Wednesday evening--

Marky just got back from his Endoscopy thing.

Dr. Pohl showed me the pics of the tour through his GI tract.

Several areas of bleeding lesions which are generally associated with celiac disease.

He is mostly convinced that this was all triggered from the gluten challenge.

He even suspects the possibility that celiac disease triggered the auto-immune response that triggered the fibrotic sclerosing retroperitoneal spindle cell tumorous whateveritwas crap that took over his life !

All of Marky's old "teams" that swarmed around him during the last "war on terror" up here are back coming in to see him.

After all, he IS a legend up here, "the Miracle Marky", the "wonder boy",

the "LITTLE WARRIOR" !

One group of Docs is ordering a bunch of other lab tests to rule-out some more stuff. He will get an MRI tomorrow, too.

So we will hang around up here for at least another day or two.

Blessings are continuing to come to our little warrior as he fights the good fight......again.

Wednesday 11:30 am--

Marky is resting with some IV Morphine on tap.

He is scheduled for an EGD (scope down the throat) at 12:30 today.

They'll look around again to see if anything has changed.

The doc thinks it may all be related to his recent "gluten challenge", even though the blood tests dont manifest it.

They will do an MRI on his belly tomorrow sometime to try to get another look for clues.

I am able to sit up here w/ Marky today. My work load was light today so i got to leave at 9 am and come up. James has gone home to rest and take care of Sam when he gets home from school.

Thanks for your prayers

Markys pain returned last night with a vengence.

He was actually admitted to Primarys as an inpatient this time for more agressive pain control and tests.

James took him up there and I stayed with Sam and Scott.

The Dr. said they would likely do some kind of scope on him today to see anything .

Last night before they left, Bishop Rupp happened to be here dropping Scotty back home after home-teaching.

We invited him in to give Marky a blessing before he went up to the hosp.

We all sat at the foot of the bed while Bishop Rupp layed his hands on Markys sweet head.

Shortly after Bishop started with his prayer, our "angel Sam" very softly crept across the bed and got up on his knees next to Marky and PUT HIS HANDS ON TOP OF THE BISHOP'S .

He assisted reverently until the bishop was done.

I was amazed at the sight of this dear heavenly angel helping to minister unto his brother.

A task i'm certain he came to this earth to do.
\
All that the bishop said after he took his hands down from Markys head was ....
...."Thanks for the help, Sam ".

It was a moment i will treasure all my days.

Wish you couldve all been here to see and feel .

Love you all. Netti

Tues. AM--

The CT scan showed a small amount of ascites (fluid hanging around in places it doesnt belong) in his abdomen....otherwise nothing significant.

His pain was progressing as the night continued and he received two doses of Morphine.

The docs are uncertain of the cause of these current symptoms.
perhaps its the "undiagnosed" celiac disease. Or maybe the nasty sclerosing fibrotic crap raising cane again.

If you remember, non of the diagnostic scans ever showed any of his disease before.

Only the exploratory surgery.

At 1:00 this morning we left for home with prescriptions in hand.

A round of steroids, some kind of non-narcotic pain meds and something else i cant remember.

I had to be at work at 7 am today, so James will manage the care of the boys.

UPDATE at 8 pm, Monday night----

So far, the blood work is turning up with nothing significant---thankfully.

Marky is still drinking the icky contrast for the CT scan. They will get him in for that within the hour most likely.

His pain is still quite bad. They gave him some Zophran--the wonder drug for nausea.

His eyes crossed within minutes after the good stuff hit the capillaries !

Thanks for all the calls of concern and support.

Sam is at home with a fever, trying to share the spotlight with Marky, i guess. James is tending to him, along with Scotty.

Thanks to all the neighbors that are pitching in with offers to help.

Will update after the CT results. Probably will be a couple more hours.

Love, Netti

GOT MARKY UP AT PCMC ER :

GETTING IV FLUIDS, TESTING HIS BLOOD FOR ANYTHING.

WAITING FOR A DECISION ON WHAT TO IMAGE AND HOW TO IMAGE IT....ie CT scan or Ultrasound.

He's having "pain in his liver" as he describes it, and severe nausea.

I feel relief knowing that he will be taken care of now up here. No more ringing my hands wondering whether to bring him up here or not.

