Reincarnated As A Mother

Tuesday, July 31, 2012

Day 21: Surgery Success

After waiting a mere five hours for his procedure-- it went smashingly well.
They threaded this through his arm and into one of the main veins above his heart.
After X-rays showed it was in the right position, they pulled out that troublesome central line.
So hopefully, this will last us until August 9th when he gets surgery for his permanent port.
 Keanut was more than grouchy when he woke up.
He ate lasagna, cottage cheese and some waffles...
but his favorite by far was the nearly entire bag of white cheddar popcorn
my good friend Pam brought in for him.
Check out that sweet animal patterned arm protector he now gets to sport.
 Pam crawled up into the crib and cuddled with him to rock him to sleep.
I couldn't think of a kinder gift-- I danced, rocked and held Kean for hours
waiting for the docs to come get him today.  It was so nice to get a break this evening.
How lucky I am to have such good friends who love me and love him.
 One final note.... Byron sent this to me after picking the girls up from swimming at
Grandpa Bodily's.  The caption to the text read  "Life goes on around here".

Day 21: Not quite a light... but perhaps the reflection of a light

We just met doctor number four up here:  Dr. Meeker.  Cool guy.  Only a year older than me.  I find that kind of sick and wrong that these brilliant doctors are so close to my age.  They all need to be much, much older. Darn.  I guess that means I'm getting old.
But I digress.
Dr. Meeker has a reputation for getting kids out of here and at home.  He told me even thought it is risky (infection wise), he believes they flourish in their home environment as long as the parents are careful and competent.  Guess I meet those stringent qualifications because he is hopeful to get us out of here sometime Friday after Chemo.  Whoo Hoo.  Trying not to get excited or anything... but Whoo Hoo.
Kean's counts continue to creep up.  He's at 170 today. Once again, his "counts" are the soldier cells that kill germs-- if that helps clarify things.
In our home, we play a game with the girls to get them to tell us a little bit more about their days at school.  It is called "the Rose and the Thorn".  They have to tell me a rose - something good about their day and a thorn - something bad about their day.
So here's the rose:  my friend Angie S. came up and spent the night last night with Keanut so I could go home and be with the girls on their first night home from the Family Reunion.  It was great.  The little chicks talked non-stop and were bubbling over with details of their adventures.  I slept like a rock at home. I don't think I moved one bit from eyes shut on Monday night to eyes open on Tuesday morning.  The girls and I got up early and picked - get this- about ten gallons of blackberries.  My mom and Byron came and helped too.  The girls have decided to save half of their berry money for a Disneyland trip in 3 plus years when Kean is done with his Chemo and half will go for children's Cancer research.  They came up with that themselves.  So proud!
Okay and here's the thorn.  It is now after 5pm and Keanut hasn't had anything to eat since breakfast.  He is on another forced fast... something that is just too darn common in here.  He was supposed to go under between 1 and 2 pm to get his central line cleaned up and fixed (it is oozing again).  But now it seems like they have decided to do a PIC line instead since this one is giving them such heartaches.  Poor boy has been crying and biting his fingers for hours.  He doesn't want me to touch him-- so I'm writing this and trying to will the doctors and nurses to get in here and get him.  The super sad news is they came and got us an hour ago.  Started setting us up in the surgery room, then had a kiddo a few doors down stop breathing.  So we were escorted back to our room to wait.  Personally, I think they got tired of hearing Kean cry.
So here we sit:  waiting, waiting, waiting.

Monday, July 30, 2012

Day 20: School Daze

So far, so good today.  Nothing dramatic.  We got Kean's numbers and they have finally started to creep up.  He's at 130.  Just to put it in perspective, a normal, healthy person has counts between 1000 and 9000.  So we have a wee bit of a road to hoe.
We had Dr. Chang come see us today.  She was Kean's doctor clear back when he was in NICU and they found a tumor on his Liver-- which by the way has completely cleared up.  Last week's Cat Scan showed nothing of the pesky little growth that once gave me near heart failure. 
Dr. Chang said Keanut is exactly where she expects him to be at this phase in his treatment (we are 3 weeks in with 3 years and 5 weeks to go-- but who's counting?).
Here's what else we talked about:  Kean turns 3 on August 10th and was supposed to start a special pre-school on August 9th.  Dr. Chang told me to let the school know he will not be there at least for this first year.  Perhaps the Fall of 2013 we can hope for.  Crazy, eh?
The hospital has a schoolroom and teacher here in this children's Cancer wing.  She just came and met with me and we started the paperwork and ball rolling to have her work with him when he is here and have him home schooled when he is, yes, you guessed it, at home.
My friend Marcee just told me to take deep breaths.  One thing at a time.

