a last resort, children with ALPS are given a transplant, It takes months of living in Denver for Preperation and months after the transplant for recovery.....I was also told that with a child like Parklen, survival rates were only 60%  meaning that 40% don't survive.  After the meeting, I did my best to push all of this to the very back corner of my mind.  Since then, I have thought about that meeting only a few times, each time feeling sick and forcing myself to forget again.

When I spoke to Denver on Monday, the Dr. said to me, "We are not quite convinced that its the right time for a transplant."  I was in shock.  Never in a million years did I think we were even close to this point.  NEVER.  I could not believe that this was even in the minds of his team.  I knew that he was worse, but I suppose I didn't think he was this bad.  I was sitting on the phone, thinking about all of his doctors sitting in a room, weighing the mouth hanging open and tears filling my eyes.

I told the doc, to go ahead and stop thinking of the transplant at all.  Its not happening....not now, and hopefully not ever.   They agree that right now, isnt the right time.....however, it was brought up....It was considered. 

We have to travel down for Parklen's oral surgery in a couple weeks, I am having a meeting with his main doc then......Its so hard that there isn't a plan.  No one knows what to do for sure. 

I haven't been sleeping, instead laying awake thinking, or jolting awake from a bad dream.  I just hate the unknown.  I hate it.  I hate that I am the person in charge of Parklen's medical decisions.  I hate some way, I hold his future.  I hate that I cant see that future. 

There is a research hospital in Maryland.  They do studies on ALPS, I have been working up the pros and cons of taking Parklen there.....the cons, much more present than the pros.  They aren't offering any different treatments than Denver at the moment......I don't know what the right move is. 

Many of you have been more encouraging to me than you will ever know, the response from this blog is overwhelming....I thank you, and I ask that you would continue to pray. Pray for Parklen, for our family and please pray for me. 


  1. Praying for complete healing! Hang in there.

  2. Oh my sweet Amanda. What a blessing it is to be able to help in the supporting and encouraging of you and your family. Prayers will not stop and never run short for Parklen, for you, for your family... Amanda and the Hendys are so so so SO loved by the Willys.