He tried to go to school this morning. Made it till noon, then came the call....."my liver hurts, mom".

We will wait and let the experts do their magic.

keep ya posted......love, lynette

UPDATE: Doc just came in and ordered a CT abd/pelvis. Marky gets to drink some "contrast" to make his intestines show up. Then wait 2-3 hrs and do the scan.

Saturday---

No change in Marky's status.

He's no worse. That's good

No Better. Not so good

His buddy Jonah came over last night to cheer him up and play a little.

Jonah keeps a vigil over Marky and reports any signs of anything when it comes to Marky's condition.

He is a devoted friend and is so amazing to watch as he worries about Marky.

Im working again this morning. When i get home i'll assess the patient and try to decide whether to take him up to PCMC.

Something is not right. Can feel it in my gut. And his eyes are sunken and glassy. He feels like throwing up all the time. His headache is better, no spots anymore. Just complaining of "crappiness" and nausea and his liver hurting.

Ive been nervously eating all the cookies at work and raiding the fridge for Diet Coke ! ......What else can I do !

Friday the 24th of September:

Marky's been ill all week with a headache --seeing spots, and nausea.

He says his "liver hurts".

We've been on the phone every day with the Docs up at PCMC trying to figure out what to do.

He had his Remicade infusion last Fri. and has been feeling crappy ever since.

They drew a bunch of blood for lab work and it is all looking good, they say.

So we are all pacing back and forth ringing our hands with worry.

ESPECIALLY ME !

I asked him last night if he thought I needed to take him up to the hospital.

His reply was....." you probably better , cause my liver hurts" !!

I grabbed Scotty and we all knelt in prayer. Scott prayed for him to feel better and all that other good stuff. (I always make them pray in times of peril---I tell them that God listens to a child's prayer WAY BEFORE a dumb adult's ! )

I did not take him up to the "mountain" yet. Still wringing my hands. But have another call into the Docs at Primary's.

Keep ya posted.

Pray for Marky, please..........Lynette

Marky is back in "Theatre"....

We are spending the day at Primary Children's getting his Remicade infusion therapy.

We have been up here since 0930 this morning. it's now 1500 hrs....(thats 3:00 military time, for you civilians) !

He's been a trooper, of course. Mostly bored. He has to lay in bed the whole time.

On the other hand...."mom" has been much less manageable. ! ! !

The anxiety accompanied with hauling a child back up this hill along with its all too recent memories is bringing out all the coping skills that were waining at

best in the first place !

Large quantities of chocolate covered almonds is the "coping skill" du jour for me !

Marky has been pinching me everytime i try to cry !...a technique that has served us well since the introduction of the "pinching diversionary tactic" was suggested by my co-worker, Angela !

Every time the tears are threatening.....you get someone to pinch you ......takes your mind right off whatever it was you were getting ready to cry about !!!

Marky and me are getting to be quite the team at it !

On a lighter note......

This is picture does in no way do justice to the mess that our littlest "Angel" Sammy had waiting for me when I got back from work tonight !

It is an entire box of Nestle's quik dumped on our couch by the "destroying angel---sam" !

We just barely got that Nesquik chocolate decadence last week when i got a decent paycheck ! We hadnt had any forever !!! Its not a necessity...just a treat...

Now our dog Rocky is trying to lick it up off the couch !

Sam is a gift !

Sunday the 29th of August --

Today ive been invited to tell the "Story of Marky" to a group of Primary children in Sandy.

Marky and I will go and do our best.....how could words possibly do justice to such an extraordinary journey, let alone cram it into 10 minutes!

I will tell the children of one of the pivotal experiences in the journey of Marky...

One Sunday, our bishop Jeff Rupp, invited all the dear Primary children in our ward to kneel down together in the primary room. He then offered a humble prayer pleading with the Lord to heal sweet Marky.

He also visited EVERY class and meeting during those couple of hours in our church building and invited each of them to kneel in prayer as well.

A whole community of people binding their faith and love together for the sake of this child.

I was not there, as I was with Marky at the hospital that day. But as the story was told to me by so many... I have no doubt that God heard these humble people, especially those little primary children.

Soon after this event, one of President Monson's associates, Elder Kenneth Johnson, came and administered a beautiful blessing upon our Marky. He blessed him that he would someday return to his daily life. And be riding his bike with his friends.

