Thanks for your good advice!

Thank  you all for your excellent advice of just going ahead and talking to the medical personnel about my concerns.  I talked to them some yesterday.  And they answered some questions.  But they didn't know fully what the discharge plan would be because they decided they weren't going to send John home yet after all, because of his poor kidney functioning.  So I guess they have time to work on a plan.

I spoke immediately to them about the situation of them not showing us how to take care of the PICC line, nor where to order the supplies from.  Nor scheduling the bandage change.  The nurse practitioner was immediately apologetic in her neglect.  This made me feel a lot better and gave me more faith in them as a hospital.  Because they have always been totally on top of everything in the past.  I wanted to have that confidence in them again.  

I feel a lot better about things, I think we will have a plan in place when it is time to go home.  I hope.  If not, I will make sure there is one.  

And I see now that we are not going home (because John is having kidney function problems) that my inclinations about something being wrong with his health was right.  I was not just being paranoid.  I always know when something is wrong with him.  If they had just sent him home without checking his creatinin level it would have been bad.  One of the doctors had actually suggested just sending him home this past Friday.  The nurse practitioner told me so.  But she told him she didn't want to do that, and could he PLEASE come in to Day Hospital on Monday (yesterday).  I am glad she did.  If she hadn't we wouldn't have known how his kidneys were functioning.  Or maybe the test would have been done back home with a home nurse, showing chronic kidney failure, and we would have had to turn right around and come back to Hershey. 

Okay, enough already.  Got to go do some other things.  I am up much too early, but I am having trouble sleeping these days and I don't really know why.  Maybe I will go back to bed.

Love, Krissy :) 

Waiting for the other shoe to fall

It's been a long time since I have done an entry in this journal.  One of the reasons is because I wanted to update it, and I didn't want to write an entry and have it out of order.  But tonight I thought it was so important that I write, that I am going ahead and doing so.  I have a lot on my chest to get off.  Mostly I want to say that I think that John's doctor might send him home, and I just don't know if he is ready.  I am not trying to second guess the doctor.  It is just that John has so many things wrong with him, and I have a bad feeling on this one.

Okay, call me paranoid.  But the last two times John was hospitalized, I told myself, "By the end of the day, John will be hospitalized."  Neither time John had a fever.  Actually, I don't recall him having any signs whatsoever that he was going to have to go.  I just KNEW.  Call it women's intuition.  Or wife's intuition or something.  The times before that I knew also.  I just looked into his eyes and could see a fever or something coming on.  I can tell when John is not doing well.  I can tell before the doctors can tell when John is not doing quite right. 

And I don't have a good feeling about John going home.  Unless they give him home nursing care.  I don't know if they plan on giving him a nurse or not.  I guess I will find out tomorrow. 

I don't want to go all the way back to State College and have to turn around and come back again in a week.  Am I being paranoid and scared?

Okay, here's the deal.  They will probably be sending him home with a PICC line in.  A PICC line to draw blood from to take his labs.  It occured to me tonight that there is probably nobody in State College that knows how to change a PICC line.  Not even nurses can do it here in Hershey.  It takes the PICC team to do it.  And if he doesn't have a PICC team in State College do it, he will have to come to Hershey once a week to do it, or he will have to have the PICC line removed before he goes home to State College.  If he has the port (PICC line) removed, how will they take his counts?  He has been having horrendously low white and red blood counts.  He has been needing red blood packs (bags of blood), and has had very low white counts and needed to wear masks.  Also, how will they monitor his creatinin level?  What if it got high enough to need dialysis and they didn't even know?  Because they weren't monitoring it. 

Oh yeah, they can stick him each day when they want to take six to eight vials of blood.  But they usually don't like to do it like that.  They usually like to do it through a port of some type. 

You may think these are silly questions, and that they have already thought of them, but I don't have so much faith.  For the first time in over a month, they gave John two days off yesterday and today (Saturday and Sunday).  We were very happy, and then Saturday night it occured to me that they had never told us how to flush a PICC line nor given us PICC line supplies!!!  We were going to have to take care of the maintenance of the PICC line ourselves for the first time (Day Hospital had been doing it for John every day up until this time.).  Fortunately John had overheard a nurse talking to somebody in Day Hospital the other day.  He also remembered some of how to do the Hohn chest port he used to have, and I remembered some, and together we figured out how to flush the PICC line. It was kind of frightening, because we needed a different amount of heprin, and it took John to figure out how to get the different amount of heprin in the syringe.  You also have to apply a different amount of pressure when you flush the lines.  We overheard that too.  And another thing. John was due for a PICC line bandage change on Sunday which he missed because he had the day off from Day Hospital.  It was very important that he got it changed, because he has only had the PICC line for a week (remember, they put in a new PICC line), and it is imperative that they change the bandage on time so that it doesn't get infected.  Well Dr. Claxton told Day Hospital to give John two days off without scheduling a bandage change.  We have to make sure the PICC line team changes the bandage at Day Hospital on Monday.  And one more thing.  They didn't call the supply company for us.  I don't know WHAT they were thinking.  We didn't have the right size syringes for the line.  If John hadn't have overheard the amount of saline and heprin that was supposed to be in the syringes it would have been disasterous.

I am saying all of this to say, yes we made it through, but I don't like the sloppiness of what was done to us, and who knows what kind of treatment John is going to get when he goes home.  Are they even going to draw labs on him???