Sunday, July 29, 2012

Day 19: Holding Steady

We were blessed today to have a pretty boring Sunday up here.
Kean's counts are the same-- still at 90, so still severely Neutropenic.
But he's in relatively good spirits.
Byron came and spent the day with Peanut to give me some time off.
I went home showered (big deal to me), went to church, did laundry and payed bills.
Exciting stuff-- I know.
I picked up my dad and we had dinner up here with the boys.
As for the girls, they come home tomorrow evening.
Poor Reesey got stung by a bee and had to call to tell me about it.
She also woke up one night with a nightmare.
She dreamed that when they got home from the reunion, that Mom and Kean were still
in the hospital and that she had to go to different houses every day.
Yikes. Not quite sure how to deal with that one.
Guess we'll take it a day at a time.
Holland and Greer sent me this picture today to tell me what a fun time they are having.
 I think we'll not tell them the "pretty pink flower" they are standing behind
is a thistle-- a noxious weed. 

Saturday, July 28, 2012


Just earlier today, I posted about how nice, dull and boring it was in here today.  And don't worry, things stayed calm in here.  Let me repeat that:  in here.  But out there... a bit crazy.  I started getting calls late this afternoon from neighbors looking for Byron.  A brush fire started about a mile from our home and was growing bigger and heading in the direction of our place-- again!
It was almost exactly two years ago, that we were evacuated, much of our land burned up and our two neighbors lost their home in a fire through the foothills of Eagle.  Here's a link to my post back then with pictures of how close it came.
We dodged the bullet back then and lucked out again today.  Byron called about three hours later to tell me the fire was well under control and didn't make it very close to our home.  Still some nervous moments for everyone.

Day 18: A Wish Granted

Ah, things are good today.  It is exactly what we had hoped for-- dullness and boredom.
We are trapped in the room.  Unfortunately, Kean's counts have dipped again. 
Now he is only at 90 and has to be somewhere around
500 for them to even consider letting us go home.
But... and this is a big but... there is no drama today.  Other than a little pain from yesterday's Chemo
and procedure... all is well.
I took this video last night while waiting for them to put Kean under and re-do his Central line.
It's not the most exciting, but you can see that the steroids are starting to present Kean with a round, little moon face.
More to kiss, eh?
By the way, his procedure last night went perfectly.
The doctors had some emergency with an infant so didn't come get him until after 8:30.
Kean was so hungry and fussy by then and I was quite spent... that when Byron and my dad walked through
the door and surprised us-- I could have cried.  Perfect timing.
Kean was back in his room by 9:45, had a late, late supper and then went to bed and slept pretty good until meds and blood work at 6 this morn. 
Let's hope tomorrow's counts will start the climb upward so we can get out of here.

Friday, July 27, 2012

Day 17: Another Rock and Roll Day

Forget Rock and Roll... I want Lawrence Welk:  what I consider a nice, somewhat dull day.
It has to come at some point-- but clearly not today.
Things started out great.  My friend Angie (who has an 11 year old son with Down syndrome)
came up last night at 9:30p.m. and sent me home for a good night's sleep in my own bed.
Can I tell you how quiet it was?  It was heaven -- other than the fact I woke up twice believing I was hearing
alarm bells going off.  I guess you can take the girl out of the hospital but not the hospital
out of the girl.
Kean had a great night and was happy when I got there this morning. Unfortunately, that
was short lived. The site where his central line IV goes in was all bloody.
The doctors suspect he has the beginnings of an infection... so guess what? He is
now on another antibiotic.
Plus we got to traipse down to X-ray not once, but twice, only to find out that one of his two lines was leaking.
That is a huge deal for a kid under Chemo because the Chemo he was scheduled to get today (got it later) will kill
tissue if it leaks out of the vein.
After many doctor and specialist conults, they decided to put him under this evening and
re-work the existing Central IV lines. He is too severely Neutropenic (low counts and susceptible to infections)
to get a PIC line or permanent Port. And he has a history of his regular IV's (in arms and legs) collapsing after a day or two. So here we go again.
Elly was up here most of the afternoon and with her background as a Nurse, proved invaluable to his other
nurse when it came time to change his dressings and IV tubings time after time.
Elly snapped these pictures of  Keanut waiting and waiting for the doctors to make their decisions.

In case you are keeping track of his counts, he was actually up yesterday to 210
but unfortunately dropped down to 150 today.
He got another round of Vin Christine (funny name for Chemo) so we don't know
what to expect tomorrow.  Supposedly, that drug doesn't hurt their counts as much as others-- but
it does come with some really fun side effects:  hair loss, the runs, vomiting, jaw and joint pain.
We've seen everything but the hair loss with past doses.  But we are in battle mode and ready for anything.
Thanks for the continued prayers and a huge thank you to Rachel, Sheryl and Shannon for cleaning our house in the hopes
that Kean will someday, perhaps in this lifetime make it home.

