This next post is from the Man himself--Marky

it really suuuuuuuuuuuuuuuckd!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! bein inthehospitol !

THIS NEXT ENTRY IS FROM JONAH LARSEN--MARKYS--BUD-- MARK HAS BEEN REALLY GOOD THIS TIME . YOU KNOW HOW MARK WAS AT THE HOSPITAL FOR 4 DAYS . YA.BUT THEN MARK GOT REALLY SICK ONE NIGHT AND HE HAD TO GO BACK TO THE HOSPITAL FOR 56 DAYS. NOW THAT SUKS .BUT HES BACK HOME ISINT THST GREAT .WELL THATS ALL TODAY FOR NOW.

signed, jonah.

surrounded by Angels ---

HI EVERYONE !

GLAD ITS FRIDAY?

I'M GLAD ITS FRIDAY AND MARKY IS HOME...STILL !

HE CONTINUES TO BE A MIRACLE CHILD. EVER CHEERFUL.
HE MISSES HIS FRIENDS, HE MISSES HIS OLD CHEEKS, AND
DOES NOT LIKE ANYONE TO MAKE FUN OF HIS CHUBBY CHEEKS!

HE MISSES SCHOOL TOO. HE WANTS TO DRIVE BY THE
SCHOOL ALL THE TIME HOPING TO GET A GLIMPSE OF HIS
FRIENDS OUTSIDE PLAYING ON THE FIELD !

HE IS TIRED OF BEING SEQUESTERED AND CONFINED TO US !
BUT AN INFECTION OF ANYKIND COULD LAND US BACK IN
THE SLAMMER....I MEAN PRIMARY'S !

ALTHOUGH, HE'S BEEN OUTSIDE ON GOOD DAYS PLAYING
WITH HIS BUD, JONAH....HIS PIC LINES ON HIS ARM BLOWING
IN THE WIND !

THIS MAKES ME CRINGE AT THE THOUGHT OF THEM GETTING
CAUGHT ON ANYTHING OR CRUD INTRODUCED INTO THEM !
YET, ITS GREAT TO SEE HIM ENJOYING EACH MOMENT!

I'M GOING TO TRY TO "ENJOY EACH MOMENT" TOO ! IT'S
HARD ISNT IT?

MOST EVERY MOMENT IN MY HEAD IS FILLED WITH....
MEDICAL BILLS, MORTGAGE PAYMENTS, UTILITY BILLS,
FOOD BILLS, (GLUTEN FREE STUFF IS OUTRAGEOUSLY
PRICED), PASSING HUGE BOARD EXAMS, WORRYING
ABOUT THE NEXT ILLNESS, AND WHO IT WILL BE THIS
TIME !

I KNOW YOU GUYS HAVE SIMILAR "CRUD" ON YOUR
PLATES. BUT I'M GOING TO GIVE MARKY'S APPROACH
A TRY AND SEE WHAT HAPPENS.

IF YOU NEED A REMINDER ON HOW TO DO JUST ABOUT
ANYTHING....RE-VISIT MARKYS "OLDER POSTS" ON THIS
BLOG AND RE-READ ANY OF THEM ! WOW, HE IS AWESOME!

Marky's cheeks are "courtesy of steroids"
My happy cheeks are "courtesy" of all of your prayers that were answered!

these are some sweeeet cheeks!

courtesy of lots of steroids!

HEY DUDES,

I MISS ALL MY FRENDS REEEEEEEEEEEEEEEEEEEEEEALY!

BAD.

I MISS SCHOOL 2

MARKY BEAR 2544

http://www.makeawishfoundationofutah.blogspot.com

Is it wednesday already ?

I've just been reading the Make A Wish Foundation of Utah's
Blog spot. My first time looking.

What an inspirational experience. You guys have to check it
out. I'll leave the blog address when I'm done here.

It reeled me around and brought me to where our brains and
hearts SHOULD be. Not where they usually are....thinking
of just ourselves and our own problems.

We think we have it SO bad in SO many ways, but we dont even
come close to some challenges that others face and OVERCOME !

