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.

Happy Christmas Eve!

Our Christmas Eve day took a different turn that we expected.  We wanted to spend as much time with family today as possible.  Then yesterday happened!  ;)

I guess we did spend as much time with the kids as possible, but the throwing up yesterday led us into more appointments today, making less time available to us.

We headed out to blood draw at 9:00am.  We then had a consult with a GI doctor who decided that a endoscopy would be a wise thing to do today, so an appointment was made for 1:00 at the UWMC.  We were warned this might be the case, so Terry did not have anything to eat or drink after midnight last night.  The next appointment was clinic visit with the team.

We learned that the level of CLL/SLL in the marrow is down from 70% to 13%.  This is really in the range they expect, and the graft will continue to knock that number down in time. 

Blood counts continue to slowly improve thought they are still low.  Doctors are okay with everything that is happening, though they are wondering about the problems of throwing up yesterday, and would like to determine if it is GVHD or an infection of another sort.

Our next appointment was an x-ray and then we took the shuttle over to the UW for the endoscopy.  We learned that they did see some spots that could be GVHD or an infection, so they took samples and sent them for testing.  There was one spot that did not appear to be either, and the doctor took a sample of that and sent it away.  We don't know if the results will come tomorrow or the next day, but we will share when we hear.

We got back to the apartment about 3:00pm and the kids were out on an adventure.  When they got back we got dinner ready and opened some gifts.  It was so nice to be together and yet it seemed like such a short time together since most of our day was spent at the clinic.


Elsie watches a movie -

Auger, Akleigh, and Elsie enjoy some treats and some time together.

We are all crammed into this little apartment, but be assured that this little apartment is filled with love.

We opened gifts

 

 Auger is showing us his new tie

Elsie and Akleigh have their new scarves

Before we opened gifts we enjoyed a great dinner around the table with an unexpected centerpiece sent to us from a friend.  There have been many wonderful gifts sent our way and we Thank you!

Michael and Tawnee went home for the evening and Thomas and Dana stayed, (as did BJo and Anthony).

We took bon bons with us to give to our shuttle driver and nurses and doctors to wish them a Merry Christmas.   The Christmas spirit of giving was everywhere we went today and there were sweet surprises waiting here at the apartment for us from friends and from others we have never met but who want to give and share.  It is a most wonderful time of the year. We are grateful for everyone's goodness and kindness. 

Mostly we are grateful for the Savior ... the reason for this season. 
Terry is feeling better than he did yesterday and we look forward to better days ahead ..., some day!
 
We wish you a MERRY CHRISTMAS!

Oh What A Day!

It all started with some vomiting ..., yip, first thing.  Terry couldn't even take his medication it was so bad.  We called the clinic and got ready for an appointment.  We were admitted to triage where they gave him some IV nausea medication and some fluids.   I think we were there for a couple hours and then we were able to come home because he was feeling well enough to take his meds and keep them down.  He hasn't thrown up since we have been home, but he has been in bed for most of the day.  He isn't feeling very well right now, but we have a morning full of appointments tomorrow to see if we can figure it all out.  They told him that if he cannot keep his meds or foods down it will buy him a ticket to the hospital which he does not want.  

We were happy to have family with us today, but sad that Terry wasn't feeling well enough to visit much.  More family joined us this evening and we won't be able to visit much tomorrow, but we are so happy to see them and be with them as much as possible.

I went to bed before I wrote this and remembered that I'd better do it.  Now I can go back to bed and sleep better knowing that it's done.  Maybe if I tell you that I might forget tomorrow then I can sleep without having to get back up tomorrow.  Or, maybe I'll just get the job done.  Who knows!

Hoping for better days ahead ... Good night!

Sunday Guests

I did it again - I went to bed without posting about the day yesterday.  Sorry!

It was a somewhat normal Sunday, for our Sunday's here that is.  Blood draw went really quickly because there was no one else waiting when we got there, so we had no waiting time.

There is really no news, except that the day seemed fairly long because we were anxious for the kids to arrive that evening. 

