I have been MIA for a couple days and apologize. I was sick and it didn't even cross my mind to post on Wednesday. When I realized I hadn't written on Thursday I got right up and tried to write something. I didn't know what to say so I closed it up and went to bed.
Today I should say something ...,
Terry is about the same as he has been for a while now, and what that is ..., we don't honestly know! ;)
We had a blood draw and LTFU (Long Term Follow Up) appointment today, and a short visit with the doctor as she explained what would be coming up for us in the near future.
We know just a little bit right now -
The DLI option is no longer an option - the "blasts have to be less than 5 and they are not", so it has to wait.
The current plan is to have another round of Vidaza and possibly have a change in medication to bring on a bit more GVHD ..., well, the hope is not really to bring on GVHD as much as to bring on graft verses malignancy (rather than host).
The LTFU doc we saw today will try to determine what will be best based on what he learned at todays appointment and then get with the doctors to create the next best step.
The plan is that we will learn more Tuesday.
We are at the apartment hydrating and waiting for supplies. If they come early we will head home for the weekend, and if they are late, we will wait until tomorrow. So ..., I'm not sure when I'll post next. It'll be a surprise I guess!
Have a nice weekend!
We send our love!
Friday, February 28, 2014
Tuesday, February 25, 2014
A Bright Sunshiny Day!
It was a beautiful sunny day today, with no rain!
We went to the clinic today and learned that we still have more to learn. That's often the way it is around here, so we shouldn't be too surprised.
The bone marrow results are back and tell us a bit of a story ..., Here is what we learned. I know it is confusing and I apologize, but I do want to record it.
Chimersism Whole Bone Marrow (Whole means they did not separate the CD3, CD33,and CD56 cells) on 2/20/14 =
42% donor 2 (12/24/2013 was 60%)
5% donor 1 (12/24/2013 was 4%)
53% host (12/24/2013 was 36%)
Chimerisms CD3+ T cells / lymphocytes on 2/20/14 = 26% donor 2
(1/7/14 was 30%, 12/24/13 was 19%)
Chimerism CD33+ myeloid cells / neutrophils on 2/20/13 = 84% donor 2
(1/7/14 was 95%, 12/24/13 was 90%)
Flow cytometry on 2/20/14 tell us that the myleloid cells increased from 8% to 9.8% since 1/28/14.
Oh Bother! It's obvious that the trend is the wrong direction in every cell count.
So what does all this mean? That was our question. What next?
They suggest Terry continue with the Vidaza. A total of 6 are suggested and he has had 2 already. The next one is due to begin next week. However, this could be done in Wenatchee, so it's possible we could be going home as early as next week.
BUT,
They are still discussing the option of a DLI (donor lymphocyte infusion), which would mean we need to stay here for that. If they do a DLI it could possibly be done next week and we will have to stay another couple weeks after that to watch for GVHD.
They will contact us when a decision is made.
We'll let you know ...
We went to the clinic today and learned that we still have more to learn. That's often the way it is around here, so we shouldn't be too surprised.
The bone marrow results are back and tell us a bit of a story ..., Here is what we learned. I know it is confusing and I apologize, but I do want to record it.
Chimersism Whole Bone Marrow (Whole means they did not separate the CD3, CD33,and CD56 cells) on 2/20/14 =
42% donor 2 (12/24/2013 was 60%)
5% donor 1 (12/24/2013 was 4%)
53% host (12/24/2013 was 36%)
Chimerisms CD3+ T cells / lymphocytes on 2/20/14 = 26% donor 2
(1/7/14 was 30%, 12/24/13 was 19%)
Chimerism CD33+ myeloid cells / neutrophils on 2/20/13 = 84% donor 2
(1/7/14 was 95%, 12/24/13 was 90%)
Flow cytometry on 2/20/14 tell us that the myleloid cells increased from 8% to 9.8% since 1/28/14.
Oh Bother! It's obvious that the trend is the wrong direction in every cell count.
So what does all this mean? That was our question. What next?