A little boy is featured on their blog that was born with many
problems like hydrocephaly and lives on a ventilator. He was
born with only one eye. And was not expected to live very long.

His family celebrated his Birthday each WEEK!...instead of each
YEAR. His eye is permantly shut. And his family calls it a WINK!

He is now 4 years old! Never utters a word, just winks and smiles.
but speaks volumes through his spirit.

I am resolved to be a better person, to seek out those in need
who aren't in my own little tiny "box"d up world.

Think about it.... Love Lynette

Sam the Special (needs) Team Player

Made it to Monday !

Marky had a great day with Aunt Lori as his custodian today!
She manages to get him to take all his pills, do his homework,
read his books, limit x-box time, and still retains his fondness !

As a Mom, those things occasionally fall in line, but usually
its not "fondness" that is retained, is it? Only the Aunt Lori
could pull it off !

Sammy had a surprise gift of delight at the end of his day....

I had to cart him into the pediatricians office for an update on his
hepatitis A immunization shot schedule. He experienced the
usual trepidations accompanied with entrance into the lobby
of the doc's office. Mostly trying to get me to put his coat
back on...signifying that we SHOULD LEAVE...AND NOW !

The delightful realization that his shots WERE up to date
and he was able to exit the office WITHOUT any purple heart
or "Oscar" winning display of emotional outburst was more
than we couldve hoped for !

So, today......I hope all of you were blessed with some similar
sort of "gift" !

If you dont think you were.......you better search again....
.......you were blessed, you just may need to search with a
little more effort !

As always, I'm grateful for the gift of your friendship and love.
Love, Nettie

Sunday and Mark looks great! We went for a ride with the family and Mark and Sam were like Frick and Frack, playing off each other.

Mark tells me he is loving his Mom's roast beef and potatoes dinner he had and we were grooving (?) to Johnny Cash's " The Boy Named Sue" Such culture he is exposed to; Johnny Cash, Elvis and Mamma's Harp! It gives a body pause doesn't it.

Its always fun to be with the boys and watch the love they share even when Sam gives his brand of Tough Luv.

Ken

Hi to all of Markysbuddy's

Hope you all are enjoying a Saturday "without incident" !

Im afraid to even speak it out loud, that Marky's had a
GREAT couple of days !----aside from the usual vomiting,
intense itching from drug side-effects, IV feeding, and the
constant paranoia of possible relapse or infection -!

If you dont think about those things, he's doing FANTASTIC !

I even got up early and left the house to get some physical
exercise this morning ! As if I were a normal person with a
normal life! Oh, I can pretend, can't I ! :)

Also spent the afternoon trying to study to re-re-take my
Ultrasound Vascular Board exam ! Dont ask the details behind the
re-re-take thing....it gives ME intense itching/hives !

But, I DO have some advice for others.....Don't take a Board
Exam the morning after you've been up ALL night at a hospital
with a critically ill child.. that's all i'll say about that !

Except that Board exams are EXPENSIVE..$200.00 a whack !
No discount for the more times you attempt to pass them, either!
I've become old friends with the proctor at the testing center, too.
Thats NOT a good thing....

So, as usual, its all about me! BUT....there would be NO ME..
without all of you to prop me up and tell me to keep going, to
leave large volumes of Diet Coke and even larger continent sized
chocolate chocolate bars at "just when i needed it most" moments.

You offer words of hope and encouragement, silent and uttered
prayers, home-cooked dinners, laundry service, house cleaning
dog walking, auction bidding, buddy walking, yellow ribbons,
crowd cheering, gluten free advising, and so much more !

So, to all of you, thank you for caring about US and reaching out
of your OWN busy lives to help us.

I look forward to someday being able to pay you "forward"
with good works to others in need.

Love you all, Lynette

Happy Friday from Marksworld!

Mark managed to sail through the IV therapy
of Remicade up at PCMC without incident !
Thankfully .

It took about 4 hours to infuse the good stuff.
The nurses also were able to "un-clog" one of
his PIC lines that had clotted off. So he is back
to 2 open lines in the PIC.

Ideally the way a "double lumen" PIC line works
is you can be infusing thru one line with meds or
TPN, and draw blood out of the other one at the same
time . Brilliant !