I remember sobbing, and doubting. Wondering how any of this could ever be, as I watched my boy laying listless in that hospital bed, barely hanging on to life.

That very night, late, around midnight, a Doctor i hadnt seen before stuck his head in Marky's room. He introduced himself and said he'd heard about Marky and had to come see for himself!

He said he had seen something similar to what Marky had. And started talking about the treatment that Markys other Doctors should think about trying.

I begged him to please....."Go write the Orders in his chart, right now" !

I knew the Lord had sent him to us that night.

Marky had been laying in that hospital for weeks and weeks with everyone scratching their heads not knowing what to do.

I told this Doctor that the Lord had sent him to us, I told him that he was an answer to our prayers. I hugged him and thanked him profusely as I cried with gratitude.

It was within 2 days that Marky started getting better. He was responding to the treatments.

A true Miracle that I cant deny. Even with the prominence of my cynical streak, (which i think is just a defense mechanism for disappointment), I witnessed a great event.

It is evidence that we are not alone in this world. That God does hear our prayers.

You are ALL answers to our prayers. With the many kind deeds and words offered by so many of you throughout this "trek" of ours.

We are so grateful to each of you for helping us get our little Marky back to " riding his bike with his friends" !

Love, lynette

Wednesday the 25th of August:


Today, maybe, I can get enough composure to log in to Blog !

Monday was, for most of us w/ kids, the first day of school !

I had the day off, thankfully. It was Scott's first day of High School at Alta High ! And Markys first day of 3rd grade !

I dont know which one of them i cried most about !.....Scotty, my first born, off to scarey High School, or Marky.........ACTUALLY ALIVE AND GOING BACK TO SCHOOL !

Fortunately, my husband James understood , or at least sensed, that he should just leave me be !

After getting them all out the door and delivered to their schools, I sequestered myself in my room and cried. I qued up my best "chick flick"....Pride and Prejudice...of course, and burrowed in for a few hours.

I believe that the therapeutic value of even a couple of hours of this curled up, fetal position, chick flick, crying nonsense is beneficial , even though it accomplishes little in the way of productivity and rarely changes the outcome of anything you were "curled up" about !

I did however dump out the "unmatched sock vortex" drawer on the bed as I sat there and tried to make it look like i was doing something important, should James peak in on my ritual !

Before the "curl up", I had driven Scotty to The front door of Alta High. Of course, I had my camera to record the monumental event of the FIRST DAY OF HIGH SCHOOL !

I insisted that he pose in several places showing the "Alta" logo in the background. He was rolling his eyes in every picture !

Finally, He said....."Mom, ENOUGH ALREADY", and I reluctanly watched him toddle off to the den of lions !

i MAY have driven around the school a couple of times, just incase he came running back out !

Then I had a great idea !...I called him on his cell phone to see if he had enough money for lunch and snacks !!!!

This always works with kids ! Offer money and they always come running ! And he did ! I got one more look at my little Scotty before his innocense was shattered ! reluctantly, i drove on home to face the next torturous chapter of the day. Taking Marky to 3rd grade !
Sam will start KINDERGARTEN next week!

Another day of miracles ! Who wouldve thought my littlest angel that began this earth life with so many trials would ever be riding the bus to kindergarten !

My neighbor, Dave Dansie, stood on our driveway one day about 5 years ago and said...."You just wait, little missy (anyone is "little" next to Dave), pretty soon, that little guy is gonna grow up and be going off to school before you know it !"

I thought, yeah right Dave ! Sam was so sick and laden with complications of many kinds in those early years.

I hate it when guys are right ! But, glad Dave was right about just this ONE thing !

Sitting here staring into Sam's beautiful eyes reminds me of a quote by another "lucky" family member of a child with Down's Syndrome....

He's not here to LEARN....he's here to TEACH

One of our little Sammy's latest M.O.'s (mode of operations--for you non-military's) is to grab the 2 people he's in between and pull them together and make them either hug or kiss each other, then they have to kiss him, or he kisses them !

He does this at church, and other places, when i'm holding him while talking to ANYONE !

So great, and such a lesson to learn, on so many levels !

