T38

Well, today we had a blood draw, a nutrition visit and a team visit.  It was a full day, and we were feeling pretty good until we visited with the doctors - then we got hit with the news. 

They said this "is not jump up and down news, but it's not give up hope news either".   They were wishing for more from Donor 2 than there is, but there is still time.  They were also wishing for less evidence of MDS.  We will continue on this course, testing on occasion, checking the trend as we go.  It's the trend that will tell us more about what is really happening.

The peripheral blood tells us that Donor 1 (Dennis) is 49% Lymphocytes, Donor 2 (new donor from Europe somewhere) is 19%, and Host (Terry) is 32%.    The myeloid cells are majority Donor 2, but that isn't the number they are looking for right now.

The knowledge they have at this point is leading them to consider what might be done next to help improve the chances of success with this transplant.  We will hold tight for the next couple weeks, with more medicine changes and watching what is taking place in the blood.  By the way - one more medication was added today and tomorrow morning we go in for an infusion of another.  They will then teach me how to infuse that medication and I will infuse it here at the apartment each day thereafter.  As they test and learn more about the trend they will make new decisions and we'll follow the course they plan for us.  We are trusting them, but mostly we are trusting God.

Good news is that his hydration has gone from 1500 to 1000 ml, so it's down to 4 hours again instead of 6 hours a day.  We don't know how long the medication will take to infuse, but that will probably add infusion time to our days.  More news tomorrow.

Terry explained todays news like this -
The rabbit is ahead, but it's early in the race, and our hope is the tortoise prevails. 

We'll let you know what we find out when we find out. For now -

HAPPY NEW YEAR!



image from here

Puzzled

We started a puzzle last night and finished it this morning.  Strange thing - the photo on the box didn't show the whole puzzle.  It was ..., well ..., puzzling!

Here is the box - this is the picture we thought we were putting together -

But there was more to it than what the box showed.  Several inches on the right do not show up on the box.  That was tricky to put together, especially when we realized there were so many butterflies that didn't have a place on the box photo.  We got it though, and it was kinda fun!

The back side of the puzzle was black and it looked like I had been rubbing my hands on newspaper when I began putting the puzzle together.  It was a fun puzzle, but really different.

No appointment today, just puzzling the day away.

Last Sunday of 2013

We started the day with a walk to the clinic for blood draw.  It was a bit chilly, especially coming back, but the walk felt good.

No other medical news.  It's all about the same as yesterday - just trying to get used to the new meds schedule. 

We watched Ephraim's Rescue today - an excellent video!  We highly recommend it! 

Wow! It's already Saturday again!

This week went by too fast.  There was a lot going on ..., until today.  Today was a slow and easy day.  No appointments and most of the cleaning was done.  That's good, because it took our every focus on the medicines to get them on time and correctly given.  What a cupful he has at times.  Here is his 9:30am meds.  I can't see the dark blue pill down in there, but there is one ..., very dark blue.

It's crazy!  It seems that he is getting something every hour.   I suppose when we count his nasal rinses and his hydration connected and disconnected it really could be very close to hourly.  Other than keeping up with the meds today, it's been kind of a lazy Saturday.

Terry is feeling about the same and happy to not be throwing up.   

T34

We had an early 7:45 CT sinus scan this morning and then a 9:15 blood draw.  We waited about 50 minutes or more for the scan but arrived early for the blood draw and waited only about 5 minutes.  We picked up one of the new medicines and headed back to the apartment for breakfast. 

Our next appointment was at 1:00pm with part of the team. We learned that the change in medication grew.  This GVHD has changed a few things, so our meds schedule page looks pretty crazy right now as I have crossed out and added in all the changes and additions.  The CT scan this morning showed exactly what we expected - the sinuses are worse so medication has been added for that.  The cyclosporine is causing some blood pressure issues so he is beginning medication for that.   We must remember that this medication will keep changing and eventually be quite minimal but right now it is at it's highest.  I did a quick count and it looks like about 56 pills a day, plus the nasal irrigation 2 times a day and the liquid oil like medication 4 times a day. Some are to be taken on an empty stomach, some are not to be taken within two hours of dairy or magnesium, some with food.  It's so tricky right now! 

We ended up waiting over an hour at the pharmacy because of all of the changes.  WOW!   There are six in this bag and remember we picked one up earlier today.