They suggest Terry continue with the Vidaza. A total of 6 are suggested and he has had 2 already. The next one is due to begin next week. However, this could be done in Wenatchee, so it's possible we could be going home as early as next week.
BUT,
They are still discussing the option of a DLI (donor lymphocyte infusion), which would mean we need to stay here for that. If they do a DLI it could possibly be done next week and we will have to stay another couple weeks after that to watch for GVHD.
They will contact us when a decision is made.
We'll let you know ...
Monday, February 24, 2014
Quotes
Elder Connor wrote this morning ... he is doing well ... and sent these two quotes he saw at the Bishops house. (He sends us quotes on occasion. We send him quotes on occasion. We always send a spiritual thought either from the scriptures or conference message or church magazine, etc. It's been fun!)
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.
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.
Friday, February 21, 2014
T90
Today included a blood draw and infusion of immune globulin. We were at the clinic from 10:45am until 4:30pm, but things went well.
WBC = .88(L)
HCT = 29(L)
PLT = 54(L)
ANC = .39(L)
We are at the apartment resting, hydrating, and waiting for supplies from Coram.
Here is another smile for today -
from REDBUBBLE
May not post for the weekend?????
Thursday, February 20, 2014
Sending a SMILE!
We started the day fasting for a blood draw.
After blood draw we shared a breakfast at the bistro. We shared one meal because we didn't want him to eat too much before the biopsy but he needed a little something to eat.
Today it was a bit more painful and they had to do a second entry for the bone piece. We did get our favorite biopsy nurse which made it as pleasant as possible.
We are at the apartment resting, hydrating, and trying to fill the time. I think I'll continue scrapbooking.
Things are fine!
We're sending you a smile because ...
After blood draw we shared a breakfast at the bistro. We shared one meal because we didn't want him to eat too much before the biopsy but he needed a little something to eat.
Today it was a bit more painful and they had to do a second entry for the bone piece. We did get our favorite biopsy nurse which made it as pleasant as possible.
We are at the apartment resting, hydrating, and trying to fill the time. I think I'll continue scrapbooking.
Things are fine!
We're sending you a smile because ...
 |
| image from here |
"a smile is the shortest distance between two people"
Wednesday, February 19, 2014
T88 and Apartment 301
Today's clinic visit was for a CT scan with the not-so-lovely dye drink for an hour previous to the scan. No news from that until next week's team appointment.
Terry is resting and hydrating. He still feels nauseated, but he is hopeful that the BK virus is lessoning a bit. We thought that before, but it worsened again, so we hope it trends downward from here.
We had a few hours this morning to do some more organizing and box emptying. The boxes are now completely empty and the organizing is as done as it's going to get for now. Maybe I'll do some re-organizing throughout the next few days as I use things, but for now, this is what we get.
Here are some photos of the apartment ... #301:
Our door to apartment 301 -
You can see that this is a tiny hall if you notice the corners at the floor of the photo - there is a door to the very left that goes to the stairs. I'm going to go up and down those stairs sometime to see where they go, because I know they don't go to the lobby. I think it goes to the roof and then probably the garage that we cannot use, so these stairs might be useless to us, but we'll see. There is also a door to the very right of our door, facing the stairs door, and it is an apartment.
We step inside the apartment and find this look. The closet to the left is the coat closet and the closet to the right is the laundry closet.
The next door on the right is the extra bedroom -
Here is a closer look at the kitchen -
and a closer look at the family room -
Everything is all scrunched together in this room, but at least I was able to keep my scrapbooking stuff here to work on -
Lastly is a look back at the apartment, as I was standing by the TV -
There you have it!
Terry is resting and hydrating. He still feels nauseated, but he is hopeful that the BK virus is lessoning a bit. We thought that before, but it worsened again, so we hope it trends downward from here.
We had a few hours this morning to do some more organizing and box emptying. The boxes are now completely empty and the organizing is as done as it's going to get for now. Maybe I'll do some re-organizing throughout the next few days as I use things, but for now, this is what we get.
