HAPPY ANNIVERSARY JASON & MINDY AND UPDATE ON JASON'S BRAIN CANCER

HAPPY  15th ANNIVERSARY    

to

Jason & Mindy 

They were married at Bay Beach

by Mindy's Dad (MyHero)

on a beautiful autumn day.

Fast forward 15 years and they have made

several moves over the years.

They have three beautiful children

        and are in the process of moving from

Omaha, Nebraska

back to the place they love,

Carmel, Indiana.

In the midst of a new job and move,

Jason had a massive seizure at the airport.

Within a few hours they found out he

had a brain tumor.

The brain tumor turned out to be cancerous

and, after surgery, 

he will now be undergoing

30 days of targeted radiation

along with chemo.

It is a very rare cancer.

There are only 4% of head cancers like his.

He has not been formally diagnosed yet-

the results of his tests have been sent

to yet another lab for a specific diagnosis.

He is part of a study so they can track the process.

Please wish them a a happy anniversary

and keep them in your prayers and well wishes

as they move along this path

that was not of their choosing.

Thanks to all of you that have reached out

with prayers and well wishes,

concern and support.

It means the world to me.

Bear with me as I try to play catch up.

I have been to Omaha and then 

taking care of John

and working with Scruffy.

I am just trying to stay ahead of the 8 ball here.

Love to all of you!

UPDATE ON MY SIL (JASON'S) BRAIN CANCER

Jason has a very rare form of brain cancer.

-NOT GLIOBLASTOMA-

I thought I would let him speak for himself

on this.

Their plans are still to sell their house in

Omaha, Nebraska

and move back to 

Carmel, Indiana.

That is where their hearts lie-

and it is "home" to their three kids,

who spent most of their lives there.

Here is Jason's post:

The picture is of him and his good friend, Owen.

Please keep him and the family

in your prayers and send

healing wishes and thoughts.

We are looking for a miracle........

Brain Cancer thought and update.

Hello from Omaha. I wanted to reach out to you as supporters during a time in the Noel house we never expected. Nearly 3 weeks post brain tumor removal surgery I am healing well. No pain and I am walking daily averaging 4-5 miles and starting to get the needed rest for my body to heal. After the walk I’m cooked for the day. Lol . We spent our fair share of time this last week at the hospital visiting doctors, specialist, MRI’s research studies and beyond.

We’re still waiting pathology reports that will help understand short and long term diagnosis, root cause and related items. Either way it’s not going to change my attitude to beat cancer’s ass a second time, live life, care for my family, enjoy my friends, have faith, get back to work and stay the course.

The support, prayers, meal trains, phone calls, visits, text, cards and beyond are making a significant difference for our family and me personally. Thank you very much! I am humbled by it all and know it’s going to be a driver's success in the treatment process.

We have identified next steps in this journey in the coming weeks along with a world class medial team of true professionals at the Nebraska Medical Center. These people are bad ass. Although I haven’t been to the casino or bought a lottery ticket, the number 42 continues to show itself as a significant and meaningful part of this experience. The tumor most likely started growing when I was 42. I had 42 staples holding my head together and just found out that I will have 42 consecutive days of oral chemo that starts on September 20-21st. This will coincide with targeted radiation over 6 weeks too.

No matter how dark this experience could be, three things remain intact - We must be:

1. Do’ers: sitting around isn’t an option. Keep your mind going, body healthy and push forward in all you do

2. Donors: obligation to your family, community, church, friends and beyond must remain at the forefront of who you serve

3. Door openers: how can we, you, and I open the door to better others, their lives and related situations

We look forward to working through the next steps from a medical perspective, getting the house back on the market, relocating to Indiana and getting back to work. It’s been great over the last week having family, friends and co-workers visit. My brother, brother from another mother, mom, sister and others.

Thank you, thank you, thank you. Upward and onward. In it to win it!

A QUICK UPDATE ON JOHN'S CANCER CHECKUP-

For those of you that missed

the update on 

FaceBook.

Just a quick note to say-

John is still cancer free.

He now goes from being scoped every 

FOUR weeks

to being scoped every

SIX weeks.

That is progress.

There is some concern that his 

THYROID is not functioning.

