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.

From Mark's room we are waiting for him to wake up from his Mesinteric Angio-Scope which inserts a scope in the goin area and looks at the arterial blood supply in the upper GI area and determines if there is interruption of blood to the intestine (Bad) or flow to the tissue (Good). He has "normal flow" and no noted abnormalities.

The GI team is not quite ready to call a diagnosis but they are looking at, "Mesenteric Sclerosis" which is something seldom found in juveniles but far more often a condition found in older people, say in their sixties. Treatment would usually combine steroidal therapy combined with Methotrexate which is a chemo drug interestingly, used in breast cancer treatments. Mark does not have cancer but this drug, used in small doses has become a preferred drug for these issues.

Again I say, the doctors aren't quite ready to call this but, they are leaning toward the treatment protocol. This would mean that Mark is going to be on a long-term steroidal therapy maybe for many months, even after he leaves the hospital. These would be aministered at home with injections.

Mark has to keep his right leg motionless for several hours to avoid blowing out the scope suture so that as much as anything, is making him a little agitated but he seems to understand his part in the process.

The challenge in the short term will be to get the feeds working and the talk now is that they may need to pull the N tube and put an NJ which feeds the colon in a normal fashion. Mark cannot leave the hospital until he is able to process solid food without the tubes so this is going to become a big priority in the coming week.

Tomorrow the pallative care team will meet with parents and discuss issues of a social-emotional nature for Mark's recovery process. We welcome the help the PCMC teams give and truly appreciate the overall approach to health care here.

Mark soldiers on and he could teach the class on coping better than most adults. He is a real fine young man and not a day goes by that the family does not feel blessed to be his family.

Ken

MARKY IS UP AGAIN!!!!

He goes in for the Angiogram at 12:30 today. It will take about and hour and a half. He will be under general anesthesia for the procedure to minimize his discomfort.....(DISCOMFORT--- that's the politically/medically correct way to say YEEEEEOOOOOUUUUUCCCCHH!)

Hey, If you are new to Markys blog, make sure you check out "Older Posts" or "Blog archives" !

There's other pictures there and fantastic uplifting comments from you guys and hilarious jokes from everybody....just sayin----.....:)

Wednesday Night from Markysroom---

Mom is back on duty!! My time in quarantine is over! Its great to be back with this sweet little warrior!

He is handling the steroid treatments mostly okay. He seems a little more comfortable. But is still sieged with constant nausea.

He is now on Methadone to try and control his pain w/out the heavy narcotics.

The steroids make his blood pressure rise, so they check it all the time. His face is puffy again, ..steroid side effects.

He DID GO ON A WALK AGAIN TODAY!!! with aunt Lori prodding him and applauding him! GO MARKY!

He's sick n tired of trying to swallow with that stinkin NG tube going down his throat, so he now could enter any spitting contest and probly win! He pools his saliva in his mouth and at regular intervals spits it out.!!

Tomorrow he will undergo an Angiogram to assess the blood supply to his small intestine and omentum, which has been mostly affected by the disease. The docs hope to gain more insight on the functionality of his intestines with this test.

We remain steadfast in our quest to win this battle!!

We will continue to fight a good fight!

This could not be possible without all of Marky's "Buddies"! EACH of you!! Thank you from the bottom of our hearts!

Nitey Nite---Marksmom

" Who's Mark Jeanes' Running Buddy" As you may know Mark is a student at Willow Springs Elementary School where Mark participated in the Gold Medal Mile. Mark felt bad for his friend Alex who running alone, was struggling and needed encouragement. Mark Jeanes instead of going for Gold, instead went back and ran with his buddy Alex.

Mow it's Mark's Turn for buddies as he faces huge challenges in a long road of certain obstacles to finish his race to come back home. Thanks to the kindness of Mark's school friends, teachers and principle, there will be the Buddy Run at Willow Springs on January 25th to raise funds for his expenses and to hopefully find a cure for his illness. It's called, "Mark's Buddy Charity Run." They are asking that you collect donations for this event and either bring them to the school or donate to the Mark Jeanes Charitable Account @ America First Credit Union, by Friday, January 22nd and then join the school team at the school on January 25th. What a great opportunity to come together in a community and support this cause and to lift the banner of charity high for all to see.

