John's MDS isn't back!

Well, it's been crazy lately.  I haven't written in awhile because John was hospitalized again.  He spiked a fever.  I think his official diagnosis this time was infection of the blood.  He also was/is having problems with his kidneys.  At any rate, he is out now, and is doing a lot better.  He has to go to "Day Hospital" everday for a week or two and then we will see what happens after that.  Who knows, maybe we will actually be able to go home.  We shall see.

So today is a Red Letter Day.  Dr. Claxton came into Day Hospital today and told John that his MDS was NOT coming back.  Praise God!  His marrow is still thin but Dr. Claxton thinks it is from something else, maybe the meds he is taking...

Well, a lot has happened over the past several days, but I am too tired to write about it, and I have to get up at 7:30 AM to go to Day Hospital with John.  Don't worry, I haven't been up all night, I just woke up and decided to come out here and write this, LOL.  I wonder how long Day Hospital will last tomorrow.  Or should I say today.  Yesterday it lasted six hours and forty five minutes.  They had to put a new PICC line in John's arm because the old one stopped working.  So they did a little operation right there in Day Hospital.  It was called an "Exchange".  And John had a lot of other things done too.  He was kind of chipper today, because he got two units (two bags) of Red Pack Blood Cells yesterday.  Oops, I said I was not going to go into everything tonight, LOL. 

Well, hope everybody is doing OK.  Keep smiling!  Krissy :) 

Would you like to be a reader?

Hi!  Just wanted everyone to know that the Monday Morning Question will be hosted by Val at There is a Season.  The Photo Scavenger Hunt postings will be there also.  So will next week's topic for the Photo Hunt.  Please stop by Val's journal!  Thanks Val for helping me out with this while I am with John as he gets his hospital care.

I just wanted to say that I noticed that this journal looks like it is turning into a medical journal.  I never wanted it to be that way.  I want to talk about some cheery things sometimes too!  I don't want to go into so much detail about John's illness here.  While I want to keep everybody informed, I also don't want to go into full detail.  Just the highlights when something really important happens.  So what I was thinking was that I would go back to writing more about John's MDS in the private journal.  So I wanted to invite whoever is not a reader of my private journal, John's Journey With MDS, to let me know, so I can add them as a reader.   Just leave a comment below saying you would like to be added as a reader and I will add you. 

Well gotta run.  Day Hospital comes early.  Night night.  Krissy :)

Way too stoic

Okay, I just read that last entry.  I sounded way too stoic.  Like I didn't need you all almost.  I just wanted to say that wasn't true.  I need you terribly.  It is very rough right now.  I was just trying to convey to you all that I wasn't devestated, that I will go on somehow, if it turns out to be true that John needs another transplant.  Because I MUST for him.  But yeah, I got a lot of needs too.  And a lot of hurts.  I cry at night.  That's about it.  Krissy   

Yikes

I promised you news about how Thursday's appointment with Dr. Claxton went...  Well it was mixed.  First the good news.  It looks like the Cytomegalovirus is getting under control.  Which is a good thing.  Somebody at Hope Lodge died from it here not too long ago.  Scary thing.  I didn't know how serious CMV was for a transplant patient until people around here started telling me...  Anyway, John is doing so well, they might discharge him to home after awhile.  I mean our real home, not Hope Lodge.  Which means a home nurse, with of course, me helping.  Which means I would probably have to do home IVs.  Not just the CMV IVs but also fluid IVs.  It could take up to four and a half hours a day of IVs! 

Now for the bad news... the doctor told us John's marrow was "hypo-cellular".  This means that he doesn't enough cells in his bone marrow.  And his counts right now are HORENDOUSLY low.  What does all this mean?  Well, it means that his MDS/bone marrow cancer might be back.  Yep.  What does that mean?  That he would have to have another stem cell transplant.  Now it is not definite, and PLEASE everybody, don't send him cards or anything, telling him you feel for him!  We are not going to assume unless we are sure.  We are just going to wait and see what happens.  He has another appointment with Dr. Claxton in three weeks...

Well, I guess that is about it for tonight.  For those of you who are worried about me, don't be.  I am alright.  I will get by.  I always do.  

Krissy  

Another Day

For this week's Monday Morning Question, please see Val's journal There is a Season.  The next subject for the Photo Scavenger Hunt is listed in Val's journal also.

I haven't done an entry in awhile.  The computer at Hope Lodge here was dying, and almost out of use.  But tonight we got a new one!  I can't believe I am using a brand new computer at this very moment!  