Here are some photos of the apartment ... #301:
Our door to apartment 301 -
You can see that this is a tiny hall if you notice the corners at the floor of the photo - there is a door to the very left that goes to the stairs. I'm going to go up and down those stairs sometime to see where they go, because I know they don't go to the lobby. I think it goes to the roof and then probably the garage that we cannot use, so these stairs might be useless to us, but we'll see. There is also a door to the very right of our door, facing the stairs door, and it is an apartment.
We step inside the apartment and find this look. The closet to the left is the coat closet and the closet to the right is the laundry closet.
The next door on the right is the extra bedroom -
We take a few more steps into the apartment, standing almost at the extra bedroom door, and find this look -
To the left we find the main bath and the master bedroom -
Here is an inside look at the master bedroom -
and master bathroom -
Here is a closer look at the kitchen -
and a closer look at the family room -
Everything is all scrunched together in this room, but at least I was able to keep my scrapbooking stuff here to work on -
Lastly is a look back at the apartment, as I was standing by the TV -
There you have it!
Tuesday, February 18, 2014
We're Back!
Ok, here is a quick run down of the day. Quick, because we just got home from the clinic at 9:40pm.
4:00am - garbage is picked up just outside our window. Makes a rooster sound like fun. ;)
8:00am - visit with the oral doc who said there is "mild signs of GVHD" in Terry's mouth and on his lips. As he explained things it was so interesting to see what he was talking about and to know that is what it is. Not really visible unless you are looking for it.
9:15am - lab draw.
10:15am - Team clinic visit. Didn't really learn anything new, except that the blood counts are lower today (every one of them), making it necessary to come back for a red blood cell transfusion today.
WBC = 0.90(L)
RBC = 2.61(L)
HCT = 25(L) below the magic number, making red cells necessary.
PLT = 45(L)
ANC = 0.42(C)
Creatinine is the lucky winner for the day at 0.98 - excellent for Terry.
11:00am (we were late because our team visit didn't get done until 11:20 or so) - GI consult to discuss GVHD.
We made it home for lunch at about 12:30
Emptied a few more boxes and organized a few more things. Still 3 more boxes and organizing to go.
Received hydration supplies from Coram around 3:30, so we began hydration.
5:30pm - Red blood cells at infusion room.
Walked home in the dark of night. I borrowed a blanket from the infusion room so I could wrap it around me since I didn't have my coat. Oh Bother! It wasn't too bad, except my ears are still cold. ;) I feel pretty lucky that it wasn't a terribly cold night. Entered apartment about 9:40pm.
PS - saw a car with a 12 flag out each front window and each back window had writing on it. Drivers side said 12th Man and the passenger side said 12th Woman. :)
Good Night!
4:00am - garbage is picked up just outside our window. Makes a rooster sound like fun. ;)
8:00am - visit with the oral doc who said there is "mild signs of GVHD" in Terry's mouth and on his lips. As he explained things it was so interesting to see what he was talking about and to know that is what it is. Not really visible unless you are looking for it.
9:15am - lab draw.
10:15am - Team clinic visit. Didn't really learn anything new, except that the blood counts are lower today (every one of them), making it necessary to come back for a red blood cell transfusion today.
WBC = 0.90(L)
RBC = 2.61(L)
HCT = 25(L) below the magic number, making red cells necessary.
PLT = 45(L)
ANC = 0.42(C)
Creatinine is the lucky winner for the day at 0.98 - excellent for Terry.
11:00am (we were late because our team visit didn't get done until 11:20 or so) - GI consult to discuss GVHD.
We made it home for lunch at about 12:30
Emptied a few more boxes and organized a few more things. Still 3 more boxes and organizing to go.
Received hydration supplies from Coram around 3:30, so we began hydration.
5:30pm - Red blood cells at infusion room.
Walked home in the dark of night. I borrowed a blanket from the infusion room so I could wrap it around me since I didn't have my coat. Oh Bother! It wasn't too bad, except my ears are still cold. ;) I feel pretty lucky that it wasn't a terribly cold night. Entered apartment about 9:40pm.