Thursday, July 26, 2012

Day 16: Never A Dull Moment

Just wondering what it would be like to have a boring day in here.
It started last night with the power going out just after I went to bed.
Of course, they have generators for all of his monitors but his room was eerily quiet without the "wind tunnel" of the
filtration system constantly running.
When the nurse came in at 5 a.m for his daily blood draw, she couldn't get blood out of either of his IV's.
Neither could the Charge Nurse.
So they waited a few hours and tried again.
Dr. Hansen ordered some type of stroke medication that is supposed to break up any clotting-- but that took several hours
to get, administer and then wait to work.
Meanwhile, something broke down in our room (they think from the power outage)
and the heater started running full blast.
We called it the Tiki Room and kept waiting for someone to deliver Pina Coladas... but
instead they moved us into a very vacant room and had us wait while the repair crew got
things back and running.
Here's Kean being very patient.
The nurse finally got his blood to draw-- but a half hour later we got the call that
the sample had clotted, so we had to go through it again.
We're waiting now for his counts to come in.
In the midst of all this craziness, we did get a surprise visit from Kendra, the 13 year old who was up here until last week.
What a highlight.
Oh, and Kean is definitely in his "Power Eating" phase.
I think he is eating his weight in food.
Those steroids must be doing their thing.

Wednesday, July 25, 2012

Day 15: Spoiled With Love

We are still giddy from our good news earlier today.  But I had to share a few things that have made us
feel so very loved today.
My dearest friend Elly Moomey came up again and stayed with Kean for the afternoon
so I could go home for a nap and shower.
I swear, I need to add her name (along with my mom's) for submissions to the Vatican for Sainthood.
Elly loves on Kean, brings me healthy dinners, fruit and books to read and keeps me sane.
I could not get through this without her.
 When I got home today, I found my favorite Costa Vida (fresh Mex) waiting for me from my friend Pam.
And a box with the quilt in the picture below.
My childhood friend, April and her husband Chris sent Keanut the blanket.
If you are a regular reader, you'll remember April-- she and Chris took Greer out on the town
in Vegas a month ago.  And April is the one who grew up just one house away from me.
Our next door neighbor, "Sunny" used to get so mad at us girls when we'd sneak through
his back yard while playing "Charlie's Angels".  We later found out he was a hit man for the mafia.
No joke.  I suppose we are lucky to be alive.
Anyway, at April's church there was a lady who had Cancer (she has since passed).
She started a group that makes quilts for Cancer patients.  The quilt they made for Kean has little prayers or sayings
on several of the squares.  The card that came with it states the group prayed for Kean over every square they made and they will continue to pray for him at each of their quilting sessions.
They call their blankets:  Hope Quilts.
I think I'll just think of it as a quilt full of love.

Day 15: Yippe Kai Yay!

Dr. Hansen was just in here.  He's one of Kean's four Oncologists.
He finally got the Bone Marrow report back from the samples taken last Friday.
And finally, we have some great news!
Kean's sample came back with less that 5 percent "blasts"-- which probably doesn't mean
much to you but here's what we take away from the test:  Kean is in the
category of "early responders"-- meaning his body is responding to the Chemo and it is working.
Therefore, he falls into the category of having a better chance of beating this monster.
And if that's not enough to celebrate over, because he is an early responder, he gets to basically
skip out on his scheduled next Bone Marrow test on Friday.
Now let me catch you up to speed on a few other things.
His counts are down again today-- from 160 yesterday to 120.  So he's still extremely susceptible to infection.
We're hoping he'll start the turn around one of these days.
It's just a matter of waiting for his body to kick into gear and start making healthy cells that fight infection.
The Leukemia is like Napalm-- squeezing out all the good cells. 
He gets another dose of Chemo on Friday.  So perhaps a few more days of this...
Dr. Sandstrom, his Pediatrician stopped by the other night and hung out with me for over an hour.
Then, this morning, Dr. Showalter, the Pediatric Orthopedic Surgeon that we first saw at the beginning of this mess
popped in.  It amazes me, how busy these doctors must be and yet they show up regularly to check on Keanut and give me encouragement.  (Maybe they are really just evaluating me to see when they need to call in the white coats-- ha, ha).
We had another rough night last night.  Kean was up for a good hour and a half with pain.
The Tylenol didn't cut it and it took a while for the Morphine to work its magic.
We did, however, have Kean's favorite nurse-- Steve.
The two seem to have a sweet connection.
Steve's the only one to get high fives, knuckles and consistent smiles.
The bad news is Steve is off until Sunday... and I'm kinda hoping we won't be around to see him for a while.
Nothing personal, of course.