We are back at the apartment and all is well.  Well..., as well as can be expected right now.  We rode the shuttle for each appointment today, coming and going.  It was too cold and wet today to walk. This is our ride as we look out of the first floor / lobby area of the clinic.  It felt and looked like it was just before sunset, but it was only about 3:40pm.  A bit dark and dreary.

Terry just finished one of his Christmas books - Glenn Becks Miracles and Massacres and I am finishing laundry.   For some reason this day has made us very tired and sleepy, so it can be over anytime now and not cause a problem here.    We hope you have a good one!

Update:

I didn't send Christmas cards or a newsletter this year, so for those of you wondering if I have forgotten you, please be reassured that I have not.  I just couldn't wrap my little brain around that right now.  However, I have thought about it often and have thought of each of my family and friends that I would send one too.  We love you and wish you joy and peace at this most precious time of year. 

My actions don't really show that I have thought about you, because I skipped two days of posting, but I'm feeling really guilty now and trying to repent.  I would also bet that you were busy too and may not have even noticed.  I hope that is the case.

I'm going to play the catching up game right now and share about the last couple days, but each will be in it's own post and will be back dated so that they will be in chronological order.    So go ahead and "go back" to see the added info and photos if you wish.

Saying Good-bye Again!

This was a busy day.  No appointments, but we filled it with other things.  One was thing that was overdue was cutting Anthony's hair.  I got it done, but it was tricky.  Terry's hair was harder to cut (a few days ago) because it was so thin. Anthony's hair was hard to cut because it was so thick and long.  It took a bit longer than usual.

Our family has all gone home again and we are missing them already.

I'm sneaking a photo in here from the evening of the 24th.  Elsie was so tired and she knew it was time to go home.   We know she enjoyed being here with us, and we enjoyed having her (and her family) here.  She was just at the end of a busy and nap free day.  Those are always hard days for little ones. (I'm not sure why I limited that to little ones - they are kind of hard for any age.)

Saying good-bye is always hard, but we are grateful for every minute together.

Terry didn't have an appointment today and as the day went on we noticed little bits of improvement.  We started a different nausea medication and we think that is working better.  He did a lot of reading this afternoon.  He got a few books for Christmas that will help give him something to do while he is resting and feeling less energetic.

I spent the last half of the day cleaning and doing laundry.  It was easier to do this time because I could use the dishwasher and I didn't have any shopping or shipping or baking to do (like I did the last time the kids left).  I didn't get all the boxes torn down for the recycling box, nor did I get the laundry done yet, but maybe one more day will do it.  I'm washing bedding to get it ready for the next visit.  We're already looking forward to it!

The whole apartment needed a good thorough vacuuming so I moved the tree to the extra bedroom.  I just wasn't ready to completely put it away.  I can still see it, and will be spending some time in that room as I wash bedding and tear down boxes.

We got a call from the nurse this evening, telling us the results of the endoscopy.  There were "erosions" or irritations that were seen and tested and came back positive for GVHD.  Terry does indeed have mild to moderate GVHD.  This necessitates a change in medication, so we've got four more medications to pick up and begin, and he only gets to stop taking one that he is presently taking.  The hardest news is that prednisone is one of the new meds and Terry doesn't really care for that one.

Now, as for news from home ...
The kids got home and began their daily chores only to find that Rose (our horse) had died while they were away.  She was maybe around 25 or 26 years old.  It was a sad thing to find, mostly because of the condition she was in.  It was a shock and disappointment.  I don't think they held a funeral service, but they did have to take care of the burial arrangements on their own.   We have zero pets at the moment.  Maybe we'll have to get a gold fish.  NOT!   No pets for us for awhile, because Terry can't have any.  Some day I'm sure we will get some cattle again when Terry's health allows.  Until then we will enjoy animals from a distance. 

Merry Christmas

It was a fun Christmas morning as we opened gifts from Santa. Santa did find us!

 

 

Terry wasn't feeling terrific, but we are happy that he didn't have to go to the clinic today.  We were able to stay home and be with family all day.

We enjoyed our phone calls from our missionaries and are able to report that each is well.  They are happy to be serving and love the area they are in and their companions.  It is always nice to talk to them, but it is always hard to say good-bye ..., again.

Though it has been a very different Christmas, it has been a good one.  We hope you had a great Christmas too.