PS - saw a car with a 12 flag out each front window and each back window had writing on it. Drivers side said 12th Man and the passenger side said 12th Woman. :)
Good Night!
Great Weekend!
Our weekend ...
We stopped at the mail box before we left the apartment, so we could put our address box change inside our box, and we found this lovely box of valentines to brighten our day.
And we loved our baby ... Boston Drew Hebdon. (Both baby and mom are doing well. That's always interesting though, that one can be doing fine when there are so many aches and pains involved. It's perspective I guess. State of mind as much as physical state.)
It was nice to be home for more than 24 hours this time, but it was still over too soon. I get so happy to see my family and busy that I forget to take enough pictures, but I'm happy to have a couple.
Our drive back to Seattle was slow but not too eventful. Before we got to Ellensburg we had seen wind, rain, snow, and anywhere from 50 to 35 degree weather, but the roads were fine if the wind didn't blow you around too badly. Then just west of Easton the traffic began to slow down. We weren't sure why, but we were creeping. From there to the east of North Bend we had several miles of 1 mph driving, several 4 mph, and we even got up to 10 mph. Eventually we were able to go 20 to 35 mph. We were slower goers for quite awhile. We stopped at North Bend for groceries and dinner - just fast food, but I was worried about how I was going to make dinner when everything was boxed up - it would have taken forever. We made it back into the apartment at about 6:00pm. Maybe a few minutes earlier???
It was filled with boxes, just the way we left it, but the beds were made, the heater was fixed and back together, the extra table and things sitting around that didn't belong had been taken out, the towels I brought from the other apartment were replaced with nicer towels (lucky us) and the shower curtains had been installed. Oh, the lock on the door is now working too.
It was cold so we had to warm the place up. I warmed myself up trying to unload boxes as quickly and efficiently as I could and finally dropped into bed at 10:10pm. Things are not completely put away, but it's mostly my scrapbooking stuff that still needs arranged, and my just a few other things that shouldn't be too tricky. Now we can find things we need. That became quite the trick last night as we were working with meds and hydration. (we took enough for while we were gone, but had to sort through for things we needed when we got back.) I'll try to put photos of the apartment up soon.
For now, here is what we see as we sit at the table with the computer.
The Space Needle is a lovely view. Too bad it wasn't our view thru the holiday and game days. The other bright lights are cranes. We do see a few of those. I promise to get all the boxes and junk put away before I take another photo in here.
Just barely visible, if you know what it is, is a blue square in the right side of the window. This photo is especially for Auger, and here is a close up. Can you tell what it is? Fans are still alive and well in Seattle.
It was worth leaving boxes filled and heading home for a few days. We'll see what the next weekend brings. We have a busy week and we start early this morning, so I'm ending this post here. I'll be back to post about the day later tonight.
Have a good one!
We stopped at the mail box before we left the apartment, so we could put our address box change inside our box, and we found this lovely box of valentines to brighten our day.
We enjoyed the grandchildren and they enjoyed being together.
And we loved our baby ... Boston Drew Hebdon. (Both baby and mom are doing well. That's always interesting though, that one can be doing fine when there are so many aches and pains involved. It's perspective I guess. State of mind as much as physical state.)
It was nice to be home for more than 24 hours this time, but it was still over too soon. I get so happy to see my family and busy that I forget to take enough pictures, but I'm happy to have a couple.
Our drive back to Seattle was slow but not too eventful. Before we got to Ellensburg we had seen wind, rain, snow, and anywhere from 50 to 35 degree weather, but the roads were fine if the wind didn't blow you around too badly. Then just west of Easton the traffic began to slow down. We weren't sure why, but we were creeping. From there to the east of North Bend we had several miles of 1 mph driving, several 4 mph, and we even got up to 10 mph. Eventually we were able to go 20 to 35 mph. We were slower goers for quite awhile. We stopped at North Bend for groceries and dinner - just fast food, but I was worried about how I was going to make dinner when everything was boxed up - it would have taken forever. We made it back into the apartment at about 6:00pm. Maybe a few minutes earlier???