They did arrive and we are happy to have them. Michael and Tawnee brought BJo and Anthony.  Thomas and Dana were coming today but Dana is not feeling well, so we don't know what will actually happen at this point.  I'm going to talk to the doctors this morning to see what their thoughts are.  It's so sad!

T28

Saturday is a special day, it's the day we get ready for Sunday ...

That is what we did today!  Along with cleaning and laundry, we added a few other things ...

I cut Terry's hair ..., finally.  He doesn't have much left to cut, and surprisingly that made it kinda tricky for me.  It looks better now and hopefully it feels better to him.  He has never had so little hair before - it's really thinned out a lot.  He's still handsome though!

We walked over to blood draw today with a bit of chill in the air, but not too bad.  It has been a moist day today, not always rain, but heavy fog or mist or whatever they call it here.

Terry wasn't feeling very well this afternoon and I needed to complete some Christmas shopping so I headed to the mall while he stayed and slept.  I didn't have enough time to do everything I needed to do and still get back to the clinic pharmacy by 5:00 so I'll have to return to do a bit more on Monday. Oh Bother!  It's mostly just groceries (and stocking stuffers) I need, so it'll be okay.  I'm so worried about Christmas gifts though - I don't like to disappoint.   I have had such a hard time this year and I don't think I can explain why, I just haven't been able to get into it the way I need to.

Terry is now hydrating, and will be late into the evening. 

One more day almost done!

We Woke Up To Snow Today!

The snow is gone now, but it was snowing when we got up this morning. This is what it looked like when we walked out the door of the PGH to go to the clinic at 7:53 this morning.

 



We didn't want to slip and slide up and down the sidewalk so we took the shuttle to the clinic for blood draw and bone marrow biopsy.

This is how it looked out the windows of the SCCA 2nd floor this morning.

We were so pleased to get the gal we like to do the biopsy.  She is so pleasant and good at what she does.  The biopsy went well, even though they had to go in a second time for the bone sample.  Sometimes the bones just don't want to cooperate.  We came back to the apartment and started Terry's hydration - 6 hours of hydration is a long time.

It's fun to run into some of the doctors that used to care for us but have moved on.  We saw one today (the doctor from Russia that we gave a Halloween treat to him for his daughter).  He asked Terry how he was doing and seemed very sincere in his interest.  There are good people everywhere and we are so lucky to get acquainted with a few of them here.

We saw a little snowman on the way back from the clinic.  He stood about 2 feet tall.  I tried to get a picture but with the bus moving and the man walking on the street I didn't time it well enough.   It was so fun to see, sorry I couldn't share that look.  However, the photo I did get was kinda cute too as it shows some of the fun holiday décor our driver sticks on the windows.  That little snowman was either right behind that little white bear on the window or not quite in view just beside the window. 

We feel quite cheerful as we see these and other fun little stickers that cling to the windows of the shuttle, and we feel so lucky and blessed to have a kind and caring driver of that shuttle.  He is one of those good people we are happy to meet here.

It's been a great mail day and we thank you friends and family for thinking of us.  We are blessed to know you and have you in our lives.  We love you!  You are good people and we thank the Lord for you!

T26

Terry had a blood draw this morning but no other appointments today.  He completed his six hours of hydration and seems to be doing fine.  Each day he wonders if he is getting a small step closer to feeling better, but he has a long way to go.

We got another surprise today - another holiday package.  This Christmas package is much like the Thanksgiving package we received, and again, we are grateful for it.

This reminds me that I've got to work on a menu for next week so that I can go purchase everything I need. 

There are many things here that reminds us that it is Christmas time, but it is definitely a strange Christmas for us and it feels so different.  I'm sure it is going to be very different all the way through and I hope I don't "miss" it.     

T25

Somehow we got thinking it was Thursday today and found it quite relieving when we realized it was only Wednesday.  Luckily we didn't miss any appointments, though we were a couple hours early for blood draw, but no one said anything about it.  The days do seem to run together here lately.

