Here is the news for the day:
The T cells are stable, donor 2 is about 30%. Myeloid cells are also stable or about the same. The good news is that they are not worse, but the bad new is that they are not better.
Because MDS can become myeloid leukemia they are focusing on that. That is the reason for this transplant. We have known this to always be the case and are grateful for the doctors efforts in trying to make this successful, but we aren't there yet.
Doctors have decided to do another week of Vidasa infusions. These infusions target MDS, are in clinic chemo treatments, and will begin the middle of next week sometime.
Still problems with sinuses and urine infection, and still low blood counts.
Today is the last day of Foscarnet infusion so we hope that helps the magnesium level not be so depleted and maybe the cramping will subside some in the next few days.
That's the news!
Friday, January 31, 2014
Thursday, January 30, 2014
Wednesday, January 29, 2014
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!
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!
Tuesday, January 28, 2014
T66
We had our bone marrow biopsy and blood draw today. Everyone at the clinic was so happy to meet Michael and see our sweet Elsie. It was a delight for all. We enjoyed our time together and are grateful for Michael and Lisa for inviting them. We enjoyed the visits with them too.
I just about missed getting a photo, but at the last minute realized my mistake and was able to get this shot -
She is so sweet. We had a great time and she was happy to be here, however, the last hour or so it seemed to me that little things would happen that made me think she must miss her mommy. She was happy, but ready to go. We love her and her parents. I took my camera down to the sidewalk to get a photo of all of our guests together before they left and didn't even remember to get one then until we were walking back up the stairs after they left. Oh Bother! Oh well, life isn't about photos it's about memories. No, it's really much more than that ...
Here are a couple photos that Michael got with his phone (and I added later). We were in the clinic for the bone marrow biopsy when these were taken. (more added info - the next day we went to the clinic and the receptionist at the lab told us she had met our son and granddaughter and that she was so cute. It was such a pleasant experience for all of us. Happy day!)
We listened to the State of the Union and I got kinda tired of it ... so I decided to put together a puzzle - much more exciting. (I don't like to talk politics too much, but I guess I just told you where I stand!)
Now, as for how Terry is feeling ...
He is fine! But you already knew that didn't you!
We are grateful that today's bone marrow biopsy was one of the easier rather than harder he has experienced. He will feel some discomfort for a few days, but it will not be his worst problem or discomfort.
We received a call this afternoon telling us that Terry's platelets are low and he will have a platelets infusion tomorrow.
We continue daily hydration and Foscarnet infusions.
Oh, another bit of news. We also heard this evening that the move is going to be postponed until further notice. We are still Apt. #312 for a few more days or weeks or whatever it ends up being.
I just about missed getting a photo, but at the last minute realized my mistake and was able to get this shot -
She is so sweet. We had a great time and she was happy to be here, however, the last hour or so it seemed to me that little things would happen that made me think she must miss her mommy. She was happy, but ready to go. We love her and her parents. I took my camera down to the sidewalk to get a photo of all of our guests together before they left and didn't even remember to get one then until we were walking back up the stairs after they left. Oh Bother! Oh well, life isn't about photos it's about memories. No, it's really much more than that ...
Here are a couple photos that Michael got with his phone (and I added later). We were in the clinic for the bone marrow biopsy when these were taken. (more added info - the next day we went to the clinic and the receptionist at the lab told us she had met our son and granddaughter and that she was so cute. It was such a pleasant experience for all of us. Happy day!)
We listened to the State of the Union and I got kinda tired of it ... so I decided to put together a puzzle - much more exciting. (I don't like to talk politics too much, but I guess I just told you where I stand!)
Now, as for how Terry is feeling ...
He is fine! But you already knew that didn't you!
We are grateful that today's bone marrow biopsy was one of the easier rather than harder he has experienced. He will feel some discomfort for a few days, but it will not be his worst problem or discomfort.
We received a call this afternoon telling us that Terry's platelets are low and he will have a platelets infusion tomorrow.
We continue daily hydration and Foscarnet infusions.
Oh, another bit of news. We also heard this evening that the move is going to be postponed until further notice. We are still Apt. #312 for a few more days or weeks or whatever it ends up being.
Monday, January 27, 2014
T65
We had a free day today ..., well, free from appointments.
We filled it with other things. Today was a cleaning and laundry day.
And then we had visitors - Michael and Lisa Christensen were coming to bring Melissa Sprague home and brought Michael and Elsie with them. We had a nice visit and now have Michael and Elsie here for the night. We have loved every minute of it. I haven't gotten a photo yet, so I apologize for that, and want to promise that I will tomorrow.