Tuesday, July 24, 2012

Day 14: Two Weeks and Somehow We've Survived

It  is amazing how we can have one of our best night's sleep in here and then the next night (last night) have one of our worst.  Kean kept kinking his IV lines and that stupid alarm went off at least 30 times.
On the few occasions I've been able to get in a nap, I've dreamt about that beeping alarm.
I swear I'm half ready for the nut house.
One other crazy thing, at about 3a.m., it smelled like a skunk had sprayed in our hospital room.
No joke.
Our nurse said it happens once in a while.  We are in a special unit where the air in his room is screened-- it's called
a positive air flow room.  Clearly, they don't screen out the stink.
Okay, down to business.  Kean's counts were even lower today.  From 200 to 120.
So now we have to keep the door closed to our room and be hyper vigilant about germs.  The doc came in with an entourage-- five of them in all,
and Keanut freaked out.  And I mean, freaked out.  Maybe he thought he was going under again or having another procedure.  Who knows.
His power eating is back at full force.  Perhaps he'll gain back the weight he lost over the past few days.
One of the highlights in this place is Music Therapy.
He LOVED today's session and listen closely as he sings along.
Finally, to keep us from going insane, they shut down the playroom and let Kean come for 20 minutes.
Today we made ice cream in a bag.
 I think he liked the process more than the eating.
Two bites was enough.

Monday, July 23, 2012

Day 13: Gorge-fest

I'm guessing the title gave it away.
Yup, the doc gave the green light late this morning for soft solids.
I ordered the boy scrambled eggs and a biscuit with gravy.
Let's just say he macked, he munched, he gobbled.
He almost ate all of it.
And when I stopped to have him take a rest, he grabbed a handful of eggs.
He had cried most of the morning and wow, what a difference food makes.
That's the good news.
The bad news is his counts are way, way down.
He is now considered "neutropenic"... which means his ability to fight off infections is nil.
His doctor has said he will be here at least another week (sigh) and his visitors are now extremely limited.
The fun continues.

Sunday, July 22, 2012

Day 12: A Smorgasboard of Liquids

Cue the band... it is time to celebrate.
Late this afternoon, the doctor gave Kean the go -ahead to go on clear liquids.
And holy cow, what a difference a bit of nourishment makes.
Byron earned "Father of the Year" marks today.  He spent the day with the boy
while I spent the day with the girls.  They leave tomorrow with my mom for a week long family reunion.
Here's a little video Byron shot of Kean having his first real food:  Jello.
Kean's beloved therapist, Maureen (Momma Gump) brought lunch in for Byron to sneak and
eat while Keanut napped.
You can tell he's feeling better because he did what he always does... swiped her glasses.
 And for the first time in days, my baby let me hold him without wiggling, whining and crying.
Ladies and gentlemen, we have officially turned a corner and hopefully will move on to
soft foods tomorrow and a day, just perhaps, without Morphine.

My Ode To Drugs

I'd like to express my eternal gratitude to the inventors of Morphine and the Antibiotics Kean has been on.  Last night, his nurse told me his X-rays look good and hopefully the Doc will choose today to let him eat and drink.  He also had his best sleep in this place ever!  He only woke up one time-- and that's with the nurse coming in and taking his temp, blood pressure and vitals every few hours!
One final bit of great news, that same wonderful nurse told me he is doing amazingly well, better than most kids she see's with Down's getting Chemo.  So your prayers are working.  Thank you!

P.S.  The blackberries are coming on.  All you locals who want to buy mondo, scrumptious, organic (and inexpensive) berries from the girls-- email me for details and to get on their list.

Saturday, July 21, 2012

Sights and Sounds

I forgot I had taken this photo during Keanut's midnight date with the Cat Scan machine.
He was surprisingly mellow and cooperative.
Personally, I think he was just plum exhausted.
And just so you know, the staff in here is doing their best to keep him comfy and entertained.
Meet Stephanie, the Music Therapist.
Even though Keanut feels mis-er-a-ble, he perked up a bit for music time.
Sorry to cut it short but Dr. Camilo walked in.

Day Eleven: Hunger Pains

The torture chamber is still in business and I think it has about put my mother over the edge.
She and my 93 year old- wonder of the world- grandmother came up to "spell" me. 
By the time I got here this evening, my mom was in tears. 
It is oh-so-rough watching Kean in pain and not understanding why he can't have even a sip of water.
The only saving grace is the Morphine that takes some of the edge off a very edgy boy.

They brought in a play mat today-- so a bit of a change of scenery. 
And of course, we all took him for endless wagon rides.  That is one of the few sure things that he finds calming.
They X-rayed his belly and chest today.  We have not heard the results but the doc said he is hopeful we can start him on liquids tomorrow if all looks good.  He said better to have him suffer through a few days of hunger and let his bowels rest than have his gut irritated for a week or two.  The swelling is way down.  So I'm hopeful tomorrow the imposed starvation will come to an end.