We drove up to the bank and Safeway, and we found paraffin wax!  So, I dipped some bon bons this afternoon and packaged some for our missionaries, wrapped some gifts and walked back to the clinic to mail some more Christmas packages while Terry was getting some rest and hydration. (6 hours of hydration now days.)  I am so happy that the clinic mails things for us because it really makes my life less complicated.  It's definitely a tender mercy for me.

I dipped the rest of the bon bons after getting back from mailing the packages.  They are now done! YA!

I was able to get some more cleaning done too, and a couple loads of laundry (I'm washing bedding from the weekend).  I also vacuumed half of the apartment, but I'll finish the other half tomorrow.  It's looking a little better in here now, but there is still more to do.  I create a mess as quickly as I clean one up.  One step at a time!  That is how we take things around here.

Speaking of one step at a time ...
We received a call from the doctor (message left on my phone when I was at the shipping department) telling us that Terry's neutrophils have been up over 500 for two days in a row now.  They consider that to mean engraftment has begun. Today they are 670 and yesterday they were 560.  That's good to hear!  Those are not normal counts, but they are the numbers they look for at this point and time.  This means more good days ahead.  Unfortunately it still also means that there are more bad days ahead.  Things don't just automatically get better when the counts start to go up.  We will be watching carefully for GVHD (Graft Verses Host Disease).   But this is progress and we love progress.

It's been a good day!
We hope you had a good day too!

(I hope this post made sense and was spelled correctly ..., I'm feeling pretty tired and my mind is going ..., going ..., gone!

T24

We had a blood draw and nutrition visit and team visit today, walking to and from the clinic in the chilly air.  We waited over a half hour for blood draw and we waited at least that for the team visit.  I don't know how long we usually wait, but today I felt so rushed with so much to do and needed every bit of time to do it.

We really like the doctor we have now. Remember they trade doctors here.  We have had some doctors that are surely good doctors but not very good with people.  This one, Doctor Radich is very nice and friendly and compassionate and we really like him. He is very much a people person.

Today is the 24th day after transplant.  Things are about the same as yesterday and the day before and the day before and the ..., well, with a few slight changes.

The counts are slightly up today and if they are up again tomorrow they will conclude that engraftment has begun.  I don't know if we will hear from them, but some day we will learn. 

Terry is loosing more than just hair, he is loosing a bit of weight, but we hope that changes soon when he can eat a bit better.  For now he is to graze as much as he can.   He needs to have more fluid, so tomorrow we begin extra hydration.  I suppose instead of 4 hours it will be about 6 hours of hydration.   He ate pretty good today.  He thought that maybe he was tasting his food a bit more than he has the last few days so he hopes it continues to improve.

Bone marrow biopsy is usually the 28th day after transplant, but we didn't want to do it while the kids were here so they changed it for us.  I was hoping for after Christmas, but it's Friday, this Friday, the 20th, which will be T27. 

One delightful thing we heard today was that the clinic will ship packages for us at their prices.  That was the best news of the day because we had a few to ship.  I got things packaged up for Chase and Connor and my dad and sent them on their way.  Awesome!  Now if I could just finish up the rest of the family.  I'm not doing so well that way.

I didn't get the bon bons finished though it wasn't for lack of trying.  I walked a couple blocks down to Bartells Drug Store, but they didn't have any paraffin wax.  The lady suggested I go to Whole Foods just down the street 5 blocks.  Well, I can do that, so I went that direction, only it was not straight down the street nor just 5 blocks, but I made it just to find out that they don't have any either.  I walked a different route back to the apartment, which was a mistake because there was a terrible hill to climb.  It was either steeper than this hill here or it was longer or I was carrying to much or all three.  Good news is that I made it back.  Bad news is that I didn't have any wax.  So, I sent the packages without the bon bons and will send bon bons on their own when I can find the wax.

