Saturday, January 30, 2010



Where Love Is


5 Good reasons to come home

MARKY IS HOOOOOMMMMMMME ! ! ! !

Who woulda thought!

Marky made a Hero's entrance into the neighborhood yesterday, Friday January 30th! Fifty six days in PCMC!

The streets of stonebridge were filled with fans of all ages as they heralded the
return of the King of Primary's!

Markys fans had prepped the streets with 6 dozen yellow balloons, and a hundred yellow ribbons tied on everything vertical, marking the path to
the hero's home!

There were approximately hundreds or thousands (approximately) of friends and well wishers waving and cheering as they followed his chariot to the home!

Several giant banners were hoisted to pay homage to the King of Kourage!
Cookies and soda pop were shared with all the kind fans as Marky then made
his way through the huge crowd and into his SEA OF BEAN BAGS!!! (As promised)!

So far, 5 "Love Sac's", (aka bean bag chairs) have been generously donated to grant Marky's wish of "No furniture, just bean bags" in his family room! Its every kids dream room now!

Also, as promised, the fridge was stuffed with creme soda. There were still creme soda delivery's coming in as late as 10 ocl pm last night!

The prince of primary's has had a permanent smile on his face since he made his grand entrance! ANNNNDDDD HE HASNT THROWN UP since we came home, either!!!!!! Another miracle!

The Home health nurse came and helped us hook up his IV feeding to his PIC line. Suzanne Peterson, our dear friend and gluten free consultant and pediatric nurse AND MOTHER OF ASHLEY PETERSON--leukemia survivor, came just at the right time to assist in the process!

Marky slept all night without incident and has woken today in fine spirits!

Thanks to EVERYONE for your support and love to our dear miracle child.

WE LOVE YOU GUYS! Lynette, et al.

Friday, January 29, 2010


Marky...........You Did it


I'm outa Here







4 Good reasons to come home

This is a very busy and exciting day for the family and friends of Mark Jeanes. It was just 2 1/2 weeks ago that one of the close friends who had not seen Mark for a couple weeks remarked upon seeing his swollen body and emaciated arms and legs, " How much longer do you think he has....." The answer to that of course is, "the rest of his life, " just like the rest of us. Thank goodness he can start a new chapter at home.


Thanks so much for the support, both spiritual and financial that so many provide. That will be needed even more moving forward as his continuing treatments when added to the accumulated hospital expenses, are huge. So for those who can, please check out the auction site at the blog and remember the Mark Jeanes Charitable Donations account @ America First Credit Union. For those who can help with the future sitting needs with Mark at home, let me thank you in advance.

No by way of reminder, Mark will be on a very restricted diet that must be gluten-free and low fat. His nutrition needs are going to be very closely watched so as not to cause any digression so please keep that in mind if you have the chance to be with and serve Mark.


We'll see you at home sometime today!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Ken

Today's approximated schedule of events..
...For inquiring minds who want to know!

Early Fri. AM: Blood draw to check 4 any
surprises.
Fri. late morn: Lab results and possible
last minute steroid/chemo
bolus infusions.
Fri. mid day: parental education on how to
maintain a PIC line how to give
shots, all that stuff....
Fri early PM: waiting...tapping our foot...
..for discharge clearance.
Fri misc. : Haul 2months worth of fabulous
get well posters, cards, christmas
tree, colored lights, artwork, pictures
to the car/moving van!
Fri afternoon: LOAD UP THE MAN O' THE YEAR and
BRING HIM HOME!

FRIDAY=......=

=the winning lottery ticket!
=Christmas Day!
=Your birthday ( if you're under 40)!
=Pay day!
=winning the super-bowl!
=making your final car payment!
=being ABLE to make A house payment!
=Bringin Baby Scott Cole home from the Hosp!

=Bringin Sam Jeanes home from PCMC each time!
=Gettin answers to prayers (timely, that is)!
===AND....

