Back to School +

We took BrittanyJo to Rexburg to start this next semester of college.  The roads were really good for us on the way there but there was compact snow on the roads at least half of the way home (but they didn't slow us down too much and we didn't have any problems).  The trees were lovely to see.

We left BrittanyJo feeling kinda sick.  She was alone in her apartment with no one to require her attention so she could rest or organize as she desired.  We can see with this next picture that she did some organizing (though if she is at all like her mother, things might still change after she lives there for awhile).  This is her side of the room, then her side of the walk in closet, then the bathroom - all inside her room - it's really a nice place.

apartment exterior has such a fun look and the inside is pretty cool too

While we were gone Chase headed back to Wenatchee for his new semester.  He had a project to work on before school started and some friends to visit before he left.

Monday (5th) will be the first day back to school for BJo, Chase, and Anthony.  Big Day!  

Connor will be looking for work and trying to settle in to a new routine, which is what I will be trying to do too (I guess I already have my new job, but will need to settle in to that new routine).

I'm feeling a bit overwhelmed with the thought of it all, but it's just because I haven't had to worry about those types of things before and I don't understand the mail I'm getting and the work that is required.  I am so glad that Thomas knows some of it, but there is some that he hasn't worked with yet too.  I'll be setting up some meetings with a few people who can help us learn about whatever we need to learn about.  I think it will just keep going with a domino effect from there.

I will try to remember Terry's encouraging words -

"It will turn out better than you think!" 

as I continue on this journey.   Day to day life is just different than it ever has been before and it is just going to keep changing for awhile.

Through the last week some of the kids have mentioned how I've changed and I just tell them that I will never be the same again.  No matter how hard I try I cannot be the same.  Not much in my day to day life is the same as it used to be so there is no way I can remain the same.  Some change will be indifferent - not necessarily better, but not really worse either - just different.  However, because we are constantly striving to be and do better I do hope to change for the better in many ways.   With the help of the Lord I know I can do it.


I'll end this post with a puzzle we did over the holiday.  You may remember that puzzles have been a big part of our lives the last few years and especially last year, so it felt right to keep that tradition going.  It was a little hard for me the first several minutes but I didn't want that part of me to change so I kept going and it soon became relaxing and therapeutic.  

That is how I hope to make things work for me in the future - I will persevere ... until it becomes easier.  Not that the thing has changed, but that my ability to do so has.

(image from here)

When I tried to find that quote above I found these too.  They are all good, so I'm adding them as a gentle reminder.

(image from pinterest, but complete article from Elder Scott can be found here)

(image found here)

Well, here I "grow"  ...

T93

No appointment today, and it's still raining, so no walking today either.  It has rained much of the weekend.  We'll be staying inside again, trying to keep dry and warm.   These little crocus are growing in the front of the apartments, and we get to see them every day..., except for those days we stay inside.  That means they will be dead and gone before we get out again if the weather keeps up like it is.  ;(    Not really, but it's quite moist out there and we don't want to get chilled and sick.

Since we got our boxes unloaded and apartment organized I've had a little more time to relax.  We also got a box in the mail with some things I ordered a while ago.  It included this Valentine Skating Party puzzle - which would look better as a card instead of a puzzle, because the picture on the box is much brighter and more cheerful than it is in the puzzle.  It is just a 500 piece puzzle, so it went up in one day.

Have You Heard?

I have been wanting to share this news, but felt I should wait until they shared it first.  It's pretty exciting though - 

Skyler and Lisa are expecting their second child.  Check out their blog here if you'd like.

As for Terry's health ...

- We are grateful that he BK virus is subsiding still, and hope it continues,

- Today's lab results led to another liter of hydration daily and an infusion of red blood cells.
WBC = 1.05(L) [slightly up]
RBC = 2/71(L) [slightly down]
HCT = 26(L) [this is apparently the magical number for cell infusion]
PLT = 67(L) [slightly up] 
ANC = .49(C) [slightly down]
Creatinine = 1.67(H) [this is the reason for the added hydration - it's been hard for him to want to eat or drink much when he is so nauseated]

- We looked forward to this team visit, not because we expected any new news, but because we were curious about the nausea Terry has been having this past several days (since the start up of the second round of Vidaza).  They believe Vidaza could be the culprit so we will see if it subsides some after the last infusion tomorrow - hopefully by Friday he will begin to notice a difference.  If he still has nausea days after the Vidaza is done the culprit might be GVHD instead. 

- Vidasa infusion as planned, and red blood cells infusion added to that so we were in the clinic until just after 4:30 tonight.  It went well though.

- A few things on our schedule have changed because of the lab results and team visit.  Some removed, some postponed, and others added.  That's the way it often is around here.  We are quite used to it and it isn't a problem at all.  That is what we are here for - to accomplish the many things we must to help this be successful.

