Sending out Happy New Year wishes to all of Marky's Bloggers---

He is laying in bed, the last few days, with Strep throat ! Started on Tuesday.

Went to Doc on Wed., got the "Gag" test and confirmed it. He's gotten Strep so many times this year. All the immunosupressent (cant spell that one) drugs leave him wide open for all that cruddy stuff.

On Monday night, though, Marky got to go to a holiday party with big bro Scotty!

The "other" half of Scotty's gene pool is the Cole family.

I couldnt have asked for a better family to be connected to. Grandma and Grandpa Cole treat all three of our boys as their own.

So this year for their holiday party, they invited Mark to come. They have all been actively praying and worrying over Marky this past year, and he felt good enough to make a "celebrity" appearance. Grandma Cole picked Marky and Scott up and brought em home too. They had a blast.

It was one of the "Cole/Fidler" sister-in-laws, Brianne, (sorry if i spelled that wrong, Bree) that organized the "OnLine" Auction for Marky last winter.

And recently, Grandma and Grandpa Cole surprised Marky with a beautiful hand made quilt they had worked hard on for months. They even brought a little sweet one for Sammy too.

Sammy immediately grabbed a flashlight and crawled under his blanket to hide while he looked at the cute little monkeys patterned in the fabric!

The arrival of the quilt was just in time for Marky's last stay in the hospital. We wrapped him up in it to haul him in and out of the battle-field. And it kept him secured while he layed in bed up there.

They are a dear family and we so appreciate their love and support.

Hope you all have a HEALTHY New Year ! We're gonna try !

Love to all, Lynette

MERRY CHRISTMAS TO ALL OF MARKY'S BUDDY'S

Marky is fast asleep....IN HIS OWN BED (not the hospital!)

He has "visions of sugar-plums dancing in his wee little head".

The plate of (GLUTEN FREE of course) brownies and milk are awaiting their Christmas eve guest.

The stockings are hung and ready for the customary orange to be stuffed into the toe !

All is right with the world, in Markys world !

Im reflecting on the dear children that will be up at PCMC tonight. Perhaps like Marky was last year...too sick to be home..worrying whether Santa will find them up there....Or too sick to even open their presents, like Marky was last year.

Scotty helped Marky open his gifts last year. He didnt have the strength to do it. He just layed, listless in his hospital bed.

The exploratory surgery had happened 2 days before Christmas, last year. James and I spent the night beside our dear boy. Sam was with Aunt Lori, or Uncle Ken.

I will never forget the spirit of Christmas felt that night in the hospital as the group of Resident Doctors that had been so attentive to Marky, came to his room and brought gifts for us.

They wore Santa hats and had made plates of treats to share with us while they were on duty caring for our boy. Most of them were away from their families for the holidays.

We became part of their family as we were brought together during those worst of times.

They showed us compassion and love beyond their "Titles" of Doctors.

I remember them tonight, with my own compassion and love, wherever they are.

Merry Christmas..

...especially to our Primary Children's Hospital Family.

My prayers are for all the dear children laying up there waiting for Miracles of their own.

That they are comforted and relieved of their pain and suffering.

That angels will not cease to attend them.

That promised tender mercy's hurry to their bedside.

Love Lynette

Christmas Eve Eve---

Afraid to say it outloud.....but looks like Santa will be visiting us at home this year !

Marky is feeling great, since his honorable discharge last week.

He's taking oodles of ex-lax every day, and that seems to be doing the
trick. We D/C'd the use of the Miralax.

No pain reported....unbelievable.....miracle!

Hope all of Markys Buddys have a miraculous Holiday season full of fun and good health.

We love you. Lynette

HAPPY BIRTHDAY!! To our family's "guardian", Ken Crocheron !

Ken quietly serves the Jeanes people daily with just about anything there is that needs to be taken care of.