Marky's still taking all the steroids for a while longer.
His cheeks look like they could be holding several
water balloons in each side !

He remains cheerful and grateful to be home in his
menagerie of BEAN BAGS and creme soda !

His school teacher, Lisa Hodson, continues to visit him
2wice a week for home study ! She is a gift !

Thanks again to everyone for your support and love,

Lynette

WEDNESDAY FEB. 17.

TODAY MARKY GOES TO PRIMARY'S TO
GET A SPECIAL INFUSION OF REMICADE.

THIS IS A DRUG THAT WILL HOPEFULLY
HELP KILL OFF THE SPINDLE CELL GUNK
AROUND HIS ORGANS.

THEY GAVE IT TO HIM WHILE HE WAS AN
INMATE, AND THEN BACKED OFF DUE TO
SIDE EFFECTS ON THE LIVER OR SOMETHING.
AND, NOW THEY WILL START UP AGAIN.

IT TAKES A COUPLE OF HRS TO GET IT ALL
IN HIS VEINS. SO JAMES WILL BE THE
ENTERTAINMENT WHILE HE LAYS THERE AND
GETS THE GOOD JUICE !

HAPPY WEDNESDAY ! LOVE NETTI

Echo-ing the Colonel's thanks to all of you for
your help with Marky!

God Bless all of Markys "Buddys" !

p.s....Marky puked up all of your Salt City
Burger "idea" around 10:00 last night, KEN !

note to caregivers: NO STIR-FRY AND, NOW...
NO SALT CITY BURGERS !

signed: MAMMA BEAR ! ARGHHHH

If not for the many who have contributed to the auction there could be no funds for the many expenses that have continued to build geometrically and yet, there are the ones who come through. To all may I express great gratitude. God bless you all.

There is a charitable contributions account in Mark Jeane's name at America First Credit Union for those who can help in the challenges that lay ahead.

To Bryanne Fidler who set up the auction and worked to bring the results to fruition, God Bless you.

Today aunt Lori and uncle Ken took Mark to lunch @ Salt City Burger where mark had what he wanted; a cheese burger with tomatoes, lettuce, pickles and fries (No Bun) and he loved it. What a great young man; so fun to be with.

Ken Crocheron

HAPPY PRESIDENTS DAY FROM MARKY--

MARKY'S EXCITED THAT THERE'S "NO SCHOOL"
TODAY ! EVEN THOUGH HE HASNT BEEN TO
SCHOOL FOR 3 MONTHS !

I THINK HE'S MISSING ALL HIS SCHOOL BUDDY'S
AND IF HE KNOWS THEY'RE NOT AT SCHOOL, HE
DOESNT FEEL SO BAD FOR MISSING OUT ON ALL
THE ACTION.

HE JUST WANTS HIS LIFE BACK !

IM JUST GLAD HE HAS HIS LIFE! WHATEVER FORM
ITS IN ! HE'S A GIFT! ----NETTI

HERE'S ANOTHER COMPLETELY AMAZING
THING THATS HAPPENING TO MARKY!

ONE OF MARKS GENEROUS BLOG FOLLOWERS
NOMINATED HIM FOR A "MAKE A WISH" ! !

YOU KNOW, THE "MAKE A WISH" FOUNDATION
THAT YOU ONLY HEAR ABOUT OR SEE ON TV ,
THAT SEEMS SO COOL TO DO FOR THOSE SWEET
LITTLE CHILDREN ? !

I GOT A CALL FROM THE "MAKE A WISH" GUY THE
OTHER DAY ! IT WAS A SIMILAR EXPERIENCE TO
THE CALL I GOT FROM PRES. MONSON'S SECRETARY!

MY TEETH FELL OUT AGAIN!

I SHOULDA BID ON THE DENTIST EXAM ON THE AUCTION!

THE MAKE A WISH FOUNDATION IS SO INCREDIBLE ! I CANT
WAIT TO SEE MARKY GO THROUGH THE PROCESS. IT SOUNDS
SO GREAT.

