Made it to Thursday !
Things are looking up ! Marky is feeling better !
Sam is back to eating Doritos and Crunchberries !
All is right with the world !
Marky had a Dr.s appointment with his specialist from
PCMC yesterday. They took some blood, looked him over
and declared that he was doing great (as far as they can
tell !) .
James accompanied him to the Dr., while I had to work. The
Doc,(Dr. Pohl) said Marky will have to receive
the Methatrexate (chemo stuff) shots once a week for A YEAR
or TWO !, but the Remicade infusion therapy stuff that he gets every 6-8 wks will taper off, as well as the steroids.
He also said they would schedule another GI scope thingy to
look down into his stomach lining and biopsy to see how the
"crud" looks sometime in the summer !
and.....AUNT LORI HAS SHINGLES !!!WHAT THE.....? ? ?
If you guys have never seen shingles or watched someone suffer with it....well lets just say it's PURE PAIN and TORTURE ! She CANT be sick and afflicted ! She's a key
component in the "keep the Jeanes' going team" !
Shingles is an evil thing that attacks a nerve pathway and
terrorizes everything in proximity to that nerve. It shoots
relentless pain for days. Then errupts into clusters of blister type stuff that kills ! It is a virus remnant of
Chicken pox, that lays dormant in wait for just the right
levels of stress and lack of immunity....and then...IT ATTACKS !
So, she is on the Jeanes' prayer roll. Put her on yours, if you would.
Love Markysmom, Sammysmom, Scottysmom, and Loristwin
Thursday, April 29, 2010
Made it to Thursday !
Posted by Markys mom at 7:09 AM
Tuesday, April 27, 2010
Saturday Marky was invited to ride in a 1952 Army jeep !
Mr. Barry Skinner, of Draper Utah, is a retired Army veteran
and has restored this Jeep to its original condition ! He
graciously took Marky and friend Jonah along with me and
Ken Crocheron on a spectacular drive along the Bonneville
shore line trail !
The giant smile on the boys' faces speaks volumes of their
interpretation of the ride !
Their are no close-up shots of me, ...but if there were, you
would see my luminous smile indicating the joy at watching
the boys (Ken included) having the time of their lives !
Posted by Markys mom at 3:39 PM
Posted by kendude at 2:19 PM
Posted by kendude at 2:17 PM
Posted by kendude at 1:58 PM
Tuesday morning at Markys:
everyone lived thru the night !
Marky's still feeling a little crappy.
Sammy is VERY fussy. He clearly doesnt feel well. STILL has NOT
eaten anything since Friday !
Ive tried tempting him with all his favorites:: doritos, spaghettios,
chicken nuggets,crunch berries !
He doesnt even let popsicles or ice cream or yogurt get within 3 feet of his
mouth ! And dont EVEN try to give him a spoonful of cereal unless it has
at least 3 pieces of the cereal on the spoon AND ample ratios of milk to
cereal in the bowl and on the spoon as it comes into the pie hole !
ONLY water in his cup....ONLY ! If you try to sneak something of flavor in
there, like....oh, juice or milk....he will spew it immediately back into
your face and GLARE at you as if you've tried to poison him !
Sammy never drank a bottle when he was a baby. He was fed thru a feeding
tube (Naso-gastric tube, NG ) since he was a NICU baby so he didnt get the
taste for milk or formula, or the idea of sucking on a bottle .
He just started with a sipper cup . He also attended "snack therapy" when he
was younger at Jordan Valley special needs school ! Kids like Sam ,who had
"aversions" to food , were invited to come and "Play" with food around a table
while the "food therapists" would show them how to try stuff like....chips or crackers dipped in ranch dressing , or whipped cream, or ketchup, ....they'd blow bubbles and try to make eating look fun and exciting and desireable ! !
I thought it was fun and enticing......and I gained 10 pounds learning how
to snack AND have fun while I was doing it !
Sam DID graduate from "snack therapy" with a new-found love for Nacho
flavored Doritos.....NOT Ranch flavored or any other flavor Doritos...it HAS
to be NACHO flavored, or he will stare you down and growl until you get the
proper flavor on his tray....and you better do it post-haste !
A Child with Down's Syndrome is a gift to all who come in contact with him...
a "gift "! Some day's I jokingly would like to "give the GIFT" away ! Only
because......I like to share, of course ! Ha Ha !
Yet, he is an angel in every aspect of the description ! Loving and tender. Generous and affectionate. Unconditional and accepting. He teaches and
reminds us of the REAL importance of our existence here on earth........