It is most likely damaged from 

all of the 

RADIATION.

But- Thyroids (or lack thereof)

can be regulated with meds.

That explains why he is 

SO EXHAUSTED

all of the time.

We were lucky enough to have our

LITTLE LULU

stay with us for four days

this past weekend.

She as as beautiful 

INSIDE as she is on the OUTSIDE.

We are blessed!

I am off to the VA 

this morning

and then coming home to pack for

a

LITTLE ADVENTURE.

I will fill you all in on that later!

MY HERO SLEEPS WITH HIS LITTLE BUDDY-IT'S A PLATONIC RELATIONSHIP

Any nappers in your family?

I have one that seems to 
take a
LOT OF NAPS..
especially when there is 
LOTS OF STUFF on the
TO-BE-DONE LIST!

Today,
unbeknownst to MyHero,
his little friend is joining him.
LOOK HOW CUTE!
They BOTH have matching
sleep masks!

He shifts around a bit

to get comfortable....

However, our little elf

is not much of a napper.

He likes MISCHIEF!

As you can see, he has pushed

HIS MASK UP

so he can see what is going on.

Hey! Buddy!  Time to
WAKE UP!!!
Whaddaya doing under there?

Sigh---looks like MyHero
is still sleeping soundly.
Yes- I know he has had 
cancer this last year.
Maybe I should give him a pass?
NAH....That's not me!
I would have to pretend to be
THAT NICE.

Buddy gives a 
BIG SIGH.
NOW WHAT?

Thank you, Buddy!
You have done your job
for the day.
You have been part of a grand
"pay-back".
Revenge is 
SO SWEET!
and--
MyHero touched you 
(or rather YOU touched HIM-
and that counts)
so he gets
COAL in his STOCKING.

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Now--just a reminder to my readers-
YOU BE GOOD-
Tomorrow is Christmas Eve.

Have a wonderful day

ps.  I added some further instructions to my
NEVER FAIL CARAMELS
HERE-

Umm...apparently....a couple of people had
FAILS---and my BFF, Sandy,
my "sister-in-life"
was first in line to tell me.
Thanks, Sandy....Lordy, I love you!
Don't break your last tooth on 
those REFRIGERATOR HARDENED caramels.

Please Pray For Our Friend, RON TOMES, -Pray For A Peaceful Passing

You know I never mind

asking for prayers

for someone.

But THIS ONE is tough!

Our friend, Ron Tomes,

has only hours to live as I 

write this post.

Ron has a type of cancer

that does not respond to 

regular treatment.

His only hope has been a

STEM CELL TRANSPLANT.

His son was his donor a couple of weeks ago.

Sadly, for Ron and his family,

the transplant did not work.

His body is full of infection

and his immune system is so compromised

that he can't fight it off.

Ron has been such a wonderful support

for John in his recovery.

He prayed with him and talked to him,

understanding what he was going through,

as only another cancer patient can understand.

He has always been full of hope and is a 

TRUE INSPIRATION

to everyone that knows him.

Ron looked forward to golfing with

John and his buddy, Jerry Price,

this summer.

I guess he will be golfing in heaven now.

Please pray him home to that big

GOLF GREEN

in the sky.

He has maintained his faith in God 

and always felt his illness was

a lesson somehow.

It has been.

It has been a lesson in 

GRACE & ACCEPTANCE

as he fought this battle.

Pray for his wife, Sue, and their children, too.

His death will leave a huge hole in all their lives.

Thank you so much for your prayers.

Weekly Update on MyHero--It's getting better folks!!!!

For those of you that don't follow us on

The Caring Bridge

this is what is posted there today.

Good Morning- This is a picture of John with two of his favorite little people in the world, Alana & Julia.  Sister Maria was at a wedding so the girls were here to get dressed for the reception. The lighting was poor so the picture quality is not great but we are so happy that the girls were able to visit and see Papa for a couple of hours.  As you can see, John is much thinner.  He is 60 pounds lighter than he was last Fall. While I would like to lose some weight I DO NOT want to follow his diet plan!  You don't either- trust me!!!!