This is a picture i thought was amazing:

Sammy's chest opened up at age 6 mo. to save his life !
Marky's belly opened up at age 7 yr. to save his life !

I FIGURED OUT HOW TO POST PICTURES GALORE !!!

No need to label each one! Just look at his face !

Hey you guys !

MARKYS IN THE DESERET NEWS TODAY !! Check it out in section B-4 ! Click on the photos if you look it up "on-line" !

THE WISH HAS COME TRUE ! ! !

We're still speechless from the outpouring of love and generosity for our
dear Marky on Friday the 30th of July.....and all the countless hours leading up to the BIG DAY !

How to describe such an event:...... cant be done --

However, Friday morning, the whole family took Marky out for an early birthday (sat the 31st was his BD). While we were out playing, the Wish
Granters transformed our backyard into a "command post" !

THE JEEP IS SOOOO AWESOME !

On the west end of the yard is a "bunker" with piled up sand-bags to "take cover" behind ! There is a medic tent with a real army cot and a medic's bag with bandages and cool stuff in it for the "wounded".

The middle of the yard is our old play set that was transformed into another bunker with camouflage netting and ammo crates full of "faux" army grenades ready for launching !

THE JEEP is strategically placed in the North-East corner of the yard to hold off any insurgents that may dare enter the premises !

It has been improvised with a solar powered battery that enables the headlights to work and a bunch of other cool stuff. The steering wheel turns/ as do the tires. The Jeep is lifted slightly on permanent jacks to allow the wheels to turn !

Its all "kid-friendly" modified and weather proofed for war conditions of any kind !

Crates of cool army stuff were brought in complete with uniforms, hats, grenades, weapons of war, army packs, "brain buckets" (metal helmets), even military issue decks of cards to play with while they await "orders" from the "Chief" !

As we entered the backyard and saw at least a hundred people there waiting in the sweltering heat, Marky's jaw dropped ! We were ushered to the center of the yard.

Capt Adamson called the group to attention and signaled the color guard to "present the colors" . The solemn crowd reverently watched as the Hill AFB soldiers respectfully payed tribute to our flag and the freedoms that it represents. The national anthem was played as well. What a thrill !

Capt. Adamson then turned to Marky and read the "Oath of Enlistment" to him as Marky repeated all the covenants back ! The Capt then had Marky sign the document and present him with a Captains Beret to don !

There was hardly a dry eye.

There were tons of soldiers dressed in full uniform . Three Colonels, Captains, Seargents, a whole platoon of guys were there to pay homage to our "Little Warrior" !

Channel 4 and 5 were there to cover the story (which was aired). The Salt Lake Tribune put him on the FRONT PAGE ! Reporter Robert Kirby, whom i am a big fan of, covered the event and wrote a huge spread that was printed on Saturday ! ( you can check it out on-line) ! What an honor !

The Make-a-Wish foundation spared no detail for this little warrior!

We are SO grateful for all the time and love that went into creating this dream for Marky ! Thank you Thank you Thank you !

Love, Lynette

**** THE WISH IS COMING TRUE *******

Today, some " wish-granter's " showed up at Marky's house !

He was presented with a full Army uniform ! A few minutes later,
a truck and some guys showed up and started building a military
base in the backyard !

It looks like a "basic training" camp is sprouting right in our very
own backyard !

We've been watching the whole process unfold throughout the day.

We'll see what else "covertly" rolls in !

July 22, 2010 in Marky's world --

Marky is doing GREAT ! He's been buzzin around the neighborhood with his buddies having a fun summer.

Speaking of Buzz's......Our next door neighbor, Jana, gave Marky the customary "summer buzz cut" on Monday ! She lined up all the neighborhood boys out on her front porch, James included, and buzzed em all ! Sam kept acting like HE was gonna be next, standing there like a little puppy wagging his tail for a treat ! Then as the barber stool was made available each time, he ran for the hills !

So, Sam is the only guy within miles without a buzz, currently. I've been debating the "get him while he's sleeping" technique ......will get back to you on that !

Friday the 16th of July in Marky's World--

Last night two REALLY COOL guys showed up at our door to interview Marky about his Make-A-Wish !

One guy (Pat) had a camera, and the other guy (Mike) was the
designated "interviewer".