- Presently we are at the apartment, hydrating ...

Okay, next -
The plastic is down on the other side of the building, which means moving will most likely happen this weekend. 

Here is a pretty puzzle we put together yesterday.  It would be lovely to have a garden shed and flowers just like this in our yard.

T79

Well, today's clinic visits were the beginning of the "work up" - work up is what they call the appointments scheduled before going home at the T100 day.  (Just to be clear, I'm thinking that we won't really get to leave before T104, because we must wait for the results of the bone marrow biopsy and I don't think we'll have those until then.  T100 isn't a magical number.)  This is good news, in that they think that we will be able to go home, but it does not necessarily mean that the transplant is considered successful.  They have told us that it is possible that the things they would do here could also be done in Wenatchee, or it is possible we will travel back to appointments here.  It all depends on what needs done.  So, if things continue as planned we will have about a month left living here in Seattle.    Sounds good!  But it is likely that they change their mind and we have to be here longer.  We'll see!

The first appointment was a photo op.  Yip, they take pictures of Terry's skin.  I guess this is to help document changes due to GVHD.  I can't help but wonder if they will ever use them.  They didn't last time, but he smiles for the camera anyway.  Wait ..., truth is, he really doesn't smile for the camera. 

Next appointment was a pulmonary function test. These are to check the lungs, and are done when we first come for transplant and just before leaving.   Things looked good, the technician praised him for his good work, even with his cough. 

The last appointment was the Vidaza infusion. That went well too.  We are wondering though if that is the culprit for the nausea.  I also wonder if it is due to the change in Myfortic (medication to control GVHD) that he had a few days ago too.  They both happened about the same time, so it's hard for me to know, but maybe the doctors will shed some light on that tomorrow.

It is interesting to be talking or thinking about going home when Terry is feeling kinda crummy.  He is almost always nauseated lately and just doesn't feel really well.  It seems that he would be happy if we could cross just one thing off his list of "icky" before he adds another.  That doesn't happen very often for him.  We still have a few weeks here, so there is time to get feeling better.

I guess we will begin our move to the new apartment this weekend if things go as planned.  The plastic isn't down yet, so I'm curious to see if they can make it work as planned.  Three cart loads of boxes and things already got taken out of the apartment and stacked up at home, so that will help a bit with the move.  It will however, add a bit of work to my schedule when I get home.  I'm actually writing a TO DO list for when I get home because there is so much I want and need to do.   I'm gonna be one busy mom for a few months ..., at least.

Here is another puzzle we finished.

Cute huh!  and it comes in a cute little tin.

Can you what the first section completed was? 

It was the cow and fence line!  Then the hay field at the right.  Then the tractor, boy, wagon and puppies.  The sky was last.  It often is for us.

Enduring to the End!

We finally completed this puzzle - hardest puzzle yet!

Pieces fit in places they didn't really belong, and yet it looked good until more pieces were put in and the last piece in that area didn't fit the last space left.  That happened several times as we worked our way through this puzzle.  It was like putting the puzzle together twice, or even more than twice.  If at first you don't succeed, try, and try again.   It really was tricky and it is good to have completed.  It's really a pretty scene and I am glad that we didn't give up each time we thought about it.

I suppose it's a good experience to remind us the importance of not giving up and of enduring to the end. Good things will come in the end.  Remember, it will turn out better than we think!

Still ...

We are still working on that puzzle ...
and re-working it ...
and it is work.

We started the first of seven Vidaza infusions again today ...
in clinic ...
and it went well.

It's still cold ...
therefore no walking today.

Still here!
Still fine!

Weekend Visit

We had a wonderful visit with the kids this weekend.  We went to the Woodland Park Zoo Saturday, we had an ice cream party (Auger and Akleigh earned by reading books), and we put a puzzle together.  I took a few photos and BJo took some photos so we have several to share.

Looking at the zebras ...

the elephant ...

 

 

playing in the cave ...

 

 

viewing the orangutan ...

 

 

On the way here the kids saw the 12th Man Flags everywhere, so on the way to the zoo Auger would yell it out when he saw one.  He was so excited to find each one, and we even saw a few in the zoo ... and we heard about it ;), and even encouraged it by showing him one if we saw it.  Fun times!

 

 

The puzzle we put together was a panoramic puzzle over 3 feet wide (less than a foot tall) ...

 

 

pretty birds on a branch ... 

 

 

We had a great visit and enjoyed being together ...

 

 

 

We didn't watch the big game Sunday, but on occasion throughout the game we would hear some yelling and celebrating going on around us, which made us wonder if there was a touch down or some other wonderful play being made by the Seahawks.