I got back to the apartment and Terry was sleeping.  He didn't even hear me come in so I decided to do something quiet.  I wasn't going to decorate until I had cleaned house but washing dishes is just too noisy.  I decided to decorate the wreath I purchased yesterday at town.  And that is where I used some of those hankies I ironed Saturday (and posted about HERE).  I promised to tell you more about them and today is the day. It was just an idea I had and I went with it.  I think it turned out nice enough to do again some day.

 

It hangs on our apartment door.  It will be lovely to see as we walk down the hall to the apartment.

 

And then I added a star ornament! (It was a gift ... Thank you to the givers!)  We've had several kind gifts and cards and we are grateful for your kindnesses.  We also thank you for your prayers and your faith. We have so much to be grateful for.

And, here is our tree.

The lights, pine cones, and vines were already on the tree.  To decorate the tree I just stuffed vintage Christmas hankies around the tree and tucked in an elf here and there. I did however, forget to get a tree skirt, but I think I'll just put some gifts around the tree and all will be well.

Those little elves could be distant cousins to the Elf on a Shelf.  They are wishing us all a Merry Christmas!

I still have so much to do, but my To Do list is getting a few things crossed off today. 

One step forward and Two steps back ... Oh Bother!

This day started out filled with an extra long To Do list for me. 

We walked to blood draw and back.  Then I hooked Terry up to his hydration, got him some lunch, and left for town. Terry didn't feel like going to the store so he stayed home and rested and went thru some of the mail the kids brought us.  I got everything on my list and I got home before hydration was complete so I was happy.

I started crossing off a few things on my To Do list (but it is still a long list - it's been a one step forward and two steps back kind of day).  I thought things were going well until it was time to dip bon bons and I had forgotten the paraffin wax.  It wasn't on my list!!!  I somehow overlooked it.  Have you ever tried dipping bon bons without it?  It isn't pretty!   So now my plan is frustrated and I am going to have to figure something else out.  I don't have a candle here, so that won't be the solution.  ;) 

On a more positive note - it was a great mail day for us.  :) 

Okay, it's bed time and I will have to write more another day. I'm so tired, I hope I made sense in this post.  I guess you can have some fun trying to decipher it if it doesn't make sense.  ;)

Guests!

We had guests for Saturday night and Sunday.  Such an exciting time!

Michael and Tawnee brought Anthony over after a drive he had Saturday (and some shopping they did).
Thomas and Dana went to BrittanyJo's basketball game in Cle Elum and then they came over after that.

They arrived late in the evening, with only a little time to visit before bedtime, but when we woke up everyone was still here ..., it was awesome (almost like Christmas excitement).

Elsie walked in like she remembered us and came right to me.  I hope that means she did remember us and not that she is just so good natured that she will go to anyone, even though that could be nice at times too.

Akleigh and Auger were so excited to be here too, both smiling with great pleasure  - I think I understood the feeling because that is how I felt. 

It was wonderful to see them all again and have them spend time with us. We look forward to having them here again.

We walked to the clinic for blood draw Sunday morning and then went up to the roof to see the sights from there.  We put puzzles together, visited, listened to Christmas music, made a manger with baby Jesus and ate (of course).  Let me share a few photos from this wonderful day (in no particular order) ...

The children are watching the birds out the window ...

Auger enjoys coloring time with his grandpa while grandpa is getting his hydration and putting his legs up (doctors orders - you are either walking and getting some exercise or sitting with your legs up) ...

Up on the roof top (maybe this is where the reindeer will come on the night before Christmas) ...

Here is our baby Jesus in the manger filled with hay (instructions in the Friend, but we didn't cut out the pieces from the friend, we drew our own and used what we had - it worked!) ...

Walking to the clinic ...

In the elevator coming down from the 6th floor - the floor with the best view of the lake ...

At the windows of the 6th floor lobby - transplant floor ...

Ready for the walk back to the apartment ...

Walking from the clinic with a cup of hot chocolate ...

Breakfast, puzzles, visiting, and can you see that they brought us a tree?  I'll get it fixed up another day.

A box can make a great chair ...