They were great. Mike wanted to know all about Marky and how
he came up with the idea that an ARMY JEEP would be the PERFECT
WISH !

The camera guy, Pat, handed the fuzzy microphone to Mike, who aimed it in Markys direction.

We all sat with great anticipation of a descriptive stream of verbage from Marky illustrating himself playing in his backyard on a real army jeep, protecting the universe from all evil-doers !...........

Then it happened------------

The thing a mother always fears when someone asks her child a leading question that would encourage him to speak eloquently and time-consuming ( like they do when no one else is around to see it)..............

THE " shoulder shrug "! ! ! !

Yep, he sat there like a bump on a log ! But SAM....now that's a different story !

When Sam realized that the weird fuzzy thing was actually a Microphone, HE started chirping ! He was giving HIS version of all of it ! In his own native tongue, of course, that only angels can interpret. We had to keep shushing him. Which did not bode well with Sam !

Eventually, our two new friends convinced Mark and Scott to re-enact some battle maneuvers in the backyard with their army gear on. Marky came alive !

The most entertaining part was watching Pat, the camera guy, run around trying to follow Mark as he hunted down the enemy, Scotty !

These two guys were fantastic. They will be streaming their pod-casted story of Marky sometime in early August on the web with DICK NOURSE, the newscaster celebrity.

We SO appreciated their time and interest in our "Little Warrior". I think all my boys are "Warriors" for trudging onward through all of our "steep hills" and "deep valleys" .

I found a patriotic holiday decor door hanging thing thats red-white-and blue......I hung it in the kitchen....................

Painted on the front it says: "HOME OF THE BRAVE "...........

....Says it all, if you ask me .

Marky is the little guy in the white t-shirt -- green beret -- front center.
Scott is the cool guy with the "aviator" shades and the "brain bucket" on seated to Marks left.

Im working on trying to figure out how to
enlarge these pics...... be patient w/ me.

I called my blog expert, Jana Harris, to fix
it. ! She's a life saver.

July 6th 2010----

Yesterday Marky rode in the "Freedom Festival Parade" down in Provo, UT.

He was invited, thru the "make-a-wish" granters, to ride on a WWII army tank!

The Military had numerous entries in the parade. This giant, magnificent,
"Hellcat" tank had actually been in theater at the Battle of the Bulge !

It was a grand honor to have my boys (Scotty got to ride next to him) seated
where great Heroes had ridden so many years earlier to protect and ensure
the freedoms we hold so dear today.

As I stood proudly beaming, I realized that My Marky and Scotty were among
others of rank as well.......

President Monson was a guest in the Parade too ! Along with several political
personalities such as Orrin Hatch, Jason Chaffetz, and tons of ranking Military
officers in highly decorated uinforms.....

There was a troop of "special needs" scouts that rode in style in the back of
a "deuce and a half" military transport. Now that was like seeing a gathering
of Angels among .....the rest of us. My Sammy went right up to them and waved
to his compatriots ! I told the troop leader that Sammy would be riding with
them someday, i was sure !

My point is, Marky (and Scott) were right up there with the best of them. They are equally as "valiant" and deserving to be riding "high" with all those "heroes" !

I realize many of you know kids, and adults, who have suffered greatly from illnes
and trials. Many far greater than my boys. Would that EACH of them, too, could be recognized as our Marky has been.

It was an honor and great priveledge to watch. I am so grateful to have been there and have that opportunity to see Marky have fun.

A beautiful sight that i never wouldve imagined in a million years! If you were to tell me back in December 2009, that my Marky would ride on a tank.... in a parade.... on the 4th of July.....I wouldve thrown you outa the hospital room and yelled.......
......"AND STAY OUT !"

Love you all------"proud mom"

Friday July 2nd, 2010--

On Wednesday, Marky had his EGD.."scope down the throat" !

He sailed through it like a champ. Never flinched as the nurse placed the IV in his pock marked arm.

Dr. Janet Harnsberger was the "approved by Humana" Doc who did the procedure. She was a dear sweet lady. She had been one of the earliest docs to look at Marky when he first entered PCMC way back in the beginning of December.

She was one of the early "head-scratchers" who passed him off to the next team in line. She had printed off all of Marks records the night before this scope, to brush up on his history. She was quite impressed with all he'd endured and even more impressed with his triumphant victory !