.....to Love one another, as He loves us !
I love you guys, make it a great Tuesday !, netti
Posted by Markys mom at 8:11 AM
this is sammy talking....markys transcribing for him:
im back !!!!!!!!
Posted by Markys mom at 8:05 AM
Monday, April 26, 2010
MONDAY EVENING MAYHEM CENTRAL :
SAM JEANES CAME HOME THIS AFTERNOON FROM PRIMARY'S
AFTER BEING JUICED UP WITH THE MAGIC IV SOLUTION.
JAMES DESCRIBED THE OUTING AS EXHAUSTING....FOR HIM !
THEY EXPECTANTLY HAD TO "BURRITO WRAP" SAMMY STRAIGHT
JACKET STYLE TO GET THE IV IN HIS ARM, ALONG WITH ANY
OTHER PROCEDURE THEY INFLICTED ON HIM ! HE IS A STRONG
LITTLE GUY AND REALLY LIKES TO IMPOSE HIS WILL ON ANYONE
TRYING TO IMPOSE THEIR WILL ON HIM !
MARKY IS HOME FEELING LOUSY AND DISCOURAGED ABOUT
BEING SICK AGAIN. THE HEAVY DOSES OF STEROIDS AND OTHER
DRUGS HAVE DONE EXACTLY AS PROMISED......REDUCE HIS IMMUNE
SYSTEM TO PRACTICALLY NON-EXISTENT.
YET, HE CONTINUES TO IMPROVE ON OTHER FRONTS, SO WE ARE
GRATEFUL FOR THE BENEFITS OF THE DRUGS HE'S ON INSPITE
OF THE SIDE-EFFECTS.
WE'LL SEE HOW THE NIGHT GOES.....EVERYONE IN THE JEANES
FAMILY IS SLEEPING UNDER THE SAME ROOF....
AND THAT IS A BLESSING IN ITSELF THAT I WILL COUNT AS HUGE !
LOVE TO ALL OF OUR "BUDDY'S"......NETTI
Posted by Markys mom at 8:09 PM
MAYDAY MAYDAY !
Just reporting in on the latest Jeanes fiasco's !
I took Marky to his pediatrician today with complaints of ear aches
and sore throat !........Diagnosis....STREP----AGAIN !
At the same time, James ran Sammy up "to the mountain",
Primary's because he had been non-stop throwing up since
Friday . He was acting really "floppy" this morning, not holding
his head up, dry heaving and all that fun stuff.
The nurses ran him straight in and started an IV on the poor little
dear.... labs have shown that he is indeed dehydrated . So far, he's
had 3 bags of fluids dripped in and seems to be "fluffing" up nicely.
The experts up at PCMC advised to retain Sammy up there probably
overnite to make sure he stays the course of improvement !
James will stay with him while I stay home w/ Marky !
So, in other words,.....nothing new with us.....how bout you ?
Posted by Markys mom at 1:30 PM
Sunday, April 25, 2010
Sunday Afternoon in Markys world:
So, Friday James went and picked up Marky from school because
he was afraid he might get the "throw-ups" from his classmate...
By 7 pm that very night....SAM STARTED THROWING UP !...
And hasnt stopped since ! 48 hrs of throwing up every hour like
clock work ! Poor Sammy !
So much for Marky avoiding the "throw-ups" ! Fortunately there
are no signs of the infirmity spreading to anyone else in the house....
Our washer and dryer has been going constantly all weekend due to
the fact that Sammy hasnt agreed to aim his "launching's" into a
bucket or bowl ! He insists on thrashing about flailing his arms
when he throws up trying to ....I dont know...get away? or
something? Who knows what he's thinking?
So James and I use towel after towel trying to "corral" the "what-not"
.....not so successfully most of the time !
What am I complaining about ?.....nothing any of you havent ever
dealt with. !
So I had to miss my sweet primary kids today and stay home with
the "Angel's". .....
Life goes on !
Posted by Markys mom at 4:15 PM
Friday, April 23, 2010
Friday in Markysworld--
Just got a call from James..(I'm at work) ...
.....Marky called in a panic......
One of his classmates had just thrown up ! And
Marky was afraid it would happen to him next !
So, James had to go pick him up from school early
so he wouldnt get "The Throw-ups" ! !
Never a dull moment !
Posted by Markys mom at 11:52 AM
Thursday, April 22, 2010
THE MAKE-A-WISH "WISHGRANTERS "HAVE MADE
CONTACT WITH MARKY THE "WISHMAKER" !
