The easy way out

We have one test result this week that would make Nathan ineligible to continue on this protocol. He improved after round 1 and remained stable after round 2. The doctor thinks we should continue if we can for the last round he would be eligible for. That probably means an additional week or two in the hospital (Nathan has been in 14 days as of today). I'm not very hopeful that another round will do any good considering we didn't make progress this last time. The doctor seems to think it could. My head says that if there is a chance it could help then of course we should do it. There is a huge part of me that just wants to be done and go home. I could never have even subconsciously hoped for disease progression to throw him off of the study, but if I look deep (probably not so deep actually), I have to admit to myself that part of me hopes that he has built up a resistance to the treatment and that he will be forced off-study.

I'm sick of not having the family together with Nathan in here with one parent and the other one of us out with Julia and Lauren. I'm sick of sleeping in the hospital. I'm sick of seeing Nathan spending his time in the hospital when he should be home in school, going to church, playing with friends, etc. And more than anything I think I'm so very tired from the weight of three plus years worth of making life and death decisions regarding Nathan's care and treatment. I don't think I would feel so bad if the looming decision made itself for us. That would be the easy way out and as of right now, I'm okay with that. I *think* I might actually feel better about having the decision made rather than agonizing over balancing the two weeks of continued hard hospital time over what seems a slight chance of getting some headway out of a third round.


Katie Altmann said...

Thinking of you guys always and praying for peace with the decisions you have to make!

I pray for continued strength, peace of mind and guidance as you help Nathan and your family each day with his disease!

I hope for a Happy Thankgiving for all of you!

God Bless!

-- Katie, Kyle and family

Anonymous said...

Please know that you have so many people thinking of you all. I don't post often, but follow you, Susan and Nathan's pages daily. It really struck me what Susan said about Nathan's quality of life right now - as I parent I understand that desire to give him some normalcy and peace right now. I wish you the best in this situation.


The Maven said...

Just wanted to send some hugs and positive thoughts from my neck of the woods. I'm not a family friend or anything, but I do follow Nathan's journey through a link on one of my friend's blogs. He's an adorable little boy and quite the fighter. I'm amazed at his strength as well as his family's.

Thinking of all of you.

Josh Gentry said...

You wouldn't be human if you didn't wish for the weight of those decisions to be gone.

Hang in, buddy.