Two things:

1) Sam had his IEP assessment at school this week to evaluate his progress.

His average scores were.....at or Less than 1% for all skills when compared to "typically developing same-age peers".

They recommended "supplemental testing at a future date when Sam
exhibits more cooperative, assessment-ready attitudes and achievement-
motivated behaviors" ...

They did say that " Sam is working on counting 1-10. He enjoys counting
1-7 but sometimes struggles with 4."

They did say that "Sam has a charming, socially engaging personality.
He does, however, have difficulty staying on task to an activity that he is
not interested in."

Sam was socially developed and acceptable enough to participate in: .....School assemblies only. Otherwise he is to be kept in his "special class".

That said.......... item #2 :

2) Sam and I had the Privilege of attending a "Special Needs Ym/Yw talent show last night!

These "earthly angels" had us captivated and amazed !

As I sat in the audience and watched them one by one perform in their own special way, I knew i was NOT worthy to be among them.

Yet they accepted me and loved me and smiled and hugged me.

I was allowed to attend their "assembly" !

I was in the " less than 1%" of that population. !

Would that we could all be as they are.....quick to love and accept.
Unconditional at any level. No boundaries, limits or expectations.

Less than 1% ... by whose standards !

Also, of note ....

The invitation to attend this "talent show of angels" was extended to me by Brock Dansie, who turned 18 yrs old yesterday !

He and I have known each other since approx his 18th WEEK of life !

I met him during an ultrasound on his Mom, Beth Dansie !

I was lucky enough to have viewed him many times before he was born. I knew he was special, even then !

I never saw him after he was born....until about 8 years later.!

I was shopping for a new home in a good neighborhood and was parked in front of what is now our home. An adorable little boy came quickly walking over to my sister and I, waving like crazy--greeting us like we were celebrities.

We recognized that this little guy was indeed a "special" boy....My sister, Lori said to me.." you better buy this house, ...that little boy's gonna need you . "

A few weeks later as we were moving our stuff in, Beth and Dave Dansie came rushing across the street to say....

"HEY ! You're Lynette ! You are the one who scanned our little boy, Brock and told us that you thought he was "unique" (because of his head shape and tons of amniotic fluid and other stuff seen) ! " The doctor's didnt think anything was "wrong" with him.....But you were right ! "

Then began...or continued, our friendship and journey with "Brock" !

Now he is 18 and has moved on to another neighborhood and left me staring at his empty house where he used to watch out his front window for me to come home so he could wave to me or call me on the phone and ask how my day went and how everyone in the family is feeling.

My sister was wrong, I needed " that little boy"...he didnt need me !

Miss you Brock, Love Lynette

Words from Cathy Wallace --- thank you Cathy for reminding us ----....and making me cry first thing in the morning ! L

“Peace I leave with you, my peace I give unto you: not as the world giveth, give I unto you. Let not your heart be troubled, neither let it be afraid.” John 14:27

It's easier said than done, yes? But, I do know that as we seek this peace the Lord will bless our lives. He has asked us to 'be of good cheer'.

Not 'be of good cheer when everyone is healthy' or 'be of good cheer when the bills are paid' or 'be of good cheer when eating cookie dough'.

Just plain old 'be of good cheer'. Keep smiling. Your heart will follow your face.

Love ya! Cathy
October 21, 2010 9:59 PM

My friend Claudia says.........

" If it weren't for Diet Coke, I would have NO
Personality at all ! "

I have nothing to add to that !

Wednesday the 20th....

Marky and I spent yesterday, my one day off this week, at the new Primary Childrens satellite facility in Riverton Utah, which is conveniently straight west from us, just about 40 blocks.

We turned in the now famous STOOL SAMPLE that he and Jonah collected (see previous blog entry).

Then Marky had to drink the nasty, chalky Barium crud. Then we waited for 3 hours while the stuff cycled through his stomach and small intestine.

The Radiologist took pictures every 45 min. or so to chart the progress.

When it finally got through and dumped into the LARGE intestine or colon, we were done.

The initial report was good. No evidence of obstruction or strictures !

Yahoo.

Of course, all these kinds of test were done initially last year when this disease process started, or manifest itself.

They were all normal then, too. It wasnt until the "exploratory" surgery that the tumor or sclerosing or fibrotic crud was found.

So a "normal" test is good.....but not re-assuring enough for me to sigh a relieving sigh of relief ! !

When I get like this, I have to remember the blessing that Elder Johnson gave Marky.....that he would live and resume his normal life.

Im holding on to that.