Friday, July 20, 2012

Day Ten: Bits and Pieces of Sleep

As I sit down to write this, the little one is asleep, whimpering, but asleep. 
At last.
He has had one rough day.  As mentioned, he can't eat or drink anything but those darn Steroids make him feel like he's starving.  So poor Byron (love that guy) pulled him and his IV tower around in the wagon for 2 1/2 hours to try and keep his mind off of F.O.O.D.
He is on IV nutrition, just in case you were worried the docs were starving the boy-- but it does nothing to make his tummy feel full.
Some good news:  the antibiotics have kicked in.  The swelling to his belly is nearly gone.  And we think we are finally on top or ahead of the pain with the Morphine. 
Byron took over for the afternoon and evening.  I went home and completely crashed.  Between a nap and a shower, I feel less zombie-like and as a bonus, I smell like soap again (instead of vomit).  Hey, I'm not forcing you to read this blog.
We had no fireworks with his Bone Marrow procedure or Spinal Tap (unlike last week with the breathing difficulties and IV failure).  We should get his results back on Monday to tell us how much of the Leukemia cells have been blasted to hell -- where they belong.  And as if he's not getting enough medication with FOUR different antibiotics, he got two doses of Chemo today-- directly into the Spinal Tap.  I can't forget that we still have to fight the Cancer while now fighting the infection.  It is a lot. 
Three bright spots today.  One of the heads of our bank came by the hospital today with a card and stuffed monkey.  I can't imagine that happening in Phoenix or LA.  I love it here.
My amazing Visiting Teachers (two women assigned to visit me each month from church), Pepe and Teresa sterilized my house today... in the hopes that Kean will be coming home sooner, rather than later.  They worked their tails off.
Also, we got three birthday cards in the mail today for Greer!  My friend Stacey had her boys make birthday cards for Reese and well, it's nice to know I'm not the only sleep deprived mom.  It gave me such a laugh today when I opened the mailbox.  Thanks for making the mistake!

Day Ten: A Setback

I don't think I need to die to experience hell.  Been there, done that last night.
Kean was miserable.  In pain and exhausted. 
They couldn't do the Cat Scan until midnight so I was trying to keep him up and force him to drink
what they call "contrast".  I wasn't very successful.
About 1 a.m. the doc called with the results.  Looks like Keanut has a little Pneumonia
and a thickening in his bowel walls.
The thickening in the bowel is what has them ultra worried.  They are treating him as if he has
Teflitus (not sure on the spelling) but it is an infection of the bowel walls that can be fatal for these little guys in
this early phase of Leukemia.  So let me make sure you understand this-- he does NOT have Teflitus, but
he has early signs of it-- so they are hitting it really hard so we aren't to quote the doctor "kicking ourselves
24 hours from now".
We spent the rest of the night getting him through 4 different antibiotics, blood work and IV's.
When the nurses weren't checking on him every half hour, those &^%#@# alarms were going off.
Neither of us got any sleep.

This morning they cancelled his surgery for the port but went ahead and did the Bone Marrow draw and the Spinal Tap.
During the Spinal Tap he got two doses of Chemo.
On top of all of this, we have to keep killing the bad Leukemia cells.
So for now, he is on heavy doses of Morphine-- I guess the bowel inflammation is painful
and he is off all food, milk and water to let his gut rest.
So to add to his misery, he's getting IV nutrition but he thinks he is starving, thanks to the Steroids.
Byron just called and he is on his way up to relieve me.
I think I'll go home and scream at the top of my lungs in the shower!

Thursday, July 19, 2012

Day Nine: The Roller Coaster is Ramping Up

The cruelness in here continues.  I'm watching the clock waiting for the techs to come get us at midnight- instead of sleeping.  Kean's stomach has ballooned up again and is tight, tight, tight.
His doctor has ordered a Cat Scan to see if something is going on. 
Poor guy, they are going to inject him with some gunk, he's had to drink some more gunk - we haven't been too successful-- he just wants to sleep.  And I feel the same way.
 Tomorrow's a big day, he has a Bone Marrow extraction and Spinal Tap scheduled for 9:30 (say a little prayer right then please).  And then at 12:30 he is having a surgical procedure to get his port (the way they'll deliver Chemo and other meds for the next three years).
Meanwhile, we are trying to keep life as normal as possible for the Barkettes.
We celebrated Reesey's birthday tonight in the play room.  They closed it down for us.
 I've had several angels come to our rescue to pull this off:  my friend Rachel went shopping for Reese's gifts for me
and our neighbor and dear friend, Gina got the Tinker Bell cake for the girl.  She LOVED it! 
Grandpa picked up the butterfly to replace the candles we couldn't have in the hospital. And of course Grammy
bought pizza and fun decorations.
 Some hospital volunteers surprised all of us with "pillow pets" for each of the kids.
 And our brave little neighbor, Kendra and her family joined us.
Kendra, remember is in the room next door and was diagnosed just days before Christmas
with the same kind of Leukemia Kean has.
We invited them to have some cake and pizza and they spoiled Reese with several presents.
The girl got tons of cards, good wishes and unexpected presents.
I think she is scoring in the feel sorry for her since her brother is in the hospital department.
Don't forget to keep Keanut in your thoughts and prayers tomorrow morning and tomorrow afternoon.
After the Bone Marrow test, we should have a pretty darn good idea if the Chemo is working.
I have a good feeling.

