From Krissy

Hi you all.  I just wanted you all to know that even though I haven't commented a lot lately, I read each and every one of your entries.  And I read most to John.  You cannot imagine the pleasure they bring to us.  Sometimes immense inspiration,  sometimes laughter,  sometimes knowledge and wisdom, sometimes just knowing that somebody cares!  That many care!  I realize that John and I have been lax at commenting back to your entries.  There is no excuse for this even though we are busy.  So from now on we will try to do so.  I am just writing this to you because I didn't want you to think all of your precious entries went unread.  I love you all so much for what you do for John and me.  Please know that EACH AND EVERY ONE of your entries are read.  None go unread.  I love you all from the bottom of my heart, as does John.  Your Krissy :)  

Look

Two more units of blood have been donated. Thanks everyone! Keep it coming!

From Krissy

John was discharged yesterday.  Thanks for all the prayers.  It turns out his problems was his PICC line (port) was infected.  They had to take it out.  I wonder if he will need another one.  One of the things he needed it for was to get his red blood cells, but I think he can get those through getting stuck.  He also needed it for Rituxin (chemo) when he needs the Hemolytic Anemia to behave.  Technically the chemo can be given another way, but it is not good to do so at all.  Then there is the issue of vanco (IV antibiotiotics) he gets sometimes, and the frequent blood draws for lab tests.  He just may end up getting another port.  That PICC Lince actually lasted six months before it got infected, which is almost unheard of!

Speaking of lasting six months, John got his first shower in six months a couple of days ago!  When they pulled the PICC Line he was able to shower!  Before that he could only wash up, because he was never allowed to get the PICC line wet at all, or he would develop an infection.  He said the shower felt so good!  

Anyway, they finally discharged John yesterday because his fevers stopped.  Of course when he got out last night his temperature was 99.8, but that is not that high.  But still something to keep an eye on.  In the hospital to keep his fever down he was given IV antibiotics.  At home he will get oral antibiotics.  

So now that John is out, we may get home today.  But I doubt it.  It is snowing back home, and there are 40 mile an hour winds.  I can hear the howling winds outside right now.  Our ride probably won't be able to get here through the high winds and snow.  I am not driving because of my narcolepsy.  If the snow is not too deep we will go home tomorrow.

I guess that is all I have to say, except that I am feeling pretty good.  Like wow, John's cancer is gone!  I didn't really have time to let it hit me, because he had a complication so quickly, but I am really thankful right now.  A nurse came in the rooma few days ago asking us after reading John's chart.  We said yes and she practically fell over.  She was so excited.  Then I realized how excited I should be, and not take it for granted.  Today I am very excited.  If there are a few complications along the way then so what.  Today I am very grateful!

Okay, I am getting off now.  John and I have a lot to do today.  We are going to the hospital to get some prescriptions filled.  Then we are going to see if he can get a certain supplemental drink for him.  We need to find out where it can be bought.  John has lost 85 lbs since the transplant.  The oncologist wanted him to lose weight, but that is too much weight.  Hopefully the nutritional renal drink will be a prescription drink, and then his insurance will pay for it.  I also need to clean up our room at Hope Lodge, and wash some clothes.  So I am off.

Love you all lots,  Krissy :)              

From Angela

Click here: http://www.procreo.jp/labo/flower_garden.swf

 

Hi Krissy and John,

 

I thought you could use a little spring time. Move your curser around the black page a lot. Keep going and receive lots of SPRINGTIME joy!

 

 

Lots of loving thoughts your way,

Angela

 

ReadMeReadYou@aol.com

From Krissy

Hi!  I wanted to do a quick entry to let you all know that John is doing much better.  If he had no fever during the night, they are discharing him today.  That is providing they didn't find anything positive in his cultures that needs to be treated.

His fevers are finally starting to dissipate.  He is going to be sent home on an oral antibiotic, so he will no long need IV antibiotics.  He has been on two IV antibiotics in the hospital - Vancomycin and Cefepime. 

I feel bad that I even mentioned this hospitalization to you all as it did not turn out to be something serious.  I worried you after good news. 

I was concerned when he was first hospitalized, but am only relieved now. 

