FRIDAY THE 28TH-----

MARKY IS BACK UP THE HILL SPENDING THE DAY AT PCMC

He's getting his "Remicade" infusion. Which is the stuff he gets every
8 weeks now that helps suppress the....."whateveritishehas" stuff !

They put it in through an IV and then he lays there and listens to his dad's corny jokes for 4 hours or so !

I, on the other hand, am at work. Enduring the torture of a mother not being there for her child as he lays at the mercy of the hands of the nurses and doc's and other "powers that be".

The solace is .......that James is (mostly) capable of handling it, and ...
...... i cant think of any other comforting reasons to be comforted right now. !

Love to you all, netti

Wednesday the 26th.

Yesterday I attended Marky's "end of the year program", ....

you know, the one that all the cute little 2nd graders take turns
saying or singing 4 to 5 word lines and all the parents come and
beam brightly as they are certain THEIR child is THE SMARTEST
and most talented one in the whole school !

Well, as I sat there with "Uncle Ken", i wasnt quite beaming....I
was sobbing uncontrollably at the sight of MY SON not only speaking
his 5 words on cue......but that he was ACTUALLY THERE !

Each little event that i used to lightly regard as routine, is now a
monumental accomplishment and miracle, in my eyes.

Im reading a fun book called "Surviving Your Blessings" by Lynn Jaynes.

The title caught my eye.

I know you guys feel the same , in your own ways......"I'm tired
of .....surviving all these Blessings !"

The author offers a quote that i've heard before, just not lately....

"come unto me, all ye that labour and are heavey laden,
and I will give you rest. Take my yoke upon you, and
learn of me; for I am meek and lowly in heart; and ye
shall find rest unto your souls."

Those words washed over me and cooled my tired, exhausted soul.

I am SO grateful that we were out of milk !........so I could walk into
Wal-Mart, of all places, ....and see this book on display !

I was also reminded of the words to my most loved song.....
"Consider the Lilies" .........

I became all too familiar with this song with the birth of our "Angel"
Sam. I cried and cried at the news of the test results confirming "Down's
Syndrome".

I did NOT want to watch a child suffer. I considered myself too "tender
hearted" to bear this "blessing".

I think of Sam sometimes as a "meat tenderizer".....you know, those metal mallots with the scored surface.

You think you've got this beautiful, thick, red juicy piece of meat that will be just great.....then the recipe tells you to use a meat tenderizer and "Whack" it until it is thin and
flat and pulverized....

Then you coat it with some spiced up bread crumbs after dragging it through some kind of egg batter first.

All the sudden, you take that first bite after cooking it and realize....
"Wow, that recipe was right !" That meat tenderizer thingy is awesome! ...
AND, the spicy breadcrumbs enhanced the flavor....AND the dragging thru the egg batter sounded "over the top"....but really was a GREAT idea...it just wasnt MY idea ! "

"It looks a little intimidating to use, and youre not quite sure how its all going to turn out...." Then.... "oh man, I'm sure glad I got that Meat Tenderizer outa my drawer that I never, ever thought i'd need to use !

That's my Sammy. That's how I feel about ALL of these "blessings"..

"Consider the sweet, tender children
Who must suffer on this earth...."

"The pains of all of them he carried
From the day of His birth."

"He clothes the lilies of the field,
He feeds the lambs in His fold,

"And He will heal those who trust him,
and make their hearts as gold."

Sunday Morning the 23rd of May---

Marky is feeling "crappy" again.

James gave him his Methatrexate shot Friday night.--He gets it in the muscle
of his thigh ! Youchey

By Saturday afternoon, he started to wilt.

I try to ask him what his symptoms are, but he cant really describe it.

Just "crapppy".

He stayed home from school on tuesday, because he had a bad sore throat,
called us to come get him thursday , mid-day, cause he felt crappy, but
made it through Friday's school day.

Dont know what to make of it all.

Just roll with the flow, i guess.

Maybe he starts to feel a little "yucky" and memories of PCMC flood into
his delicate little brain, and he freaks?

He doesnt say so, and doesnt seem jittery about anything or anxious, but
maybe HE has some anxiety about the past few months, like I do ?

I deal with mine by , oh....... indulgences of all kinds, ie. chocolate, dietcoke, anything .....

Maybe he deals with his anxiety with "crappy"-ness. ? ?

What do you guys think? Im open for suggestions and wisdom from
my "Marky Buddy's" ?????
.
Netti

MADE IT TO MOAB.......



AND BACK !



No calamity or illness to report ! Just NON-STOP FUN !