Okay, enough, like I said, perhaps I am just being over reactive and paranoid.  Maybe he doesn't need to go home with a bunch of labs drawn.  Maybe he will do just fine at home.  Maybe his creatinin level and his counts will clear up immediately.  Why am I apprehensive?  Maybe my feeling this time is wrong.  

I hate not know.  I am trying to relax here.

Krissy 

We are finally going home!

                        We are going home!!!

Wow, oh wow, oh wow, oh wow!  Tomorrow we are finally going home!  We got the green light from Sue at Day Hospital, and from Dr. Claxton. I haven't been this elated in, well, I don't know how long.  

John's GVH rash made a dramatic improvement, which is the main reason why he is allowed to go home.  He will get his last IV treatment for it this coming Thursday.  He will still have to take oral meds for the GVHD for a long time, however, to keep it in check.  But his GVH is improving dramatically!

Oh, John will still be receiving treatment at Day Hospital one day a week.  We will have to drive up.  It will be two and a half hours each way!  These will make for long days, but it will be worth it, because it will allow us to stay in our own home.  The first trip back here to Hershey will be this Thursday.  John will go to Day Hospital in the morning.  He also has an appointment in the afternoon to see Dr. Claxton.  And to get one of those yucky bone marrow biopsies.  It will be his seventh! 

Oh, I want to tell you all something before I forget!  John got his second Mixed Chimerism test back.  His immune system is 95% donor!  That is INCREDIBLE!!!   

Well I better run, I gotta get to packing!  Love, Krissy :)

Happy St. Patrick's and Italian Day!

Hey you all!  Wow it's been a long time.  I haven't had much computer access is why I haven't written in a long time.  The computer is completely down at Hope Lodge, I don't have access to the ones at the hospital, and only limited access at the library.  That is where I am doing this entry from now, the Hershey Community Library.  They let me have a limited amount of time on here.  

So here I sit at Hershey Library.  Wishing I were at home.  I wonder how much longer we will be here.  I am glad we are here though, John is getting the best of care.  Such wonderful, wonderful care. 

So how is John doing?  He is doing well in a lot of ways.  He is considered doing very well compared to most of the transplant patients here.  But he still has a few problems. 

His platelets are not real high (they have been progressively dropping).  Sue, the nurse practitioner, says this has to do with his Graft Vs Host Disease.  Low platelets make you anemic.

His HGB and HCT are not real high either.  But not low enough to require blood transfusions anymore.  So Sue says not to worry.  John has not had blood transfusions or platelet transfusions in several weeks, so he is doing well.  I am just the worried wife I guess!

He really is doing well, better than I expected.  He has to rest some, but he does not stay in bed all day.  I think yesterday he took a three hour nap, but that was it.  Then he came out into the living room with everyone else.  He gets up everyday, even if it is to sit somewhere.  Some days he has even more energy and does activities!  Right now he is at the library with me.  And he is driving now! 

His biggest problem is Graft Vs Host Disease.  He can't get rid of it.  He is on three medications for it now.  One of them is an IV that is administered to him at Day Hospital.  Since he started the IV, though, the rash has only gotten worse.  Last night was the worst I have ever seen it.  He was itching so badly.  It was covering his face, head, stomach, arms and especially back.  I am wondering how they are going to get it under control.  

So that's that's how John is doing in a nutshell.  I am doing OK.  Some days are stressful.  But thinking about it I think this experience has brought us closer together.  We are more in love than we ever were.  I think crisis either make you or break you.

Days sometimes here get boring.  You go to Day Hospital till the afternoon and then you have to come back and find things to do all day.  Well, yesterday was different.  Everyone here at Hope Lodge (who was well enough) had a really fun day.  We had a St. Patrick's Day Celebration!  First we had a big meal together - corned beef, cabbage, potatoes, carrots, and lots of sweets.  Oh, and I can't forget the Irish soda bread.  And somebody made potato candies colored with green food dye.  I found out it takes one apple-sized potato and a five pound bag of confectioner's sugar to make a small plate of potato candies.  Gross!  I didn't know you used one potato and all that sugar! 

Anyway, after the meal, we had Irish music.  The ladies sang songs together.  Then we all played games.  My table played Monopoly.  I won.  John came in second.  The whole day was so much fun!  Today I realized that the whole day (from 4:30 pm till 10:30 pm) we all had a great time, and not ONCE did anyone mention anything about their cancer or treatment.  It was a truly delightful time, and a great diversion - a time for everyone to get their mind off of their and their spouse's illnesses.

So today I hope we have another great day.  A Catholic Church brought in some penne pasta, salad, and rolls last night for us to eat tonight.  Somebody suggested we have Italian night!  I suggested we put on Italian music!  Everybody is wearing red for the occasion.  I guess because Italian restaurants have red and white table cloths, lol!  Anyway, it should be fun.  I am enjoying the camaraderie and diversion we are having.  Maybe I will be able to not be so bored till we get home... 

Great News!

Great news!  John got the results of his Chimerism test today.  It revealed that he was 84% donor!  Sue, the nurse practitioner, is very excited.  She said that is a very good first score to have.  I was worried when she first gave us the news, because I thought you were supposed to get a 90% or higher, but Sue said that wasn't true.  She said 84% was a great first score.  She said many transplant recipients score 15%, 11%, or even 0% donor on their first test. 