Thanks to all of Mark's buddies,

Ken Crocheron

On Jan 8th, Marky was certified as an

honorary UPS B-767 Captain by Steven C.

Cox, UPS B-767 Captain!!!!!!!

Steve Cox is Amanda Amakasu's step-dad.

What an honor for Marky.

We appreciate the special visit from Steve.

I heard the rumor that a big Brown airplane

was flying low up here around Primary's quite

often! I think Pilot Steve is keeping close

watch on our Marky!

Thanks Steve!!!

These pics are worth a thousand words!.....

No.....a GAZZILION words!

Mark walked today!!!! 90 yards all the way to his first room and then rode the wheel chair back to the room. He is trying to gag down some antibiotic oral medication which is supposed to kill the bacteria in his gut and hopefully help return some function to the GI track.

Along with Mark on the journey were his aunt "Duke" and aunt Lori ( kinda sounds like an Irish song doesn't it) his nurse and uncle Ken ( the Dark Angel) You have to have opposition in all things after all.

Presently "Mighty Mark" is on his second wheel chair ride to get a better view of the SLC smog. The idea here is to make him glad he is inside and not out there.

Angels are in the room and on the ride with the boys...Quite a scene; the two brothers holding hands on a stroll.

Ken C

We had a very special visitor today to lift Markys spirits. As you can see by the picture....Sammy and Marky were so exited to see each other! Sammy has made sure Markys room is child proof and checked out all the new gadgets. (This place is better than McDonalds playland to a 5 year old)

The mood in Markys room today is very upbeat, if not totally silly :). The new therapy seems to be doing wonders for Marky. His nausea is less, his spirits are lifted and he can sit up in bed by himself....there has even been talk of the dreaded "walk" today. We will see!!!!!! Take that back the nurse just came in and we are clamping the tube and going for a walk to the playroom. Marky is all for it.....this is a major moment! We will keep you updated on how far we make it.

Thanks again for your support......your prayers are paying off!

Oh, yeah----

Did you guys see the comments from our New Zealand friends! Thank you for putting Markys name on the prayer role in your Temple and for including him in your special fast.

I have heard that many of you have placed Markys name in MANY Temples around the globe and we appreciate your prayers and love on his behalf.

And another thing---

James said Markys tummy is 2.5 cm smaller around today than it was yesterday!

...Hooah! You little Green Beret! You're a Special Force, alright!!!

HI again everybody!

Monday night----Marky seems to be not a nauseated this afternoon!!! Maybe some of the new meds are starting to work?!?!?!?

James is still up at the hospital keeping watch over our prince. James is trying everything to help with his "crazy legs".. Heating pad, wrapping them in ace bandages, essential oils (which marky hates) massages, etc! Any ideas????

Cathy wallace--thanks for the input about your friends' boy. Auto-immune stuff is where the docs are headed. HLH was ruled out on marky, I believe. Glad to hear his outcome!!! Gives us added hope!!!!

Will check in tomorrow---love, Nettie

Monday, from Markys Mom--

Thank you, everybody, for all of your kind words and prayers! What an inspiration you ALL are to us!

I should've been blogging for years! If I'd known how much support and strength was to be found.....think about it!

Ah, but yet all of you have ALWAYS been here for us.....that i DO realize. But seeing your thoughts in print seems to ease the daily burdens we all carry.

So....thanks for helping!

The Docs are trying some new Meds on Marky. Something that they use on Crohn's disease patients. Also, trying some anti-nausea meds that help Chemotherapy patients too.

They have scheduled Mark to have an Angiogram on Thursday to assess the integrity of the vasculature that supplies the intestines. This involves threading a small catheter into Mark's femoral artery (groin area) and injecting contrast media (dye) and following its pathway as it circulates through the heart and on to the intestines.

Marky continues to suffer from intense nausea and frequent vomiting. He gets what he calls "crazy legs" all the time. Which is restless leg syndrome, probly induced by the many Meds he's on accompanied by the fact that he's been lying in bed unable to walk for 6 wks, accompanied by extreme "cabin fever"!