I, for one, am glad to see this month come to an end.  It has been a long, hard month. There were days when we counted down the hours from rising in the morning until day's end so that sleep could claim us for a few hours of escape. However, as the month has progressed there has been improvement.  It is slow to come and is measured in weeks rather than days at this point. Living with it day by day, it is not easy to see the sometimes minuscule improvements as they happen---but looking back over the week at its end we can see progress.  Slow and sure is the motto that we have adopted.
 
John is 'brighter' than he was at the beginning of March.  He is tracking better and is able to stay awake for longer periods of time.  While still unable to eat, he is beginning to be able to swallow again.  He has tried a few 'tastes' of things but either can't get them down or if he can get a little bit down the taste is 'off'. His pain level remains manageable and he is weaning off the fentanyl patch.  He has not had any morphine in about two weeks.
  
We are looking forward to continuing improvement in the upcoming month of April. He has set a goal to go back to work as a chaplain the first week in May.  We are praying that happens and he is working towards that goal.  He will still be on a feeding tube but will be able to manage that himself at work.

The next journal entry will be from him.  He has improved to the point where he can focus enough to communicate more effectively.  Three weeks ago, he could not concentrate enough to even read properly.  He would doze off, or worse, read without full comprehension of what he was reading.  Today, he is reading his Bible and his inspirational books and watching something besides GOLF on TV.  (I really thank the Lord for THAT- I am ashamed to say that I often hoped the GOLF CHANNEL would be taken off the air-sorry Jerry Price!)

As always, we thank you for your prayers and well-wishes.  This has been quite a journey and we appreciate that you have walked this rocky road with us-helping us over the rickety bridges and road that is filled with unknown obstacles.  With your help, and prayers, we have been able to conquer so many of those challenges.

Love you all- and thanks for sticking with us..and for your continuing prayers. Diana

An Update On MyHero. His Last Radiation Treatment has been completed.

This is a copy and paste from The Caring Bridge.

I am posting it here for those of you that 

aren't able to access the Caring Bridge.

This has been a very rough few days for John.   

I think that he thought once the last radiation treatment was over that he would feel better.  The truth is he feels worse at this point.
      
Coming out of the last radiation treatment, his neck was openly bleeding.  We had seen bits of blood in the past but this was much more pronounced.   
It was like something 'broke loose' at this last session and the secretions he has been experiencing seemed to double. He is also coughing up a bit of blood from the trauma to his throat.  You can imagine how miserable that is with not being able to swallow.  He has also been very nauseous for the last several days.
     
Dr. Pan, the radiologist,  insisted that he have 2 hours of hydration after his treatment.  His weight, which had been holding pretty steady after the first big drop, took a dive and he dropped several more pounds in the past week.  Cancer is a calorie burner and it has exacted its toll.
     
He sleeps in snatches and wakes up in the middle of the night.  There is an 'aloness' in illness.  No matter how much someone cares for you they can observe, but not really enter, your realm.  It is a fight you have to claim and tackle yourself.  Outside support is great,  but the inner spirit is what needs to be stoked.  Once stoked it can burn through uncertainty, fear and anxiety.  John has called on God daily to see him through this battle. While his Bible has been a great comfort to him during trials and tribulations in his life, there are days when he is unable to read; unable to concentrate long enough for the words to make sense.  At that point, he relies on prayer and knows that God is protecting him in his lowest moments.
     
 Overall, he just feels ill and miserable. However, that being said, we are looking forward to days and weeks down the road. We hope that by next week this time he will feel a marked improvement and he will be able to smile when I put on my Nurse Ratched uniform and force feed him
.   
See this picture?  During these times you look forward to the small things that bring you joy.  This is our youngest son's little boy, CJK.  My son and his wife, along with his sister, her kids and a couple of cousins, attended the Shriner's Circus last weekend.  At the end of the show they announced that someone in the audience had a sticker inside their program for a special surprise.  Guess who it was?  Our little grandson!   He won a BIKE from Toys-R-Us.    He could pick out a bike of his choice and a matching helmet, training wheels, whatever he wanted.  He found a snazzy blue Schwinn bike with a matching helmet.  What a lucky little guy! 

We are lucky, too.  We are lucky to have family that is connected in our lives.
      