Things are OK, I guess.  John is doing OK.  He gets tired a lot, but is hanging in there.  He goes to Day Hospital every day, and then we are together at Hope Lodge at night.  It is very nice here at Hope Lodge and we are all like one big family. 

John goes to Day Hospital in the morning and gets a lot of bloodwork drawn.  Then he is given a lot of fluid via IV.  Then his creatinin  (kidney function) levels are taken.  He has been having a lot of problems with his kidneys.  The medication he has been taking for the Cytomegalovirus is making him have the kidney problems.  Every day he is given a test, and if his creatinin level is too high (his kidneys are not functioning properly), he is not given the CMV medication.  Because the CMV med hurts his kidneys.  If the creatinin level is low enough, he is given his CMV med (Foscarnet).  It is a balancing act.  They want to give him the medicine to get rid of the CMV virus, at the same time, they don't want his kidneys to fail.  So they are making some tough calls.

So those are the medical facts.  How am I doing?  Fine.  I am waiting for John's appointment on Thursday with Dr. Claxton to see if he is going to give us any more information on John's bone marrow biopsy he had a few weeks ago.  I still want to know what caused the "thinning marrow".  It is probably just the CMV but until I know for sure I will not rest easy...

Let's see.  What else is new?  We had a fun Mother's Day Party here on Mother's Day.  And BTW, for those of you who sent me Mother's Day cards, I am not a mother, LOLOLOL...

Well, gotta run, Krissy :)  

Four more weeks here

Hi ya'll.  I thought I would do an entry before I went to bed.  I just wanted to let everyone know that the plans regarding John have changed once again.  He was discharged from the hospital tonight.  But instead of going home and getting care from a nurse at home where we live, John and I will be staying in Hershey for four weeks.  Yes, I said weeks, not days, LOL.  He will be going to Day Hospital during the day and then coming back to stay with me at Hope Lodge at night, just like when he had the bone marrow transplant.  I know four weeks is a long time, but I am glad that the hospital made this decision.  I like the fact that they will continue his care at the hospital.  It is the best place to do it.  And he is still having some complications and his counts are still low.  He is still kind of weak.  And he needs his anti-viral medication everyday for the next four weeks.  So I think all around this is the best way.  I wasn't prepared for this, but it is ok.  When they first told us, I was pretty shocked, but I do feel good about it now...

Hope everyone is doing well.  Krissy :)         

John and my first Anniversary!

Hey ya'll.  Hope everyone is doing well.  

Happy Anniversary to John and me!  Our first!  The nurses and medical persons threw an anniversary party for us in John's hospital room today!  They brought in a cake top for us to share, a red heart balloon tied to a bag of Hershey's kisses, a card that they had all signed, and a plastic rose (transplant patient's can't be around live plants) for John to give to me.  Then they shut the door and gave us some privacy.  We ate the top of the cake and pretended it was our wedding cake top, LOL.  And we exchanged cards.  Of course I had to buy the one he was to give to me from the gift shop downstairs.  "You have good taste in cards!," I told him.  "How did you know what I would like?"  "Oh, I just knew," he said.  So we had a really nice anniversary despite the fact that John was in the hospital.  I love that staff.  You should have seen the look on our faces when they came in singing "Happy Anniversary To You" and donning the big, shiney, red balloon, and red rose wrapped in tissue paper!  The whole staff!

Then after awhile they came in to take vitals (blood pressure, tempature, etc.) and give John blood and it was back to the usual. 

Dr. Claxton made us feel a little better today in explaining that he really believes that the thinning marrow is not MDS but the Cytomegalovirus (CMV) that John has.  And perhaps one of the medications (Cellcept) that he is on.  So Dr. Claxton took him off the Cellcept and lowered his Prednisone.

Dr. Claxton said that after John leaves he will be on the medicine for CMV (the med will be Foscarnet) at home for a month.  That means I will have to give John home Foscarnet IVs myself.  I hope the nurse will come give care also.  I am sure she will, as she will have to do labs.  I am not confident doing many of the new duties, as this is a new kind of central line (a PICC line instead of a Hohn), and I don't even know how to flush it or change the bandage, nevertheless how to do an IV yet.  So they BETTER give me a nurse! 

Well, enough of my rambling.  I need to finish something and get back up to John.  I wanted to tell everybody to remember to go tomorrow morning to There is a Season for the Scavenger Hunt and the Monday Morning Question.