We are so grateful that Tawnee was willing to miss Elsie for a night and parts of two days ..., oh, and Michael too. :)
We filled it with other things. Today was a cleaning and laundry day.
And then we had visitors - Michael and Lisa Christensen were coming to bring Melissa Sprague home and brought Michael and Elsie with them. We had a nice visit and now have Michael and Elsie here for the night. We have loved every minute of it. I haven't gotten a photo yet, so I apologize for that, and want to promise that I will tomorrow.
We are so grateful that Tawnee was willing to miss Elsie for a night and parts of two days ..., oh, and Michael too. :)
Sunday, January 26, 2014
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! ;)
Saturday, January 25, 2014
All is Well!
Don't know what to say today ...
Still the same!
Oh!
One puzzle done!
Another one on the table!
Still the same!
Oh!
One puzzle done!
Another one on the table!
Friday, January 24, 2014
T62
Blood draw and phone visit was all we had at the clinic today. Things are about the same as the last couple days concerning Terry's health - there is nothing really to report.
What we can report is that we learned that BJo was accepted to BYU-I this morning. We are happy, and yet ever so aware of the fact that she will be going too soon. We will really try to soak up the time together when we get home and before she leaves. We don't know what track yet, but hope for fall.
Dennis and MaryAnn came to visit us today. It was lovely! We enjoyed our visit and feel a love for them and appreciate their love for us. We are blessed to be related to such good people.
And, we've started putting together a new puzzle. Dennis and MaryAnn brought a few with them ..., so here goes ....
What we can report is that we learned that BJo was accepted to BYU-I this morning. We are happy, and yet ever so aware of the fact that she will be going too soon. We will really try to soak up the time together when we get home and before she leaves. We don't know what track yet, but hope for fall.
Dennis and MaryAnn came to visit us today. It was lovely! We enjoyed our visit and feel a love for them and appreciate their love for us. We are blessed to be related to such good people.
And, we've started putting together a new puzzle. Dennis and MaryAnn brought a few with them ..., so here goes ....
Thursday, January 23, 2014
T61
We met with the infectious disease doctors today and they agreed that we stay the course that has been set. These kind people apologize for not having a sure fire way of clearing this up tomorrow or even at all and they express sympathy and concern for the discomfort and pain Terry experiences. It is common for CLL patients to suffer with chronic sinusitis so that just gives us one more reason to hope for success with this transplant.
Our afternoon was spent hydrating and infusing Foscarnet, and things went well. It is nice to be able to infuse that at home for 4 1/2 hours instead of going in to the clinic which would take even more time and be a much less comfortable place to rest. Being in an apartment does leave something to be desired, but it does have some comforts of life that we enjoy. We are happy to have those comforts - it IS a BIG deal! And, being together is another!
The BK virus is positive in his urine and there is not much they can do for that right now because of the other problems that medication causes the patient. However, they did prescribe Pyridium to help with the discomfort and pain.
The blood counts are still low, which doesn't help with all of his health issues, but actually contribute to them. We have another blood draw tomorrow and we will learn if he will need a platelets or other blood product infusion.
I don't really have any other news and we haven't done a puzzle in the last couple days. I did order a couple and somehow messed up and had them sent to the wrong address. Oh Bother!
I guess I'll spend some time organizing a few things because we will be moving sometime between the 29th of Jan. and 1st of Feb. The construction on that half of the building will be completed this weekend and they want to work on this half of the building, so they will move us to a different apartment - #301. One more experience to add to our life! We'll make it a good one.
As I sat at the computer last night (sending photos to be printed) I heard the yelling, screeching and squealing of a lady that lives across the street. It sounds like a wild animal in search of it's prey or warning off predators. It has become a familiar sound to us here, but it is an eerie sound that especially feels worse as we sit by the window in the evening as she sounds off. We remember it from the first stay here a few years ago, but it is definitely more often and worse than it was then, probably because we are now on this side of the building. We are sure that it is due to some sort of physical and/or mental ailment and we feel sorry for her. She is likely no threat to anyone but the sound can certainly be unnerving. We don't hear it as easily in our bedroom and we hope that the location of apartment #301 will make it even more difficult to hear.
THANK YOU to all who are helping our children back home. We miss you all and send our love!