FRIDAY EQUALS..MARK IS COMING HOME !!!


Thursday, January 28, 2010

hay every buddy i'm out of here .....mark

Thursday morning with Marky


Markys been up since 0515 chattering about going home!!!
He says........
"Today's like Christmas Eve !"

"I wonder if the people on the bottom of the world know
I'm coming home? " (referring to the Metekingi family
that live in New Zealand, and the Hunter family that
live in Australia!)

"Did you keep your promise to fill the entire fridge with
creme soda when I come home?"

"I can't wait to be able to play with my friends again!"

"I can't wait to play with TWO controllers on my x-box!"

"Did you fill the family room with BEAN BAGS yet?"

He's a gift! .............love to all, Lynette

Wednesday, January 27, 2010

Wednesday nite from Markysroom ! ! !


I'm afraid to speak it out loud.....but...I heard it with my
own ears up here in Marks room tonite--------He MAY be
coming home Friday!!!!

Who wouldve thought!!! Just 4 wks ago as he came out of
surgery and our hopes were lower than the deepest depths!

Now Mark walks the halls of the 3rd floor without assistance.
No NG tube...No walker...just an IV pole with a few lines going
to his PIC line!!!

He has a sort of "celebrity" status here at Primary's. When he
cruises the halls, all the staff comes out to greet him and
cheer him on. When he's lying in his bed, his previous nurses
and doctor's come by to say Hi and check on his status! Every-
one wants to see the Marky Miracle!!

God DOES work in mysterious ways. I wouldnt have wished this
crazy-ness on myself or anyone else....but I'll tell you, I wouldnt trade the witness of these amazing events that have taken place for all
the chocolate and diet coke in the world !

So, if Marky really is coming home, I have to scramble to make
good on all the empty promises I made to him while he layed listless
in his sick bed! I didnt think he'd remember any of it since he was
so looped on all those good meds!! But he's got a memory like a steel
trap!!! ----Note to self--- .........!

So thank you, EVERYONE for getting us to this point!! For CARRYING
us to this point! Our gratitude is beyond expression!!!!

Love, Marksmom







Aunt Lori just checked in from her night watch over Marky:

The doctors just have been in to see the miracle boy-Marky and decided to take him off the surgery schedule for tomorrow. He was to have a J-tube inserted into his stomach which would allow feeding directly into his intestines, bypassing the stomach itself.

They will continue to watch him try to keep food down...NO MORE STIR FRY, you guys!!! maybe mashed potatoes, ya think!

So for now, we keep witnessing the miracle of prayer and hope and watch this little angel triumphantly win his battle !!!!!

Oh and by the way, Marky asked Lori is she'd get on the auction and bid on "That Helicopter" !!! .....Just thot i'd give you a heads up..Uncle Lyle ! !

Oh, Yeah,. . .

Don't just check out the stuff up for auction..

You gotta BID too!!!!!!

Did you see the cute booties, the beautiful quilt, the yummy rolls,
the HELICOPTER ride, the facial/massage, the personal trainer, the
tumbling sessions, the photo shoot deal, the pepper mill, the geneology
data entry, the dental exam, the granato's treat basket ???etc etc etc???

You know you want it...just get it ! ! !
......Nettie

Hey you guys ! !

Are you checking out all the cool stuff on
the On-line Auction for Marky!!!

Just Do It !

Marky is working on something to auction off..
...no it's not his old crusty N/G tube...! ! !

Nettie

Tuesday, January 26, 2010

Tuesday from Markysmom!!

Mark is spending the day with various "Fans" keeping a
watchful eye on him.

Mark's brothers, Sam and Scott, are home ill with sore throats, along with both Mom and Dad!

As a result, Aunt Lori is guarding Marks door with an Iron fist and not
allowing any of us near.

Beth Dansie, Jenni Larsen, Angela Cooley and Allen Cottle are
being entertained by Marky during their various shifts! I told Mark to be nice to them....we'll see how they all do!