Today the results came back of the biopsies that were done on his stomach and esophagus during the scope.

NOT A SINGLE ABNORMAL FINDING ! ! All the cells looked like a normal kids cells. NOT A TRACE OF weird spindle cell tumor gunk lurking....at least on the inside of his stomach.

Of course, as you may remember, they only saw the nasty stuff when they did the "exploratory surgery" and opened him up...and it was all caked on the OUTSIDE of his organs.

But on his previous EGD, there were some clumps of "blunted" cells that resembled celiac villae. Except that Celiac disease is usually diffuse, or widely spread all over the stomach cells, not just clumped and blunted.

Okay, thats too much technical stuff for me too.....
But it still sounds positive....

Even so, I WILL GRAB AT ANY POSITIVE OPPORTUNITY AND RUN WITH IT AND WAVE IT LIKE A BANNER !

However, We are ordered by the Docs to remain Gluten free for now. Dr. Pohl doesnt want to take any chances on a resurgence of trouble.

The root of all this is STILL unknown and all precautions will be met with gusto to insure the supression of "what-ever-it-is" that attacked my little prince.

I wish all of Markys buddys a great 4th of July ! And WE LOVE YOU AND APPRECIATE YOUR CONCERN FOR OUR DEAR BOY !

Hi friends---

Last week was supposed to be Marky's EGD scope thingy....

It didnt happen. The insurance company decided that they wouldnt

pay for their portion of the scope because Primary Childrens Hosp isnt

in THEIR NETWORK ! ! !

They offered to pay a whopping 25 percent of the huge, i'm sure, bill...

They said if we elected to go to one of THEIR provider's, at another facility

they might pay 80 percent ! !

A facility that doesnt specialize in "Childrens diseases", and a Doctor that doesnt

even know Marky ! ! !

So i said forget the whole thing ! This ridiculous call came while i was standing

in line at the airport last Friday to make an emergency flight to Phx to tend to

my older brother who was on life-support in the ICU from complications from

a stroke. He's only 53.

There's no shortage of wrinkle-producing, gray-hair inducing, stress-eating opportunites everywhere you look !

I MAY agree to let some stranger-danger doctor scope Marky at an "adult" facility this week. Markys doctor, Dr. Pohl, said to go ahead and do it.

So it's scheduled for THIS wednesday at Wasastch endoscopy. I'm disgusted with

insurance companies, telling doctors how and where they can practice.

Doctors take an oath to "Do no harm" when they become official. The insurance

companies are doing all the "harming" by not allowing the patient to be treated

properly and appropriately and timely by dictating every move the doc. makes !

And some people think this will be remedied by "Socialized medicine" ! All these decisions will then be decided by "Government know-it-alls" ! Patients like Marky

will most likely be put on a waiting list and priority list !

We will undoubtedly be forced to sell more than our "Harps" to go out and privately buy services to save the lives of our children and loved ones.

The day before i found out my brother tried to die, I sold my beloved Harp to keep us in our home.

I bought my harp 30 years ago with my OWN money...no mom and dad help. It has been a joy in my life and a source of peace and beauty, a bit of "heaven on earth".

However, there could be no JOY or PEACE or BEAUTY without my children and their comfort.

I always say that i would MOVE "heaven and earth" to take care of my boys.....

Last week, i SOLD "heaven on earth".

yo peeps greetings from marky

Tuesday June 22nd in Marky's world---

On Saturday Marky was invited to be a VIP at "Fort Douglas Day's" annual parade and open house.

Fort Douglas is an Army depot up by the University of Utah..

He was treated like a king. Got ride up on a big 'Deuce and a half', which is a big army truck that transports guys and big guns and all that cool stuff.

He got to shoot off a cannon of some sort. They told me the caliber, but it didnt register in my non-guy stuff brain. But it sounded big !

He also got to shoot a machine gun and ride in their parade !

LUCKY ! ! ! All this is part of the Make-a-Wish happenings that are starting to come together !

The guestimate of the Jeep arrival is somewhere around 3 wks from now.
We are Sooo excited ! As you can imagine.

TUESDAY June 15, 2010

Just reporting in on the latest happenings with Marky Jeanes.