Thanks for all of your encouraging words and comments ! I cant wait to "log-on" and see what you guys are saying. It means more than you know and gives me charge to get through one more day !

Love you all dearly, nettie

Tonight i came home from work to find Marky and Jonah in the kitchen.

They were just hangin out snacking on stuff when Marky remembered...

"Oh yeah, here mom.." then he gets in the fridge to show me....

It was a STOOL SAMPLE !

Mark had been to the Dr. today. He sent them home with a stool sample collection kit.

Of course when the "time came", neither me nor James were home to help with the "collecting process".

So Jonah did what any best friend would do.....

HE SCOOPED UP THE SAMPLE FOR HIS COMRADE AND PUT IT IN THE COLLECTION JAR !

Jonah is 9 years old !

Jonah is a true soldier and warrior just as Marky is. Never leaves a friend behind. Always walks beside, never in front.

When Marky was in his throw up stage of the disease, Jonah would hold the "barf bucket" for Marky and gently encourage him.

Jonah used to carry Marky's TPN backpack (remember the liquid nutrition than ran thru his pic line to feed him) as they would walk around the house.

Who does that ! especially a 9 year old !

As expected, I broke down in tears as I realized just what these two had managed

to accomplish all by themselves.

What does the future hold?

Whatever it is, we are in good hands.

Lynette.....Markysmom, Jonahs grateful "othermom"

Tuesday the 12th---

Thanks for all the spirit-boosting comments from yesterday's "pity-party" everybody !

I loved logging on to blog today and seeing your replies !

I got home last night and Marky was still "floppy" and laying in bed. He has also started coughing ! Like he's getting a darn cold or somethingorother !

At eleven o'clock last night, the poor guy was still coughing his head off and then holding his stomach in pain. So we decided to give him a tiny bit of the magic codeine cough syrup that all of us Mom's are grateful for.

Of course, the codeine stuff relaxes the bowel, too, along with the cough...so that's a problem with a guy who is already teetering on crapstipation issues !

But he DID sleep after that. Today he is coughing again and still complaining of the belly pain.

Last night he told me I needed to take him back to the hospital cause it hurt so bad....... I just stood there, concealing my panic at the thought, and said....."just put the heating pad back on your belly and watch Ironman, for cryin outloud !" (Ironman is the DVD of the month at our house by the way)

So James is at home with the warrior again today.

Love to you guys, Lynette

MONDAY THE 11th ---

Marky is hanging in there... He made it through his "clean-out" and went back to school on Thursday and Friday ! TWO DAYS IN A ROW !

Saturday night the next wave of pains hit and he's been feeling crappy ever since. I dont know if its the "crapstipation" this time or not.
He shouldnt be clogged up with all the "maintenence" techniques we're doing. He gets two doses of Miralax a day. !!!

So James stayed home with him Sunday and Today to get him through whatever this round of pain is from !

Last night we had to give him his weekly chemo shot.

Usually he sails right through it with Scotty distracting him, making him laugh. Or Jonah by his side doing the same.

But last night he was especially anxious about it and cried with giant tears, begging James not to give him the shot !

Sam got worried and started crying cause his Marky was crying, Jonah got worried cause Sam AND Marky were crying....Rocky the dog just ran and hid....Scotty kept trying to manage the situation while James and me got it done.

James is usually the one to give the shot. He does a great job. Im too chicken to inflict that kind of pain on my own child...sounds dumb, I know, but I just cant do it !

Poor Marky is just sick and tired of it all, i'm sure...and I dont blame him.

So, today i'm at work.....eating all the cookie dough outa the freezer in our break-room (Shhhhh !) and injesting large quantities of Dietcoke to try to soothe my soul!

I'm not handling this "chronic" stuff well today...sorry Marky.

Tomorrow is another day....I hope !

Price tag for Marky's Chemo infusion's every 8 weeks:

$ 2,900.00 (includes blood chemistry)

Insurance pays...maybe 80%

Amount still unpaid to PCMC from last winter's stay:

$ 223,389.00 (just for hospital stay only,not all the Dr. fees, surgery fees, anesthiology fees)

Ins. and medicaid are arguing over who should pay and how much. In the meantime, they keep calling us asking, "how would you like to pay for that today ?"

Wonder why i sold my harp ?

Sold all the furniture last summer to help recover from Sam's follies !

Running outa stuff to sell ! The trailer is going next. Been keeping that in case we have to live in it someday !

Marky is doing better today.

Tuesday was spent up at PCMC with Dr. Pohl's team.

Seems that all the heavy pain meds from last week got his intestines all clogged up and nothing was moving through. The pain was from what I term....."crapstipation" !