Hopefully John will be discharged tonight.  Just in time for the biggest snowstorm of the year!  Or what could be the biggest snow storm of the past twenty years, they say!  I hope it isn't that huge.  And I hope it doesn't last too long.  We should be stuck at Hope Lodge for a few days when John gets out of the hospital, because his release about coincides with when it is supposed too start snowing.  I am thankful that we have a safe place to stay.

So I will get back on tonight and let you know if he was discharged.

I also want to get back on today or tomorrow and write a little more on narcolepsy and answer a few of you all's questions.  

But for now I have to run over to the hospital to see what the doctors are saying about John. 

Okay, love you all, Krissy :)     

Joke

The network controller goes down, and so does this bank's entire ATM network, so a technician gets called in to troubleshoot. She soon realizes this won't be a quick fix, so she reluctantly calls her fiance to tell him that she won't make their dinner date. "That's OK," he grumbles. "The darn ATM was down, so I couldn't get any money for dinner anyway!"

From Merry

Krissy,

Sorry to hear about your Narcolepsy.  Krissy, I wish you didn't have to wait until the end of April to discuss this with the doctor.  I think it must be frightening, and I don't think you frighten lightly.

 

Oh, John, I am sorry you've been running a fever.  It is best that you are where you are so that they can check you all out. I know you will make the best of this.  I am just sorry you had to run into trouble so soon after your good news.  I pray it's just a bump in the road for you, John.

 

For Both of you:

"Friends are relatives you make for yourself."

~Eustache Deschamps~

 

This is how I think of both of you!   I send you smiles, hugs, and prayers!  Oh, and also may I send you the 6 inches of snow we just got in Northern Iowa yesterday?  (LOL)

 

Love,

Merry

merry1621@aol.com

From Krissy

Yes, it is late.  But I just took a four hour snooze, and am going to go back to bed shortly.  I just want to have a few minutes computer time.

Gosh, so like what's been happening?  We have been up here since Monday morning and John was hospitalized as soon as a bed became available.  He had actually been having fevers since the Friday before Easter.  He woke up with 101.5 if I remember correctly.  I didn't write about it in my journal.  I thought it was a little flu bug or something, and would go away, and why trouble anyone's Easter.

Anyway, it won't go away.  John runs around 101 degrees.  He has since Friday.  This is starting to get worrisome.  The doctors thought it was an infected PICC Line, but now they can't find an infction in the line.  They did pull the line because it wasn't working, but when they cultured it it didn't show infection.  So now they have no idea what the source of infection is.  Or is it is a virus.

John is getting an IV antibiotic every other day.  Not every day because he only has 25 percent kidney function and his creatinin level is too high.  Too much of the antibiotic could cause him real kidney failure and he would have to start permanent dialysis, so they are walking a tightrope between curing whatever is causing the fevers and keeping his kidneys functioning well.

Well, that's the situation with him.  We don't know a whole lot yet.  When we do we will let you know.

Now I guess I will tell you something about me.  I forgot to mention how my sleep test went.  Suffice it to say the actual test was miserable, LOL.  I won't go into why.  It would be long and boring.  Anyway, the test was two parts, to see if I had sleep apnea and/or narcolepsy.  They called me back after about a week.  I have narcolepsy. 

Some people say, "at least you get to take a nap", or something equally as goofy as that!  They don't know what it is like.  Narcolepsy is a very frightening thing to me.  I don't know how it is to other narcoleptics, because I have never met any.  But to me it is frightening and frustrating.  I can't drive.  I fall asleep in a group meeting, and don't know if I have been asleep for thirty seconds or thirty minutes.  I don't know what I have missed.  I also fall asleep (say in my computer chair) and find myself slumped over and paralyzed and unable to move for a minute or two upon waking.  While I know from past experience that I will eventually get unfrozen, I still am somewhat afraid and call out for John.  I also fall asleep often while on IM with friends.  If I ever stop suddenly chatting with you, you will know why, don't worry, I still like you, LOL.