What I am really excited about is the fact that was John's first Mixed Chimerism test and his blood count scores were even lower then than they are now.  So he should score even higher on the next Mixed Chimerism test.  They took another one today.  I can't wait to see what the result of this next one is but I must be patient, as it will take two to three weeks to get the results back.

I will update on what has been going on soon, I just wanted to let everyone know the results.

Thanks for all the prayers!  Love you all, Krissy :)

Still waiting for results

Here it is almost three in the morning and I can't sleep.  Probably because I got too much sleep today.  I was sooo exhausted.  I didn't want to do anything so I just slept a lot.  And John rested too.  It was a nice lounging Sunday.

Tomorrow (Monday) when John goes to Day Hospital we are hoping to get the results of the Mixed Chimerism test.  The one that will show how much of his cells are the donor's and how much are his.  Wow, we thought we would get it back way before now.  Tomorrow will be two weeks and four days since the test was taken.  When they took it, they said it would take three days to get the results.  I asked Sue, the Nurse Practitioner, on the fourth day, what the results of the test were.  She just looked at me and told me it would take about two weeks to get the results back, because John had a male donor!  I was taken aback, because right before the transplant, before the cells were to enter John's body, the doctor performing the transplant and the attending nurse refused to tell us if his donor was male or female.  It is interesting to know more about the donor.  I have no idea why.  It makes him more personal that way. 

Anyway, if the donor were to have been a female, it would only have taken three days to get the test back.  There would not be as many chromosomes to match on a same sex donor.  When the donor is a same sex donor, you have to check out a lot more to see which are the donor's cells and which are the transplant recipient's.  It makes it harder to know whose cells are whose when they are the same sex.

So tomorrow is the big day when we find out.  Hopefully.  And then on the other hand, it is with some fear and apprehension.  Which is just plain silly, because all the worrying you do is pointless, because it doesn't change the results.  I don't know if I mentioned last entry, but they want to see 90% donor, and 10% John.  Or at least 70% donor at this point. 

So I will let you all know the results of the test.  And update you on some more things.  Soon. Really, lol.

nite nite, Krissy  :) 

Learning to flush the lumens

Happy Valentine's Day!  Here it is, early morning, and for some reason I can't sleep, so I decided to come out in the living room and do an entry.  I love early mornings when it is still quiet. 

So John is still doing well.  So well that the Physician's Assistant has said that he should start coming to 'day hospital' every other day now, starting on Wednesday!  That will give us a day of rest in between the days we will have to go to the hospital.  How nice.  After my chores are done for that day I will get to rest!  And John can rest.  He will like that.  We are also going to start going to go for little walks each day, because the nurses suggested that John do that.  

One thing that is interesting about John going every other day is that I will be flushing off John's lines when he is not in the hospital that day.  This will be for as long as he has the chest port in.  I have heard that some people have their chest ports in for a year!  Anyway, yesterday was the first time I did it by myself.  Well, John and I did it together, back at Hope Lodge.  I was kind of proud of myself.  It is a very simple thing to most, but kind of daunting to me, kind of scary.

In the chest port there are two lines hanging down.  At the bottom of each one is something called a lumen.  These lumens must be kept sterile.  They also must be kept clamped so the blood flow goes back to the heart.  They must be flushed with saline and heprin (I have no idea if I spelled that right) so that no blood clots form.  After they are flushed, they must be reclamped.  The saline and heprin have to be pushed through with these syringe type things.  

If you want to get a little bit of a picture, the chest port has already been surgically implanted into John.  And to stay in place it has stitches around it.  Then the lines come hanging out of the chest port.  They are tubes.  At the ends of the tubes are the lumens.  One is red and one is white.  They are used to draw blood, oradd fluids.  Their purpose is so that there is easy access to the patient, and so the patient doesn't have to get stuck hundreds of times with needles, but just gets treatment through the central line (chest port). 

Anyway, I felt very nurselike while practicing flushing out the lumen yesterday at day hospital.  Then the nurse gave us a little supplies to take to Hope Lodge to practice.  I practiced last night.  You know, John remembered more than I did, lol.  But I called 'Critical Care' yesterday, told them John would be going every other day soon, and they said they would be out on Wednesday to show me again how to do the flushing of the line, and to bring me supplies.  After they show me how to do it, then they are going to watch me do it until I get real comfortable with doing it.  I am real glad I have 'Critical Care'.  'Critical Care' is a service that comes to your home and helps you out with nurses, supplies, etc.  It is paid for by your insurance company. 

So in other news, today is the day John will get the results of the mixed chimerism test.  We are both waiting in anticipation to hear the results.  It will show how much he has engrafted.  That means they are hoping that 90% of the stem cells would be the donor's instead of his.  They did say it was still very early after the transplant and it would be okay if it was not 90% at this stage yet.  

So that's about it.  John and I are both doing well.  Today we are going to have a nice Valentine's Day.  A simple one.  We don't have presents for each other, but we are going to have a pork chop dinner together, with a baked potato and sour cream, and spinach.  Oh, and I got a chocolate cake!  Gotta have chocolate!

Well gotta run, I gotta get ready for Day Hospital with John, everyone have a nice Valentine's Day, and love one another,  Krissy  :) 

John is doing a lot better!