Wednesday, July 18, 2012

Day Eight: Out there: Reese's Birthday. In here: Sigh...

Well Reese turned 6 today.  Another birthday that I spent in the hospital- away from her.
.  I can only hope the girl doesn't need major
counseling when this is all said and done.
My mom brought her by for a few minutes.  She went to the zoo today and decorated cupcakes
 with her sisters and Mrs. Batten, Holland's 5th grade teacher.
Then it was off to a swim party with some girls from my mom's church congregation.
They had a birthday banner, cake and ice cream.  So I think she had a good bee-day.
We will have small family party tomorrow night up here at the hospital.
Now to Keanut.
Since vomit isn't the most popular smell these days, he got another sponge bath
and a pretty uneven haircut.  One of the nursing assistants tried to hold him while I tried
to trim his hair.  Tried being the opportune word.
 I had to throw this picture in... we are calling the fuzzy Winnie the Pooh bear on the far left:  B.C.  -- Before Chemo.
The smooth bear in the middle is A.C.  --  After Chemo.
And then there is Sock Monkey... trying to prove to Kean that face masks are all the rage.
 Momma Gump (Kean's therapist) came up and all he wanted to do was cuddle with her.
We took him for one of about forty wagon rides around the Pediatric Cancer ward.
 The kid was kickin' back.
 We also ran into Sweet Kendra-- our next door neighbor in here.
The girls are planning on taking her a piece of birthday cake tomorrow.
That was a big deal for her to get down on her knees and then get back up.
She's making progress too!
Kean's counts are pretty good.  He's keeping the mask on better during our outings.
But he slept horribly last night, has been vomiting on and off all day and
his stomach is now quite tight and swollen, which means
he is one miserable cookie when his pain meds have worn off.
Ah, the lovely side effects of the drugs he is on.
On the very bright side... he has stolen the hearts of most of the folks up here.
He has fallen into the habit of blowing kisses to all we pass on our many laps around the nurses desks.

Day Eight: Tick Tock

We had quite the rough night.  The boy was clearly agitated.
So much for sleep... again.
He has started grinding his teeth when he is in pain or uncomfortable.
It drives me crazy but I keep telling myself that they are just his baby teeth and if he grinds them to dust,
he'll eventually get new ones.
We finally got his many meds to stay down this morning without  coming up minutes later.
That meant adding another... anti-nausea medication.  So more meds.  Sigh.
Momma Gump... aka, Maureen his Occupational Therapist is coming today to try and keep him on track.
Let's hope he feels good enough to focus.
I thought I'd share this sweet video from her last session on the 4th of July.
As an intermission from his working, she blows bubbles.
I can't, can't, can't believe we caught this on camera.

Tuesday, July 17, 2012

Day Seven: The Vomit Comet Has Arrived

I must be getting some help from up above because in spite of the fact I've had hardly any sleep in this torture chamber hospital, I'm not quite as bone tired as I should be.  Go figure.  Saint Dee (my mom) came up to stay with Kean and sent me home to do laundry, get a nap and a much needed shower.
Kean is about the same.  His blood numbers look good enough that he doesn't need another blood transfusion for now. However, his ANC or Absolute Neutrophil Count is down below the safe zone-- so from now on he's at high risk for infection.  The "powers that be" let my mom take Keanut down to the playroom for an appointment-- he had to be the only person in there (except my mom and the specialist) and they had to completely sterilize the room before his visit.  So our lives have moved into the next phase.  Germs will be enemy number one from now on.
When I got back from my little hiatus, he wasn't feeling too swell.  About ten minutes after my return he threw up, then repeated the vomiting two more times.  So much for clean clothes and smelling like soap!
He's asleep though and hopefully will feel better tomorrow.  Poor little guy.  With all the meds being squirted into his mouth or shot into his body via the IV's, I am amazed he has not grown a second head or at least broken out in hairy purple spots!  The nausea -- we've been expecting.  But it still sucks.