Today they brought a fancy chocolate cake..(? gluten free) all decorated with the message that his wish WILL be granted soon ! And that the wheels are turning to get the army jeep, as wished for ! !
As you can imagine The Jeanes People are all a buzz about it ! Especially
sweet Marky !
He's kind of had a lousy week with stomach pain and queezy stuff...
maybe just effects from the meds...who knows ! But it makes me freaked
out with worry !
I was telling someone today at work that I think I have "post traumatic stress dissorder" ! , from all that has happened.
With the unknown, or not so certain diagnosis....and the unknown, or not so certain future....I am living day to day.
It urges me to make every day be the BEST day for all of us!
I kiss my boys ( against their will at times) much much more. . Hug them
tighter..pray for them extra longer....laugh with them extra hard...all that kindof stuff we think we'll do another day !
Marky's Aunt Diane Nielson brought some special Ice-Cream Sandwiches.....GLUTEN FREE ! ! ! that she got somewhere fancy !
I cant wait to bring them home to him and see his face light up ! Thank you Aunt Dukee !
Everybody resolve to live your days as if....... you know the rest !
GO AND DO ! . . . . DONT SIT AND STEW ! ( thats on my friend Amy's wall in her house ) Im sure you guys have heard that before. But we gotta use our energy for positive actions and productive deeds !
I love you all and am grateful for life ! Netti
Posted by Markys mom at 5:53 PM
Wednesday, April 21, 2010
Hi Friends !
Sorry about the blackout ! Our home computer is in the chop shop..
which means James tried to fix it himself and now it REALLY has to
be fixed ! ha ha ! (kidding james)
So, Im back at work today w/ access to the blog ! I was going thru
blog withdrawals !
Marky stayed home from school yesterday....Day after his Methatrexate
(chemo) shot. He said he had a stomach ache....which sends me into a
frenzie of worry as you would expect ! But he felt better last night.
He spent an hour crying last night after I brought home some ice-cream
sandwiches from the store for Scotty.
We've got a house full of Gluten free stuff for Marky, so I figured I'd
try to pay attention to Scotty and buy him his favorite ice-cream sandwiches and sneak em into the freezer before Marky saw them...
Not so lucky....he's got a radar for yummy's ! When he asked me if they were Gluten free and I gave the disappointing nod of "NO"...He ran upstairs and cried saying how much he hated Gluten.. and why did God
have to make Gluten anyway ! poor guy !
I tried to point out the positive of the world in-spite of Gluten. ....
From a 7 yr olds perspective, Gluten is all that matters ! Cause everything that is yummy......comes from Gluten ! I agree !!!
So, happy wednesday and thanks for Listening !
Love you guys, Marksmom
Posted by Markys mom at 8:10 AM
Tuesday, April 13, 2010
Hi to all of Markys Buddy's
It's Tuesday...day after Monday ! (That means we made it thru Monday) !
Yesterday I had my FIRST DAY OFF in almost 9 months that I didnt have
to STUDY FOR MY BOARD EXAMS !
I WENT TO A MOVIE ! ! ! ! ! Almost unheard of for me ! No one was in
the hospital, or Doc's office (although Scotty has strep throat and stayed
home !) . But......We are surviving !
AND.....on this last Sunday....OUR WHOLE FAMILY went to church !
First time since November for Marky !
Of course, We had maybe 5 minutes of sitting together on the same row !
With me up and down playing the Organ,....Sam up and down..playing and
entertaining the world, etc.
Nevertheless, it was a huge feat ! And I'm on cloud Nine !
Fast forward to today....and Marky just called from School with a Sore
throat, so James had to go get him early from school.....
So the "respite" was short lived, but...nevertheless....it WAS respite if
only for 2 days !
We take these seemingly small things and count them as HUGE GIFTS !
Hope you are all doing fantastic, and if you're not so fantastic.....
....find something SMALL... and count it as HUGE ! Thats what I do !
Love you guys.....Lynette
Posted by Markys mom at 1:45 PM
Saturday, April 10, 2010
Good Saturday Morning to all of Markys Buddys !
Marky had a FANTASTIC few days back to school !
Cant believe I'm even reporting those actual words !
It is a miracle ! That's the only way to describe the
whole thing !
NOT a breakthrough in modern medicine, NOT a coincidence,
NOT a weird "virus" that happened to go away.....
A REAL LIFE MIRACLE !