Yesterday I was sitting in the hospital room chair next to John.  I was holding a cup of coke with ice, and no lid.  I fell asleep and dumped my coke all over myself.  I had no change of clothes.  No, narcolepsy is not a fun way to get an extra nap or fifty a day.

At any rate, I am not scheduled to see the neurologist for treatment until April 26.  So I will just hang in for a bit longer. 

Well, I guess I better go.  Hang in there you all, Krissy 

From Barb

 

Hello, you two. Today is my birthday and I thought I'd share my birthday letter with you. Love you and praying for you daily.

xxoo

Barb

HEY LET'S TALK

 

Happy Birthday Barb!!! Tammy

From Merry

Hi Krissy and John,

 

I have no great inspirational news.  I am just thinking of you and  I want you to know that!  I continue to pray for you both.  Hope your stay in Hershey is not a long one. 
Love you guys,

Merry

merry1621

Update From Krissy

iJust checking in with you all.  I hate to say it, but John is in the hospital.  At Hershey Medical Center where he had his bone marrow transplant.  The cancer is not back, but he is having complications from the transplant.  Or perhaps the PICC line.  The PICC line is something that was put in his arm so that he can receive chemo when he needs it (for the Hemolytic Anemia), as well as blood, or antibiotics.  It is also used to draw blood from his arm, because he frequently needs a lot of labs drawn.  Anyway, at this time the oncologists are thinking that the PICC Line is infected and that the infection has gone into his blood, because his fever is a little bit high.

I am staying at Hope Lodge (near the hospital).  The times I am not with John at the hospital, I go there.  Please don't send us any mail there yet, unless I ask you.  I need to find out if this is going to be a prolonged stay or not first.  I would hate for you to send a letter and we had already left.  I am hoping this will be a short stay.  It could be a few days or a few months.  Who knows.  But I will let you all know as soon as I know.  

I don't know what else to say.  I didn't know that he could still have complications after he was cured.  Boy am I having a rude awakening here.  Maybe I knew but chose not to think about it.  I am really tired.  I still have lots of faith, and am trusting in God, and leaning on you all, and my family.  But I am somewhat tired.  But I am hanging in there.

Okay, I need to go to lunch now, then get back to John.  I'm hoping for your prayers again, as we have seen they do work miracles.

Love you all, Krissy

From Krissy

We are in Hershey.  John has a high fever.  He has been fevering for a few days.  We are at Hope Lodge (got here today - Monday) and they are going to Hospitalize him, but only if there are enough beds.  Otherwise they are going to treat him as outpatient.  We might have to stay here for about a week.  I thought all of this was over, but now he is having complications from the transplant even though he is cured from the cancer.

From Deb

Dear Krissy & John~

 

I was sorry to hear that John is spiking a fever and that you are still dealing with complications. I am, as always, still praying for you both. John~I know you will hang in there as you have been through a lot worse. Hope you are feeling better again sooner than ASAP. God Bless you richly!

 

Love and bear hugs,

Deb aka. Sassy (I include this in case there may be another Deb in your fanclub; I'm so glad that so many leave you comments and prayers!)

 

SassyDee50@aol.com

 

John's Links

Will add more as I find stuff. It will be in the site favorites section!

The Planetary Society
The Project Apollo Archive
The Klingon Language Institute
Vatican Museums
NFL
The Force
Green Bay Packers
Fox News
Stare Down Sally!
The Pittsburgh Steelers
The O'Reilly Factor
Trading Spaces
What Sci-Fi Character Are You?
What Not To Wear
Cool Cosmos
William Shatner
Cat Fanciers
The Butterfly Website
North American Butterfly Association
Penguin Webcam
Coloring Site
Digital Dragonflies
Virtual Drum Kit
Write On Einstein's Chalkboard!
Battleship
Hubble Heritage Image Gallery
Fly
Draw..Thingie
Star Trek
The Nine Planets
Signal Alpha
Space.com
The Enterprise Mission
Space Flight
Nasa World Wind
Human Space Flight
The Planetary Society
The Project Apollo Archive
Darklight Imagery
Space Sounds
TrekWeb
Space Weather
Hubble Space Telescopes
Star Wars
Football.com
StarDestroyer.net
Space News
NASA Earth Observatory
World-Mysteries
Celestia
Universe Today
Living Space Online
Space Daily

Krissy's Links

I will add more as I find stuff. The Links will me in the site fav section.