Monday, July 16, 2012

Day Six-- A Little Chemo and A Lot of Love

What an interesting journey we find ourselves on.
I am on information overload and figure by the time we get through this, we will all have Phd's in Oncology.
Kean's doc told us today we will be here at least through the end of the week.  We have a Spinal Tap and another
Bone Marrow extraction scheduled for Friday-- so we ain't going anywhere 'til that's done.
Kean is slowly getting better.  And he's now getting to the point he is ready to break out of his hospital jail.
I put him in his little wagon and we circled the nurses' pod oh, about ten or twenty times. 
Who's counting when you have nothing but time.
I think they got sick of us (or dizzy watching us) and checked with the doctor again to allow us to
go down to the children's playroom.  This time, they made Keanut wear a mask (lot's of fun trying to convince a toddler to keep it on).  Thankfully, I finally wore him out and won that battle. 
I think he looks pretty darn cute.  I told him all the young men are wearing Mickey Mouse masks this summer.
It seemed to help.
We had a few friends come by, including my Auntie Daleen and my cousins Kelli and her husband Brian.
And boy did they come bearing gifts!
 Here they are putting together the coolest toy for Kean-- one of many they brought to keep him entertained.
They are experts in this area-- their niece (my other cousin's daughter) got the same exact cancer when she was 3 (she is now almost 9 and is beautiful, smart and all around amazing).
Kelli and Brian brought up toys for Kean, the softest blanket you've ever seen, toys and crafts for the girls to keep busy when they visit and loads and loads of food.  It was so much, that Byron went out and told their children in the waiting area "thank you for sacrificing for Kean all the money your parents would have spent on you for Christmas".  I hear they were a bit mortified!
I also met my "neighbor" today-- a 13 year old girl who has the same cancer as Kean.  She found out 9 days before Christmas and had a severe and very rare reaction to one of the Chemo drugs (one she still has to take about ten more times-- scary, eh?).  She became completely paralyzed and lost her ability to speak for about a week. 
She has finally turned a corner and is able to speak and move-- albeit with difficulty.
I took the girls over to meet Kendra tonight and we will be taking over a piece of Reese's birthday cake to share on Thursday.  It was interesting.  I told the girls they could ask her a few questions, since she was an "expert" in what Kean is facing.  They asked all about her losing her hair.And they are ready to go get Kean's hair bleached- because she said all of her hair fell out quickly except for the strands she had highlighted.

Sunday, July 15, 2012

Day Five: Moving Forward

I'd like to offer up the best proof possible that Boy Wonder is making progress.
They let us take him to a playroom with sterile toys-- nirvana for a kid who has been cooped up in a crib.
He was in toy heaven until we got the call to head back to the room for treatment.  Be happy I didn't record the fit he threw-- gotta love what these drugs are doing to my boy.
We also had a slew of dear friends come visit... including our neighbors the Bodilys.
They brought the biggest get well card ever-- a long poster signed by all the little kids who go to our church.
One of 'em wrote:  "Kean, you are such a tropper".  Love that!
 Kean's sweet therapists-- Maureen, aka Momma Gump and his speech therapist Meagan brought Byron and I lunch
and of course lot of attention for Keanut.
My nieces came up to see our little "tropper".  Okay, quick, notice anything different about the bed in the picture above
versus the picture below?
Yup, new bedding, new clothes, new toys etc.  Kean had a messy diaper of epic proportions.  I'm not kidding-- a week's worth crammed into one!  I told my nieces that it was if someone had poured an entire bowl of cake batter into a too small diaper.  Unless you were there, you'd never believe how bad it was and all the places it was.
But here's the funny part, when I pushed the call button for his nurse, she actually clapped when she saw the mess.
We've been so worried about getting this little guy's pipes unclogged-- it was a banner day.
I can't believe I just wrote an entire paragraph about a poopy diaper.  But it has been a pretty big deal around here.
Okay, a few other notes.
Kean had his first four hour blood transfusion today.  He's definitely feeling better, the swelling has gone down quite a bit on his arm and leg and he put weight on them both this evening.
We had a sweet experience with a family we knew from years back.  Their now almost seven year old son is just finishing up his 3 years and 8 weeks fighting Leukemia.  We just so happened to run into them when we reported to MSTI and Kean's cancer doctor on Wednesday.  They came up this evening and brought a blanket their son, Sam had picked out for Kean.  They will be a great resource and source of strength as we start down this path.
Also, our old ward (two wards ago) fasted for our family and especially little Keanut today.  I continue to be in awe of the
outpouring of love and support all of you are sharing with us.
I am overwhelmed with feelings of love for all of you who have commented, called, visited, prayed and petitioned the Lord on our behalf.