Hi!  Here to say that John is doing oh so much better.  One of the reasons is a little pill called Cellcept that John has been taking .  It fights off Graft Verses Host Disease.  What is GVHD?  It is when the donor cells see your body as an intruder, and they attack it.  I just asked John, and that is the definition he gave me.

So John has been going to "day hospital" each day.  There he has been getting an antibiotic called Vancomycin.  That helps tremendously too.  It will prevent him from getting any infections, or from getting his other infection back.  At first the hospital was going to have me administer the IV myself to John at Hope Lodge (each day until the fourteenth), but they changed their mind, thank God.  They were going to send somebody from "Critical Care" to come to Hope Lodge to show me how to do it.  In the end they decided to do it at day hospital instead.  Boy am I glad for that!  I am NOT a nurse.  At day hospital they also do a lot of other things, and we get out some time in the afternoon.  It is not too bad.  We are out of there usually at the latest by 3 PM, and we have the rest of the day free.

John has been getting stronger everyday.  There has been an occassional day where he was so tired I have had to push him in a wheelchair at the hospital, but there have been others where he is able to walk around the hospital, and all around that day!  Today was one of those good days.  He did very well!  He didn't even sleep all day, he was out of bed part of the day.  He is so strong.

John started losing his hair yesterday.  Or was it the day before.  We had shaved him bald in anticipation of it falling out before he came to Hershey, but it had already grown back, as it grows fast.  We thought he was going to keep it.  Then 21 days after chemo started, it just started to fall out allover his pillow.  So, because it was making such a mess, and was only there in patches , we got out the electric razor, and once again made him a baldie.  I will have some pics to add later on.  I can't add them yet, because I can't put them on this computer, but I will do it on mine when I get home.  

Home.  Someday we will get home.  My real home.  Where I can sleep in my own bed.  And see my kitty.  And my Dad and Mom and Valerie.

So what's been going on with me?  I have been alright.  Some days are easier than others.  A few days ago I felt a little overwhelmed.  A psychiatrist that was checking in on John at day hospital told me I needed to take a "caregiver's break" and asked me who I had reserved to fill in for me.  I just about burst into laughter.  I told him "no one".  Who would I get to relieve me?  Val has had a chest infection or something and there was no one else to take my place in taking care of John.  So Dr. Neuri told me not to worry, that I would make it, to just hang in there. 

The next day I was able to pull myself together and am now doing just fine.  As a matter of fact, John and I are having some fun when we get back from day hospital.  Days are not as long as when we were at the regular hospital.  We can come back to Hope Lodge and rest.  Yes, I am responsible totally for his care at Hope Lodge, with no nurses to help, but he is doing so much better.  So at night we just rest a lot.  And we have been watching the Olympics.  And just laying around, lol.  Don't get me wrong, there are a lot of chores to do, but I am making sure I am pacing myself.

Well, I gotta run now.  John says "Hi" to everyone, and thanks for the cards.  Love ya,  Krissy :) 

John is in the hospital

Hello.  Sorry it has been so long.  It has been crazy and I haven't been able to update.  And I still can only give a short one now, because I have to run back to my bedroom in case John or the hospital calls, in case John needs me.  He is having a rough time.  He is in the hospital now.  He has been in there since Monday, January 30th.  That is why I haven't made an entry since Sunday the 29th.  But it is a long story.  I can't tell it now, so I am going to get off here and get back by the phone in my bedroom.  I am at Hope Lodge right now.  I was at the hospital since 5:30 in the morning this morning because John needed me all day.  He only had twenty minutes of sleep the night before.  I will explain more when I can get on here tomorrow.  John has had high fevers, infections, graft verses host disease, severe cramps, etc this past week.  Okay, got to run, Krissy. 

Ups and Downs

Wow, what a difference a day makes.  When I called John up Saturday morning, the day after the transplant, he told me he had showered and eaten.  His voice sounded so energized and full of life.  He sounded almost like a different person than the day before.  I rushed over to the hospital, because he said the doctor would be in shortly to talk with us.  I was very surprised when I walked in to see him sitting up in the recliner reading a newspaper!  Yes, they said he would be weak and resting for several months, but he was doing so much better than the day before. 

I looked at the chart to check out his counts (his labwork).  His white blood count (WBC) was only 0.3.  John said the nurse had told him he was "severely neutropenic".  She also said the white cell count would fall even lower over the next few days.  Then it will probably start coming up in 10 days to 2 weeks.  

Being severely neutropenic means John can catch an infection at any time.  That is why he has to wear the mask all the time, except in the day hospital.  The nurses ended up telling him he ought to wear the mask at Hope Lodge also, until his white count comes up, which should be about two weeks.  

Anyway, John was doing so fantastic, that they discharged him from the hospital on Saturday!  He was able to leave, and he had lots of energy and a lot of color to his face.  They almost didn't discharge him, because of an insurance issue (where the insurance co. is denying him two meds that they promised they would pay), but the docs decided to let John out, and try to deal with the med/insurance issue on Monday.  I hope it gets dealt with, or John might be readmitted to the hospital on Monday again, because he won't have his medication.  

Now that was the up day.  Today (Sunday) was the down day.  John woke up exhausted.  The color in his face was gone and he was extremely fatigued.  We went to "day hospital" and they did some labwork.  The found out his WBC was 0.2.  His red blood cell count was pretty low, and his platelets were extremely low.  So he had to have a platelet transfusion.