He still is unable to keep anything down, including small sips of water. He still has the NG tube pumping his stomach through his nose. Still has the PIC line catheter in his arm where he receives the meds and IV feedings. And he cant get up to use the restroom or shower. These things must be done for him.

He HAS, however, loved all your jokes and messages! HAS actually been transferred to sit in a Lazy-boy recliner beside his bed, once or twice. HAS been able to play an X-Box 360 at times when he's up to it. HAS smiled at the many visitors who have come to cheer him up. HAS continued to insist that he WILL "parachute outa this place tonight when the nurses arent looking" !!!

Love to all of you and THANK YOU THANK YOU THANK YOU........

READ CHAPTER ONE FIRST!

Chapter two----

While we excitedly paced the floors waiting for this visitor, Lyle "googled" who Elder Kenneth Johnson was! He was described on the phone by Pres. Monson's secretary as one of the Quorum of Seventy. But she didn't say his name with any preceding initial in front of his first name, or a distinguishing initial after his first name, as is usual and customary for most General Authorities ! So of course, we had to check him out...

His description, as I remember it, stated he is from England. And listed many great things about him. Mostly what I remember reading about him was he seemed very humble and unpretentious. (Is that a word)?

Then, within 30 minutes of the call from the sweet sister, a Gentleman in a dark suit entered Markyroom. I felt a presence of humility and love immediately. He greeted each of us warmly, and shared with us Pres. Monson's well wishes and love for Mark.

He then asked if he could give Mark a blessing. As he layed his strong hands on Markys head, the room was still. His words flowed like a beautiful warm cloak surrounding Marky. He spoke of health, recovery, life and spirit. He emphasized that these were blessings from God, thru him.

He said that the Doctor's would help him get better, but "It will be God that heals you and makes you well" .

I hope as you have read my version of this event, that you have been touched as I have. God does live, He knows us, each of us...even those of us who don't know HIM, like me!

I resolve to live that I may someday be worthy of these miracles that continue to rain down on me inspite of my weaknessessessess ..(that's alot).

I love you guys.

Sunday Morning From Marky's Mom---

Last Thursday night I got kicked out of Markysroom by the Colonel Crocheron! I have been sequestered (spelled wrong probly) away from Marky until I am deemed healthy enough to resume my post at Markys side!

This sudden onset of infirmity happened within a few hours of Markys visit from Elder Kenneth Johnson, sent by Pres. Monson! I had an "Aha!" moment as I lay in bed feeling unfortunate and helpless!

It was as if I were either Alma the Younger or one of his cronies! I had been struck with infirmity after seeing a great vision or in my case, witnessing the healing power of God thru one of His servants! (Book of Mormon, Mosiah 27, pg. 199)

I know MARKY deserved this special visit and blessing from Elder Johnson, but I also Know I, MARKSMOM, was not in line to recieve such a gift to witness this event! Even so, I WAS there and will try to relate in MY words how it all went down!

On thurs. afternoon, as Sammy and Scotty were visiting w/ Marky. The nurse came in the room and said,"There's a lady on the phone who wants to know if it's okay to send Kenneth Johnson to give Marky a blessing"?

I said to the nurse...."what? He's had many blessings.. it's probly a mistake and they got the wrong room." I didnt know anyone named Kenneth Johnson anyway.

The nurse relays that to the caller and then comes back in the room and says.."no, she really wants to send this guy over to give your son a blessing"...So I say...I better go see who this is on the phone!

I pick up the phone and say..."this is Marksmom, can I help you?" The sweetest voice I ever heard--besides Markys---says, .."This is Sister so-n-s0 from President Monson's office, He is in meetings and can't come right now but would like to send Elder Johnson in his place, would that be okay with you?" "He also wants Mark to know that he is praying for him and hopes he gets better soon!"

After I picked up my teeth that had fallen out, I mustered up the words to say.."Oh, That would be so wonderful and..tell Pres. Monson--thank you so very much"!

I relayed to everyone in the room what I had just heard! We all couldnt believe our ears. I felt like checking everyones "lamps for Oil"! especially mine! I know for a fact that I'm so far behind that I, let alone didnt have oil, but didn't even know I was sposed to have a lamp! ( See story of Ten virgins--Matthew chapter 25)

End of Chapter One....