Saturday, July 14, 2012

Day Four: Turning A Corner

Finally, we have some good news to report.
Kean had an awesome day... compared to what we've experienced the past week and a half.
He seems to have turned a corner in the pain department-- he's still hurting but not at the
excruciating level.  And we even saw glimpses of our happy boy.
His nurse helped me give him a sponge bath, wash his hair and comb out the clumps of matted hair.
I was tempted to just cut out the clumps since he'll be losing it in a few weeks-- but the knots came out easier than I thought-- so phew, he still has his Sampson locks for a while longer (I like to think it gives him strength).
 The bath was exhausting so after a power nap, he woke up and was actually smiling a bit
and even willing to play with some toys. 
 The other good news is he actually ate some food today.  Here's the interesting part;  the nurses had warned me
once the steroids kick in he would be hungry and most likely crave salty, crunchy food.  They must know their stuff, because sure enough, he wouldn't have anything to do with his favorites (yogurt and blueberries) but he macked on
the Sun chips and some french fries I ordered. 
I'm noticing that his neck is looking thicker and he's swelling up-- partly from the steroids and probably partly from all the IV's they are pumping into him.  He is peeing like a racehorse.  I swear I've changed more diapers in the past few days than I typically change in a month.  But we are still waiting for him to poop.  Sorry to be so crass.  But this is a big deal in
here.  We have him on Miralax, Benefiber and prune juice when I can trick him into taking a sip.  All the heavy drugs he's been on-- Morphine and Codeine cause the already chronically constipated boy to be even more stopped up.  And now the chemo he's taking is notorious for clogging the ol' pipes. 
One other big change, he was ornery tonight... oh boy was he.  The doc had warned me one of the biggest side
effects of the steroids is that his evil twin brother will appear for the next 28 days and let's just say we were introduced this evening.  But I will gladly take Mr. Road Rage over watching him in horrific pain.
A few other notes, we got the results back on his Spinal Tap and are you ready for some really great news?  The Leukemia has not reached his brain.  That is huge in my book and I feel a direct answer to prayers.  So thank you again for all of the prayers uttered on our behalf!
Also, one of our favorite friends, Ken Firmage (who used to be the Bishop of our church congregation) came up to Kean's room this evening with his wife.  We had so much fun laughing and talking with them for several hours.  He ended the evening by giving both Byron and I blessings of comfort.  I can't tell you what a special experience that was for both of us and I feel like I can now move forward with faith and handle what is to come.
Kean is a fighter and we are in good hands.  So let's go get this over with!

Breakfast of the Champions

I thought you'd enjoy seeing Kean's 9 a.m. meds.
He doesn't like taking anything but so far, he's been a real trooper and we've gotten it down the ol' trap.

 One of the nurses just informed me that these are for us.
Shah, Foad, and Ali and Joannah brought these last night
but they can't come in the room-- I think because of bacteria.
But aren't they lovely?

Day Four (Perhaps Some Light)

I don't want to jinx it... but maybe we're turning a corner in here.  Keanut went to bed around midnight after getting a dose of morphine.  His oxygen alarms went off about five times that first hour of sleep.  After that his nurse came in, adjusted things and voila'... we both actually got some sleep in here.  Make that some... I woke up but he barely stirred during all the vital checks throughout the night.  His oxygen dipped a few times but the sweet nurse came in before I could get up.  And here's the most important signal he's giving us that maybe the pain is decreasing:  he woke up without crying-- the way my sweet baby boy used to wake up before this ugly experience.  He is back asleep now.  His awake time only lasted about 5 minutes... but I'm hopeful and as a bonus, a bit more rested. (Exhale deep breath here)!

Friday, July 13, 2012

Day Three (Which Feels Like Day 90)

I think it's time to dig out his ol' name from when he was in my womb-- Spartacus-- 'cause he sure is fighting with everything he's got.
We had another rough night last night-- and probably will continue to slog through the dark hours until this chemo
kicks some major leukemia butt!
His arm and leg are so swollen and now his other leg is beginning to swell.  So far, I've kept the screaming
contained to my mind.  This hospital room has become a torture chamber of sorts-- just watching him in so
much pain is brutal.
My mom came up for several hours today.
I know he looks like he is smiling in this picture-- but he's actually grimacing in pain and grinding his teeth.
 Our friends the Borup's took the girls for the day, so my mom came and sent me home for a shower (I was pretty ripe) and a two hour hard core nap.
He got his first of countless spinal taps, his first few doses of Chemo
and a mind boggling amount of medication.
The boy only weighs 24 pounds and yet, for example, he has had 8 different medications in the past hour.
I try not to think of the toxic cocktail in his little body.
  Most of the time, he is folded over in half for a very fitful sleep.
I had a gazillion of the kindest emails today, several phone calls and visits from Momma Gump and Meagan, Kean's therapists, my favorite nurse, Liz, who took care of me during my staycation at St. Luke's and who delivered Spartacus,
my friends below:  Shaw (the greatest pharmacist in the world), Foad, and Al and Joannah Shoushtarian.  Joannah was Greer's 3rd grade teacher this past year.
And finally, Elly and Ron Moomey brought up the yummiest Salmon dinner.  After several days, I finally
have an appetite. Good timing.
Now if we can get Kean to eat something.  He wouldn't take a bite or drink any milk today... just water and his IV's.
I'm told the steroids should kick in in the next few days and it will be like having a group of teenage boys living in my kitchen-- the kid will want to eat and eat.
I'm off to bed.  We survived another day and are another day closer to killing enough cancer cells to get him out of this horrific pain.
Thank you again for the amazing prayers-- coming from all over the world and from folks I've never met.
Wow, there are so many good people in this world.
And even though we are in struggling with this trial, the Lord has blessed us with many tender mercies and many of them have come in the form of your sweet messages.

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.