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... 


  1. I'm glad that you guys are hanging in there.  I will continue to keep you, and John in my thoughts and prayers.

  2. glad you both are doing well enjoy your dinner tonight


  3. Good to hear from you.  I hope each passing day brings John closer to good health and your homecoming.  Sending good thoughts and prayers.

  4. HI Krissy,
    Good to hear from you.  I hope they get the computers fixed at Hope Lodge and hope you have a great Italian night.  Sounds fun.  
    Take care and I hope you do not get too bored either.  Will say prayers for you both.

  5. Hi Krissy, it`s great to hear from you.  I`m glad that John is continuing to do well and that you had such a good time on St Patrick`s Day.  And now you`re having an Italian night too, have a lovely evening both of you.  I hope the computer at Hope Lodge is up and running soon.  Take care. :o)

    ((((hugs)))) Sandra xxxxx

  6. Hello my friend, sending lots of {{{{{hugs}}}}}. Miss you. Have a lovely evening and rest of the weekend. Think about you and John lots, say hello from me please?
    Love Sylvia xxx

  7. Hya Krissy and John, your St.Pats day was good, corned beef and cabbage, brilliant.  You're allowed to worry but it sounds like you're both doing well and focused on getting well and getting home.  It's good to have an update.  An Italian day sounds like fun.  (((((((take care both))))))))Rache xxx

  8. Krissy, thanks for the update! I would imagine it would get boring waiting for appts and waiting until its time to be able to go back to your own place. Happy to hear you are both hanging in there. Amazing it will soon be two months from the transplant. Hope in another two months you will be back home!


  9. Good to hear things are still progressing satisfactorily, all things considered. It's a long road, but going well by the sound of it. Keep the spirits high!

  10. Glad to hear you and John are doing well.  You played Monopoly?  How cool is that!!!!  Although I loved the game, I wasn't a very good player.  I always went to jail, never passed go, never collected my $200.

  11. Oops...  Almost forgot.  Happy St. Patrick's Day.  *pinch*

  12. Glad to see an entry from you !  Your St. Patty's day sounded great. I'm so happy to read that!!!


  13. I'm glad you got some diversion.  You can't forget to have fun and keep and Irish-like smile even in the most difficult of situations.  Irish blessings on you both.  (I can't give Italian ones since I'm not!)
    Love, Kellen O'Grady

  14. I'm so grateful that things are going well and that you're able to keep up such a positive outlook on things.  Just take one day at a time - 'On Ya'- ma

  15. I am so happy all's going well with John...and very happy your St. Paddy's Day went well too...hugs and love as always,

  16. Glad things are going so well for John.You'll soon be home now just hang on in there.Thinking of you.

  17. glad things are going well for you, it wont be long now, god bless you both.......Jules xx

  18. Its nice to hear you are having a bit of fun too.I hope things continue to get better and better until you are both home.You are a little Angel to your John Krissy. . .God bless you both.

  19. That's funny - Italian Day! LOL  Wow, you got to have corned beef and cabbage, that rules!  I did go out and buy some Irish soda bread at Weis, sissy.  I didn't wear green, but I DID get the bread! LOL  Gotta love that Irish soda bread!  Yummy it WAS!!  I'm glad you guys had the diversion you did on St. Patrick's Day and, um, Italian Day.  Of course you won Monopoly ;-)!!  Love you!!!!!!!!!!! YTP xox

  20. So great to hear from you!! Glad John is doing so well!! I'm sure it must be hard to be away from home for so long... You're always in my thoughts, so know you are not alone...
    What a great St Patrick's Day!!!
    Happy Spring!!
    Linda :)

  21. Hey girl!  Glad you're keeping us posted.  Glad to hear all is going well and that you are able to have some fun!
    Take care.

  22. glad to hear from you and hope everything goes alright


  23. We had a St. Patrick's Day Celebration!  First we had a big meal together

    ooo that sounded like soooooo much fun....yes pototo candy is made of alot of sugar and i tatar lol ...i only can eat of or two pieces at a time but sooooooo dang good lol... sweeeeeeeeeeeeeeeet