Reincarnated As A Mother

Wednesday, July 11, 2012

Day One: Brutal

I just got the sweetest email saying "the heavens are being flooded with prayers"... and I couldn't agree more.
There is huge power in prayers.  I remember the difference it made before.
So thank you for all on our behalf.  It is very humbling.
Your comments, emails and phone messages have given me the strength to get through this day.
And perhaps, even survive tomorrow.
I never thought I'd be here again.  Cancer was the one thing I've feared the most for my children and yet....

So let me get you up to speed.
My sweet little boy had a rough night last night and this morning with a fever and pain.
By the time we went to the Cancer Clinic (MSTI-- Mountain States Tumor Institute), Kean was
exhausted and getting sicker by the minute.
My dear friend, Elly Moomey, who happens to be a nurse, went with Byron and I to take notes.
Dr. Camilo spent several hours teaching us about Leukemia, preparing us and examining Kean.
Here are a few of the points that made it out of the blur-
He is 95 percent certain Kean has Leukemia.  There are two types.  Typically, ALL is the better type to have because it has a higher cure rate etc.  However, Down's children do not respond well to the treatment and it makes it very complicated.  So maybe the other, more dangerous type, AML is what we should pray for-- it is all very confusing.
With ALL, we can expect to be in the hospital 1 to 2 weeks but here's the clincher... he'll be actively fighting cancer for just over three years!
With AML, he will be in here for six weeks but have a much shorter time overall. 
I guess we'll deal with whatever we are given.
Like we have a choice, anyway!
 By the time we were admitted to the hospital, we had one tired, cranky and sick boy on our hands.
They gave him a dose of Tylenol with Codeine at MSTI and tried twice-- unsuccessfully to start an IV.
At the hospital, they got the IV in, gave him some Morphine for the pain and we finally got him settled down.
Okay, that's a joke.  There's no uninterupted sleep in this place.  In the space of a few hours, he'd fall asleep, and then they'd wake him up for X-rays, EKG's, Ultrasounds and now... we're having problems with his bladder not emptying.
It never ends.
So here's your primer on Leukemia. As I understand it, the body makes white blood cells and when there is enough, the body sends a signal saying stop production.  With Leukemia, that signal is shut off and so the body continues to manufacture the little buggers.  But there is only so much room in the bone marrow and with Leukemia there is severe overcrowding and therefore, the cells start to become smushed and mutated.  Kean's sore, swollen arm must have been overloaded with the little guys-- and the doc told us, it is likely every bone in his body is hurting.
And that is what is killing us, to watch him in pain.  He already looks so pale and sick.  Tomorrow morning at 9:30 they will take bone marrow out of his hip and put in a PIC line (more permanent IV).  Within an hour or two, we should have preliminary results as to what type of Leukemia we are dealing with.
On Friday morning, they will do a Spinal Tap and give him his first dose of Chemo.
His sisters are terribly worried about him losing his hair... sigh.
Byron is heading home tonight and I'll hold the fort down with Boy Wonder.
Thank you for all the messages of love and support.
We hate to, once again, be the poster children for charity cases.
But, we'll get over our embarrassment and thankfully accept all of your prayers on his behalf.
My friend Janet sent me a message saying "Go Team Kean"!
Let's go!


Britany said...

I know you have lots and family and friends in town, Lonnie, but really -- if you ever want me to take the girls for a day or a night or a few hours -- paint toenails, go swimming, see a movie, whatever fun things we can find to do -- to make things easier on them, you, and Byron, PLEASE call me! I love you all like family, and I'm sending prayers up to Heaven for you constantly. You and Byron are the bravest, strongest people I know, but if you need anything at all, call me. I'm right here and will drop all my non-existent plans with a single phone call. Lots of love to you -- all.

d said...

Lonnie, I am so sorry for what you are going through. I very clearly remember my days at MSTI, and the fog I walked in for days after my daughter was diagnosed. She spent a year and a half doing chemo, but she is still here today and only lost a little hair. Dr. Chang and all the staff there are fantastic! You are in good hands! Know you are in our families prayers, and also know you can call me anytime if you need to talk or anything else. Stay in touch. Debby

Nicole Rasmussen said...

Lonnie and family, You are an amazing woman and full of so much strength. Your whole family will be in our every prayer! Please add me to your list of "helpers" with the girls. Thinking of you! xoxo

Melissa said...

Oh Lonnie! My heart hurts for you and for Kean! You will be in our prayers. We sure love you guys. You guys have been through so much. Let me know what i can do to help you out. I love you guys!!!!!

jeaninel said...

Lonnie, I think of you so often, and so fondly.... please know that you, your son, and all your family will be in my prayers throughout the road ahead. Much love to all of you.... Jeanine

Sherri said...

Hi Lonnie and Byron,

I've just read the last few post and I am just sick! I'm sooo sorry your family has to go through this.

I hope through all of this you'll find peace and we hope Kean feels better soon. Our prayers are with you.

We Love You!