New information to report on Mark comes primarily from Dr Cheryl Coffin @ Vanderbilt. The report is full of $5 words and most seem to point away from malignancy and more toward autoimmune related disease.
What is absent in the report is any definitive diagnosis. Here is a capsule of what she reports: (1) "Soft tissue, biopsy of intraabdominal mass slide" shows chronic inflammation and Fibrosis. (2) "Liver, biopsy #1and #2" shows Lobular disarray with hepatocellular swelling and focal mixed portal triaditis" again with chronic inflammation.
The report goes on to say that the same chronic inflammation is found in the peritoneum, omentum, and small bowel along with attendant fibrosis.
What is missing: "definitive neoplasm" specific malignancies. The lymph node biopsy shows reactive lymphoid hyperplasia and "several poorly-formed granulomas" and she suggests that it may be useful to perform additional stains for organisms.
Dr. Coffin points toward " IG4 disease, dissorders and autoimmune and rheumatologic dissorders.
Though no specific diagnosis has been made, there are threads that can be followed and the "Child Care Team conference" will convene tomorrow and will include team members from Infectious Disease, Oncology, Surgery, Gastrointestinal, Hematology, Rheumatology and others. Their charge will be to identify differentials and commonalities and devise an agenda for new tests and formulate treatment protocols.
Mark had the misfortune of becoming critically ill during the holiday season when so many top-tier docs were away. Now they are back in the shop and suiting up for work. There is no magic doc out there with all the answers and this rare illness will not be solved easily. They will have to solve this through hard work which will include detailed research.
Meanwhile. Mark continues to suffer side-effects from meds and prolonged hospitalization; things like delirium tremors and restless agitation. He has periods of alertness alternating with what looks like teenage fog. He misses his brothers and is emotional.
Mark had his 15 or so staples pulled today and he was agitated from that but seemed to be more comfortable after the procedure was finished. I felt better myself after they finished that up. Mark and I share more than hats it seems; we belong to the brotherhood of tummy zippers.
Love to all followers and supporters of the Jeanes family Klan.
Ken Crocheron
11 comments:
Thanks for the update Ken! We've been so anxious to hear how Marky is doing. We'll continue to keep your fellow-tummy-zipper-Green Beret in our prayers! Love, Dave & Cathy
Thank you for the update Ken. All of the posts by Lynnette, Ken and Scotty,and comments by family and friends continue to bring tears to my eyes.
We love you all!! You are all amazing, in our prayers, and are an inspiration to us.
Marky, keep fighting the good fight, buddy! Please know that we love you, your Heavenly Father and Savior Jesus Christ loves you, and we are ALL praying very hard and pulling for you to feel better!
A couple jokes:
What do cows like to dance to?
Any kind of moosic you like!
Where do sheep get shorn?
At the baa baas!
Love you Marky! Scott, Jenie, Jordan, Cameron and Ellie
Amanda sent us the link to your blog this afternoon - we are so, so sorry to read of this huge trial...we will keep you all constantly in our prayers. We love you and miss you.
Rich, Laura, Charlie, Grace, Jane and Josephine Hunter
We love you all and continue to pray for all of you! Please stay strong and brave! We know it's been a rocky road for all of you.
Thank you Ken for translating that Doc gibber into somewhat of understanding for the rest of us :) We appreciate the updates and feel like it keeps us closer to Marky and his needs.
Lynette missing you dearly! I hope you know how much I love you! We are pulling for Scotty to come to dinner at least 3 times a week. We'll see how he feels about that :) Please let me know what the limitations are on visitors now. Thanks
Much love-
~Nikki
Our family continues to pray for you daily. It is truly inspiring to see your faith and courage through this ordeal. You are all amazing!
Here is a poem for Marky that one of my pre-schoolers shared with me the other day:
I made myself a snowball
as perfect as could be,
I thought I'd keep it as a pet
and let it sleep with me.
I made it some pajamas
and a pillow for it's head,
Then last night it ran away
but first--it wet the bed.
We love you!!!
The Dahl family
Knock, knock
Who's there
Little old lady
Little old lady who
I didn't know you could yodel!
From,
A Little Old Lady who is praying hard for you!
Here is Gabriel's few jokes for Marky.
Thanks for the update Ken, it helps to know where things are headed.
How many animals of each species did Moses put on the Ark?
None. Moses didn't build the Ark.
If Mr. Peters peacock laid an egg in Mr. Boyer's yard who is the rightful owner of the egg?
Nobody! Peacocks don't lay eggs. Peahens do.
Do this without a calculator.
You are driving a bus and you stop in West Jordan and 7 people get on. Then you drive to Draper and 5 people get on and 3 people get off. After that you stop in Sandy and 19 people get on and 12 get off. Then you drive to another city. 10 people get on and 5 people get off. What was the name of the bus driver?
You were the bus driver!
Figure this one out. If you can.
3 men walk into a hotel and the clerk says a room for 3 will be 30 dollars. So each man pays ten dollars and they get a key and go into there room. Five minutes later the clerk realizes the room was only twenty five dollars so he sends a bellboy up with five dollars. On the way up the bellboy can't find a way to split five dollars evenly into three so he keeps two dollars and gives each man one dollar. That means each man only paid nine dollars and three times nine equals twenty seven dollars and the bellboy has two so there is now twenty nine dollars. Where is the missing dollar?
It never really disappeared. It was a trick of words. So each man paid ten dollars, there is thirty dollars. Then the clerk realizes the mistake and sends the bellboy up with five dollars and keeps twenty five dollars. Then the bellboy gives three dollars back total so there is twenty five dollars and three dollars and two dollars which adds up to thirty dollars. That one was very tricky.
Marky, I hope you will enjoy the jokes. I will have him write more later if you like them.
Sarah and Gabriel Hoopes
Dearest Marky,
I think it is so great that your friends send jokes to you....it makes me laugh too!!!
I love you and I sent you a great "get well" card. Hope the hospital mailman can find you.
Give my best to your Mom and Dad, Ken, Scotty and Sammy. I know they will find something out soon.
Love, Grandma Joan in Raleigh
Marky makes us ageless! We'll kill the fatted calf tonight and stick around. You got to hear electric muscic solid wall of sound. Oh, bbbbb bu bu bu bu he is so spacedout. Markey and the jets.
Bring up the jets\!
Bing up the Jets
bring up the jets!
Bring up the jets!
Marky makes us ageless!!!!
BRING UP THE JETS, THEY WILL COME
Thanks for interpreting that for all of us Ken. :) Should be quite a meeting with all those drs today. We're praying for them too.
Jana
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