It was filled with boxes, just the way we left it, but the beds were made, the heater was fixed and back together, the extra table and things sitting around that didn't belong had been taken out, the towels I brought from the other apartment were replaced with nicer towels (lucky us) and the shower curtains had been installed. Oh, the lock on the door is now working too.
It was cold so we had to warm the place up. I warmed myself up trying to unload boxes as quickly and efficiently as I could and finally dropped into bed at 10:10pm. Things are not completely put away, but it's mostly my scrapbooking stuff that still needs arranged, and my just a few other things that shouldn't be too tricky. Now we can find things we need. That became quite the trick last night as we were working with meds and hydration. (we took enough for while we were gone, but had to sort through for things we needed when we got back.) I'll try to put photos of the apartment up soon.
For now, here is what we see as we sit at the table with the computer.
The Space Needle is a lovely view. Too bad it wasn't our view thru the holiday and game days. The other bright lights are cranes. We do see a few of those. I promise to get all the boxes and junk put away before I take another photo in here.
Just barely visible, if you know what it is, is a blue square in the right side of the window. This photo is especially for Auger, and here is a close up. Can you tell what it is? Fans are still alive and well in Seattle.
It was worth leaving boxes filled and heading home for a few days. We'll see what the next weekend brings. We have a busy week and we start early this morning, so I'm ending this post here. I'll be back to post about the day later tonight.
Have a good one!
Thursday, February 13, 2014
A Blessing Today!
Just a Dexa scan today. Other appointments were postponed until Terry's body is a bit more hydrated. But our day wasn't empty.
We got the key to the new apartment a day early so we could begin moving things over. We cannot stay there overnight, but they allowed us to move things. Our hope is to go home for the weekend, so we are going to have to have everything moved and keys turned in before we leave. I boxed some things earlier, and did a lot of boxing and moving things today.
The other apartment in different size and shape but I finally got it workable for us. My biggest problem is fitting in my scrapbooking stuff. I almost packed it up to take it home, but moved furniture one more time just to see if I could make it work. And it did. I moved every piece of furniture in the living room at least twice and some three and four times. Oh Bother! I asked them to remove the sofa table to storage and they agreed to, so that gives us a bit more space to use.
I also took a few shelving units and a bed side table and lamps over to that apartment. We were told we could move any piece of furniture we wanted because it is just going to be stored for the next several months. This gave us a few more options for storing things, though it's still not enough.
The new kitchen is smaller. Oh Bother! The master bedroom is much better ..., I wont hit my arm on a dresser when I walk in and out. The master bathroom is quite a bit bigger and has a nice storage closet. However, I need that storage closet in the kitchen, not the bathroom. The extra bedroom is about the same, possibly a foot or so wider. There is still a nice hall closet and the laundry closet is possibly a bit bigger, but not enough to make it usable space.
I'll try to put up some photos next week.
Now for the best news of the day ... our blessing for the day -
Thomas and Dana had a baby boy this morning ...
Boston Drew Hebdon
6 lbs, 1 oz.
3 weeks early, but healthy!
He joins his brother, Auger Wayne, and sister, Akleigh Elyn.
Sorry no photos of him. Maybe this weekend.
If blood counts allow, we are goin' home to see him! I'm excited, but Terry is not feeling well enough to feel too excited about anything right now. Kinda nauseated. He didn't help move things, except carrying a lamp over one time, but he did come over to the apartment with me a couple times. I think he'd rather be asleep not feeling anything right now. We've drugged him as much as we feel comfortable with, but it's not doing enough yet. I wish I could help him more.
Okay, I'll post a little Valentine tonight since I can't promise I will post one tomorrow! We do hope you have a lovely day! ;)
We got the key to the new apartment a day early so we could begin moving things over. We cannot stay there overnight, but they allowed us to move things. Our hope is to go home for the weekend, so we are going to have to have everything moved and keys turned in before we leave. I boxed some things earlier, and did a lot of boxing and moving things today.