Our afternoon was spent hydrating and infusing Foscarnet, and things went well. It is nice to be able to infuse that at home for 4 1/2 hours instead of going in to the clinic which would take even more time and be a much less comfortable place to rest. Being in an apartment does leave something to be desired, but it does have some comforts of life that we enjoy. We are happy to have those comforts - it IS a BIG deal! And, being together is another!
 |
| Image is a card on our fridge, given to us from a friend. |
Terry is suffering with cramps in his calves and is awakened at night with those cramps. His magnesium, potassium, and calcium levels are being watched carefully and are in the normal range due to additives in his hydration. Cramps are a common things transplant patients experience, and we remember this from the first transplant he had in 2010. These are not fun!The BK virus is positive in his urine and there is not much they can do for that right now because of the other problems that medication causes the patient. However, they did prescribe Pyridium to help with the discomfort and pain.
The blood counts are still low, which doesn't help with all of his health issues, but actually contribute to them. We have another blood draw tomorrow and we will learn if he will need a platelets or other blood product infusion.
I don't really have any other news and we haven't done a puzzle in the last couple days. I did order a couple and somehow messed up and had them sent to the wrong address. Oh Bother!
I guess I'll spend some time organizing a few things because we will be moving sometime between the 29th of Jan. and 1st of Feb. The construction on that half of the building will be completed this weekend and they want to work on this half of the building, so they will move us to a different apartment - #301. One more experience to add to our life! We'll make it a good one.
As I sat at the computer last night (sending photos to be printed) I heard the yelling, screeching and squealing of a lady that lives across the street. It sounds like a wild animal in search of it's prey or warning off predators. It has become a familiar sound to us here, but it is an eerie sound that especially feels worse as we sit by the window in the evening as she sounds off. We remember it from the first stay here a few years ago, but it is definitely more often and worse than it was then, probably because we are now on this side of the building. We are sure that it is due to some sort of physical and/or mental ailment and we feel sorry for her. She is likely no threat to anyone but the sound can certainly be unnerving. We don't hear it as easily in our bedroom and we hope that the location of apartment #301 will make it even more difficult to hear.
THANK YOU to all who are helping our children back home. We miss you all and send our love!
Wednesday, January 22, 2014
T60
Hydration and infusion of Foscarnet took place this morning without any problem. However, this new medication causes tingling in the mouth/lips, and Terry did feel that, but it begins to go away after infusion is complete.
We talked with the nurse on the phone today but had no other appointments.
Other than that, we had more of the same with resting, walking, watching TV, scrapbooking, etc. We are playing the waiting game ..., still.
We talked with the nurse on the phone today but had no other appointments.
Other than that, we had more of the same with resting, walking, watching TV, scrapbooking, etc. We are playing the waiting game ..., still.
Tuesday, January 21, 2014
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.
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.
Elder Connor Hebdon
Connor had a transfer, so here is his new address.
He is doing well!
His last email was wonderful ..., one of those letters that brings tears to your eyes and gives peace and satisfaction to your mind and soul. He has experienced tender mercies that help him understand his purpose for this moment in his life and mission. Due to it's spiritual nature, we choose to share only that much about it in this place and time.
Elder Connor Hebdon
200 Fernwood Rd. - APT #36
Wintersville, Ohio
43953
He is doing well!
His last email was wonderful ..., one of those letters that brings tears to your eyes and gives peace and satisfaction to your mind and soul. He has experienced tender mercies that help him understand his purpose for this moment in his life and mission. Due to it's spiritual nature, we choose to share only that much about it in this place and time.
Monday, January 20, 2014
Holiday!
No trips anywhere today. We needed to stay close to home (home away from home). So ..., puzzle it was, and here it is ...
We think we did this puzzle a few years ago when we were here. We think we will not do it again!
:)
Not a good photo and it seemed just as hard to see these colors as we were putting it together.
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 ...
:)
Sunday, January 19, 2014
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!
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!
Saturday, January 18, 2014
T56
No real medical news today. Just another day at the apartment. It was just too cold to go out this morning, so we stayed in and got a little education today as we watched the History channel, hearing some interesting things about the US.
I completed the third 2" binder filled with scrapbook pages. I cannot know for sure, but I wonder if I have four more to go.
Terry walked down to get the mail and brought a puzzle back from the cupboard and we started putting it together. On his way back he saw the vending machine and had a thought ... root beer floats ... so he came and got some change and bought a can of root beer and we had floats for a 7:00pm snack with his meds. It was great!
I completed the third 2" binder filled with scrapbook pages. I cannot know for sure, but I wonder if I have four more to go.