Love you all, Krissy :) 

7 - 10 days

Happy Cinco de Mayo!  I hope everyone has a good day today, and a good weekend.  I wanted to correct a mistake I noticed I made.  I said John would be in the hospital 7 - 10 weeks.  I meant days.  I hope it won't be any longer than 7 - 10 days.  Sorry for the scare.

Yesterday was a Red Letter Day for John.  He walked the hall for the first time in a week.  He also sat up in a chair three times for ten minutes at a stretch.  His abdomen still hurts him a lot, though.  The doctors came in today and told him the test results have not come back yet.

The nurse that is taking care of John's PICC line told John that he was allowed to shower.  She proceeded to tell him how he was supposed to do it.  He was supposed to take his arm and stick it in a bag that the newspaper comes in in the morning.  Then he is supposed to tape it up at the end of the bag.  Then he is supposed to stick his arm straight out of the shower stall while he showers, LOLOLOL.  She didn't tell him if he should sing, LOL. 

Well, I gotta run.  I have to finish my laundry, go shower (sans the newspaper bag), and catch the shuttle to the hospital to go see John.  I am only going in so late this morning because I wanted to do my laundry this morning and you can't use the laundry machines here at Hope Lodge until 8 am.  Staff is concerned you might wake someone up.  So now that my laundry is almost done I must scoot.

Love you all, Krissy :)   

Baxter the Pole

Wow, the days are going by and I haven't done an entry.  Today (Weds. night) I am finally slowing down enough to write.  There has been so much going on.  Today was one long day, but let me back up a little bit.

I don't know if I have mentioned this before, but John is in something called "Contact Isolation".  So when the doctors and nurses come in, they dress up in their "space suits" and gloves, and occassionally masks.  This is because they don't want to get his Cytomegalovirus.  And they wear the masks because they don't want to give him anything.

John is still feeling pain in his abdomen.  The doctors think it is from the Cytomegalovirus (or perhaps another virus).  That is why they did the Upper and Lower GI.  To find out what virus is causing the pain.  On Monday John got the GI but still hasn't gotten the results back.

Before John got the GI he got three bags of platelets because his platelets were too low.  John has named his pole that he is attached to "Baxter".  His last one was named "Freddy".  I asked him why this one was called Baxter, and he said because it said Baxter on the front of the pole.  Pretty sharp he is, LOL!  So at noon on Monday John had two bags of sodium, a bag of vanco (two kill the infection in his chest port), and a bag of platelets hanging off of Baxter.  Then when he was done with his platelets, off to his GI he went.  Unfortunately, John did not go into "twilight" like they had promised him, and he was awake for the whole thing.  

On Tuesday morning Dr. Claxton came in John's room to speak to us.  He said he thought John's main problem with his abdomen was not GVHD, but a virus, probably CMV.  He said the doctors found "inflammation" during the GI.  John could have told him that.  Because he was awake during the procedure, he heard the doctors discussing that they had found some things!  Dr. Claxton told John that he would be on Foscarnet (an antiviral IV) for at least five days to clear up any viruses he had.  He also said that John's counts really concerned him, and that John would probably bein the hospital another seven to ten weeks. 

The next thing that Dr. Claxton said made my heart sink.  He said he had some results from the last bone marrow biopsy.  He said that John's marrow is "thinning".  He said that it was "probably" because of the CMV infection.  He said he didn't "think" that the MDS was coming back.  But it "could" be the MDS coming back.  PROBABLY NOT, but COULD BE.  I guess if the MDS comes back that will mean another transplant.  OKay, so I am not going to jump to conclusions at this time, stay calm Krissy, stay calm.

OKay, so I could go on writing all night what has been going on the past few days.  So I will try to cut this short and just say what is most important.  I guess one of the most important things that has happened, and I don't know if I mentioned this yet, is that they took out John's  chest port (his Hohn).  The infection had been going on so long that the doctor's had to yank it out.  And then today they put in a PICC line.  A PICC line is a different kind of a central line than the Hohn he had in his neck.  But it is very similar.  It has two lumens hanging out of it.  They hang from his arm.  The doctor threaded the line up through his arm and into an artery above his heart.  I know how they did it because they had me in the room watching the whole thing for moral support for John, LOL.  I thought I was going to pass out for awhile there, but I held steady, LOLOLOL.

Okay, I have rambled on enough for now.  I just wanted to say that I am over at Hope Lodge.  And the computer has been fixed again so that is why you are receiving this entry from me in the middle of the night! 

Well, night night everyone, I guess, that's enough gabbin'.  Hope to be back soon.  Pray for me and I'll pray for you.  Krissy :)