The other apartment in different size and shape but I finally got it workable for us. My biggest problem is fitting in my scrapbooking stuff. I almost packed it up to take it home, but moved furniture one more time just to see if I could make it work. And it did. I moved every piece of furniture in the living room at least twice and some three and four times. Oh Bother! I asked them to remove the sofa table to storage and they agreed to, so that gives us a bit more space to use.
I also took a few shelving units and a bed side table and lamps over to that apartment. We were told we could move any piece of furniture we wanted because it is just going to be stored for the next several months. This gave us a few more options for storing things, though it's still not enough.
The new kitchen is smaller. Oh Bother! The master bedroom is much better ..., I wont hit my arm on a dresser when I walk in and out. The master bathroom is quite a bit bigger and has a nice storage closet. However, I need that storage closet in the kitchen, not the bathroom. The extra bedroom is about the same, possibly a foot or so wider. There is still a nice hall closet and the laundry closet is possibly a bit bigger, but not enough to make it usable space.
I'll try to put up some photos next week.
Now for the best news of the day ... our blessing for the day -
Thomas and Dana had a baby boy this morning ...
Boston Drew Hebdon
6 lbs, 1 oz.
3 weeks early, but healthy!
He joins his brother, Auger Wayne, and sister, Akleigh Elyn.
Sorry no photos of him. Maybe this weekend.
If blood counts allow, we are goin' home to see him! I'm excited, but Terry is not feeling well enough to feel too excited about anything right now. Kinda nauseated. He didn't help move things, except carrying a lamp over one time, but he did come over to the apartment with me a couple times. I think he'd rather be asleep not feeling anything right now. We've drugged him as much as we feel comfortable with, but it's not doing enough yet. I wish I could help him more.
Okay, I'll post a little Valentine tonight since I can't promise I will post one tomorrow! We do hope you have a lovely day! ;)
 |
| image from here |
Wednesday, February 12, 2014
Only two appointments today!
Today we had the last Vidaza infusion of this round. It was as quick and painless as possible. :)
We went back to the clinic this afternoon for an LTFU (Long Term Follow Up) class. We've been to this type of class before, but we had it on our schedule so we decided to go to make everyone happy. It was slow and boring, but at least the things we need to watch out for will be more fresh on our minds.
That's it for the day, except working on plans for a family reunion this summer.
No puzzle today ...
We got word this evening that we will begin our move Friday. We'll see if we can do that quickly and as easy as possible.
OH! - We celebrate 34 years today!
One year we spent the day in the chemo room. This year we might have to celebrate on another day because Terry is so not feeling well enough to go out for dinner, he's resting and hydrating and trying to remain positive and pleasant through all his discomfort. It's kinda like a birthday when we get older - we're just another day older, party or not. It's still a good thing.
We went back to the clinic this afternoon for an LTFU (Long Term Follow Up) class. We've been to this type of class before, but we had it on our schedule so we decided to go to make everyone happy. It was slow and boring, but at least the things we need to watch out for will be more fresh on our minds.
That's it for the day, except working on plans for a family reunion this summer.
No puzzle today ...
We got word this evening that we will begin our move Friday. We'll see if we can do that quickly and as easy as possible.
OH! - We celebrate 34 years today!
One year we spent the day in the chemo room. This year we might have to celebrate on another day because Terry is so not feeling well enough to go out for dinner, he's resting and hydrating and trying to remain positive and pleasant through all his discomfort. It's kinda like a birthday when we get older - we're just another day older, party or not. It's still a good thing.
Tuesday, February 11, 2014
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.
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.
Monday, February 10, 2014
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.
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.
Sunday, February 9, 2014
The Weekend Ended
The first thing I'll share is about how Terry is --- he is feeling more nauseated the last few days and has less energy. The sinuses are still not clearing up, however we are hoping that the BK virus is slightly improving and hope that it continues in that direction. I wish we had some good health news, but we just don't. However, we do have some good news ..., you'll learn about it if you continue reading.