He's a surrogate Uncle, a Harley Dude, a Green Beret, a HALO paratrooper Jump-Master, a gifted wood turner, A talented musician who sings like Pavorati, and plays Violin like..that one guy thats famous whose name I cant think of right now !, has a way with kids, and has the biggest heart of anyone i know.

We became friends with the Crocheron's several years back when their boy, Nate, was younger.

Nate used to come over and swipe Coke's outa our fridge and hang out w/ us !

They are like family to us now.

Vickie, the CEO of their family, tutors Marky a couple of days a week to keep him caught up with school stuff. She is an angel in so many ways to us. PLUS, she's a RED-HEAD ! Of course she's an angel !

So today, the 18th...Ken, the Colonel,.....

HAPPY BIRTHDAY ! And thanks for carrying us. You are loved and appreciated..

Marky's troop.

Friday--

Marky CAME HOME !

After all the tests and hand wringing and coins tosses, the little warrior was released.

The surgeon was not comfortable opening him up, without more convincing evidence. Thats good....convincing evidence is NOT good.

Marky was referred to an "integrative medicine" Doc who deals with chronic pain .

The colonoscopy that showed some weird stuff is now being deemed a mystery. None of the other tests supported what the colonoscopy showed.

As always.....a mystery !

But Marky is home and cheerful. He hasnt eaten any solid food for 3 days, just liquids. So today he's eating well, courtesy of aunt Lori.

We will be home for Christmas ! No need to transport Marky's portable chimney ( from last years stay) up to PCMC. Markys cousins crafted the beautiful, authentic-like chimney, complete with stockings, simulated wood fire and brick -like motif !

We will continue to enjoy it at home !

Dont believe the "sad" face. He's been playing "HALO", the x-box game for 2 hrs straight with our home teacher !

He's just tired from killing everything !

Wednesday with the "Champion"---

Waiting for the docs to decide who's going to do the surgery and when.

They want the same surgeon that opened him last year (Dec. 23) to be the guy that goes in again. He remembers Marky and the complex maze of fibrosis covering everything.....makes sense.

EXCEPT....this surgeon is either got his sched. full, or is off, or whatever the reason. So the ranking officers are doing what they do best...

wringing their hands and tossing coins !

The Barium Enema was excrutiating for Marky. We handled it by "leaving" the hospital and pretending we were on Ken Crocherons awesome boat ! We were in the boat cruising Bear Lake with the wind in our hair. I bawled my eyes out at his courage and discipline. I used up 8 million tissues while i stood at his side trying to comfort him. ....it was him who kept saying....."we're on the boat mom, we're on the boat ."

Then around 6pm they did an MRI (un-sedated!, for all you chickens who have to get zonked to go in "the tube"). Again he was a champion.

His IV blew and had to get a new one poked. He had to hold his breath for 30 seconds a ton of times for each sequence of images....WHILE he was trying not to throw up, AND was in immense pain !

Later last night our Bishop came . He ALWAYS shows at just the right time. He gave Marky a beautiful blessing .

In the blessing, he referred to Mark as a "Champion of Faith" that is here to teach us all.

The Lord does know us.......Especially this sweet child.

MARKY IS BACK "IN COUNTRY" AT PCMC ---

Doc's have admitted him. We are waiting to the guys to come get him for the Barium Enema any minute. Then, later today, they will do an MRI so the surgeons have every opportunity to know what they're going in to do.

The surgery will likely happen tomorrow.

He is being made "comfortable" with IV Morphine to finally get relief from his pain.

Im finally getting "relief", now that he's relieved from his pain !

Aunt Lori will take over as "Aunt Lori" always does. She will scoop up Sam and Scotty and throw em in the mix with her family.

Thanks for all your prayers and support. You ALL mean so much to us.

Will keep you updated.

Markysmom

Tuesday the 14th with Marky ---

Still waiting to get the Barium thing scheduled. Then the surgery can proceed.

Marky bravely went to a half day of school yesterday.