Terry walked down to get the mail and brought a puzzle back from the cupboard and we started putting it together. On his way back he saw the vending machine and had a thought ... root beer floats ... so he came and got some change and bought a can of root beer and we had floats for a 7:00pm snack with his meds. It was great!
Friday, January 17, 2014
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 ...
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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 ...
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.
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.
Thursday, January 16, 2014
T54
No appointments today so we decided to walk to Goodwill (about 11 blocks there and back), where I did find a cute yellow 1 quart colander and small red tier that I thought I needed..., okay, I just wanted.
We came back to the apartment and had lunch and hydration then drove to the bank, post office, and grocery store. Things went quickly and smoothly and we were back at the apartment for the rest of the day.
We infused Ganciclovir and Terry felt a need to get out and do some more walking, so we walked to Subway (about 10.5 blocks there and back) to purchase some dinner.
The day is done..., but the puzzle we're doing is not done. It is one of the trickiest yet or we are getting really slow ..., or both.
Good Night!
We will be off to appointments tomorrow...
We came back to the apartment and had lunch and hydration then drove to the bank, post office, and grocery store. Things went quickly and smoothly and we were back at the apartment for the rest of the day.
We infused Ganciclovir and Terry felt a need to get out and do some more walking, so we walked to Subway (about 10.5 blocks there and back) to purchase some dinner.
The day is done..., but the puzzle we're doing is not done. It is one of the trickiest yet or we are getting really slow ..., or both.
Good Night!
We will be off to appointments tomorrow...
Wednesday, January 15, 2014
Today
We got the last Vidaza infusion today. That will make things easier.
We infused the last Meropenem today. That will be a lot easier.
We still infuse Ganciclovir (at home) and hydration (also at home) each day and meds are given at the same times as before, so we are familiar with that schedule, but still trying to tweak it a bit to make it more convenient for meal times. It's a bit trick when some are with food and others are empty stomach, and some are not to be taken with each other, and some have to be taken at certain times of the day. Trying to work around all of those should be easy, but they don't fit so nicely together as one might think.
Terry had a CT scan today to check the lymph nodes in the chest and neck, and to check the sinuses. This wasn't a hard scan, but the drink he has to take throughout the hour before the scan upsets his stomach a bit and he feels kinda icky. We came home to rest a bit and began a new puzzle I had ordered a couple weeks ago (and it finally came).
We just finished this awesome puzzle early this morning. It was a tricky puzzle, especially because of the odd shapes of the pieces. The edges were not easy and more than half the puzzle was done before we found the last couple pieces to the edge. The pieces were glossy and pretty making it an enjoyable puzzle.
We infused the last Meropenem today. That will be a lot easier.
We still infuse Ganciclovir (at home) and hydration (also at home) each day and meds are given at the same times as before, so we are familiar with that schedule, but still trying to tweak it a bit to make it more convenient for meal times. It's a bit trick when some are with food and others are empty stomach, and some are not to be taken with each other, and some have to be taken at certain times of the day. Trying to work around all of those should be easy, but they don't fit so nicely together as one might think.
Terry had a CT scan today to check the lymph nodes in the chest and neck, and to check the sinuses. This wasn't a hard scan, but the drink he has to take throughout the hour before the scan upsets his stomach a bit and he feels kinda icky. We came home to rest a bit and began a new puzzle I had ordered a couple weeks ago (and it finally came).
We just finished this awesome puzzle early this morning. It was a tricky puzzle, especially because of the odd shapes of the pieces. The edges were not easy and more than half the puzzle was done before we found the last couple pieces to the edge. The pieces were glossy and pretty making it an enjoyable puzzle.
Tuesday, January 14, 2014
Tuesday Appointments
Today we added a blood draw, nutrition visit, and team visit to our schedule. All of that before the Vidaza infusion. Every thing else on the schedule, as far as meds and infusions continued to happen too. It worked out though there were a few that had some time changes when we administered them.
We have a couple medicine changes, but other than that, nothing is new. We did learn that the bone marrow biopsy that they do at day 56 will not be done. Well that is awesome. The Vidaza infusion does not work fast enough to show results so soon, so they will skip this one. We are okay with that of course. Next one takes place at about day 84, but they might move it up to day 75 or ??? No decision has been made yet.
We had some internet problems today, but they finally got it fixed, so we're up and running again.
That is about it ...
We have a couple medicine changes, but other than that, nothing is new. We did learn that the bone marrow biopsy that they do at day 56 will not be done. Well that is awesome. The Vidaza infusion does not work fast enough to show results so soon, so they will skip this one. We are okay with that of course. Next one takes place at about day 84, but they might move it up to day 75 or ??? No decision has been made yet.