We had a Vidaza infusion Saturday and then we left for Royal City, (with a detour to Costco on the way). We arrived home (HOME ... HAPPY DAY!) sometime after 4:00pm and carried our boxes in. I can't believe how much we acquired over the few/several months here, which included Christmas. It was stuff we aren't using now and didn't really wanna move it to the new apartment.
We then headed in to the last basketball game BJo had for the season, which was Sr. Night (where they recognize the seniors and their parents). We talked to the doctors and they agreed to let us go, even suggesting to re-schedule our infusion today (moving it from 10:00 to 3:30).
It snowed while we were in watching the game Saturday night and the roads were not fun traveling from town to home, but we all made it safely. We woke up to these drifts out our front door, and cancelled church meetings.
We had planned to go to Sacrament meeting but instead we had the kids over for brunch. I was enjoying the company too much to remember to take more pics, so this is what we get! :) Pictures or not, we enjoyed the visit.
Good thing we left a few minutes earlier than we planned, cause the traveling was slower goin' for awhile. Several miles before and up Snoqualmie Pass were 45 mph, and coming down was 20 mph, but there were no accidents and we had no problems. We drove straight to the clinic, arriving about 10 or 15 minutes late for the appointment, but it wasn't a problem.
It was so nice to be on our home turf and with family, even though it was short (less than 24 hours). We are anxious for the day when we can be home for good. I didn't post anything about going home earlier because I didn't want to say something and then have it change. Anthony and BJo had been sick (throwing up and icky) and we weren't sure if we should go. Well, I was hesitant, but Terry was determined to be there for BJo's Sr. Night. If BJo was too sick to go to the game then we would probably have stayed here, but she was determined to go too, so that was all we needed to know.
So if either of us get sick it's our own fault.
Oh, they got a bit of snow here in Seattle too. There is not much, but we can see it here and there.
Friday, February 7, 2014
Friday
The weekend is upon us and it is a full one. We'll post more about it later. For today ... it was not too filled - a blood draw and an infusion of Vidaza, and then the normal hydration at home. No new news ... things are not changing, so there really isn't anything to report.
We picked up our schedule for the week and learned that we have a full week ahead. We were warned about this at our last team visit, so we were not really surprised. We will continue to let you know what's happening..., after the weekend. (Sorry, I just don't wanna blog tomorrow - I'll see how I feel about it Sunday or Monday - maybe we'll have another puzzle to share)
Until then, have a good weekend!
Even if it is still cold!
We picked up our schedule for the week and learned that we have a full week ahead. We were warned about this at our last team visit, so we were not really surprised. We will continue to let you know what's happening..., after the weekend. (Sorry, I just don't wanna blog tomorrow - I'll see how I feel about it Sunday or Monday - maybe we'll have another puzzle to share)
Until then, have a good weekend!
Even if it is still cold!
Thursday, February 6, 2014
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!
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!
Wednesday, February 5, 2014
Not much goin' on!
No appointments today so we had a lazy day.
We have been putting a difficult puzzle together (it is so tricky we have threatened to stop and put it back in the box several times).
I spent a little time loading the car with the boxes that will go home instead of being moved to the other apartment whenever we do move (no word yet, just being prepared).
That's about it ...
We have been putting a difficult puzzle together (it is so tricky we have threatened to stop and put it back in the box several times).
I spent a little time loading the car with the boxes that will go home instead of being moved to the other apartment whenever we do move (no word yet, just being prepared).
That's about it ...
Tuesday, February 4, 2014
T73
Clinic visit today brought us a smile, even though Terry's health hasn't really improved. Things are going about the same, though counts are so slightly up that it's probably not worth mentioning, and if like many times before, they'll possibly be down next draw ..., but we take what we can get.
WBC = .72(L)
RBC = 3.17(L)
HCT = 30(L)
PLT = 52(L)
ANC = 0.28(C)
We need to watch the Creatinine and Glucose levels, they are a bit higher than we'd like, but not critical.
