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.



Day Two: Sleep is Highly Overated

Oy.
I think we made it through the worst night of our lives.  I hesitate to write that... because tonight is still looming.  Until we know which type of cancer we are dealing with and get the chemo going-- it will be quite harsh.  That's going to be the word of the day-- harsh. 
I think I got a whopping 15 minutes of sleep last night.  Between all the tests, vitals and "surprises"... we were interrupted quite a bit.  First off, Kean is getting sicker by the minute.  His blood platelet count has plummeted and he is now anemic.  His right arm is horribly swollen and he hasn't moved it since yesterday.  And now we are dealing with a pretty high fever.  102.4 so far.  The Tylenol and Codeine seem to be like spitting into the wind.  The only relief he gets is from the Morphine and that doesn't last long enough in my book.  He's now on an antibiotic as well.  All this medication has made his bowels even more sluggish so they had to put a catheter in to empty out his urine.  He had 345 cc's... which is a ton for a little guy. 
He's in having the bone marrow procedure done as I write this.  They just came out and told me that was going well but now his IV is clogging.  So they will put in a "central line".  The doc wants to hold off putting in a PIC line until tomorrow when he gets his Spinal Tap.
It is all so very overwhelming.  One positive, I think, is that Kean is so sick he probably won't remember this nightmare.  Unfortunately, I can't say the same.
A few bright spots to note:  Kean's pediatrician, Dr. Sandstrom came by this morning and just cried with me.  She is wonderful.  It meant a lot.  Also, the Pediatric Orthopedic Surgeon we saw on Monday, Dr. Showalter stopped in to talk.  The doctors at this hospital are first rate.  And listen to this, my neighbor happens to be close friends with the Pediatric Oncologist who used to be here at St. Luke's and used to be partners with Kean's new docs.  He now is in Georgia.  I had the kindest conversation with him this morning-- he was full of great advice and great concern.  He also had a young toddler diagnosed with Leukemia - years ago.  And his son is in college.  He gave me great hope and will be an invaluable resource if ever needed again.
Again, I can't thank y'all enough for your sweet messages. We know we have an army of supporters and an arsenal of love in our corner.  Go Team Kean!

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!

Hold On... Buckle Up and Brace Yourself

Life sucks.  Big time.

As you know, Kean has had a fever on and off for much of the past week.  And then over the weekend, his right arm swelled up and became very sore.  Well, the blood work came back with “abnormal” cells—cells his new Oncology (Cancer) doctor says look like Leukemia. 

They are admitting Kean tomorrow at lunch time and will start bone marrow testing on Thursday morning to determine which kind of Leukemia and the plan for treatment.  We were told to expect to be in the hospital for 2 to 6 weeks.

So here we go again.  Back to St. Luke’s.  I’m worried sick about leaving the three girls again and even more worried about how we will survive watching Kean in pain, Kean lose his hair, Kean sick, sick, sick.

My mind is jumbled with all kinds of fears and thoughts but I am following the advice of a dear friend – another mom we met in NICU when Kean was so sick as a little pup.  She told me—ah, 2 to 6 weeks is nothing… you’ve already done way more time than that.  And she told us to take just a minute at a time… then work up to five.  So that’s what we plan to do.  We can survive one minute and then tackle the next.

Paging Sherlock Holmes...

This certainly isn't fun.  The mystery surrounding Kean's arm has only deepened.  We made it in to see the Pediatric Orthopedic Surgeon today and he is as baffled as the E.R. doc.  When he took the splint cast off Kean's arm, it was even more swollen and even more tender.  He ruled out "Nursemaid's elbow" which comes from pulling them up by their arms and in a way dislocating the elbow.  He thinks he has what is called an "accult" fracture (not sure I spelled that one right), where the fracture is so tiny it doesn't show up in an X-ray.  He said if that is the case, as the body heals, the fracture will show up on an X-ray in a week or two.  Or he could have some infection in his bones.  The specialist said his bone density looked a bit off in the X-rays-- so he sent us for blood work.  If that shows the slightest abnormality, he will order a sedated MRI to see what is going on.  I'm not sure what to hope for-- I just want him to stop being in pain and get back to his happy ol' self.  We should hear on the blood work results tomorrow.  I'll keep you posted.

Wounded!

It's not a good sign to be recognized in the Emergency Room.

Yes, after last month's visit for Pneumonia, Keanut made a return tour this afternoon for a hurt arm.

He's been sick all week with a lovely fever and this afternoon, I noticed his right arm was all swollen

and he was favoring it heavily.

A call to the Pediatrician's Office hot line... sent us to the emergency room to have it checked out.

Several hours and several X-rays later, the doc sent us home with Kean in a splint/cast and an appointment early next week with an Orthopedic Pediatrician for more tests.

They don't think it is related to the virus-- rather, that he hurt his elbow either falling or getting pulled up to a standing position by someone in the family.

The doc felt some "grinding" when moving his elbow (let's just say Kean didn't like that much)... and thinks

there is a hairline fracture so small it isn't showing up in the X-Rays (not so uncommon) or that he has damaged his tendons or tissue. 

Mr. Trooper has to "keep off it"... keep it dry and keep it elevated.

In other words, Mom has her work cut out for her.

Pin Up

We took Mr. Handsome for a photo shoot the other day.

It lasted a whopping 12 minutes... but I think the very patient photographer did get a few decent shots.

If so, Kean will be in the 2013 first ever Treasure Valley Down syndrome Calendar.

I'm certain if you ask nicely, he will oblige you with an autograph!