A Warm Blanket of Love

That's really how we feel.  Surrounded by love.  We have been so touched by the flood of messages and

offerings of prayer and love.  Thank you-- you have no idea how it strengthens us, especially at moments when we

are so discouraged.

Byron brought the girls down tonight.  They've sure missed their baby brother...



 and were sad to see all of his battle wounds.

He's giving Voodoo dolls a run for their money.  The two little square bandages just above his

diaper are where they inserted the needles to take out the bone marrow.

The doc said it was like pulling toothpaste through a needle.

I can tell he's sore.  Everywhere.

 The doctors told me in the middle of the procedure for the bone marrow, Kean's IV (the one they were

administering the meds to keep him in la-la land) started backing up.  They had about two minutes to

put in a central line before he woke up.

  Plus his breathing dipped low enough they had to put a soft, rubber oxygen tube down his throat.

On the bright side, they're more prepared for these "curve balls" tomorrow when they sedate him for his Spinal Tap.

The pic below is just after the Bone Marrow procedure -- the tech is giving him a sonogram (I think) where they get a baseline on his heart.  Some of the meds he'll be taking have some nasty side effects, like heart, liver, kidney, bone damage etc.

So here's what we've all been waiting to hear.  Early this evening, Dr. Camilo and his nurse sat me down for over an hour

to give me the news that Kean has Acute Lymphocytic Leukemia or ALL.  It is the type we thought he had but weren't sure.  I'll try and give you the main points of our conversation.

The good news is ALL is curable-- typically 85 to 90 percent.

The bad news is, kids with Down syndrome don't metabolize the medications and the survival rate goes down

to 70 percent.  That's okay.  We believe in our miracle man.

His bone marrow samples showed 100 percent cancer cells.  No wonder he's one sick puppy.

Tomorrow at 11 they will do the spinal tap-- pull out some spinal fluid to test to see if cancer cells have gone into his brain and the central nervous system.

He will receive his first of ten different kinds of Chemo drugs-- all with really sicko side effects.

He will get his first dose of Steroids.  They told us he should start to feel better in 4 or 5 days.  But we will not have

our little boy back-- the steroids will bring out "his evil twin".

I guess he will be rotten for the next 28 days.

So hang on.

You'll be proud of me, I held it together quite well.

But here's what has me somewhat freaked out:

His treatment will last 3 years and 8 weeks.

Is that just the craziest thing you've ever heard?

Okay, maybe the second craziest thing.  The news that Kean has cancer still has me reeling.