I have flash backs over the last few months with him and recall all the Doc's scratching their heads at his beadside, none of them willing to take any agressive action to treat him without a definitive diagnosis.
You guys remember us all helpless as we watched him get worse and worse...belly filling up with ascites (fluid), his little body withering away to nothing, his cheeks sunken in and gaunt, immense pain and suffering.
Every test imagined...done on him. Every Dr consulted....
No remedy to be found....
THEN,.... all of YOU and your families and friends, congregations, Neighborhood's, Island's of people (ie.New Zealand),Schools full of Buddy's, Grandmas and Grandpas, cousins, little children who could barely talk yet, Dr.s staff's and nurses, many different religions...all began praying and fasting for a small child named Marky.
It was THEN that he started to improve..
I will never deny that I witnessed the power of God and his tender mercy on this little boy... Through all of you !
Would that I could say to EACH of you friends how much gratitude and love is in my heart for you and your efforts to help this son of mine.
I love EACH of you dearly, Lynette
Posted by Markys mom at 10:12 AM
Thursday, April 8, 2010
Posted by kendude at 2:40 PM
Posted by kendude at 2:28 PM
Wednesday, April 7, 2010
HEY EVERYBODY--MARKY WENT TO SCHOOL TODAY !
This is a HUGE day ! Who woulda thought that the little guy
laying in that hospital bed, all hooked up to tubes, fighting for his life just 2 months ago would be skippin off to school today!!
A TRUE MODERN DAY MIRACLE !
As I left the house this morning Marky was just waking up. I peaked
in on him and saw a GIANT SMILE on his face as he announced he was
well enough to go to school !
I, of course, had to work today and missed the grand entrance of the "HERO"'s
return, but James reported that all went great and that a few hours after
Marky got settled in, James got a call from him with a teary voice on the
other end saying......."I miss you guys" !!!
What a sweet boy ! I hadnt figured on that, since he'd been so stir-crazy and
excited to get outa the house to school ! But thinking about it...he's been with
either James or Me or some other "loved one" 24/7 since early December....
"Uncle Ken" Crocheron took lots of pictures of today's event at school, so i
imagine he will figure out how to up-load them soon for us all to see, myself
Posted by Markys mom at 4:11 PM
Monday, April 5, 2010
SO MUCH FOR PLANNING AHEAD !
Marky has a respiratory/sinus infection...started yesterday..
No school for him tomorrow !
He is greatly disappointed ,as you can imagine !
Of course, I AM TERRIFIED, as you can imagine !
Last time he got sick...it was back up to the mountain !
PLUS...I'm scheduled to re-re-take my vascular board exams
this Friday.... last time I tried to take my boards, Marky landed
in the hospital the night before and I had been up all night and took
them under those "fabulous" conditions !
We'll see what the week brings... if it's a re-run of last time....
At least I'll know what I'm in for !
Just another Manic Monday !
Posted by Markys mom at 6:10 PM
Sunday, April 4, 2010
HAPPY EASTER FROM MARKYSWORLD !
Hope you are all finding memorable ways to celebrate Easter !
I cant remember feeling so AWARE of the meaning and spirit of this
I keep reflecting on all the gifts of our Savior and our Father in Heaven.
The gift of renewed hope for life beyond this earthly existence.
The realization of reward for enduring and pushing onward to greater things.
As I witnessed our dear Marky's miracle of "renewal" of health , I have seen him
and others, myself included, at our very depths of despair and sorrow.
I remember so many nights sitting by Markys bed worrying and wondering if he would
live to see another day...wondering if our Father in Heaven was there, AND if he
was listening to so many pleading prayers?
But I have faith in His promises to His children.. to not forsake us in our time of need.
Whatever the outcome of Marky's mission, I was then, and remain, convinced that
it is our Father's will that will be done. His plan is bigger than I can conceive or begin
I AM confident to keep pushing and pulling the "handcart" and "ox" that was
given to me to reign.
As I have watched Marky run around this weekend like a "normal" kid (no IV's or tethers of
any kind, taking a bath without having to wrap up his arm with plastic to protect the IV)) I feel like that Easter morning when the "Tomb was empty" !
Marky has been given renewed health, a gift beyond anything any of us could have
imagined just months ago.
Whatever the future holds for our little family, I remain steadfast to never forget who
carried us through these trials. ..who gave his life that we might live to experience His
precious gift of the Atonement and Resurrection.
