Saturday, March 25, 2006

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 :)

Saturday, March 18, 2006

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...