He's been mostly well. Just a small cold/cough, and intermittent
"crappy-ness". But still keeping his chin up and staying positive.

The Make-a-Wish "granters" have resumed the search for a Jeep now that the Army mission has failed.

I located quite a few jeeps on the internet for sale from "civilians" and gave the info to the "wish granters" . They assured me that they would move forward and take care of things so I wouldnt have to.

I told them i was perfectly okay to pursue the "wish" if they hit any snags. We'll see what happens.

In the meantime, it's like the "tooth-fairy" scenario every nite at the MarkJeanes house ! He goes to bed each nite wondering if "Tomorrow" will be the day ! ? ? ! So he is very anxious. And if He's anxious...I'm anxious !

Next week on the 23rd of June, Marky goes up to PCMC to get the EGD scope thingy down his throat to check the cells on the inside of his stomach. They're looking for Celiac disease stuff, and any other clues that may help solve the mystery !

I believe he will continue to be a mystery and just be "managed" as a kid with a weird "auto-immune" disorder that happens to be responding to a "hail-mary" treatment idea............which i'm SOOOOO GRATEFUL FOR !

Hi Everybody !

Thanks for all the great Birthday wishes !

As most of you know, i share my birthday with my twin, Lori.

She entered this world 5 minutes after me. I was grateful for the
companionship, as i had three (3) older brothers waiting in the wings
to torture a little sister !

I turns out that wasnt the case at all. Our three brothers adored us
and still do. We think they're pretty cool too, with few exceptions !

Yet, my little sister, Lori, was and continues to be the one that carries
the weight of our sojurn !

She rescues without hesitation.

She answers my relentless cries for help.

She offers support and a shoulder to cry on.

She understands charity and pure love.

She demonstrates charity and pure love.

She is all that i hoped i could be.

She is all that i wished i could be.

I owe her an eternity of gratitude for her companionship. And i will
ever be her loyal envious friend and sister,

Happy Birthday, Lori ...........Love Lyn.

Hi to all of Marky's buddys

Summer's in full swing mostly. Markys is trying to keep up with the
neighborhood kids running back and forth house to house !

Wish I could run with em ! Dont you !

He is in great spirits, yet asking every day if his "Make a Wish" is coming soon........

Speaking of that....i received word that the "Army Jeep" wish had been
denied by the U.S Army. Apparently the army will NOT allow any equipment to be allocated to any civilian for "liability" reasons.

EVERYTHING is a possible LIABILITY !

This Life's a huge liability.

What if a young boy with an uncertain future were to actually have some kind of repreave and respite from his "crappy" feeling day to day life of
pain and limitations ? ?

Now the walls are caving in on this young boys living situation, ie, home and community of friends and family and the bank wants to put us out.

How about taking a risk, ARMY GUYS, and weigh the options of your
LIABILITY of helping a young boy get his wish of some scrap metal
frame of a beat up, non-working army jeep !

The Army continuously weighs options and liabilites and outcomes.
They continuously take risks for the good of our people and precious
freedom.

But they cant take the RISK of putting a dilapidated old jeep carcass
in a little kids' backyard and "make his wish"

I have EVERY respect for the U.S. armed forces. Our freedom and opportunities are a direct result of their risks.

I just think we as a society have over "liabilitied" ourselves into a little tiny corner .

A corner called "INABILITY".

If any of you know of an old jeep that I can purchase and paint/camouflage to look like an army issue, please contact
me:
Marksmom

Wednesday June 2

Marky's Remicade experience went "great"----in his words.

The IV "blew out" the vein in one hand, so they moved to the
other hand.

I asked him if it hurt when the vein blew, and he said,
"No, it kinda tickled" ! Oh come on ! !

I think his Dad told him to say that so I wouldnt freak out.

Marky spent the Memorial holiday feeling "crappy" and tired
and just plain worn out-looking.

Yet, overall, it was an uneventful weekend.

Uneventful is FANTASTIC in the Jeanes Home !

It means......no one went to the hospital or Dr. !

Scott returned from a weekend with his Dad, Mike. HE probably
couldve gone to the Dr. to stitch up the gashes on his shin from
trying to negotiate a river bed with his mountain bike.

Hope you all got some relief from your everyday rif-raf too.

love, Netti