How To Clean Anything
Reminisce
Vatican Museums
Pictures of Places
Fox News
Pavement Drawings
The O'Reilly Factor
Southern Living
Country Magazine
Trading Spaces
What Not To Wear
Hannity & Colmes
Roadside America
Spongebob Squarepants
Cat Fanciers
The Butterfly Website
North American Butterfly Association
Coloring.com
Catholic Online
Google Earth
Dancin' Doughboy
Cracker Barrel
Jigsaw Land
Hampsterdance
KaleidoDraw
Sketch Swap
Etch-A-Sketch
Earth Cam
Rainbows Show
National Geographic
My Free Recipes
Make Your own Glitters
Northern Lights
Virtual Tour
Deep Sea Images Library
Road Trip America
ThriftyFun
Panoramas
Seven Wonders Of the World
Whale Sounds
Food Network
Hawaii Web

From Barb

Dear Krissy & John,
I came across this poem I wrote in 1982 and wanted to share it with you. I
remember writing it. I was going through a particularly rough time and God, as
always, reminded me that I'm never alone. You aren't either. So sorry I have

not sent much to you of late. I've been sick, but getting better. Love you both, and praying for you all the time.
Love,

Barb

    DON'T CRY FOR ME

Don't cry for me, even when there is darkness,
For I've a Friend who is my guiding light.
When sleep won't come- and the thunder scares me,
He holds my hand and brings a calmness to the night.

Don't cry for me, because of all the hardships,
Each troubled time was but a stepping stone
To a better place where love's victorious,
Where I'll live in my brand new home.

So shed no tears, there are hands that guide me,
Along the road that I must travel.
And if I've been just a little bit faithful,
The troubles and cares will soon be gone.

I don't need to cry, though the tears are flowing,
I've a Friend who never lets me walk alone,
I just need to wait in our special corner,
He'll come and tell me about my future home.

copyright 1982

 

Barbpinion@aol.com

Update

Hey guys, as you know I am having computer problems so most have stopped sending me things until I sort this out. Right now I am afraid to do too much. I have decided it is in AOL that is the problem. I have tried everything except reinstall AOL and you all know what a pain that is! I will have to reset everything and I am afraid I may lose something like I did last time. So if you all want to send something, go ahead as long as there are no graphics! I do not want to take any chances. After Easter I can work on it more. So send away and I will add it if not the day you send it, soon I promise. You can email Krissy but remember, John still has to make trips to Hershey so please send jokes and whatever except graphics.

John, another unit of blood has been donated! You all have a Happy Easter. You truly have something to celebrate now. I know this Easter will be a happy one for all of us. So enjoy yourselves and I will work on getting this computer back on track. If I can figure out what the heck is wrong!

Tammy

From Angela

 

I heard some wonderful news today

that cancer is no longer a part of John's day.

 

I know God felt the uproar in the atmosphere

of prayers and well wishes from way down here.

 

John will be entirely well one day

because each and everyone of us will continue to pray.

 

John and Krissy are a miracle of love,

together forever......a gift from above.

 

So smile and think happy thoughts you two,

as God makes many miracles just for you.

 

Love,

Angela

 

ReadMeReadYou@aol.com

From Jaymi

About 15 years ago my family went to church on Easter.  The priest who was saying the mass was from India and had broken English.  My little brother and I were looking around during the sermon as we quite often did.  We always sit under St. Agnes holding the lamb--when I was little I wanted to know why the saint was holding a dog--I didn't realize it was a lamb.  So the priest stands up and he says "Happy Easter"  and everyone in church replied "Happy Easter to you Father."  He stopped for a minute--looked around and said "Today, Easter, is the Happiest Today of the year."  He paused and we were waiting for more.  Next he says "That is all I can say" and he sat down.  It was probably the most truly accurate sermon I've ever heard on Easter and every Easter--I call my little brother to tell him "Today is the happiest Today of the year.

                Jaymi

 

Nyuknyukpik2@aol.com