So he endured a heavy duty "clean-out" day yesterday at home with the Colonel, "uncle Ken" Crocheron on duty.

Those army guys really do take care of their own !

James was at school, I was at work. So we appreciated the Colonel being on guard duty.

Marky reported in to me when I got home last night that he had "flushed" (if you know what i mean) THIRTEEN TIMES !

So off to school he went today feeling much "lighter" i'm sure !

Poor kid !

I was grateful for the diagnosis of "crapstipation" rather than a re-lapse, again ! ! !

CHILDREN SHOULD NOT HAVE TO SUFFER !

THE END

MARKY WOKE UP AT 4:30 am TODAY

WITH BAD BELLY PAIN.

HE IS RATING IT AT AN " 8 " ON A SCALE OF 1-10.

I've tried all his pain meds -- one at a time, okay !--and he is

still suffering.

we've been gluten-free diligently.

I put a call in to Dr. Pohl's camp for re-inforcements.

We'll see what happens.

I have a day off, which i had planned to sleep through--i've been "on-call" at LonePeak ER since Sat. --not many "call-backs" but i'm not good at sleeping when i anticipate the phone to ring anytime. I'm ridiculous like that !

So i will keep watch today over the little warrior, wringing my hands with worry....at what next !

Make-A-Wish Foundation® of Utah » Marky’s Army Jeep Wish

Make-A-Wish Foundation® of Utah » Marky’s Army Jeep Wish

HEY YOU GUYS !

MARKYS ON THE FRONT HOME PAGE OF THE MAKE-A WISH WEBSITE NEWSLETTER !

WWW.UTAH.WISH.ORG

CHECK IT OUT !

HERE'S SOMETHING COOL ABOUT PRIMARY CHILDRENS HOSP.--

When Marky was admitted last week, we were back up on the 3rd floor.

This is where we spent most of our "tour of Duty" last winter. He got to know alot of the staff.

So when we got settled in to his room, he wanted to go visit his "old friends" !

He really believes that he is a celebrity up there.

The nurses and Staff at PCMC treat these kids like they are celebrities !

I rolled him up and down the hallways to each nurses station as he looked for familiar faces.

These nurses and techs all waved and high 5'd him like a hero !

I was affected by each of them. They dropped what they were doing and acted like Marky was the only one they cared about at that moment. They crouched down to talked to him at HIS eye level. He was "king" to them.

Ive watched them do this to other kids too. What a group of Angels that minister to these children in need.

There is also a group up there called "the Pallative care team".

They are a team of advocates for the patient and family. There's a Chaplain, a social worker, a nurse and maybe someone else i cant think of right now.

They kind of rally around "long-term-er's" that are spending lots of time up there.

"Orly" is the first name of the social worker guy on that team.

He is like batman. He seems to be everywhere, on-call, waiting for any opportunity to rescue.

He has some magic power that he uses to cruise the listings of new "admits" . When he sees one of his "kids" on the list, he magically shows up with a smile and something funny to cheer up the afflicted!

He's a cool guy that has kind of an "unruly" look about him. Untamed hair thats longer than short. And he is usually wearing some kind of kid likeable t-shirt with spiderman or a super hero on the front ! He talks about the latest video games and the "level" that he's made it to on Mario.

He never stands over the bed either. He grabs a chair and scoots right over to Marky. Makes eye contact.

I'm going to try that. ...not standing over, but "scooting" over ! I think this is a life lesson.

RIDICULOUS THINGS ABOUT GLUTEN --

1. Its in everything thats tasty.

2. Its disguised as lots of different alias's in everything thats tasty.

3. Its produced from wheat ! And thats supposed to be GOOD for us !

4. Lack of gluten in bread is just plain dissappointing.

5. Lack of gluten in donuts is like eating a solid sugar coated rock.

6. GLUTEN MAY HAVE BEEN WHAT ALMOST TOOK MY MARKY FROM THIS WORLD !

Sunday with Marky--

He's doing better today ! He felt great on Friday- like his old self.
Yesterday, Sat, he felt so good that he went up to Park city with his
Buddy Jonah to hang out with their family.

2 hrs later came the call........Bad Gut Ache !

James buzzed up the canyon to retrieve him. They were eating at a place
called "Flippin Burgers" ! They even had gluten free hamburger buns !

Jonah's mom, Jen is always on the lookout for places that Marky can eat . She is a huge advocate for him.

I think he may have had some anxiety of being away from "the nest" which set off the pain....who knows.

We got him home and dosed up with pain meds and heating pad.

He's back up today feeling good....so far.