He was concerned about having the transfusion because he thought he would have the shaking reaction again but they gave him a large dose of benadryl, and he breezed through his first ever transfusion.

We were at day hospital from 10 am till 2:20  pm.  When he got back to Hope Lodge, he ate a peanut butter and jelly sandwich and some fruit cocktail.  Then he went back to bed just about for the rest of the day, except to occasionally watch TV.  I got him up to take his meds occasionally and take his temp (which must be done four times a day).  And at 6 PM I tried to make him eat but he refused.  So I made him a milk shake with Ensure in it.  I am sneaky.  To get him nutrients I mixed Ensure in with the ice cream!  And blended it up.  He loved it.  Not that sneaky, I told him what I did, lol, before he drank it.  But that is all he would have for dinner.  He refused to eat.  The doctor says that if he does not eat enough he will have to go on a glucose IV instead of eating.

How am I doing?  I am having little spasms in my legs from sitting too long in the hospital rooms.  I can't go too far for walks because I can't leave his side.  I am afraid that my legs will spasm into charley horses any day now, which is SO painful, and has happened before.  I just don't want it to happen while I am driving, and wreck or something.  This is something silly to pray for, but please pray for my legs.  Thanks.

How else am I doing?  Holding up great.  Doing a lot of work for John. And emotionally fine.  It is nice to have him home from the hospital so we can have time together.   

Well, I am extremely tired now.  And John and I have to get up at 6:30 am to be at "day hospital" on time   tomorrow.  So I had better get off.  I love each of you. 

Krissy :)

The transplant took place

Yesterday the transplant took place from 11:45 till 1:45 am.  Dr. Claxton gave John two bags of stem cells.  The first bag took one hour.  Then he had a fifteen minute break, and the second bag took 45 minutes.

The reason why he had a 15 minute break in between is because he had a reaction when the first bag of stem cells were going in.  It is something called "flushing".  It is when you turn very cold and you start to shiver.  It was very hard to watch him shake so violently.  I mean he shook so violently, like he was having a seizure it looked like.  The doctor and nurse looked concerned at points.  He shook more violently and then the nurse gave him a bag of demarol to make him stop shaking.  Awhile after the first bag of cells went in, the shaking stopped.  Poor John, he said that he had strained his muscles.  He had strained the muscles in his back, shoulders, legs and arms.

The second bag went in very uneventful. 

When done John suddenly felt EXTREMELY wiped out.  He said he felt like he had no blood left in him.  Like they had drained all the blood out of him.  This of course is par for the course; he should be extremely tired for six to nine months at least.  After a little while he said he felt some better though.

I am making this sound somewhat dreary.  They said he is doing excellently.  They may even release John from the hospital this weekend and just have him go to day hospital everyday.  He will just go to day hospital every morning (probably 9 am till sometime around 1 pm) and then be released to come back to Hope Lodge.  They will be checking out everything on him when he goes to the hospital, doing all kinds of tests.  And then he will come back to Hope Lodge everyday.  Then he will get back in bed.  He will be doing this for months.  Just day hospital and bed.  But the staff said he has to come to the dining room to eat because the bedrooms are sterile.  They said if he can't make it to the dining room, then he belongs back in the hospital.  So it will be hospital, bed, and dining room for months, that isit.  And whenever he leaves Hope Lodge or the hospital he has to put on a mask.  He doesn't have to wear the mask in the hospital or Hope Lodge though.  But we are debating whether or not he should wear a mask at Hope Lodge.  Because there are a lot of people who cough a lot here.

Let's see.  What else.  The nurse told John he was blood type A positive, but after the transplant would be O positive.  You take on the donor's blood type!  How about that!  

Well, that is about it.  How am I doing?  I think I held up exceptionally during the transplant.  I was really there for him.  I stayed there all day to be with him, and some of the night.  Then he told me to come back to Hope Lodge and get some sleep.  

I feel pretty good.  On the other hand, I feel like crying, but tears won't come.  It is hard to see someone so healthy be made sick.  I know he needed to have this done to stay alive, but it is hard to see someone who looked so healthy be made sick, so he can become well again.  I am doing well, but am kind of numb, and my Sissy Val said tears will probably come in a few days.  She said it will be normal, because I watched somebody I love, my husband, hurting.  

I am grateful he had the transplant though, praise God he has this chance at life. 

Things are going to be just fine, there will just be a long road of recovery ahead from John.  But he is tough and a fighter and a trooper.  With a great positive attitude.

Thank you all for your prayers, and your words of comfort, and your cards.  They mean everything to me.

Love, Krissy :)        

Transplant is tomorrow!

What a difference a day makes.  Today I pulled it together and was fine.  I was really there for John.  I know the transplant is tomorrow and I need to be okay for him.  So I am.

I came into John's hospital room this morning and found him in bed.  He was really weakened today.  That is because his white blood count is only 0.3.  That is what his chart read.  It also read that his red counts were low, but not quite as low to require a blood transfusion. 

At about 3:30 Dr. Drebik came in to talk to John and me.  He said it was normal for John to feel wiped out and be lying down, and that he was still doing well.  He also explained to John that after the transplant, when John's immune system first improves, it will be John's cells that will be there, but then the donor's cells will take over by two months. 

After the doctor left I took some pictures of John.