 

The town was all a buzz for several hours after the game ended. People yelling and carrying on, traffic picked up on the roads from one or two cars a minute to almost the normal full lanes everywhere and there was honking all around.  Pedestrians went from almost zero to several and each group was yelling and waving and encouraging cars to honk. We heard a few fireworks going off every once in awhile as well.    We thought that all of the noise subsided around 10:00pm, but at 10:30 we heard more fireworks.  Imagine the talk of the town the next day ....

PS
BJo showed me some photos Michael took while he and Elsie were here, so I added them to that post HERE - you wont wanna miss em!

Clinic Visit today - T67

Wanna know what we learned at our clinic visit today?  We didn't expect too much today but have another visit scheduled for Friday and expect to learn much then.

Today was about the same as the last few:

- BK virus (urine infection) is often seen after transplant and could last up to 6 weeks.

- The CMV has come back negative so we will finish the next three days of the Foscarnet infusion and then be done with that, trading it for an oral medicine that he was taking previous to this infusion.  This medicine depletes the magnesium so maybe he can find some relief from the cramping.

- Start taking an oral magnesium, which we hope will help with the cramping in his hands, legs, and even torso.

- Yesterdays lab results remind us that the news we get and then give you is likely to change the next day or two, if not the next hour or two. Counts are down.  WBC - 0.36L,  RBC - 3.26L,  PLT (Platelets) - 29L (so we had a platelets infusion today at 10:30),  ANC - 0.06C (leaving this as it is so we don't stimulate the MDS, sending it further in the wrong direction.)

- Creatinine is another level we watch to decide if he needs more fluids.  It is 101 at the moment, which means he is doing fine, but will continue to receive hydration for the next few days (at least).

- One last thing = They have some of the first reports from the bone marrow; just enough to know that we haven't made much progress (but they often don't at this point and things still turn out)favorable.  We will learn more Friday that will direct us to the treatment they think will best benefit Terry.  We are anxious to learn. 

Again, we are not moving to the new apartment yet.

Here is our latest puzzle.  Awesome huh!

Sunday

We had a 10:30 blood draw and a scheduled platelets infusion for 1:00 today.  We got a call telling us that the counts were up so we didn't need to go in for the platelets. 

Platelets are at 57 - not normal, but something to be pleased with.  WBC are 1.2 - not normal but creeping up.  Neutrophils(ANC) are .29 - again, not normal, but creeping up. 

We had the rest of the day off so we listened to a few conference talks, took a walk through the park,  talked on the phone with loved ones, and put this puzzle together.  Great day!

What a great surprise!  Isn't this a unique puzzle?   It doesn't have 4 straight edges and corners - it's a shaped puzzle.  We have done round puzzles but never this style.  We didn't do the edges first like we normally do.  It was really interesting and fun to put together.  It was so busy with patterns and colors and always something new to find in the picture.  And - I could love a barn just like this!  ;)

All is Well!

Don't know what to say today ...

Still the same!

Oh!
One puzzle done!

Another one on the table!

T59

Today was a full day for us.

We arrived at the clinic for a 9:15am CT scan and the technician decided that it wasn't necessary because of the scan he had last week. We had wondered about that ourselves. We went to the lab for blood draw and then up to the 6th floor to wait for our 11:15am appointment. 

Our appointment had a late start and we didn't get out of there until about 1:00pm.  We had new info about medications and infusions and upcoming events. 

OH BOTHER!  They decided they do want a Bone Marrow biopsy after all.  It will be next week. 

Terry's blood counts are getting pretty low so they are watching carefully.  The platelets count was 23 and because of the blood in the urine they wanted that number higher, so we had to go back in for a platelets infusion today at 4:30pm.  It went well.

WBC is .43(L)
RBC is 3.59(L)
ANC is 0.24(C = critical)

We are happy that the Creatinine is at a good place (0.96) and we are watching the glucose level since it is high at 153(H).  We think that the juices he is drinking is contributing to that count and we are happy to find that water is tasting better to him all the time so hopefully that count will continue to lower.

The virus CMV is still present, so they are changing the Ganciclovir infusion to a new drug infusion.  We will go in to the clinic for the first infusion of Foscarnate tomorrow.  It will then be a daily infusion we will do at the apartment. 

There are a few medicine changes happening in the next few days, so it's going to be a bit tricky, but luckily some of them will change when we run out of them so we will have reason to think about it and make the necessary changes.  One thing we have learned here is that change happens ..., regularly.

Terry is still suffering with chronic sinusitis and we don't see much of an end to it with anything we try to do to fix it.  It seems to be traveling from one side to the other.  We continue to pray that it will improve and we continue to endure to the end of it.  They will possibly give another IGIV later, hoping to help that out a bit, but we wait to hear. 

Good news is that the CT scan done last week shows a notable decrease in the lymph nodes in the chest and neck area.  Awesome huh! 