AGAIN I AM HUMBLED AND UNABLE TO FIND WORDS TO
DESCRIBE MY GRATITUDE AND AMAZEMENT FOR ALL OF YOU
"GUARDIAN'S OF HOPE AND LOVE" FOR OUR DEAR LITTLE
WARRIOR MARKY.

LOVE YOU ALL DEARLY, LYNETTE

VALENTINES DAY AT MARKYSHOUSE !

LOVE AND HUGS TO EVERYONE FROM MARKY !

MARK IS DOING GREAT TODAY ! DIDNT THROW
UP----NOT ONCE- YESTERDAY ! ! A RECORD ! !

ITS EXCITING TO HEAR FROM SOME OF YOU ABOUT
YOUR "ON-LINE AUCTION" HAPPENINGS!

MY SISTER IN LAW, BARBIE, WON THE BID ON THE QUILT AND LOVES IT ! ,

MY SIS, LORI, WON THE BID ON THE ROLLS AND HOME MADE JAM! SHE DIDNT SHARE THEM WITH ME, BUT SHE DID SHARE THEM WITH "BIG JON", THE GUY SHE WAS IN THE BIDDING WAR WITH OVER THEM!

SO, THANKS TO ALL OF YOU GUYS FOR YOUR GENEROUS DONATIONS!

HAPPY VALENTINES DAY!

Scott Teaches Mark BMX

FRIDAY NIGHT WITH MARKY !

MARK HAS BEEN DEALING WITH
HIS USUAL HEADACHES AND NAUSEA
TODAY.

BUT KEEPING HIS SENSE OF HUMOR
THROUGH IT ALL. THANKFULLY.

HE IS PLANNING ALL KINDS OF CAMPING
TRIPS FOR THE SPRING AND SUMMER, SO
THAT KEEPS HIM HOPING FOR BETTER DAYS.

HIS UNCLE ALAN, (THE HELICOPTER PILOT),
INFORMED HIM TODAY THAT THE WINNER
OF THE BID ON THE HELICOPTER
RIDE FROM THE AUCTION, WANTS TO LET MARKY
AND A FRIEND TAKE THE RIDE INSTEAD OF HIM/HER!

WHAT A NICE, GENEROUS FRIEND ! THIS BIDDER
INSISTS ON REMAINING ANONYMOUS ! !

OF COURSE, I'VE BEEN TRYING TO PRY THE IDENTITY
OUT OF BRYANNE, THE AUCTIONEER ! BUT SHE WONT
BUDGE AND TATTLE-TELL !

SO WHO EVER YOU ARE......THANKYOUTHANKYOUTHANKYOU!

AND TO ALL OF YOU WHO CONTINUE TO GENEROUSLY
GIVE OF YOURSELVES IN SO MANY WAYS.....
THANKYOUTHANKYOUTHANKYOUTHANKYOU ! ! ! !

LOVE AND BLESSINGS TO YOU, LYNETTE

Saint Mark with his minions.

Marky came home again last night!

AND....Sammy has STREP !

Oh Boy!

Most of the issues of concern about Marky
were chalked
up to the meds he's on.

His liver biopsy showed "scar tissue" which
is probly the sclerosis spindle cell stuff. But
no infection or Malignancy. Thank you !

We have sequestered Marky into his room
with the door shut, mask on, to keep the
Strep germs away....As if!

Never a dull moment over here at the
"house of chaos" !

I KNOW you guys are having a better
day than this! count yer blessings!

As it stands, Mark will have a liver biopsy @ 13:00 hrs and then will be observed for 2-3 hrs. Pending favorable results, he will bust outa here by 17:00 and come home.

Dr feels that what Mark has been experiencing is likely caused by the massive steroid therapy rather than disease complications. He has elevated liver enzymes ergo; the biopsy but that issue is also likely a result of the steroid therapy.

They have begun to tapper the steroids and will likely begin Remicad and eventually Methotrexate. Mark is very immune suppressed and so all visitors including docs and nurses, have to use masks and gloves when entering Mark's room. However I find the masks are quite flattering when seen in a certain light.

Mark is cheerful and had a restful night and Lord willing, will continue the healing process moving forward.