We had some internet problems today, but they finally got it fixed, so we're up and running again.
That is about it ...
Monday, January 13, 2014
T51
We look at the calendar every day to check the date and the day. I have written the T# on each day to remind us where we are in this transplant. There isn't anything else written on our calendar because we have schedules and papers that contain all that other important info. However, when we look at the calendar we get to see the upper portion with a picture and saying. This month is a great look I'll share because I don't have anything else to say today, except we are keepin' on keepin' on.
Sunday, January 12, 2014
T50
Well, today is T50 - that means we are half way through it. We hope things go smoothly enough that we don't have to stay too long past T100. We are not holding our breath, but we are crossing our fingers. Okay, maybe we are not even crossing our fingers, but we are praying!!!!!
Today was filled with infusions and Terry was feeling rather "filled" - not really enjoying the day. He did however get the IVIG and we hope that works wonders.
Saturday, January 11, 2014
A look at our day:
This was our schedule for the day (approximate times - give or take only a few minutes either way):
5:00am - get Meropenem infusion and hydration out of the fridge. (Elaine gets up to do this because she is normally up at that time. Terry remains in bed because he is up through the middle of the night and needs to get some rest.)
6:00am - begin Meropenem infusion (Terry remains in bed for this.)
- take meds (9 pills).
6:30am - disconnect infusion.
7:30am - nasal rinse.
- get ready.
8:15am - breakfast.
- take meds (8 pills and 1 oil).
8:40am - walk to clinic. (Terry noticed that his hat doesn't fit him anymore - too much hair loss.)
9:00am - check in for Vidaza infusion. (The check in went rather slowly this morning.)
10:30am - walk back to apartment. (in the chilling wind, with a cup of hot cocoa which is complements of SCCA or volunteers or ??? It's always available on Saturdays and Sundays. At about 12:00 it began to rain and the wind was blasting it into our windows so we were glad we weren't having to walk in that. A few minutes later we had some loud and long thunder crackling around us - I love that sound.)
11:10am - take meds (3 pills and 1 oil).
- lunch.
1:00pm - take Meropenem out of the fridge.
2:00pm - take meds (5 pills).
- infuse Meropenem. (Today the game is on! or was on. Terry watched the Seahawks game safe and warm in the apartment. We Won! No treats for him though, because the meds he takes at this hour are to be taken on an empty stomach - nothing for two hours before or after.)
2:30pm - disconnect Meropenem.
- immediately begin hydration infusion (as soon as Meropenem is complete).
3:30pm - take Ganciclovir out of the fridge.
4:30pm - take meds (4 pills and 1 oil).
- disconnect hydration.
- immediately begin infusing Ganciclovir (as soon as hydration is complete).
- dinner.
5:30pm - disconnect infusion.
7:00pm - take meds (8 pills).
- nasal rinse.
8:00pm - take Meropenem out of the fridge.
8:30pm - take meds (3 pills and 1 oil) with light snack.
9:00pm - infuse Meropenem.
9:30pm - disconnect infusion.
9:45pm - go to bed.
We will keep this schedule as closely as possible for the next week or more, but will add clinic blood draws and team visits to it on Tuesdays and Fridays. We'll play a juggling act trying to keep things going in proper timing and sequence as much as we possibly can. We take meds with us when the timing doesn't allow us to be at the apartment. Tomorrow will be a bit tricky because we will not only get the Vidaza infusion, but will also get the IG infusion which will take somewhere between 3 1/2 to 6 hours. We'll take everything we need and figure it out one step at a time.
Once a week (usually Mondays) we add change dressing to our schedule, which takes about 15 minutes. We usually do that after the morning shower. We'll see if that timing works for us this Monday with these infusions taking up so much of our time.
We just keep goin' ...
5:00am - get Meropenem infusion and hydration out of the fridge. (Elaine gets up to do this because she is normally up at that time. Terry remains in bed because he is up through the middle of the night and needs to get some rest.)
6:00am - begin Meropenem infusion (Terry remains in bed for this.)
- take meds (9 pills).
6:30am - disconnect infusion.
7:30am - nasal rinse.
- get ready.
8:15am - breakfast.
- take meds (8 pills and 1 oil).
8:40am - walk to clinic. (Terry noticed that his hat doesn't fit him anymore - too much hair loss.)