He didnt feel up to it, but he went anyway. I told him that i needed to go

talk to SANTA to make sure he knew just what to bring. And that I couldnt

do that with Marky staying home. !

While I was "talking with Santa", "he" decided to re-activate Markys cell phone. Marky loved being able to text and receive texts while he was in the hospital last time. So Santa gave Marky an early present. !

The Warburton family in our ward generously gave Marky the phone AND paid for service the WHOLE time Marky was in the hospital even thru the summer ! They are a dear family, and we appreciated that so much. Marky thought he was the bomb, with his own phone. !

We would sit for hours and play songs with the keyboard tones for each letter or number. Our favorite was "I hope they call me on a mission"..(or "Missionary stew" for you primary kids !) ! I would sit and type little tones and he would guess which song i was playing....fun !

Ill post his texting # for you guys when he goes "up to the mountain"( PCMC) for the surgery. He will love getting messages from you.

Two of my VERY FAVORITE (I have three !) BROTHERS' birthdays are this week.

My twin sis ,Lori, and I grew up with them adoring us. We were the babies. They were the "Big Brothers".

They still adore us. They rally around us every time rallying is needed. They live far away, but you'd never know it.

My Mom produced them all a year apart....three years in a row ! Then Lori and I came together ! People thought she had triplet boys and twin girls !

Mom's brave....still is !

Mom and Dad somehow figured out how to raise us in a home with love such that we ALL thought we were their favorite child. And we all thought we were each others' favorite sibling !

Still do !

But I KNOW I am the favorite ! .. Mom told me... and Dad told me..and Steve, Lee and Kenneth and Lori told me !

So, Happy Birthday to 2 of my favorite brothers ! I love you Bootie and Kenny !

Netti, ....your favorite sister !...shhhhh dont tell Lori !

Friday Dec 10th--

Latest update:

Markys GI Doc called today to say that the colonoscopy results indicate that something is pushing in or crowding around the colon on that right side.

We are now waiting for the Surgeon to call.

Before they operate, they want Marky to have a "Barium Enema" !
Its a diagnositic study that they fill up your colon with Barium, the chalky white crap, and make you hold it in while they take a bunch of xrays ! Its SOOOO painful to go through ! I used to do these procedures to patients when I was an xray tech, back in the day. Cant imagine making a little kid endure it.

But we will do it.

The surgeon says he wont do the surgery till Marky has it done. It will help him know more about what he's going in after.

They cant use the "3 hole punch" method (Laproscopy) because his "insides" are too matted down with the fibrosing crud. So they will likely go in the same scar that they carved last year this SAME TIME !

It will be up to the Surgeon, of course. It will be the same surgeon that operated on him initially last year with the exploratory stuff.

Dr. Pohl indicated that what will likely happen is that they will have to re-sect that portion of his colon that is getting choked by the fibrosis/ scarring stuff.

Now we wait for the procedures to get scheduled.

Pray for Marky please.

Lynette

Wednesday---Colonoscopy report--

Marky and I spent all day tuesday enduring the prescribed "Clean-out" protocols.

I did everything he did, so he wouldnt be the only guy gettin picked on...we both ate our green jello, drank tons of gatorade mixed with Miralax, took those little "Bomber" pills..all 4 of em ! We both lost 5 pounds each !

We were at the "Scope" place by 0630 am. On the slab at 0730.

Dr. Harnsberger came out to report that an area on the right side of his large intestine ( hepatic flexure) is being restricted from the "outside" by something which has yet to be determined.

The very smallest of cameras was used to try to get down that portion of the colon with no luck. Several biopsies were done. We'll wait on that.

That area of restricted bowel also has limited blood supply getting to it as well. The color was gray instead of pink.

Markys main Doc is away at a conference till next week. So we will await ideas of how to approach the issue till he returns.

So the phantom pain that was deemed "nerves/anxiety" really does have an etiology. ...the Sclerosing/fibrosing crap is rearing its ugly head again.

Of course it must occur at the same time as last year. Christmas !