Lori has been taking the "night shift" graciously. What a gift she is!

With all the stress of having a child hospitalized and lack of rest, seems like we are catching all the "bugs" that circle.

Thanks to everyone for helping out! Love Netti


Be sure to check out the items in the auction siteAdd Image

Monday, January 25, 2010

Monday Night from Markysmom

Today over 850 children paid tribute to young Mark Jeanes.

They each chose a "Buddy" to tie-up with. Then with enthusiasm that only children
can exude, they helped each other parade the halls of Willow Springs Elementary
School. They were led by Mrs. Lisa Hodson (Mark's teacher) and her 2nd grade
class. As they passed each doorway, the next class joined in the procession until
all classes and grades were in cadence!!

What a sight! Bystanders, including parents and younger siblings and the News
media were amazed at the energy and determination from these valiant crusaders!
They chanted slogans like "Go Mark Go !" and ..."Lets go Mark Jeanes lets go !! They
clapped their hands in rhythm and did the "wave" up and down the hallways !!

I am still overcome with emotion as I write this account. For an entire community
to come together for a small child in his time of need IS a miracle that I hope each of
you recognize.

There is so much good in EACH of you. Mrs. Hodson called me tonight after counting the
donations and said there was close to 4,000 dollars! And quite a bit of it was in small bills
and LOTS of coins that likely came straight from piggy-banks!

One of the school secretaries said she overheard a child coming to the office to call his/her
mom to tell her to " bring his/her "Christmas money" to the school...and Hurry up, the run is gonna start"! ! !

These precious children are our hope for the future. I know you'll agree that this display
of charity and team-work demonstrates that our future is in worthy hands! Also, We cannot
forget the Teachers, principals, parents and leaders who mentor these young souls to
"do good unto others" !

To all of you, I send my warmest wishes of love and gratitude. I wish the choicest of
blessings on all who have contributed at this event and the on-line auction going on
now, and the many anonymous donations at America first! ThankyouThankyouThankyou!




What a tremendous collection of true buddies today at Willow Springs Elementary School in Draper where headed by Mrs Hodsons' class and followed by the entire student body and teachers, there was the most impressive 3 legged race parade with wonderful students raising there voices for Mark. "GO MARK JEANES"


Incredible charity was witnessed as so much needed money was raised to help one of their own. I will let Mark's mother Lynette, speak more to this incredible event which was covered on the 4 News broadcast this evening.

Don't forget Mark's Buddy Run today at 2:15 at Willow Springs Elementary! Pledges can be made online or at any America First Credit Union. See you there!!

Also, the online auction has begun! Visit http://moneyformarky.blogspot.com/ to check out the neat items people have donated and start bidding. New items will be posted everyday, so check back daily!

(If you would like to donate to the auction, there is still time. Send an email with your donation to bryannefidler@gmail.com) Also, don't forget to tell all of your email, facebook and myspace friends about the auction.

Sunday, January 24, 2010

Mark and Scott and Ken went for an extended stroll and Mark got rid of his walker! He took his Army Ranger Paratrooper to the 4th floor atrium where Mark dropped the trooper over the rail down to the 3rd floor. Scott was the designated retriever and there were 4 completed strategic jumps.


From there we walked to the far end of the 4th floor and basked in the south atrium sun then returned to the 3rd floor and back to the room. We are preparing for Mark's 3rd walk. He thinks this is pretty cool/ I say, "Well Yaaauh!"

Mark has had yogurt and Miralax mixed drinks and has tolerated the fine cuisine well.

Bishop and Suzanne Dahl just visited and true to form, Bishop Dahl rolled out his aviation jokes. Mark gave his usual courtesy laugh. (I know something about those laughs.)

I will sign of now and hope to see you at the Marky Buddy Run.

Ken

Saturday, January 23, 2010



Marky gets YET another special visitor !!!!


He's got the FORCE allright!!!


BREAKING NEWS !!!!!