Marky and his brothers had a blast.

The weather was great and the scenery was spectacular !

Sam loved all the red dirt. His weekend-long occupation was to fill up
his shoes with the smooth, wonderful feeling, "sandstoney" dirt and marvel
at his accomplishment.....over and over !

One of the days, Marky and Scotty and myself took a hike up to view the "Delicate Arch". The hike was quite taxing on little Marky, but he was
determined to get to the viewpoint.

Scotty, of course would hike ahead and at one point jumped out to scare Marky and pretend to throw him over the edge.

Mark reacted with hands on his hips in a matter-of-fact lecturing posture stating............"Scotty, I've already lived through ONE life-threatening experience, ---- I don't need another one ! Geez ! "

While the boys were marveling at all the scenery, I was marveling that "The
Jeanes People" were actually on a vacation together ! That Mark Jeanes was
hiking on a trail ! And not traveling "up the mountain" to PCMC, and "wheeling" down a hallway for surgery or more tests !

I think I'd like to label this trip in the books as......

"Delicate Arch meets......Delicate Mark "

............AND.......

"Desert sand meets........Draper Sam "

..........AND..........

"Slick Rock meets.........Slick Scott !

A Blog Post from Scotty: My family safely made it to Moab, with out any injuries........but since we're in moab, i think there are injuries yet to come! but, scars are like tattoos but with better stories ha ha !!

Today after we got settled in, we all went to arches national park, it was awesome! there were some unbelievable arches and rock formations! we were about to go to delicate arch but we decided not to because it would be too hard for sam and mark. but maybe later.........

there is so much to see down here in the wild west. kokapelli art, red rock, sandstone, red sand, lizards, you name it, moab has it!

FRIDAY AM !

We are headed to MOAB today......Marky feels much better, so we will give it our best
effort !

Who woulda thought 4 months ago that MARKY JEANES WOULD EVER GO CAMPING AGAIN ! ! !

See what happens when "BUDDY'S' come together for good !

Thank you ALL for helping us get this far !

Love you guys ! wish us luck !

Netti

MARKY'S THROWING UP !

FIRST TIME SINCE .....WELL, ITS BEEN AWHILE, LIKE 2 MONTHS !

OF COURSE THE FLOOD OF MEMORIES OF PCMC ARE WHOOSHING
UP TO THE FRONT OF WHATS LEFT OF MY BRAIN!

WE GAVE HIM HIS METHATREXATE SHOT LAST NIGHT...

HOPEFULLY THATS ALL IT IS, JUST CRAPPY REACTION TO THAT !

.........SICK KIDS............

THATS WHAT HAPPENS WHEN YOU TRY TO PLAN A TRIP !

......SHOULDA KNOWN BETTER !

TUESDAY EVENING---

I just got home from work....and greeted Marky and asked him about his day---

The 2nd graders went on a field trip to Kenecott Copper mine/pit . Which is
out on the west side of the valley at the foothills of the Oquirrh mountains, for you outa towners.

Its the largest/deepest copper mine in the world.

So, I asked Marky....."How was the copper pit?" .......

His reply.............." It was DEEP !" ..............

Again, what a ridiculous question ! I guess i deserved the "look" of amazement
at what a dumb question to ask, that i got from Marky, now that i think of it !


Our kids really are smarter than us !

TUESDAY MORNING !

Marky made is through almost the whole day of school yesterday !

At about 2:oo, the call came from the school to come pick him up due
to a raging sore throat ! Maybe its allergies ?

Who knows?

Maybe he just missed us?

So.......BRAVELY... we are planning an outing to Moab this weekend.
The KOA people are offering a free nights stay in their Moab campground.

We'll see if we can.......... GET THERE ,....... for one.....and STAY THERE....... for another !

Results to follow ..... !

MARKYS IN THE NEWSPAPER, AGAIN ! ! !

The Deseret News section B, And the Salt Lake Tribune .

The articles are about the "Bike's 4 Kids Utah" rally yesterday
at Intermountain Medical Center ( which is where Marky went to
get his P.E.T. scan, by the way.)

In the Tribune article Marky was quoted after the reporter asked him,
"what are you going to do when you get your new bike ? !?!?! " .........

Marky very practically replied........ "I'm goin to ride it !" ......like, what a
ridiculous question !

I reminded me of the time we were in the hospital and Marky could finally eat again.

The nurse came in first thing in the morning and asked Mark, "what do you want to eat?"...
.....

Marky just looked up at him and said......."BREAKFAST, DUH ! ! "

I envy the simplicity and uncomplicated world of a young child !