Im trying not to have a "come-apart", "unraveling", "freak-out" whatever thing that moms do.

We'll take it on, whatever it is with Marky's Courage to carry us.

First Sunday in December 2010--

Six yrs ago tonite, there was a quick knock at our door, then a scuffle, and "they" were gone.

Left behind was a simple white box tied with a green bow.

Inside was a fist full of cash and about 8 gold Sacajawea dollar coins.

A typed note, anonymously announced that our "neighbors that loved us" had given what they could to help our family for Christmas that year.

James had, just the month before, broken his neck and scrambled his brain.

We were awaiting the birth of our Angel Sam ( was due in March but came NewYears Day !--Why wait!)

I was overwhelmed with James and what his future would be, along with the coming of a child with Downs Syndrome.

Back to the "box".

The Gold coins were gifted to us by a child that had them in his/her collection of treasures that were meaningful, im certain.

Im sure they were not quickly thought of as a gift to give the Jeanes Family, when the "collection tin" came around to their home.

I can imagine the process that went through this child's heart

(whoever he/she is). "Should I give them, or keep them....I really, really love these gold coins."

The impact of that little white box with the green bow left on our porch, still moves me to tears each year.

I kept the box...AND the gold treasured coins. The green ribbon too.

Its the first thing I get out and put under our tree each year when the decorating starts.

I think of the night our Savior was "given" to this world. He is a treasure that our "Father", im sure, had to really ponder before he "gifted" to us, just as the coins had been given to a family in need.

This year brings even more astounding memories of "gifts" given to the Jeanes family, with the entire season, last year, spent in the hospital with the Primary Children and the angels up there.

Merry Christmas and love, from the Jeanes People.

Wednesday:

After surveying the little warrior with xrays and the usual "coin toss" of what "it" could be, the experts decided to clean him out !

The "clean out" consisted of a Molasses and Milk concoction that was infused retro-grade into his colon via the "Southern" most approach !

For those of you who dont get my "Sensitive" description of the procedure:
An Enema !

The poor guy was so uncomfortable, crying and trembling, humiliated, etc.

He got through it, though, and was, in my view, 10 lbs lighter afterwards!

The "Head-scratcher's" ended up with the customary diagnosis that should just be named...."MarkJeanes" :
"WE DONT KNOW"

Either the impacted volume of crud in his colon is causing the pain, or the pain is causing his Colon to spasm and pile up with crud. ? ? ?

He is scheduled for a Colonoscopy next week to make sure the Endoscopy centers have their volume quotas met.

Have a better Wednesday. Love you guys, Markysmom

Mark Jeanes is at it again:

We are in the ER at Primary's trying to get some pain relief

for sweet Marky.

He says his "liver hurts real bad". Points to his right side.

The GREAT news is...the doc "on duty" today is one of the very

first Dr.s that we met a year ago when all this "adventuring" started !

Im calling it "adventuring", not just any old adventure!

AdventURE would describe an event that happEND.

AdventURING indicates, well you can guess the rest.!

I thought we had made a successful pass through Thanksgiving with no "events".

It was last year, the week after Thanksgiving that everything started to un-ravel. Or...wind-up ! Whatever the metaphor, here we are.

So, as scripted, the Dr.s are out at their computers looking up Markys history, scratching their heads. Googling every key word in his descriptive story of his mysterious disease, trying to figure where to place the next puzzle piece.

I will keep ya posted with updates.

Markysmom

Sunday Evening with Capt. Marky--

Laying here next to Marky now trying to help him through his "crappyness" after his chemo shot .

Sometimes he sails through it, sometimes..notsomuch.

Cute Dr. Annie came and gave him his shot tonite. She had just completed a long day at her hospital, saving lives, and came straight over here to see Mark.

Earlier today, I dragged Marky, not feeling good already, with me to church, along with his other bro.s.

He layed behind the piano while I sub'd for Primary.