9:00am - check in for Vidaza infusion. (The check in went rather slowly this morning.)
10:30am - walk back to apartment. (in the chilling wind, with a cup of hot cocoa which is complements of SCCA or volunteers or ??? It's always available on Saturdays and Sundays. At about 12:00 it began to rain and the wind was blasting it into our windows so we were glad we weren't having to walk in that. A few minutes later we had some loud and long thunder crackling around us - I love that sound.)
11:10am - take meds (3 pills and 1 oil).
- lunch.
1:00pm - take Meropenem out of the fridge.
2:00pm - take meds (5 pills).
- infuse Meropenem. (Today the game is on! or was on. Terry watched the Seahawks game safe and warm in the apartment. We Won! No treats for him though, because the meds he takes at this hour are to be taken on an empty stomach - nothing for two hours before or after.)
2:30pm - disconnect Meropenem.
- immediately begin hydration infusion (as soon as Meropenem is complete).
3:30pm - take Ganciclovir out of the fridge.
4:30pm - take meds (4 pills and 1 oil).
- disconnect hydration.
- immediately begin infusing Ganciclovir (as soon as hydration is complete).
- dinner.
5:30pm - disconnect infusion.
7:00pm - take meds (8 pills).
- nasal rinse.
8:00pm - take Meropenem out of the fridge.
8:30pm - take meds (3 pills and 1 oil) with light snack.
9:00pm - infuse Meropenem.
9:30pm - disconnect infusion.
9:45pm - go to bed.
We will keep this schedule as closely as possible for the next week or more, but will add clinic blood draws and team visits to it on Tuesdays and Fridays. We'll play a juggling act trying to keep things going in proper timing and sequence as much as we possibly can. We take meds with us when the timing doesn't allow us to be at the apartment. Tomorrow will be a bit tricky because we will not only get the Vidaza infusion, but will also get the IG infusion which will take somewhere between 3 1/2 to 6 hours. We'll take everything we need and figure it out one step at a time.
Once a week (usually Mondays) we add change dressing to our schedule, which takes about 15 minutes. We usually do that after the morning shower. We'll see if that timing works for us this Monday with these infusions taking up so much of our time.
We just keep goin' ...
Friday, January 10, 2014
12 Flag
Can you believe I forgot something in the previous post? Well, I did! While at the clinic today - on the 6th floor waiting for our team appointment, we saw this out the window.
On the way to the clinic we saw the 12 flag on the corner of the Fred Hutchison building.
On the way back from the clinic we saw this one ...
And this one is also on the way back from the clinic (but I cheated and took this photo the next day and added it later).
Did you notice all the construction cranes in the air? Seattle is definitely under construction everywhere we turn.
Then, on the way to the store we saw one on the corner of the park a couple blocks up the road. (no photo of that one)
Many of the employees were wearing their Seahawks attire today. There was talk of it everywhere. It sure is a big thing. We are in Seattle!
I didn't know what that flag represented until now - (actually I hadn't even known it existed until now ..., I'm not really a sports enthusiast, and this proves it I guess). I have learned a little about it -
The 12th Man The Loud and the Proud. "At every home game just before kickoff, the flag is raised in honor of the 12th MAN."
"The Seattle fans had such an impact on the success of the team in the 1980's that Seahawks President Mike McCormack retired the number 12 jersey on December 15, 1984 forever. A tribute to the best fans in the NFL."
PS -
Coram came a little after 9:00pm, so we are just getting done with the Meropenem infusion. It's beeping! Gotta go!
Good Night!
On the way to the clinic we saw the 12 flag on the corner of the Fred Hutchison building.
On the way back from the clinic we saw this one ...
And this one is also on the way back from the clinic (but I cheated and took this photo the next day and added it later).
Then, on the way to the store we saw one on the corner of the park a couple blocks up the road. (no photo of that one)
Many of the employees were wearing their Seahawks attire today. There was talk of it everywhere. It sure is a big thing. We are in Seattle!
I didn't know what that flag represented until now - (actually I hadn't even known it existed until now ..., I'm not really a sports enthusiast, and this proves it I guess). I have learned a little about it -
The 12th Man The Loud and the Proud. "At every home game just before kickoff, the flag is raised in honor of the 12th MAN."
"The Seattle fans had such an impact on the success of the team in the 1980's that Seahawks President Mike McCormack retired the number 12 jersey on December 15, 1984 forever. A tribute to the best fans in the NFL."
PS -
Coram came a little after 9:00pm, so we are just getting done with the Meropenem infusion. It's beeping! Gotta go!