MARKY JUST GOT HIS N/G TUBE OUT ! ! ! !

HE' NOW GOT HIS NOSE AND THROAT
AND STOMACH ALL TO HIMSELF !!!

HOORAY HOORAY HOORAY HOORAY !

Flash: Mark is going to get his Tube pulled !!!!!!!!!!!!!!!!!!!! He is debating if he wants to do it himself? Anyway Mark is having a good day and we are going to try real food.


(Not) Dr Crocheron

We are lining up on the target! Dr Inman of the GI team had sent slides to associates in Perth, West Australia by the name of Kevin Murray and Dr Vijay Viswanathan from the dept of Pediatric Rheumatology at Princes Margaret Hospital.


They have said that they had seen and treated this disease before. They specifically site a case of a 6 1/2 year old who presented with very similar symptoms and challenging diagnosis over a protracted period of time. They did come to conclude that this, a very rare disease, has a clinical name, "Idiopathic sclerosing Mesenteritis" or ISM for the rest of us. This is an autoimmune disease and there seems to be only a few documented cases dating back to 1924. In fact there are 17 definitive cases diagnosed and if confirmed, Mark will be the 18th among pediatric subjects.

The treatment protocol for the child sited in the case involved the use of steroids, autoimmune counteractives and Methotrexate which is just what they have been doing at PCMC with evident success.

Mark's girth is near normal and his attitude is the most joyful since he came here on Dec 8. He is better this morning than he has been and has had 2 great walks and is joking and mugging for pictures like the clown we all know and love.

The long term success in adult cases has been very good. The long term prognostication in pediatrics is more difficult as there is more time for recurring disease and complications and little or no case history to refer to. Just as with childhood diabetes complications can arise over the years. Therefore the future is likely to include periodic maintenance treatments using the Methotrexate and steroid protocols as required, over the long term. That said, the road to recovery looks brighter with fewer potholes than 7th East in Sandy and better than bollis food and snot straws so freely (?) provided at the great and spacious building in the shadows of the everlasting hills.

Now Dr Crocheron though idiopathic in nature, is less than qualified to make a firm diagnosis as all of you will agree. So the above information doesn't necessarily reflect the opinions of this station or it's management.

Interestingly enough there is only one mention of ascietes in any of the case pathologies and there are some differences manifest in all the cases but similarities are substantial. We are hopeful that this information so long awaited, will prove valuable for those caring for Mark

(Not) Dr Crocheron

Thursday, January 21, 2010

Thursday night from Markysroom--


Today Marky had a great day! His N/G tube was disconnected from the wall suction canister and now is draining via gravity into a "diaper" (shhh..don't say the "diaper" word so loud) that is tied around the end of the tube to catch any crud coming out.

So far, not too much has drained...which is good. The next step will be to just clamp the tube and see how his nausea goes...then its GOODBYE TUBE!!!! So keep your fingers crossed!!!

Marky would like his nose and throat back all to himself! No more sharing space with that dumb tube!!

He got a giant dose of steroids today and seemed to tolerate it well.

Additionally, He got a visit from Bishop Rupp and seemed to tolerate that well, too! (teasing!!!! OKAY!!!)

Marky's dad has been on duty for almost 2 days straight and has gone home for a much needed night's sleep. Aunt Lori will guard the Prince of Primary again tonite.

One of the Doc's got a reply from a consult request about Marky that
was sent out. Some Dr. out there thinks they have seen this condition
before and has some ideas. ! We should hear on this tomorrow and will
shout from the roof tops if they have figured him out!!!!

Until then, I believe all of our prayers ARE being heard and answered.. in so MANY ways. Thank you, everyone!! And love to all.



Wednesday, January 20, 2010

It is High Noon in the room of the patient and the update for today so far is that they are trying to ween Mark from the narcotic drug pain killers using instead, methadone. Mark's tube output is diminished which is good and the docs have decided that tomorrow they will try eliminating the suction and simply try gravity to drain the tube relying instead on Mark's digestive system to do some of the work.