This little apartment felt a bit stuffed at times, but it was a great stuffed feeling.  One of my older kids told me many years ago (while he was still a youngster) that if being spoiled meant you have a lot, then I was certainly spoiled.  Let me tell you that when I see my husband, our children (including their wives) and our grandchildren I do certainly feel spoiled.  I am very blessed!

We missed our other family members and look forward to someday spending some quality time with them.  Love to all!

T21

Another day goin' by ...

We had blood draw and picked up hydration for Terry, but no new news about his health.

I did some laundry and ironing.  I ironed about 50 hankies.  Yip, but I can't tell you about those hankies quite yet.  Be patient and I'll post about them later.

I'll post about another bit of excitement too.  But, you're going to have to come back later to read about the fun news ..., maybe Sunday evening or Monday morning.  I'll do my best to get it done as soon as possible. 

:)

Have a good evening!

T20

I woke up and realized I hadn't posted and couldn't get back to sleep, so I decided to take care of that right now.

We were watching an old Christmas show and I was doing some scrapbooking into the evening and just neglected to post.  Sorry!

Things were pretty much the same with Terry.  We did walk to the clinic because the weather was much warmer than previous days.  It felt good to walk but the fog was so thick that there was mist in the air on our way there and the wind picked up giving a bit more of a chill on the way back.

The counts are maintaining -
Platelets at 68 (they will continue to fluctuate like this, but always on the rise, so this is not a problem).
WBC were 0.55
RBC were 3.08
Neutrophils were 0.22

They keep telling us to give it a couple more days.  Things are going slow, but that's not a problem.

Terry is still loosing hair, but it isn't as much as the couple days before, so it's slowing down.  I need to cut it because it is getting long, but I didn't bring anything to do that with.  I ordered a pair of hair cutting scissors and a hair cape and they got here today, so if we want we will try to get that done tomorrow, unless we wait for the hair clippers that the kids will bring with them Sunday. We'll see.  I might be a bit sleepy tomorrow because of being up at 3am for posting.

I have another puzzle from the lobby that I'm putting together. I have thought with a couple of these puzzles that they were familiar.  I thought that meant that we have them at home, but I am just realizing that it could be because I put this same puzzle together, here three and a half years ago.  That's probably what it really is. Puzzles get harder for me as I get older, because I can't really see everything in the pieces like I should.  Sometimes a different lighting or angle helps and I feel pretty silly for not seeing it before.  Age does play tricks on us in many ways.

(Somebody upstairs couldn't sleep either, but they are making more noise than I am.  Shhh!)


Well, 20 days down ....

I have been wondering how this transplant compares to the first one and finally checked the blog to see if there were any similarities to give me an idea of what was going on at around this time last time.  I finally did that during this late night visit to the computer.  It actually sounds quite similar.   You will find  info about day T22, 2010 posted HERE.

I also found that engraftment began to take place on day 27. That 2010 post can be found HERE.



Well, I'm getting sleepy again so I'll head back to bed.  It always takes me forever to get from start to finish with a post, so I've been here awhile, and I can't think of anything else to say.  I'll try to be quiet going back into bed so I don't wake up Terry.

Goodnight!

T19

Terry's symptoms haven't changed much, except he hasn't thrown up for a week now, so that is a good improvement to his days.   He still doesn't eat very much, and his taste buds aren't working well enough to make any food taste good to him.  It seems that soups and stews seem to be the most pleasant tasting to him right now.  The nutritionists tell us to go with what works and they give us hints to help make things taste better for him. 

Have you heard of Umami? (We have, but only because they introduced it to us 3 1/2 years ago with the first transplant.)
"There are four tastes that you may be familiar with: sweet, sour, salty and bitter.  Umami is the fifth taste.  Umami is a Japanese word that refers to the savory, brothy, meaty taste and mouth feel of many foods, including some meats, seafood, fruits, vegetables and dairy products. Glutamate, an amino acid, is what gives food umami flavor."