Ive been surfing for ways to help Marky with his pain and "crappy" side-effects from the meds.

Even now as I write, he lays with both fists clenched, both feet with toes curled under in pain.

I try the distraction crap, and im convincing myself its working. And then i look closer at him and there's the clenched fists that he's hiding under the blankets !

Any ideas out there? I'm desperate.

Not too entertaining tonight. sorry.

L.

We got brave and asked a Dr. in our neighborhood if SHE would give Marky his Chemo shot a couple of weeks ago.

He's sposed to get one every Sunday at our house.

Marky's had quite a bit of anxiety over the "shot" lately, so we thought maybe someone else giving it might help.

So Dr. Anne P. , a Hospitalist, and awesome neighbor answered the challenge. She is an awesome shot giver, Marky never flinched.

The second week she came, she had a "Surprise" for Marky....

It was a big beautiful....FROZEN TURKEY !

She had won it running in a 5K or 10K or something and decided to "re-gift " it to Marky ! Whoda thought !

He carried that thing around for a couple of days, getting it out whenever anyone came over, proudly showing it off like a new baby !

He was so proud of his turkey that "The Doc" had given him.

A couple of days later, as I got it out of the wrapping to roast it, Marky was so excited ! .....he doted over that thing even as it cooked !

Dr. Annie's turkey idea was a hit ! Bet he'll never forget that !

Who knew !

THIS IS ON MY FRIDGE DOOR:

ARMY VALUES ---

Loyalty

Duty

Respect

Selfless-Service

Honor

Integrity

Personal Courage

SOLDIERS CREED/ WARRIOR ETHOS ---

I Will Always Place the Mission First

I Will Never Accept Defeat

I Will Never QUIT

I Will Never Leave a Fallen Comrade

I Am a WARRIOR And a Member of A TEAM

THE MOST IMPORTANT OF ALL OF THESE VALUES:

In my opinion:

PERSONAL COURAGE: Army definition is---

FACE FEAR, DANGER OR ADVERSITY (physical or Moral)

If one does NOT have Personal Courage, none of these others CAN BE OBTAINED.

Marky stands steadfast and tall as he faces EACH day with its set of conflicts in his young 8 yr old life.

How does he do it day after day?...COURAGE

I ONLY make it through my days, with weakness upon weakness that I coddle with Diet Coke, chocolate, whining, and other indulgences that i afford myself as coping skills.

My goal today is to take upon ME the "Soldier's Creed".

To enlist the "Army Values" in MY core.

Marky does it without vices.

We can too.

Thank you Captain Marky for Leading me.

Love, Markysmom

Captain Marky receives Honorary Veteran's Flag from General Tarbet !

Utah Honor Guard

this helmet weighs 7 lbs

Marky's no dummy !

taylorsville cheerleaders

Saturday the 13th.

After Marky's "high profile" day with the Veterans,
He spent all day Friday with another set of Vets...

PCMC hosted Marky for a round of chemo/Remicade.

The "Honorary Captain" rode atop a hospital gurney !

He was awarded with an IV full of the magic potion .

His "Superior Officer" (Dr. Pohl) did an official inspection.

The recurring pain, that no one knows what to do with, has been labeled as...."anxiety issues" !

So a resulting increase in his amytriptaline dose is the attempted resolution to end this latest "conflict" in the battle against his chronic pain.

We'll see how that goes.

James was Markys "wing-man" yesterday up on the "hill". I worked all day.......mostly trying to work through my "mommy guilt" for not being with my little warrior in his latest skirmish.

Thanks for all your comments and prayers for Marky. YOU ALL keep me going several times a day as I check this blog for your visits.

Love, Lynette

Veteran's Day Honors For 8-year-old Kid - Connect2Utah.com

Veteran's Day Honors For 8-year-old Kid - Connect2Utah.com

VETERANS DAY 2010,

Marky was invited to ride in the Veteran's Day parade today

He rode in a HUMVEE, with several military guys of rank.