Then the nurse came in and explained John's transplant that he will have tomorrow.  She told me to be in at 8 or 9 in the morning so I will be ready when the transplant will take place.  It will be some time in the morning.  They will actually let me be there!  It will take about one hour.  The cells will arrive tonight by plane .  They will get here tomorrow at the latest if the flight is delayed.  During the transplant we will all wear masks but John.  After the transplant, when John is finally discharged from the hospital, he will have to wear a mask all the time (except when he is in day hospital). 

During the transplant the stem cells will drip from a bag hung from the pole.  That is how most transplants are done nowadays, instead of injecting the marrow into the bones.  The stem cells will merely drip from a bag hung from the pole, down the tube, and into his chest port, and into his veins.  Somehow, the stem cells just know where to go!  That is what doctor Claxton tells us.  Dr. Claxton will be there the whole time, making sure everything goes smoothly.

How is John doing?  Remarkably well.  He is taking one moment at a time.  A little concerned about getting an infection, but ok.  A little sentimental about life.  But I think that is normal.

How am I doing?  Better than I thought I would be.  But I love John so much I didn't want to leave his hospital bedside tonight.  I made him promise that if he needed me tonight, or wanted me, to call me, and I would come back to the hospital and be by his side.  He promised, so I left.  I love him so much.  

Bye for now, Gotta get some sleep, tomorrow is the big day and things will never be the same, Krissy. 

  

John's hospital stay

Wow.  It's been awhile since I did an update.  Of course a lot of my time is consumed with being with John at the hospital, and I have not had time to do entries as much as I had wanted.  Here is a synopsis of how things have been since John entered the hospital.

Friday - John was admitted to the hospital.  He was started on chemo.  Two different kinds.  And some immunosuppressant drugs.  If I understand correctly, these are to kill his diseased cells, so when the new stem cells are introduced (when he receives his transplant), eventually he will become disease free.  Something like that.

Saturday - John felt sick today.  Very nauseous.  Headaches.  But he was still a real trooper.  He sat up in his chair all day, and he also went for walks up and down the unit hall when he was stronger in the morning.  He insisted on wearing his jeans and shirt and stayed dressed instead of wearing a hospital gown or pjs.  He continued his chemo today.  

Sunday - John felt a lot better today.  So much so that he helped the nurse decorate the unit for Valentine's Day, lol.  She had him out of the room and up and decorating!  He hung red hearts and other decorations all around!  He was quite the creative one.  He continued his chemo today.

Monday - John looked pretty weak, but his attitude continued to be great.  He had chemo again.  I hated to see him so weak.  

Tuesday - John continued chemo today.  He was also attached to a pole.  He was hooked up from the pole to his chest.  The pole has a line (tubing) that runs down it and goes into the chest port in his chest.  He has about four bottles of liquids that are dripping into his chest.  He has saline solution (or some kind of salt substance, lol) and he has immunosuppresant drugs running through the tubing into his chest port.  On Tuesday they hooked him up to the pole 24 hours a day until he leaves the hospital.  

John's hair is growing back at an extremely quick rate!  We made a joke about how he could donate his hair to the Hair Club For Men!

John was 248 lbs. when he entered the hospital.  On Tuesday he weighed 231.  That is a loss of 17 lbs. if my math is correct.  Sheesh.  They told him eat like crazy for nourishment, or he will have to go without regular food, and get hooked up to a glucose IV.  He was starting to have trouble eating a lot of food, because he says the food tastes yucky and sometimes bitter (this is a common side effect of chemo).

John got an ulcer on his tongue and a sore throat.  Sores on your tongue and sore throats (and even sores in your throat) are common for high doses of chemotherapy.  Hopefully it won't get worse.

The psychiatrist came and said John is doing great mentally.  His attitude is so good.  I am so proud of him.

Today they put up a chart on John's labs.  It showed the labwork (blood counts) that they had drawn on him all week.  One of the counts was his white blood count.  I sat there shocked when I saw it.  Normal white blood count is something like 4.8.  His was 0.6.  That is almost 0.  They told him they wanted to get him down to 0.1 or 0 I think.  That is why they are giving him the chemo and suppressing his bone marrow.  It is killing his disease.  I knew it was going to happen, but it is a shocker when you see it happen to your loved one.  It will ultimately make himbetter, but they are making him SO weak.  

On Tuesday night after visiting John at the hospital I went back to the Hope Lodge and cried.  I feel like my body is breaking down some.  My muscles hurt.  It is so hard seeing him hooked up to that pole with the tubes going into his chest.  And with all those bottles of fluid hanging down.  I thought I was so strong, but I am not.  Crying was all I could do. 

Wednesday - Today John had general malaise.  He was finally very weakened by the chemo.  They did not make him have chemo today, and will not make him have it tomorrow (Thursday).  They are giving him two days off of chemo before the transplant on Friday.  Even though he was weak, he still showered, got dressed, sat up in his chair, watched TV, and chatted with me.  I am proud of him!  The doctor said he was still their star patient!  

I wish I could say I was the star caregiver today, but I was not.  I had to leave John early tonight, because I thought I was going to throw up.  I felt so nauseated while visiting him.  I also started to get a little down.  I was there in the hospital room, looking at him hooked up to the pole (and ill), and waves of nausea overcame me.  And waves of sadness.  I know this is the thing that will save his life, but it became too much for me to handle right then.  I asked him if he minded I go.  He said go ahead.  I feel extreme guilt about it but there is nothing else I could do.  I needed a change of scenery, and I couldn't get sick on their floor.  Yes, it was that bad.  Now, I must get a grip on myself, and fast.  Afterall, I need to be there for him for the next several months.  Am I normal, or am I insane?  