We drove to the clinic today because Terry wasn't feeling strong enough to walk in the cold, the shuttle was doing a grocery run, and the cabs are just not an experience we enjoy right now.

It was a bit tricky getting out of the garage because there were trucks in the alley blocking the way.  We finally made it and got to the clinic in time for the appointment.  The blood draw took less than 30 minutes so we didn't have to pay for parking.  Lucky us! 

We do not know the results on the blood draw today, but we will learn more at tomorrows clinic team visit. 

I feel like I'm rambling on these days that I have nothing very interesting or different to say.  We are just taking it one day at a time ..., and posting even the non-interesting stuff one day at a time.

T18

Two changes for Terry today -

Platelets are at 72 (they are rising on their own, and the others are sure to follow soon).

Cyclosporine levels are high, so his dose of that medication is reduced.  That's a good thing because of how terrible it tastes and smells.  Each pill is individually packaged in a foil wrap and we open them 15 to 30 minutes before taking them so that the smell and taste dissipates a little.  They are bad! (so I've been told)

Oh, volunteers left a box of individually wrapped cookies and candy canes in the lobby today.  Isn't that sweet!

Looking forward to Sunday, when the kids come ....

T17

Uh Oh!  I skipped a day.  That's probably because they all seem the same as the next.  However, I did ride the shuttle to the grocery store yesterday afternoon and that was different than normal.  Terry felt about the same, and he stayed home resting and getting his hydration for the hour I was gone.

Today we had blood draw and a clinic team visit.  The good news for the day is that counts are rising.  First come the platelets, which are at 58 today.  Terry hasn't been at 58 for a very long time, unless it was just after a platelets infusion, so we are pleased.  They tell us that the platelets come first and then the whites will begin to increase in a few more days.  By this weekend we should see some changes there.  I just looked at what records I have available to me, and it looks like November 2012 Terry had 54 platelets count and in May that year they were 59, so nothing that high that we know of for over a year.

Let me clarify that this does not yet mean that engraftment is taking place, this just means that counts are up.  When the whites are up for a few days in a row then they call it engraftment (but I don't remember what that number is) - we promise to let you know.  They are at 26 today.  Don't let yesterday's non-post day worry you too much.  If there is change I will surely remember to post it.  :)

Terry thought he was feeling pretty good this morning until he took his early meds. Then he started feeling kinda crummy.

We thought he wasn't going to have any hair loss this time because it's been 2 1/2 weeks after TBI and he hasn't had any..., then this morning he showered and couldn't get the hair to stop falling out.  I suppose it will keep falling out for a few more days.

We took the shuttle to the clinic (shame on us) because he just didn't have the energy to walk.  We waited for medication and hydration after our visits and then walked home.  The weather is much better today, though the sun was hiding.

It was so exciting to walk down the hall to our front door and find these cute mittens greeting us.  We moved them inside so we could see them throughout the day as we walk by.  They are another sweet kindness from the Hutch School children. 

The Hutch School kids are missing their holidays at home too, so doing these nice things for us must make their hearts feel better.  We're going to have to come up with a nice little Christmas surprise for each of them.  Think...think...think!  I'm going to have to find out how many children there are.

One thing I do know  - when we go shopping I'm going to get a wreath for the door.  Won't that be lovely! 

Christmas is certainly on it's way.  Signs are showing up everywhere.  We have received a few Christmas cards and gifts and we thank you all for thinking of us over here!   I went down to get the mail today and we got a note telling us there were packages in the office for us.  I thought it was stuff I ordered, but, Oh what fun it was to find surprises along with the things I ordered. 

These two cute things from my wonderful visiting teachers -

 

 

We also received a gift for under our tree ..., um ..., we are working on that ..., the tree that is.  

We thought the kids might come see us tomorrow, but we were running into some conflicts, so we are thinking they will come Sunday.  It's been about a month since we have been home, so it'll be good to see them sometime soon.  They will bring one of our trees with them.


Now here is a link Connor shared with us - you should enjoy it too.

http://www.mormonchannel.org/video/mormon-messages?v=2874125972001