As Mark returns home, it will be essential to restrict visitation and those who do visit must be infection free and wear the lovely masks to avoid any complications.

Mark past his labs and was released to go home at 7:00 PM. He had eaten a Chicken Caesar Salad and some Jello with no ill effects.

Mark's docs have narrowed down the focus on treatment and will slowly ween him from the steroids over time fully understanding that there are and have been side effects such as the elevated enzyme counts with liver and kidneys but with care, can and will be managed. It was stated tonight that Idiopathic Sclerosing Mesenteritis is most likely the diagnosis as it responds to the treatments not perfectly, but with promise and demonstrable results.

Thank You all,

Ken

Wednesday 0845 am--

TODAY MARKY ENDURES FASTING
AGAIN PRIOR TO A LIVER BIOPSY
THAT WILL HOPEFULLY HAPPEN
THIS MORNING SOMETIME.

HIS HEADACHE RETURNED LAST
NIGHT AS WELL AS VOMITING AGAIN.
HIS BACK IS STILL QUITE SORE FROM
THE LUMBAR PUNCTURE.

TODAY HIS RT SIDE OF HIS ABDOMEN
WILL FEEL LIKE HE GOT KICKED BY A
HORSE, TOO, AFTER THE LIVER BIOPSY!

HE'S A TUFF SOLDIER, THOUGH AND
WILL TRIUMPH.

HIS MOM ON THE OTHER HAND, IS
A NERVOUS WRECK! VIOLENTLY
SEARCHING FOR CHOCOLATE AND
DIETCOKE TO SOOTHE THE ........
CANT THINK OF A GOOD ENOUGH
DESCRIPTION FOR THIS PREDICAMENT!

THANKS FOR LISTENING----NETTI

JUST A LITTLE NOTE OF HUMOR--

DELIVERED IN TODAYS MAIL WAS

A BILL FROM PCMC FOR MARKYS

DEC/JAN STAY. JUST FOR THE

ROOM AND BOARD CHARGES, NOT

INCLUDED DOC FEES AND SURGERY

FEES.....

$223,000

TUESDAY IN MARKYSROOM ! 1345 PM

MARKY JUST RETURNED FROM HIS

MRI. HE WAS SEDATED FOR THE

PROCEDURE WHICH TOOK ABOUT

90 MINUTES.

THEY IMAGED THE ENTIRE SPINE

PLUS HIS BRAIN. HE DID GREAT

AND IS NOW SNOOZING IN HIS ROOM.

THE DOC JUST CAME AND GAVE AN

INITIAL REPORT THAT IT LOOKS

"GOOD" AND NO OBVIOUS WEIRD

STUFF LURKING AROUND.

THE OFFICIAL REPORT WILL SURFACE

LATER ON. HE IS SCHEDULED FOR A

LIVER BIOPSY TOMORROW AM.

WHEN THE RESULTS COME BACK FROM

THAT, ANOTHER POW-WOW BETWEEN

THE "EXPERTS" WILL CONVENE AND I

IMAGINE AGAIN, THEY WILL EMERGE

WITH THE SAME SCRIPTED REPLY...

"WE'RE NOT SURE" ! ! !

MEANTIME, MARKYS SPIRITS ARE HIGH,

AS LONG AS HIS X-BOX IS NEAR BY!

LOVE TO YOU, LYNETTE

TODAY THE WARRIOR RETURNS
TO THE BATTLE FIELD--

BRAVELY, OUR LITTLE MARKY
FACES ANOTHER TOUR OF DUTY
AT PCMC.

WITH CHIN HELD HIGH, HE WENT
INTO THE O.R. FOR HIS LUMBAR
PUNCTURE. SO BRAVE! NOT A TEAR
SHED...BY HIM, THAT IS.

EARLY RESULTS SAY THE SPINAL FLUID
DOESNT APPEAR TO HAVE INFECTION IN
IT. THE DOCS WILL TRY TO RULE OUT
ENCROACHMENT ON HIS SPINAL CANAL DUE
TO THE SPINDLE CELL FIBROTIC
WHATEVERTHEHECKITIS .!