Bye, and sorry this was so long, all my love,

Krissy   

John's mailing address

Hi everyone!  Here I sit at Hershey Hope Lodge at six something in the morning doing an entry.  The computer is fine here, it has been fixed.  So now I have a working computer. 

There is so much I want to talk to you all about; it has been a long time since I have made an entry.  But I don't want to make this entry too long.  So I will try to divide the entry over a couple of days.  The first thing I want to do, however, is give John's address where he can receive mail.  Please send all mail to this address where I am staying, and I will bring it to John while he is in the hospital.  

John Knox
c/o Hope Lodge
125 Lucy Avenue
Hummelstown, PA  17036

I will be receiving mail at the same address, just address it to Krissy Knox. 

Now a little bit about what has been going on, and John's schedule.  We arrived here at the Hope Lodge on Wednesday.  On Thursday John had his chest port put in.  He immediately had a problem with it, and we had to go back to the hospital, and he had to get it fixed.  Then on Friday, he was admitted to the hospital.  He received his first round of chemo.  He received chemo on Friday, Saturday, and Sunday.  He will get chemo today (Monday) and on Tuesday also.  Then they will give him Wednesday and Thursday off.  Friday will be the transplant! 

Well, that is about the skinny of it.  I was going to write a lot more, but I think I will save it for tomorrow, because I don't want this entry to get too long.  I will say, however, that John is doing very well.  He was sick the first few days of chemo, but yesterday was doing fantastic.  He has a very positive attitude, and lives "moment by moment", so that he doesn't get overwhelmed.  I will let you know more about how he is doing next time I write an entry.

I am doing fine.  Sometimes it is really hard though, especially when I see him sick (like he was during the chemo), and knowing there is not much I can do, except be his cheerleader, and take care of him in any way I can.  

Sometimes I have to get away, and not be at the hospital every minute, so I don't burn out.  It makes me feel a little guilty, but then on the other hand, I couldn't be any good for him if I was having burn out.  So I go for walks around the hospital, and go to the "family lounge", or go downstairs and get a frappuchino at Starbucks.  And sometimes I go back to the Hope Lodge and play Tetris or something, lol.  John even tells me to leave the hospital sometimes.  A former BMT patient told me sometimes that the patients need to be alone sometimes, they need their alone time to heal.  To work through some things in their mind.  This made sense to me.

Well, I better get off of here.  This is getting longer than I wanted it to, lol.  

I love you all lots, Krissy :)         

Hi!

I just wanted everyone to know that I found a computer that I can use on a regular basis to write in this journal .  It is in a lounge in the hospital.  So now I can give you all updates.  It is late now, and I have to go back to the room and help John with his chemo treatments, so I can't write much tonight.  But I will try to make sure I do an update tomorrow.  There has been so much that has gone on since we got here on Wednesday.  When I update next (hopefully tomorrow), I will give you the address to Hope House where John and I can receive mail.  That is where we will both be receiving our mail.  Well, I must get back to John.  I love you all.  

God bless, Krissy  

Computer may be out of commission for awhile

Hi!  John and I are here at Hope Lodge now.  We got here yesterday.  It is a wonderful place.  It is a very homey atmosphere.  Everybody shares the home, but at the same time you get your own room, which is like a hotel room, so you can be alone in your room, when you want privacy.  We couldn't ask for anything more by way of comfort.

There is one problem, though.  The computer may be infected.  They are checking it out.  So I don't know when I will be able to do an entry next.  If I can't do another one for several weeks, I hope you will understand.  When I can come back on, you will see another entry from me.

I haven't found out if I can get mail here at the Hope House yet.  When I find out I will let you know.  It may not be until this computer is fixed though.

Hope you all are doing well.

Love you all very much, Krissy :)

PS.  John gets his chest port put in today and starts chemo tomorrow.   

Transplant next week, finally

I am so tired right now.  I have been packing all day.  I don't feel like writing this.  But I have important news.  John and I are leaving for Hershey on Wednesday or Thursday.  And he will be admitted to Hershey Medical Center on Thursday or Friday.

We are going up one day early to get settled into Hope Lodge.

Then the next day, either Thursday or Friday, he is going to have a chest port put in.  He will have to have an operation to get this inserted.  It is a tube that goes into a vein in his chest.  He will receive fluids in it, blood transfusions if he needs them, the transplant through it, etc.  He will also have blood drawn through it.  The purpose of having a chese port (central line) is so that he will not have to be stuck repeatedly with needles.  The chest port will be left in for several months.  

The day after he has the chest port put in he will start chemo.  He will have chemo everyday for about four days. 

The next day John will have the transplant.  He will be lying down and there will be a bag that will drip the donor's bone marrow cells into his body through the chest port.  They tell us that somehow the bone marrow cells just know where to go in the recipient's body!  Wow, modern medicine!  

After the transplant is completed, John will go to the Transplant Floor.  He will remain there for several days while he recovers.  