Mark needs more and more walking so we will work on that. He also will have his Aunt Lori here soon to help in the process as it takes a village to raise a Marky!

Mark thinks my jokes sent to him on his new cell phone are for the most part, sort of stupid and I count that high praise and somewhat of a validation of my intellectual acumen.

Friday wiil be the second dose of methotrexate which when done through the vein didn't set too well so, this time it will be an injection. These are the weekly protocols that are part of the broad-spectrum treatments.

Last night a sweet group of Laurels from the Draper C resent 22nd ward came to visit and bring blankets. Mark and Lynette greeted them and gave a short tour with Lord Mark in his chariot. He was very happy to have met them. Thanks so much for your kindness.

That's it for now;

Ken Crocheron

Tuesday, January 19, 2010


Tonite Marky craved Creme Soda!!!

So Aunt Lori made a STAT trip up to
the hospital with the special order!!

He had 2 or 3 drops of the delicious
elixir on his tongue...and...oh boy!!!

Mom gives Marky

a bloody nose!!!

This was the
scene yesterday
as we were playing
catch with a
bouncy ball and
Mom threw a wild
toss!!!!
SOOORRRRYYYYY

Tuesday Night from Markysroom!!!!


Another day on the battlefield!

Marky looks good and feels pretty good!

Yesterday's MRI showed that his small intestines are "matted" together and stuck to the peritoneum; As compared to his prior study which showed the intestines were more "free floating" in his ascites (fluid).

Not sure what the significance of the "matted" effect is....but it doesnt sound good to me!!! Or if that can be fixed ???? OR if the doc's know, even!?!?!

MRI also shows that his kidney and ureter are dilated. It is not known if they were dilated on the prior MRI due to overlying barium in his colon from a CT scan!!!!

He continues to mystify the experts. This condition will surely and deservedly be named after little Marky!!!!!! I will INSIST on that, you can count on it!

Mark spent the day with his big brother, Scott, aka, "Bubba", which always lifts his spirits. They got laughing so hard at times that " saliva was flying everywhere!"..(Markys words)!

Thanks to all of you for continued interest and support. We couldnt get thru this without EACH of you!!!

Love.....Markysmom

Monday, January 18, 2010

Monday night in Markys room!


Tonite Marky is resting after an MRI he had on his abdomen!
He had to stay in the scanner for one hour!!! UN_SEDATED!
He is amazing! I dont know very many ADULTS who can stand
to lay in one of those scanners w/o sedation let alone a 7 y/old!!

He continues to amaze us all, and stand a a great example to anyone
in need of a positive role model!!!! He is a Hero, a valiant warrior,
strength beyond his years! He never flinches when they come at him
with needles or tubes or....anything!

He just offers up his courage and determination and rises above
it all!



............Marky's 49th Day

We are holding an online auction to help raise funds for the Jeanes family!

The online auction will be posted on Marky's blog, http://www.prayformarky.blogspot.com/, and will run Jan 25-Feb 3. The auction will start next Monday, January 25 and new items will be posted for auction every day for 5 days. So check back daily! Then bidding will continue until Feb 3rd.

To donate an item or items to Marky's auction, please email (bryannefidler@gmail.com) and include contact information, a description and picture if possible. (Be specific and give the value). Use the who, what, when, where, why when writing about your good/service.

Let's get creative! Photography, hairstyling, greeting cards, graphics design, toys, hair bows... any goods or service would be greatly appreciated!

Again, the online auction will be posted on Marky's blog, http://www.prayformarky.blogspot.com/, and will run Jan 25-Feb 3. There will be a separate post for each auction item and bids will be accepted in the form of comments on each respective post. Bidding will end on Wednesday, Feb 3rd, at midnight. Winning bidders will send payment via PayPal or check. Once payment is received we will contact the auction item owner and provide shipping/contact information.