AS USUAL, ANOTHER TEST OF FAITH IS
UNDERWAY! THE ROOM FULL OF BEAN
BAGS WILL HAVE TO WAIT FOR THE PRINCE
OF PRIMARY TO RETURN HOME ONCE AGAIN!

AGAIN, WE LOOK UPWARD FOR ANSWERS AND
STRENGTH......... LOVE, lynette

Update as of 5:25 PM:

Mark had a CT with contrast of the cranium and the consensus there is some indication of small "arachnoid cysts" which can present incidental to fibrosis issues and with some link to the other fibrotic maladies Mark has been treated for but it is premature to make any definitive diagnosis.

What has promoted this latest hospitalization was the onset of "crazy brain" as Mark described it, similar to the sensations he had recently in the hospital that seemed to be caused by combination drug reactions to the anti-nausea meds.

Tomorrow Mark will have a Spinal MRI and Thursday he will have a liver biopsy as his enzyme counts are elevated. This may have contributed to several vomiting episodes Mark had yesterday.

Again it is hard to say but at this time it is expected that Mark will be hospitalized for a week if he can be stabilized.

Please keep praying for Mark and his family.

Mark is resting comfortably in his new room after being moved back to the surgical wing. RM #3082 which is exactly next to his last room.

James will take the night shift and aunt Lori will take up the supplies for James' luxury stay. Sam is with Jen Larsen until Lynette gets home tonight.

Ken

As of 3:15 PM Mark has had his spinal tap and the MRI will be held off until tomorrow. They have initially said the fluid is clear and doesn't appear infected but they feel he has some fibrosis and neuron issues that cause some tremor presentations.

It is too early to say much of anything . As it stands, Mark will be moved to the 3rd floor where he will spend the night and start the MRI process tomorrow.

Ken

Mark woke up today with jitters in his head (like his jumpy legs, but now in his head) and throwing up a lot. They took him to the ER and he has been admitted for some more tests. They already had an MRI scheduled today as follow up from their meeting with the docs last Thursday. Today they are planning to do a spinal tap and whatever other tests they need to determine if the spindle cell growth is spreading. Keep this boy in your prayers, the ride ain't over yet!

-Jana (Mark's neighbor)

What a sweeeeeet boy!
This pic was taken LAST year
as we posed 4 our christmas
pictures.

Sat. Nite from Markysmom--

Marky continues to hang in! He ventured out to get a haircut
today at 9 to 9 barbershop with James and his bud, Jonah.

He's been pretty nauseaous the last two days, so today we tried
to limit the amount of Gluten free Spaghetti he's been eating,
Since he's been pretty much eating it 2-3 times a day !

So far, its seemed to help.

His Uncle Alan (the helicopter pilot from the auction) and Aunt Dianne
came for Dinner last night and ate a Gluten free dinner w/ us and watched
the "Buddy Run" DVD from the school ! That was great!

Today Cathy Wallace and her Dear mother, Carol, came all the way from
Cedar City to see the Modern Day Miracle Marky ! We talked them into
watching the "Buddy Run" DVD too! ! It's our top-o-the list Blockbuster
favorite!

Getting ready to hook up the little prince to his TPN feeding.

Love to all, Lynette

Hey, I dont know about you guys, but...

I'm going thru withdrawals not being able
to check the Auction every 5 minutes!

Netti

The most BEAUTIFUL STONES
have been tossed by the wind
and washed by the water and
polished to brilliance by lif'e's
STRONGEST STORMS.

...a thought from a dear friend,
Linda Nelson and her family.

Thank you so much !

Saturday at Markyshouse!

THANKS TO ALL OF YOU FOR YOUR
GENEROUS BIDDING ON THE AUCTION
BLOCK!!!!

AGAIN WE ARE OVERWHELMED AT
YOUR KINDESS AND GENEROSITY FOR
OUR LITTLE MIRACLE MARKY!

BRYANNE FIDLER SPENT TONS OF TIME
AND EFFORT GETTING IT ALL GOING AND
KEEPING IT GOING! NOW SHE TACKLES THE
TASK OF MAKING SURE ITS ALL DISTRIBUTED
AND COLLECTED ! ! SHE'S AMAZING ! THANKS
BRYANNE!

