Lenore - posted on 04/04/2009 ( 1 mom has responded )
PLEASE SEE BLOG FOR FULL POSTING
Had a good cry last night. Feels like it lasted for hours. My eyes are still swollen and puffy as I type this morning. Hunter is still asleep.
So we got the talk yesterday on the brutal truths of every possible scenario regarding the Bone Marrow Transplant.
Basically, Hunter is in for the hardest challenge of his life.
And so are we.
The bottom line is that Hunter has a life threatening disease. His AML Leukemia is extremely aggressive and has now survived all of the chemo that has been used to fight it. Our only option is to go to transplant and replace his marrow and hope that his cancer doesn't return. If his cancer does return after the transplant.........we've been told the options are pretty dismal. (This was the "worst case" scenario Doctor speaking. I politely asked him before the talk if he could make sure that the "best case" scenario Doctor show up to lay out all the truths and he politely told me that he'd bring both).
Aside from the typical, horrid side effects from the chemo and the radiation, Hunter might also experience extreme mouth and stomach sores, fluid overload, severe abdominal pain, liver failure, kidney failure or heart failure. Oh and aside from all of that - it's never really over.
If and when Hunter survives all of this..........as he ages - we'll have to deal with all the other issues of the harsh treatments that he's receiving. He could not experience puberty, (which can be brought on by meds apparently), his growth could be effected, he could have learning disabilities, he will most likely be sterile and won't be able to reproduce and he could have permanent organ damage that could cause serious issues from the huge doses of chemo and radiation that he has and will continue to be treated with.
hmmmmmm...................not so bad.
We were told that since his disease is life threatening, the treatment itself is also life threatening. After transplant, they've given him a 30-50% chance of being completely cured.
Oh and I can't forget the Bridges Team that we will have the pleasure of meeting. I'm sure a lot of you haven't met them yet or even care to. They are the "end of life" care team. We didn't get to meet them yesterday, but apparently next Friday will be our meet and greet. I've never wanted to NOT meet someone so much in my entire life.
Found the tiniest flower to smell.
I feel as if there is a loaded gun pointed right at my heart and it could go off anytime between now and the next 90 days.
I've never felt so lost. It's almost as if I've been in a constant daze for the last 12 hours and I have to keep bringing myself out of it. I'm forever choking back tears. Every day I have to wake up and fight this terrible, frightening feeling in my gut. Sometimes I wake up and just feel as if I'm dying.
From this point on we'll be spending every breathing, waking moment with Hunter.
Zen actually just made me laugh. Wow. What a nice feeling.
Hunter is going to be fine. Zen and I are going to be fine. This is going to be the shittiest time of our lives............but we're deep in the trenches now and we have to get out. We will get out. We've got big diggers............and we're ferocious.