With your help, we can raise a significant amount for the Jeanes family. Please join us and donate to Marky's online auction with your time or talents.



_____________________________________

Donation example

Ex.1 - A&D Helicopter is offering a 45-minute helicopter tour for 2 people in the Salt Lake City, UT area. Offer expires 12/10. Est. retail value $350.

Ex.2 - Bryanne Fidler, I would like to donate three set of girls hair bows. Est value $12. A picture of the bows is below.

Saturday, January 16, 2010

Marky's back "in-country" from Xray.


They said his lungs are a little better. He's been for a second walk today, and is still awake!!!!----since 0200 this morning!!!!

He will have to get shots in his abdomen for the anti-coagulants!!! Two shots in his belly a day! As if his tummy wasn't sore and tender enough already.

What a trooper he is. Always not JUST enduring...but enduring WELL!




Marky and his buddy Jonah are on patrol today!


Saturday morning in Markysroom--


Marky managed to emerge triumphant thru another night on the battle field at PCMC!

He led a "recon" mission thru the halls around 0500 this morning and reports all is well on the 3rd floor! He kept watch thru the night, as he refused to sleep since 0230 !!!!

He will go "out of country" down to X-ray for another chest xray to see how his pleural effusion is doing (fluid around his lungs).

He will start some anti-coagulants for risk of blood clots due to something showing up too high on his labs.

Friday, January 15, 2010




These may be some of the technics

Marky is planning to get outa here...
cant confirm or deny it.

Some fun things about today----


Markys big brother Scotty got to hang out with him most of the day!

Marky's friends the Warburton's ( from our neighborhood) brought him a cell phone to use while he is stuck in bed!!! He thinks he's pretty awesome....which he is! You can text him antime--801-910-8677!
(Thanks Steve and Carrie-spelled wrong i bet, sorry Kari!)

Marky got a package in the mail from His Aunt Barbie with some cool books to read and one is a paper airplane how-to. Scott has constructed several prize winning flyers to entertain Marky already.

Marky got another package from his Aunt Sheila with some other cool pop-up books that are awesome too!

Marky got a letter sent to him here at the HOSPITAL from Cathy Wallace with a parachute in it!

He got another letter sent here at the HOSPITAL from His Kindergarten teacher Mrs. Labrum to wish him well!!

A flyer went out yesterday at his school to announce the Mark Jeanes Buddy run on Jan 25th!!! KSL may be able to cover the event if we can convince them!

His room # is 3083. So the Staff can track him down if stuff gets sent to him here. He loves that.

Tons of you guys have sent or brought or donated or called or prayed or thought of...so many things and so many people are rallying! We are AMAZED at the outpouring!

The Lord hears us! He must! He has blessed Mark in so many tender ways!! We are grateful for EACH of you in our lives and pray for YOUR
well being.

Love to all.....Mark and Markysfamily

Friday afternoon--


Test results came back...No blood clots in his lungs!!

Quite a bit of fluid though. Doc said it probably moved up there while he was laying so flat after his angiogram for 4 hrs! He had stay totally horizontal so as not to re-open the puncture site where they inserted the catheter in his femoral artery.

He will start Methotrexate tonight---which is a chemotherapy type
drug. They are hoping it will help halt the production of all the weird spindle cell growth stuff thats attacking his intestines

He is pretty distressed today with difficulty breathing from all the fluid crowding his lung space.

Friday afternoon from Markysroom--


Markys blood pressure is quite high for the last few days since the start of steroids. Attempts by meds to reduce his pressure havent helped yet. Lastest pressure is 148/110! Heart rate is in the 150's!!!

Mark is about to go for a STAT CT scan of his chest. He as a large pleural effusion . All these combinations of issues have raised the suspicion of a pulmonary embolism. Which means..a blood clot somewhere in his lungs.

This is an emergent situation so the docs are running around like crazy.

I will update when he comes back from CT.