When John is feeling well enough he will begin day hospitalization.  He will stay with me at night at the Hope House.  This could be for a couple of months, I don't know how long it will be.  It depends on how fast he recovers.  At first John will go to day hospital everyday, then eventually every other day.  The Hope House will let us stay as long as John is going to day hospital every other day.  Once it turns out to be every third day, we have to move out.  If this occurs, we are going to have to get a hotel, because we cannot drive back and forth to Hershey every three days.  We are going to have to play that one by ear when the time comes.  

So, I am going to keep you all informed though this journal.  I should have access to a computer when I get to Hope House.  I will try to write entries when I can.

Well, I am feeling pretty positive, considering.  and kind of nervous, lol.  The Lord has everything under control, I know that.

John is holding up quite well.  He is my trooper.

Oh, I shaved John's hair off today.  Well almost all off, just left the tiniest fuzz on.  Most people who are going in for a transplant shave it off beforehand.  That way they feel more in control, they don't have to watch it fall out in clumps after their chemo.  They don't get upset seeing clumps of it lying on their pillow falling out piece by piece.  This way THEY take it off.

I thought hair didn't matter.  And really in the scheme of things, it doesn't.  But seeing him kind of shocked me.  Maybe it made me realize that things would never be the same.

Okay, I will stop being philosophical now.  Change is NOT always bad. 

I better get off here before I get to ramblin', lol.

Talk at you soon, hopefully.  God bless, Krissy :) 

highs and lows

I'm pretty tired.  We got back from Hershey tonight, a few hours ago.  Yes, we went today, as well as yesterday.  John went yesterday for an appointment and tests.  And because John's local oncologist never set up the tests John needed locally, Hershey asked him to come back today too.  So it was two days at Hershey (Thursday and Friday).  This was difficult because it was six hours driving time a day, with a full day of appointments and tests.

It has also been exhausting emotionally.  On Thursday (yesterday), Todd, the nurse coordinator met with John and told him he had a date to enter the hospital for his transplant.  He told him it was Wednesday, January 11th (this Wednesday coming up).  He was to enter the hospital on the 11th, get the chest port (central line) put in, and begin chemo.  After several days of chemo he was to have the transplant.  Wow!   January 11th.  After hearing that, we were in a state of, well, part shock, and well, part being very happy, because a date was finally picked, and there would be no more indecision and waiting. 

Well, this morning, we got up at 3:30 AM, got back on the road, and came up to Hershey again.  The first test was very early in the morning.  Talk about tired, I was exhausted.  Getting home late yesterday and going so early this morning was so tiring.  Anyway, John's final test was at 3:00 PM.  He was taking a Pulmonary Function test when Todd walked in.  "Hi Mr. Knox," he said when John was finished.  John looked at him.  "Things have changed," said Todd.  "The donor is sick.  I can't tell you what it is, but let's just say this is flu season, and it is not unusual for somebody to get flu this time of year." 

"I don't know if this is good or bad," said John.  He was thinking that this would give him more time to get ready, and to do things that needed to get done; on the other hand, he was all prepared in his mind to go in the hospital.  "It is indifferent," said Todd.  Todd told him the hospital entry date will nowbe pushed later into January a week or two.  That pushes the transplant back.  Todd told him that he would call John at least a week before he is to enter the hospital.  So now we are back to another waiting game.

Wow, highs and lows in a two day period.  But it is ok, because this will give us more time to get things done.  At least we know this donor exists and he is willing to participate.  Please pray for the donor, that he get well soon, and for whatever needs he may have in his life.

That's about it.  Love you all, Krissy :)       

A little bit nervous

I'm frustrated.  Here it is Wednesday, and John and I still don't know the exact date of when the transplant will be.  Todd, the nurse coordinator, called me Monday morning and told me that he would tell me very soon when it would be.  He said that he might be able to tell me that very day or maybe Tuesday.  He was waiting for the donor to get back with him and let him know when he could get off from work to donate his bone marrow.  Here it is Wednesday night and no word.

I don't blame Todd, I don't blame the donor, I don't blame anybody.  Why should I?  Maybe the donor just can't arrange time off from work yet.  I am just scared is all.  My mind is getting away from me.  I am thinking, what if the donor has changed his mind?  I won't be one hundred percent settled until I hear that the donor has a date set that he will donate, and that there is a date for the transplant, and a date for John to enter the hospital.  Then I will relax.  I know I need to trust God, but it is hard to be in my position. 

Another thing that is frustrating is that some of the tests that John were supposed to have done locally were never administered to him.  He was overlooked and he fell through the cracks.  He called three days in a row this week, and they kept saying things like, "Oh, we stuck your orders in your file, we will pull them out, so we can have those tests done."  The next day John called and the nurse said she would check and see what was going on and she would call him back.  She never did.  Same thing with today.  If these tests aren't done John can't get the transplant.  They have to be done and read in time for the transplant.  They better get on the ball, as we don't want the transplant to be delayed over such ineptness.

Speaking of tests, John and I are returning to Hershey tomorrow so he can get another bone marrow biopsy.  They are going to do "staging of his cancer" so they can have a baseline for the future after the transplant, to see if he is cured.  

I have decided to be in the room with him, because he asked me too.  Maybe I shouldn't do it this time, but he really wants me to.  So I just won't look.

Well, that's enough for now, I gotta go, John and I are going to have a chocolate cake with cream cheese frosting.  It was his birthday yesterday and we want to celebrate.  We also rented a movie.  It should be fun!  He is 44.  I will come back after the appointment tomorrow and let ya'll know how it went.

Blessings, Krissy :)