Reincarnated As A Mother

Thursday, July 12, 2012

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.


5 comments:

Jennifer Snooks said...

Lonnie-
Your strength amazes me. It becomes more clear with every trial that Heavenly Father hand picked you to be Kean's mother.
I love you guys and am on my knees for your family every day.
We'll talk soon,
Jen

Christy said...

Lonnie,
Kean is a special spirit, who was willing to take an imperfect body and be tested far greater than any child should ever have to, just so he could have a body, come to earth and live with goodly parents & loving sisters. Your sweet Kean has a mission, a mission so great on this earth that he is willing to suffer unthinkable things. Heavenly Father has blessed you with a child whose heart and spirit are pure and gentle. Heavenly Father has blessed you with trials that many will never know or have to imagine. I have enjoyed following your family blog, but it makes my heart sad to read about Kean's new fight. I will pray for your family and especially little Kean. May the arms of our Father in Heaven hold you and your family close, comfort you and make you strong.

Nick said...

You guys will be in my prayers. Poor little guy. And three years sounds crazy! Heavenly Father has blessed this little boy so far, so I'm sure He will continue to bless and sustain him. Stay strong.

Pat said...

We were all sitting around on a cloud when God was handing out Earth assignments. "This next one is tough," He said, I can't order anyone to accept. I'll need a volunteer." I saw Kean's hand go right up without hesitation. God patted him on the back and said, "I am not surprised."

Then God paused, looked around and said, "The next one is going to be even tougher. I need someone to be his parents." I wanted to raise my hand, but I knew I was too weak. I looked across the mist at all the scared faces, but no one moved. Then Lonnie and Byron raised their hands. I saw God smile as he said "I am not surprised."

Karen said...

Love Love Love you guys... our hearts are with you. You are one tough family.. and Kean is a very lucky boy to have been born to exceptional parents and very loving sisters. He will pull through!! Prayers heading your way!! Karen Peterson