MY FRIEND VICKIE REMINDED ME TODAY ABOUT
THE "SNOW FLAKE" STORY.....A SINGLE SNOWFLAKE
ALONE ....BUT PUT A BUNCH OF THEM TOGETHER AND
YOU GET.......

WELL, I WOULD CALL ALL OF THIS GENEROSITY AND
KINDNESS A......DOWNRIGHT AVALANCHE !!!

WE LOVE EACH OF YOU AND PRAY WITH GRATITUDE FOR
EACH OF YOU IN OUR LIVES!................LYNETTE

TODAY'S THE LAST DAY OF THE AUCTION YOU GUYS !!!

Thursday nite after Marks Doctor visits----

After 5 hours at Primary's seeing 3 different Docs and getting more

blood taken------ WE CAME HOME !

THAT'S THE IMPORTANT THING ! !

The rest of the story is... Mark can back off his TPN (IV feeding)

down to 14hrs. instead of 18 hrs. The GI docs are collaborating with the

Rheumatology Doc's about future drug therapies. ie, how much longer to

stay on the steroids, whether to start up the Methatrexate again (chemo)

and whether to throw some other meds in the cocktail.

All of these meds have their side-effects that need to be closely monitored.

Seems like these Docs are very concerned about a long term plan and liver

damage seems to be one of the biggest deals.

While the Rheumatology Doc examined him, she noticed some kind of

weird reaction when checking his reflexes. She termed it "Clonus".

She double checked him, and then went and got the Neurology Docs to come look at him!

Short version is: they want Marky to get an MRI of his spinal column.

The worry is that some of the Sclerosing, inflammatory, spindle cells

have creeped into his spinal canal ! ! ! !

I anticipate the usual verdict----"We're not sure" !

But this will give us all something new to worry about, since we've had

such a great week ! A WHOLE WEEK OF GOOD STUFF is way above

and beyond our usual routine around the Jeanes household.

This WAS an unbelievably fantastic week. All of us sleeping under the

same roof! And HAVING a roof to sleep under.... Who could dare ask

for more and receive it !

We face each day as if it were a gift, dont we?, I Know I do.

Thanks today to our dear friend Beth Dansie for staying w/ Marky

while Marksmom worked the morning and James went to school !

She didnt even feed him chicken stir-fry ! She is a gift, along with her

family !

Love to everyone......Lynette

HEY EVERYBODY ! MARKY'S IN THE SL TRIBUNE NEWSPAPER TODAY!!!!

The article's in the "closeup" section E, in the South Valley edition!

complete with pictures and everything!

Go on-line and check it out. Make sure you click on the South Valley edition. And then click on the picture to enlarge it, then you can cycle

thru the pictures of the little warrior!

Hoowah Marky!!!

Wednesdays w/ Marky,

Today Marky was entertained by Aunt Diane, aka "Duke" while marksmom worked. Or, more likely, Duke was entertained by Marky!

BUT THE MOST EXCITING NEWS OF THE DAY WAS . . . . Duke used
her handy dandy portable ultrasound machine to look around in
Marky's belly for leftover .. .weird stuff, like Ascites (fluid floating
around his organs) or dilated kidneys etc. AND THERE WAS NO
ASCITES TO BE FOUND!!!! NO DILATED KIDNEYS EITHER!! NOT
EVEN A HINT OF ANYTHING WEIRD!!!! ! ! ! ! !

An ABSOLUTE miracle! Just 3.5 wks ago, Marky was STILL suffering,
untreated, unable to barely walk, massive ascites, constant vomiting!

AN INDISPUTABLE MODERN DAY MIRACLE!

Now we hope and pray that whatever this unknown disease is, stays in
"remission". And pray that someone, someday will figure out just what
he does have!

Marky visits his old stomping ground at Primary's tomorrow for a check
up with the Doc's. Will report on that afterwards.

Nitey Nite---Markysmom

Today's tribune features an

article about the Buddy Run

last week at Willow Springs

School and it has some great

coverage...Check it out.

Now a new chapter for treatment.

Mark is happy and adjusting to

carrying a back-pack with his

medicine aboard.