Scott gave the most awesome Mother's day talk in church today ! In front of all those people !
He was a natural up there, speaking just like a great leader. I was beaming with pride.

Atta boy Scotty !

His Grandma and Grandpa Cole and his Dad Mike surprised us all and came to see him
speak ! That was fun, and we appreciated their effort especially since they've had some
physical trials of their own lately.

As I stood there watching Marky at the Bike thing yesterday, I was yet again amazed that he was even there to RIDE a bike after what he'd been through just months ago ! The miracles
we all were fortunate enough to witness with Marky are gifts some people never have opportunity to receive. And I am grateful to have been a small part of the great effort to
carry Mark through his trial, along with all of you.

So, HAPPY MOTHERS DAY EVERYBODY ! And.......go check the paper !
Love, netti........

Thursday !

We ALMOST, i repeat, ALMOST made it thru a week without a
"man down"....

Until today......

Marky woke up with a screaming sore-throat and both ears killing him !

He stayed home with James, while I went to work.

James took him to the Doc to survey the "magical mystery boy" at 11 am.

No new strep this time, thankfully...he is still on his last dose of antibiotics from last weeks strep throat !

Who knows what it is....he got his Methatrexate shot on Tuesday night.
Maybe it's side effects related to that?

Poor guy just gets percolating into a rhythm of school and activity and...boom he's back down.

That is why we take each day as a gift, dont we ?

He checked out a library book yesterday from school that had a bunch of
"ARMY" jeeps and Humvee's in it......He is WISHING for that MAKE A WISH like you wouldnt believe...

So cute to see his anticipation.

James is anticipating too ! at how much LESS lawn he'll have to mow
once the fine yard decor is in place !

Happy Thursday

Tuesday May the Fourth !

There is an Angel who looks upon us now from Heaven , who's Birthday is today.

Her name is Jessie.

She loved her Birthdays. She liked to celebrate with a Star Wars theme , and
Love to say...

....."MAY THE FOURTH BE WITH YOU !

Not long ago, Her family and friends watched helplessly as she suffered through the last few months of her short life on this earth.

I believe that Jessie was among the realms of "comforter's" that attended to
our dear Marky as he lay suffering, as she had.

Jessie's angel mother is Marky's 2nd grade teacher, who visited him often in the
hospital and continues to watch over him as he strives to keep up with his class.

She came to the house 2wice a week to "home school" him AFTER she had spent all day with his other classmates, tired as she must have been.

Her dear family understands mercy and kindness and teaches us all through their quiet service to others.

So today, on Jessie's Birthday....Im sure she is having a huge party in the "STARS" and she is telling all of her "buddys"...

.."....MAY THE FOURTH BE WITH YOU" !

Hi to all of Marky'sBuddy's !

Its Saturday ....and we LIVED !

Mark's doing great and back on top of the world, as is Sammy ! Scott, as
always is the Rock and remains unscathed from the latest infirmities !

James spent the entire week taking care of the homefront while I worked to
keep the "lights on" ! !

Thru out all of our trials , especially the financial ones, I've really scaled back
on everything, ie....selling the furniture this last summer, duct tape for ALL our
repair needs, food rationing and creative acquirement of food ( which may or may
not have included stealing food from my sisters freezer in her garage, I know the code , shh,)

I had to make tough decisions of what to sell and what to keep........ I wanted to ,
and STILL am willing to sell my Harp, I NEVER sold the beds or anything that kooky, and I DIDNT sell our camping trailer.

The trailer stayed as a back up plan for a living establishment should we lose the
house.

The reason I'm reflecting on these fond memories is that......it was all of YOU...
Markys Buddys that helped us keep the house and keep food coming and auctioned
off your time and services.

YOU did our laundry and cleaned our house.

YOU came to visit us at the hospital and relieve us so we could get rest.

YOU knelt down and prayed and fasted for a small boy to live.

YOU created a hospital room full of get well cards and parachutes, balloons, christmas trees with lights and ornaments made by sweet angels, and even a giant fireplace for Santa
to come through.

YOU declared Marky an honorary Marine and a fully decorated Green Beret, and
a UPS pilot, and a Super Hero with a customized cape , and a Utah Grizzly hockey
player, and a Jedi master, while he layed in bed with fate unknown.

YOU gave hope to a family with just a thread left.

YOU wove many of your threads together to create a force to be reckoned with of
strength and courage.

I continue to get up every morning and "take on " each day wrapped in these threads
of strength that each of you have given us. Thank YOU

Love Lynette