After this whole process is over I think we need to get a THREE WHEELER for MyHero  too.  One of those bikes like they use in Florida --I am thinking a little horn on the front with a basket for his groceries and a matching beanie would be nice!  I'll have to see if I can find one online.  Wouldn't that be a nice surprise for him?

Thank you for dropping in to read.  

If you don't have time to leave a comment, 

don't worry about it.  

We 'know' you care and love you for just being here.  

AN UPDATE on MyHero CROSSING THE BRIDGE

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I know that not all of you visit 

The Caring Bridge

where I do updates on John's cancer journey.

I am copying and pasting my morning post here.

You don't need to comment-

although you are welcome to do so.

However, if you only have time to read and run

that is just fine, too.

Good Morning! 

We feel like we are crossing a bridge.  It's an old rickety bridge that spans the Cancer Chasm; a  bridge that has weak spots in the floorboards that could let one plunge through with a misstep. The guardrails on the sides are ineffective at best - no longer offering security as they once did.  There is nothing tangible to grab and hold onto.   It is a bridge that is not longer car worthy so you can't drive across it.  You have to walk slowly and skirt all the dangerous spots.  Sometimes you have to step on the weak spots even though you don't want to do so.  You carefully test that area before you put your full weight on it, breath a sigh of relief when it holds up under your weight, and then you carefully move forward to the next safe spot.  You don't look down because you don't want to know how far you have to fall--so you look straight ahead to the goal on the other side  and you look up to the heavens for help.

John has worked his way almost all the way across the bridge.  He has dealt with nausea, pain, burning, anxiety, fear, insomnia, exhaustion, weight loss, inability to swallow, frustration and all around discomfort. 

He has dealt with all those pitfalls admirably with determination and resolve.  He has been able to manage his nausea and pain with medications (most of the time).  He has learned to let me feed him and not complain about having to take 'one more Liquid Refreshment' (which most of you would call Ensure or something similar). At this point he sleeps quite a bit of the time.  It is hard for him to talk and concentrate so he is no longer visiting with people.  He has chemo brain (which he will deny so then you KNOW he has it) 

His biggest strength, of course, comes from the Lord.  He is in constant prayer-not only for himself but for others around him.  He prays for our kids and grandkids so that they can deal with the changes in Dad/Papa.  He prays for me (that I won't poison him when he is in a snit).  I have told him he is not allowed to touch the attendant during feeding time (me)-no matter how bad the jokes are.  Sometimes I can still get a smile out of him. 
  
He prays for the people we see at Bellin Cancer Center.  Some of the people we see there will not be cured and it is heartbreaking.  When this is all over he hopes to return to his position as a chaplain.  Although he has always prayed for people in the hospital, and felt sympathy for them, he now has a whole new understanding of the full range of emotions they experience. 

We are on the COUNTDOWN TO THE CURE here. We have one more week and one more day of treatment.  We feel like we can see the safe ground on the other side of that rickety old bridge. 

We thank you for all your prayers and good thoughts.  They have bolstered us on this journey. 

Have a wonderful weekend- Diana ps.  When I hit safe ground I am getting into a convertible and speeding away...and if MyHero is NICE to me I MAY take him with me!  Anyone got one of those police radar devices I can borrow? 

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MEDICAL UPDATE on My Hero- Part 2

Thank you to all of you that have
reached out with prayers and good thoughts,
cards and letters and gifts!
Thanks, too, for the
inquiries as to how we are doing.
It was kind of a 
BLUE CHRISTMAS 
around here---
but not in the way you might think----
more like THIS WAY----

While we celebrated a 
BLUE CHRISTMAS 
in the family room, 
 we were 
PINK with HAPPINESS
when they let MyHero 
come home for Christmas.

Anyway-

I didn't want to make you wait too long

for an update..

Sometimes you wonder how much information is 

TOO MUCH INFORMATION-

and sometimes you know there are things you 

CAN SHARE and things you 

CAN'T (or shouldn't)  SHARE.

So- here goes-

I guess this will be a sort of record

for all of us as we hit the path to

CONQUER CANCER.

After 12 days in the hospital 
John came home on the 23rd.
We were able to spend
CHRISTMAS DAY 
with our family at our daughter's house.
John was able to sleep there
for several hours and enjoyed
his awake time watching the kids.