I know EACH of YOU have been through similar stuff and can identify with me. For your
support and strength and love, I am grateful. I know our Father in Heaven works through
angels on this earth to carry out his deeds. I consider each of you "angels" in my life.
Happy Easter everybody ! Love Netti
Posted by Markys mom at 3:28 PM
Friday, April 2, 2010
MARKY'S....UNPLUGGED ! YAHOO ! ! !
Wednesday Marky and Me and James went "up to the mountain" (PCMC) for a
Remicade Infusion ! It took 6 and a half hours ! !
His GI Doc and his Rheumatology Doc came in to see him and declared that he
was stable enough to GET HIS PIC LINE OUT ! ! !
Yep, you heard it right....the PIC LINE IS OUT !! MARKY IS UNPLUGGED..
DISCONNECTED, UNATTACHED, NO LONGER DEPENDENT ON IV
NUTRITION ! ! !
This is a HUGE milestone ! Marky has not been unattached from multitudes
of lines....IV's, NG's, catheter's, SAT monitor's, EKG's, O2's, etc......since the first of
December ! !
HE IS FREE ! ! ! You should see the look on his face and THAT SMILE !
We are tapering him down off the steroids too, those cheeks, I'm afraid, will
soon start to slenderize back down to the old Marky !
So the plan is to keep on the Methatrexate injections once a week and
get Remicade every 8 weeks thru the summer. And then re-image his
abdomen with MRI and a scope of some kind to see the progress or regression
of the disease !
AND>>>He can go back to school next week if he wants !!!! I am opposed
to this idea ! I want to keep him in this "BUBBLE" and protect him from the
billions of germs that are "out there"...But He is ready and raring to GET OUT !
So again, the prayers of so many have been realized and answered !
Miracle after miracle...God knows each of us.. He loves us unconditionally..
inspite of our weaknesses, thankfully.
Hope you all know how grateful the Jeanes People are for your faith and prayers
for our dear Marky and family.
Have a Great Easter.....love, netti
Posted by Markys mom at 9:01 AM
Thursday, April 1, 2010
Here's a Re-print from the "early days" of the blog about Scotty- The Awesome-est man ever.....
Let me tell you about the best big brother ever. SCOTT is the first son of three in our family. A better example of brotherly love could not be found. When Marky is having a particular bad day, which has been every day lately, he always asks for his "Bubba" aka-- Scotty.
After his 3 and a half hour marathon surgery 2 wks ago as he lay in the ICU, Marky asked for his "Bubba".
After his 2nd or 3rd Paracentesis, 2.5 liters of fluid drained out of his abdomen with a 3 inch needle---Marky asked for his "Bubba"
Christmas Day in the stinkin hospital ,stuck in bed with no strength to open his own gifts----Marky asked for his "Bubba" .
Scotty quietly keeps the faith going for us all. When the doctors told us Marky had Lymphoma---Bubba reminded us all that the "doctor's also told us once upon a time that our Sammy wouldnt live either, AND THEY WERE WRONG!"
Scotty reads his scriptures everyday, says many daily prayers for Marky, and others. He spends hours at home alone while everyone is tending to Mark and Sam elsewhere. He does this with a cheerful, positive attitude. Never complaining.
Scotty gets up every morning a 0515 A.M. quietly showers and gets ready for early morning Seminary at school--by himself. He comes home from school to an empty house everyday. Never complaining.
Scotty sees the big picture. He never doubts God's will. He is sincere, honest, kind, and generous.
He has many other talents as well as whats already been mentioned. Which include but are not limited to playing just about any musical instrument he picks up, singing beautifully, drawing anything his mind can imagine, expert shot with a loaded weapon, and on I could go.
Scott, thank you for being my son, I love you.
Posted by Markys mom at 10:28 AM
Happy April Fools Day!
I love April 1st ! I got up early before anyone else this AM and emptied the ENTIRE refrigerator ! ....I mean right down to the pickle jars !...
ALL OF IT....GONE ! I put it all out in a cooler in the garage !
Then, I took all the cereal boxes ( which add up to at least 30 boxes, our mainstay nutrition) and put them all in the washer and dryer !
The next main area of frequent visiting from kitchen ransackers is the
glass/cup shelves! I took all those and moved em to the microwave and
the oven !
And, of course, the toilets had to be sealed with Saran Wrap !
Everyone still asleep ...Then I quietly left for work !
Cant wait till I get a call from home asking....."Mom, what have you done with the milk?"
Posted by Markys mom at 7:50 AM