Great news is that one of his meds that he takes three times a day (with nothing to eat two hours before or after) has been changed to twice a day, so that's five pills a day less now, making things much easier. :) We are now reworking things to make our medication schedule less complicated.
We start Vidaza infusion (targeting MDS) again on Thursday, daily for seven days. It sounds like another bone marrow biopsy is set up for the 28th, and we will have some busy days ahead with all the "work up" they will begin.
WBC = .72(L)
RBC = 3.17(L)
HCT = 30(L)
PLT = 52(L)
ANC = 0.28(C)
We need to watch the Creatinine and Glucose levels, they are a bit higher than we'd like, but not critical.
Great news is that one of his meds that he takes three times a day (with nothing to eat two hours before or after) has been changed to twice a day, so that's five pills a day less now, making things much easier. :) We are now reworking things to make our medication schedule less complicated.
We start Vidaza infusion (targeting MDS) again on Thursday, daily for seven days. It sounds like another bone marrow biopsy is set up for the 28th, and we will have some busy days ahead with all the "work up" they will begin.
Monday, February 3, 2014
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 ...
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!
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!
Saturday, February 1, 2014
Early Saturday ... Avoided Catastrophe
My sister sent me this photo wondering if we had seen the Space Needle like this.
 |
| From Sea to shining Sea(hawks)! Credit: Bennett Smith (a Seattleite living in NJ!) |
We don't get out much at night and we have no view of it from our windows. So, this morning I was curious and headed up the stairs to the roof to see what I could see. Surely with the big game tomorrow it would be lit up, and I was curious to find out.
This is what I saw
Not quite as bright - the blue was not very noticeable. Maybe from a different view point or time of night it would be better, but this was still fun to see.
Now, about the avoided catastrophe ...
Of course it was dark when I stepped out into the garden area. I only stepped out a couple steps for the picture and was going to go back in. But I felt like I might be a little unsteady and taking night shots are a bit blurry, especially if not steady, so I walked over to the far edge where there is a view finder to rest my camera on and take a better photo.
Half way there I walked around a planter (on my right) and my left foot came down on what felt like a pipe or board on the floor. I couldn't see very well, but looked down to see if I could tell what I stepped on so I could be careful when I came back.
OH MY!
There was no floor! Just the joists!
I had luckily stepped right on one joist right in the middle area of my foot so I was stable and upright. ;) Had I not stepped on that joist I would have gone down and it wouldn't have been pretty. It was dark enough that I couldn't see how far down I would have gone, but I would guess at least a foot or so. I could have broken a leg or arm or rib or .... Not sure how I would have landed or caught myself. Maybe I'd be passed out and still up there instead of here writing this. Maybe I'd be laying there squealing like the lady next door. (okay, maybe that's not funny, and I don't mean it in a mean way toward her, but sometimes we just have to smile at our misfortunes...) Luckily I did tell Terry where I was going, so I'm sure it wouldn't have been too long before he came looking, and then if he couldn't see .... Oh Bother!
I couldn't believe they didn't have that roped off or signs to help us know what was going on. I'm heading to the office today to kindly suggest an addition of rope, tape, and or signs, because some of us do go to the roof in the dark of the night or morning hours.
I feel blessed to be safe and sound! I do believe that Someone is watching out for us!
Oh, I forgot to show you the flag on the wall at the lab check in station.
We have seen it there before, but I either haven't had my camera or there were just too many people in the way. Yesterday I had a clear shot for about one minute and then it began to buzz with people again. I didn't even notice the banner on the counter when I took the photo, but there were people standing there just to the left of this view so I couldn't have seen more of it even if I tried.
We check in for labs at that counter. The nurse then comes through the door and calls our name when he/she is ready for us. We go through those doors into a large room with several stations set up for blood draw. Maybe I can get a photo of that some weekend when there aren't too many people in there.
Well, I don't have any medical news. Just some sights and sounds from Seattle.
I'm not sure if I'll post tonight or tomorrow because there won't be any more medical news until Tuesday, unless something unforeseen happens. We aren't planning on that ..., and I think I'll not go to the roof in the dark again for awhile.
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