He still has an infection in his neck
but it is getting better.
They pulled the drain out today and that 
is one more step towards being
able to treat his cancer.

We asked them to put a pic line in
so that I can give him his IV treatment
at home.
That has worked out quite well.
He is mostly out of pain at this point
but is tired a lot of the time.

We see the oncologist and the 
radiologist on the 4th of January.
We are hoping that they feel the infection
has cleared enough that he will be able
to start treatment on the cancer itself.

We feel like we are in limbo
but know that is where we need to be
at this point.

We have a family wedding to go to on
Saturday and we are looking forward to that.
John was supposed to perform the ceremony
but will do a small part in the service instead.
That is okay.
The only BLUE we are feeling right now
is that soon I will be taking
our tree down and didn't have much time
to enjoy it this year.

However,
We are looking forward with optimism
to 2016.
We are expecting the miracle of healing
to take place-
even if that healing comes in the form of
radiation and chemo-
a "modern miracle" if you will.

I hope you have a blessed,
wonderful, light-filled 2016.

I will keep you posted as we go along.
Blessings and love to all of you-
You are just
THE BEST BLOGGING BUNCH EVER!

I have to give you a smile for the day:
Ryan, our youngest son, came up to
the hospital with us today so he
could take his dad home and I could
leave for an appointment I had for myself.
He said-when the Dr. was examining John-
"You know my cat has now cost me about
$1900. and he isn't getting any better. 
I'm gonna have to 
make a decision about him soon.  
I'd hate to be doing the same for you, Dad,
but these costs are really starting to add up."
John laughed- I laughed 
AND
even the Doctor had to laugh.

I do think laughter heals a lot of wounds!
As you can see- the nut doesn't fall
too far from the tree.

MEDICAL UPDATE on My Hero- #1

I will do an update

without going into too much detail today.

There is much to tell you but I want

to get a basic post out there to

keep you all in the loop.

MyHero was admitted to the ICU 

with a massive infection in the area 

of the mass on his neck

on Monday night.

The mass is on the left side but

I thought I would spare you that.

You can see the swelling is already

coming down around and is under 

his neck-moving now to his right side.

He has been moved from ICU to 

the medical floor and will be 

in the hospital until the middle of next week.

He is off oxygen 

and able to eat soft food 

for the first time

in about 8 days!

Notice his arm?

To put it in simple terms- 

the IV dislodged 

and his arm filled with saline solution.

Just a minor "tick" in the world of medicine..

painful but not harmful. 

We have been praying for a miracle.

Did we get one?

Maybe- in a sense we did.

The Drs. all thought the huge mass on 

his neck was cancer growing at a super rapid pace.

It IS growing fast but a large part of the mass

was infection.

Another "miracle"?

The PET scan.

The Drs. warned us that the PET scan  

"could" light John up 
(like a Christmas tree-)

that his body was most likely 

FULL OF CANCER.

There is NO OTHER CANCER,

that they can see,

in his body.

They could not believe that.

Neither can we.

The cancer team went from

"cautious approach for long-term success

and possible pallative care"

to 

YOU CAN BEAT THIS WITH

AGGRESSIVE TREATMENT.

So, that is what we are going to do.

We are going to hit the ground and 

run hard.

He will have 37 radiation treatments-

5 days a week for 7 weeks+.

We can do this!

We need to get this infection under control

so we can move forward into treatment.

Praying for another little miracle there.

I was going to close the comments
but started getting them anyway-
lol- so I am opening them up again.
(you guys---shheeesshhh--
you can find me no matter where I am)

I will keep you all posted 

as we move along.

Thank you so much for all the prayers

and good thoughts.

I am overwhelmed and so is

MyHero.

Just so you know- 

We have had 

ALL THE DOCTORS LAUGHING

 at one point or another.

THAT is another small MIRACLE!

There is not a lot of laughter

on these floors.

Have a blessed week leading up to Christmas!

My super kids are picking up all the pieces

to make Christmas special for all of us-

shopping, cooking, baking,

wrapping gifts and doing it ALL!

What a blessing!!

In spite of all of this pain and angst-

we are blessed!

Love you all-Thanks again!