Please help if you can by bidding

on the auction by clicking on

the highlighted link, "Money for Marky"

Time is running out on the auction.

Tuesday at Markys house! !

Marky wants everyone to know. . He really likes gluten free spaghetti!!

He has eaten the delicious non-glutenous dish 3 times in the last 24 hrs!

Marky spent today with Aunt Lori while his Mom worked all day! Good thing Aunt Lori's DNA matches 99.9% to Marksmom!

Marky continues to feel GREAT! He has not had any Nausea Medications since coming home last friday! Mostly because its all liquid and tastes "Yucky" anyway!

His sweet 2nd grade teacher, Mrs Lisa Hodson, who also donated 2 of his 5 love-sacs!, made a house call to home school him today! Gotta get him caught up! Thank you Lisa!!!!

She brought with her a donation from a Willow Springs Elem. student that was on vacation last week and missed the "Buddy Run"! This student wanted to make SURE that Marky got their money!

What a testament to the integrity and comittment of these sweet "Buddy's".

Marky is doing great on his IV Feedings. With the way he's chowing down, maybe we won't need the "liquid gold" much longer $!$!$!

Still reeling from the unbelievable support from all of you! Thanks for your donations and especially your love and caring for this precious child!

Gratefully, Marksmom

Monday Evening w/ Marky----AT HOME!

Tonight, Marky had gluten free spaghetti! ! !

Sammy seemed equally interested, so a heaping scoop was
offered to him and he woofed it down and asked for more!

Marky also MAY have also had a corn shelled Taco from Del Taco,
we cant confirm or deny that because Dr. Dan Stampfl didnt seem
the least bit impressed by that....and he was down right insistant
that we not try that again! Apparently the sodium content in that
highly nutritious fast food may or may not raise Markys already
rising blood pressure! ! ! Soooorrrrry....Didnt thinka that!

At least he didnt throw up any of the afore mentioned forbidden
"No No's" !

Aunt Lori took Marky shopping to spend his $100 bucks today!
He had the "Ben Franklin" in a tight grasp as we browsed the rows
full of opportunity!

He purchased the entire aisle of military weaponry at Toys- Fer- Us!
Thank you---again to Lori's kind neighbors for that experience.

Thanks Also, for all the Bidding wars going on in Marky's Auction!
You guys better check it out....More stuff goes up all the time! Have fun!

Love, Netti

More about Monday,...

Did you guys know that the Diagnosis of Idiopathic Sclerosing Mesenteritis isnt even HIS DIAGNOSIS?!?!? It's just the closest thing to what he has. But his lab work still doesnt match the diagnosis of ISM.

I asked the Docs that very question the day we left the hosp!!!

In other words he is still a mystery! The docs, as you know a few weeks ago, decided to try the Steroids and Chemo stuff to see if it would help, and it did...for now.

So we wait and see!

He goes to his pediatrician today for an over-all assesment. Then Thursday afternoon he goes back up to Primary's to see the two teams that finally claimed him.....The GI team, and the Rheumatology team.

Monday morning from MarksHOME!

Did you guys look carefully at the photo straight under this note?

Brock Dansie (our special-special needs friend) is, of course, oversee-ing the event,
Mark is, of course, going straight for Sammy (our special-special needs son), and one of the princesses of Stonepark circle (Alivia Larsen) is gathering them all
together!

Beautiful and touching. Thanks Ken Crocheron for capturing the moment.

Marky has spent the majority of his first days home moving from Bean bag to bean bag. Nesting on each one! I think he feels like I would if I were in a sea of chocolate with a dietcoke in my hand!

The PIC line infusions of TPN (total parenteral nutrition) are going well. The home health Nurse, Shonelle, came last night and drew some blood to check on all of his chemistry's.

James took him for a drive yesterday and they walked a little bit thru Wal-Mart. One of Lori's neighbors gave Mark $100 to spend any way he wanted to, when he got outa the hosp.! So he is window shopping for ideas!

He deserves a GAZILLION bucks to spend for what he endured for 56 days! I think, to him, $100 is equal to a gazillion!

Go Marky! Love Netti