Good Night!
Chimerisms
We had a few appointments today and are eager to share the news. I don't know if I have ever been so anxious to post about our appointments.
First on our schedule was a blood draw.
Second was a visit with our nurse and provider. This is where we got the good news, and they were so anxious to share it with us. Chimerisms report was back and the results are improved. (pronounced kī-ˈmir-ˌi-zəm )
CD3+ T-cells = (these are the cells that they are really concerned with)
1/7/14 48% donor 1/Dennis, 30% donor 2, 22% host/Terry
this is improved from
12/24/13 when donor 2 was only 19%.
CD33+ myeloid cells =
1/7/14 0% donor 1/Dennis, 95% donor 2, 5% host/Terry
improved from
12/24/13 when donor 2 was 90%.
These numbers tell us that the trend is going in the right direction and that we have something to look forward to. This also suggests that a DLI will probably not be given, at least not at this point because the trend is upward.
After that good news we were told that the blood counts are all improving or holding their own.
Here are the numbers - the first numbers will be today's numbers, the second number will be from 1/7/14, the third will be the normal count.
WBC = 4.12(L) 2.87(L) normal is 4.5-11.0
RBC = 3/92(L) 3.46(L) normal is 4.50-5.90
HCT = 37(L) 33(L) normal is 150-400
PLT = 69(L) 68(L) normal is 150-400
ANC = 3.46 2.44 normal is 1.8-7.8
Creatinine = 0.98 1.02 I don't have the normal numbers but I googled it and found that it might be - 0.6 to 1.2 . We know that it seemed to be a victory when the creatinine level reached a number lower than 1.25. The lower it goes the more happy they are. They have considered taking him off hydration soon because that number is so good. However, Terry needs magnesium and potassium and he gets that in his hydration so we'll continue to get it for the next few days.
There is more news.
The testing on the bacteria growing in Terry's sinuses has been identified as pseudomonas. Augmentin will not help clear that (but then we could tell them that because it has not helped Terry for two weeks already), so we are starting another IV drug, an antibiotic called Meropenem. We are down one pill on the list and up three more IV drug administrations. It may not sound like a fair trade, but we are so happy to make that trade because we believe it will be better for his health.
Our third and final visit at the clinic was at the infusion room for the Vidaza infusion.
He also got the first dose of Meropenem at that same appointment. Now I will administer it here - three times a day.
I don't think I've ever been so involved in Terry's health care. I have been concerned and active with it all, but never have I been so involved in administering drugs to him. I sure hope we are getting it right!
And there is still more news. Terry will receive an IG infusion (immune globulin) sometime in the next few days during one of his Vidaza appointments, but this will possibly take 6 hours. This should also help his sinus issues improve. We are pleased with this decision as well.
We rode the shuttle to the grocery store this afternoon and then came home and started the IV products. First the Ganciclovir, next the hydration (which is happening as I write this). Coram will be dropping off the Meropenem this evening sometime and we will begin that at 8:00pm. This schedule today is keeping us hoping and hopping! Like all new changes, we will become more familiar with things and it will seem easier ..., not that the thing itself has changed, but because our ability to accept and understand has improved. Here, let me get that quote right ...
"That which we persist in doing becomes easier, not that the nature of the thing has changed, but our ability to do has increased." Ralph Waldo Emerson (found here)
Whew!
Did you get all that? If you didn't we assure you that it is GOOD NEWS!
First on our schedule was a blood draw.
Second was a visit with our nurse and provider. This is where we got the good news, and they were so anxious to share it with us. Chimerisms report was back and the results are improved. (pronounced kī-ˈmir-ˌi-zəm )
CD3+ T-cells = (these are the cells that they are really concerned with)
1/7/14 48% donor 1/Dennis, 30% donor 2, 22% host/Terry
this is improved from
12/24/13 when donor 2 was only 19%.
CD33+ myeloid cells =
1/7/14 0% donor 1/Dennis, 95% donor 2, 5% host/Terry
improved from
12/24/13 when donor 2 was 90%.
These numbers tell us that the trend is going in the right direction and that we have something to look forward to. This also suggests that a DLI will probably not be given, at least not at this point because the trend is upward.
After that good news we were told that the blood counts are all improving or holding their own.
Here are the numbers - the first numbers will be today's numbers, the second number will be from 1/7/14, the third will be the normal count.