He was all "duded" up in his uniform, Beret atop his head, tilted just so.

Shook hands with the Mayor of Taylorsville.

He was honored as a veteran of a battle.....The War on Disease.

The news team of Channel 2, hosted by Brian Mullahey, featured him on the news tonight at 5 and 6 pm.

What an honor to be among those of our armed forces and to share their spotlight today.

My dad, Serge L. Huff, is a veteran of WWII. He is a hero to me.

The first call of EVERY veterans day from my phone is one to him, thanking him for serving our country.

He is among a near extinct species of our time. He and so many other young men raced to enlist to answer the call of duty. He may not have even been quite 18, like so many others. But proudly stood tall and served any way they could to protect the freedoms we take for granted today.

My Dad replies with the same answer every year when I make the annual call:

..."It was a privilege, and an honor to serve", and "I'd do it again, if i could".

So to all Veteran's....of ANY KIND....

Thank you for serving us and for your courage to stand up for what is right and good.

I Love you Pops......It is an honor and privilege to be your daughter.....Nett.

Wednesday the 10th of November......

Marky went to school yesterday. Stayed all day.

First time since last Tuesday.

He's trying to make it again today.

He's still in quite alot of pain. When I got home from work last night, he looked exhausted, worn out.

His face begs for relief of pain. My heart begs for relief of his pain, and every other child suffering.

Today's Fast Sunday--

Which is, for those who arent sure.....

When the Primary kids sing all their songs REALLY FAST !

At least that's how "Sister Jeanes" the Crazy Song lady in Primary used to do it!

I got released from my primary chorister calling a couple of months ago.

The "stated" reason given by those in "authority" was....so I could be more available for Marky cause he's often sick on Sundays, among all the other days.

But I have suspicions about that given reason.

I may have been a little too......oh,.....irreverent in my methods !

This dawned on me when I was asked to sub for the "new" chorister a couple of weeks ago.

As soon as i got up to .."do my thing" with the kids.......one of the leaders in the back of the room quietly got up and slithered over to the door and non-chalantly closed it.

Somehow I have a knack for raising the Decibel level with those kids !

We used to sing..."Primary children sang as they RAN and Ran and Ran and Ran".....all around the room !

Sang Extra FAST on Fast Sunday.

Changed the words on "The Lord commanded Nephi to go and get the Plates"...to...: "The Lord commanded Nephi to go and get the Knives and Forks" !

And of course, the "Missionary Stew Song", otherwise known as "I hope they call me on a Mission".......

This was re-named, as the last line of the songs sings...."JUST LIKE MISSIONARY STEW".....Not "JUST LIKE MISSIONARIES DO" !

And other Hair raising, spirit boosting , sensible improvements.

All I wanted the kids to do was...feel the spirit ! AND LOTS OF IT !

As my brother Lee would say....

IM NOT SORRY !

CHILDREN SHOULD NOT HAVE TO SUFFER

THE END.

Friday the 5th of Nov.

Marky's been sick for 3 days.....

The infamous belly pain that mysteriously comes and goes.

He actually went to school Mon. and Tues..ALL DAY.

Even had a "play date" with his FAMOUS "RUNNING BUDDY"--ALEX tues after school !

Then Tues night around nine, the pain hit. He was clutching the blankets and gripping my wrists like a vice. His toes were curled under ( a sign of pain or stress in kids, dont ya know), and he was pale as a sheet.

He stayed home from school Wed, Thurs, and wouldve today if they werent already off for parent teacher conferences.

Got a humorous call today from a bill collector for $102.30. Unpaid office visits for Mark and Sam!

I chuckled as i spoke with the very nice concerned lady that i owed her SO MUCH MONEY !

I then related to her my story about Marky's currently still UNPAID $300,000.00 plus hospital bill at PCMC, among other ginormous price tags for health !

....Just another fun day in the life..........

Have a great and HEALTHY weekend everybody.
Love , Lynette