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.