Well, I think that's it for the medical part of the day.  We did drive to the bank and the store after lunch today.  Part of that was medical too, because we had to pick up more Vit. D and Sudafed. 

We walked back to the apartment in the dark and Terry is getting his hydration ...  and, ssshhhh! he's sleeping.  He doesn't get to do that often, but I think the Benadryl they gave him with the platelets infusion has kicked in.  I hope he can sleep thru the night. He won't want to be awake because we have a 4 hour power outage scheduled to begin at 11:00pm tonight, so what will he do in the dark if he can't read or use the computer or TV?  I guess he will just have to think.

As for the Sights and Sounds of Seattle - here is the Space Needle as we viewed it on our walk tonight.

And here is a fun puzzle we did quickly after the bear puzzle.  This was bright and beautiful color and very easy to complete.

Holiday!

No trips anywhere today.  We needed to stay close to home (home away from home).   So ..., puzzle it was, and here it is ...

 

Not a good photo and it seemed just as hard to see these colors as we were putting it together.

 

We think we did this puzzle a few years ago when we were here.  We think we will not do it again!

We are into animals lately I guess.  Cats and bears in puzzles ...

 

How about a giraffe? 

 

Well, we saw something out our window that looks like a giraffe ..., sort of ...

:)

It's Sunday

Another tricky puzzle completed.  Maybe all puzzles are tricky.  Maybe that is why they are called puzzles.  ???  This is the puzzle Terry brought up from the lobby.

We listened to a few conference talks today.  They are always good to hear again and again.

Todays health news is almost the same as other days, but we did walk to the clinic today for a urine sample because Terry has an infection.  Oh Bother! 

It's game day today here in Seattle.  We are not a part of that except for what we saw and heard on our trip to the clinic.  12 flags are up and people are always curious to know if we are rooting for Seahawks or 49ers and if we are watching the game.  By the way, we are not watching it!  It's Sunday! 

It's Friday!

Terry had a hard time sleeping so he worked on the puzzle while he was up last night.  We got it finished this morning before breakfast. 

It's really a pretty scene, but we were surprised at the many different colors that showed up throughout.  It kept us on our toes and surprised us on occasion when we found pieces that fit.

We went to the clinic for blood draw and a team visit, but when we showed up for our visit we learned that it was no longer needed.  We take that as good news since they didn't have anything to tell us.  Remember that the chemo infusion doesn't work fast enough to know if it is helping yet and the blood counts are lowering again because of medications, so we are kind of on hold for now. We'll see them Tuesday and see if there is any other news.  For now Terry is achy and exhausted (probably because of the low counts), we keep trying to walk and exercise to help him rebuild muscle and strength. 

We walked back and after lunch we walked down to find a bank that was supposed to be a few blocks away.  The internet was a bit slow at telling us that the spot the bank was in is now an empty lot waiting for construction.  (It doesn't have Bartell Drugs on the map and we know it is here.)  There is so much construction going on that they apparently can't keep up with it. It is everywhere, like in this photo here ...

 

Perhaps you noticed the 12 flag on the upper right corner of the building project????  We saw many of those and other signs of Seahawks everywhere.  We've heard about the rally going on down town today and we were warned to stay away or we might not make it back.   The talk of the town is the upcoming game.



 

 

 

This next flag might be hard to see, but it's kinda centered in the photo above the white flag.

 

And we do see a lot of those little cars all the time.  They are everywhere ... Car2Go.

I forgot to mention that we saw some flags on our walk yesterday.  Here is one ...

 

And we saw this pig.  It must be related to the pig we saw at Pike Market a few years ago.

We stopped at Bartell's along the way and got some reading glasses for Terry.  We found more signs that this is the Seahawks territory.  The 12th Man/Fan is definitely big around here.  Maybe we'd find it in stores at home too, but I guess I don't really pay attention to it, or maybe I'm not in the stores when these things are.

 

We have walked this route before, but today it was at lunch time and we saw all kinds of food trucks and stands selling lunch along the city sidewalks.   Those trucks are all in addition to the little cafes tucked in everywhere already.  We had eaten so we didn't stop at any of those places ... I think those food trucks are off limits for Terry at this point anyway.   

As I write this I hear the sirens close by again, which fits right in as we share about a few of the Sights and Sounds of Seattle.

There was still a lot of time left in the day when we got back to the apartment. We spent the rest of the afternoon and evening hydrating, infusing Ganciclovir, watching TV, putting our feet up, doing laundry, making cranberry bread (from the muffin mix we were given in our Christmas package) and scrapbooking.   It always seems strange when we can fill our day with walks and appointments and still have so much time left. Some days seem really long because it feels like we have spent so much time already doing the things we've done, but it's no time at all compared to what we do and are familiar with in our real world ..., back home.


We still have more time today ...
and we've even checked off publish a post on the blog.