WBC = 4.12(L) 2.87(L) normal is 4.5-11.0
RBC = 3/92(L) 3.46(L) normal is 4.50-5.90
HCT = 37(L) 33(L) normal is 150-400
PLT = 69(L) 68(L) normal is 150-400
ANC = 3.46 2.44 normal is 1.8-7.8
Creatinine = 0.98 1.02 I don't have the normal numbers but I googled it and found that it might be - 0.6 to 1.2 . We know that it seemed to be a victory when the creatinine level reached a number lower than 1.25. The lower it goes the more happy they are. They have considered taking him off hydration soon because that number is so good. However, Terry needs magnesium and potassium and he gets that in his hydration so we'll continue to get it for the next few days.
There is more news.
The testing on the bacteria growing in Terry's sinuses has been identified as pseudomonas. Augmentin will not help clear that (but then we could tell them that because it has not helped Terry for two weeks already), so we are starting another IV drug, an antibiotic called Meropenem. We are down one pill on the list and up three more IV drug administrations. It may not sound like a fair trade, but we are so happy to make that trade because we believe it will be better for his health.
Our third and final visit at the clinic was at the infusion room for the Vidaza infusion.
He also got the first dose of Meropenem at that same appointment. Now I will administer it here - three times a day.
I don't think I've ever been so involved in Terry's health care. I have been concerned and active with it all, but never have I been so involved in administering drugs to him. I sure hope we are getting it right!
And there is still more news. Terry will receive an IG infusion (immune globulin) sometime in the next few days during one of his Vidaza appointments, but this will possibly take 6 hours. This should also help his sinus issues improve. We are pleased with this decision as well.
We rode the shuttle to the grocery store this afternoon and then came home and started the IV products. First the Ganciclovir, next the hydration (which is happening as I write this). Coram will be dropping off the Meropenem this evening sometime and we will begin that at 8:00pm. This schedule today is keeping us hoping and hopping! Like all new changes, we will become more familiar with things and it will seem easier ..., not that the thing itself has changed, but because our ability to accept and understand has improved. Here, let me get that quote right ...
"That which we persist in doing becomes easier, not that the nature of the thing has changed, but our ability to do has increased." Ralph Waldo Emerson (found here)
Whew!
Did you get all that? If you didn't we assure you that it is GOOD NEWS!
Thursday, January 9, 2014
T47
Today was the first Azacitidine infusion. We are learning that Vidaza is the name they use here when referring to that drug. Silly how drugs have so many names. The I and the first A in Vidaza are long vowel sounds and the last A sounds like uh (it's a quick uh sound, don't drag it out like you're dumb founded.) ;)
Things went well. The infusion itself is infused in about 20 minutes, but because we check in, wait for the call to the room, meet the first nurse who then takes vital signs, wait for the drug, verify the drug and patient name and info, begin infusion ending with a couple minutes of saline, disconnecting and saying good-bye it took us from 9:00am until about 10:25am. Simple huh!
We went to the resource room to print some info we needed and came back to the apartment to continue the meds schedule and saline infusion and Ganciclovir infusion. Only half a liter of hydration over 2 hours so that's nice, and the Ganciclovir is only one hour and down to only once a day now.
It's is nice to have something to do during our days, because sometimes it is so cold and rainy outside that we just don't wanna go out. It was a very wet day yesterday and today was windy and cold so we've stayed in as much as possible and took the shuttle instead of walking when we did have to go to the clinic.
Puzzles are my go to for something different. I still do some scrapbooking, but I just can't do that all day, so puzzles are nice. Here are the last two we worked on.
We are really anxious for the good weather though. We wanna take a walk in the great outdoors.
I made cookies today - it's only the second time since we arrived here.
I had a package mix that was given to us and it felt like a good time to make them. I'm trying to use up a lot of packaged items we have so we don't have to move them. Ya, we learned that some time this month we will probably have to move to the other end of the complex. The construction will be completed on that end and will begin on this end, so they want to move everyone to the newly finished end. Oh Bother!
We don't know when this will take place, but we patiently await for an update from the office. Hopefully it's just a trip down the hall and not to a different floor.
Terry may have slept better last night due to smaller doses of steroids daily. We are tapering, with the smallest dose beginning tomorrow, so he looks forward to feeling even better after a couple more days.
Things went well. The infusion itself is infused in about 20 minutes, but because we check in, wait for the call to the room, meet the first nurse who then takes vital signs, wait for the drug, verify the drug and patient name and info, begin infusion ending with a couple minutes of saline, disconnecting and saying good-bye it took us from 9:00am until about 10:25am. Simple huh!
We went to the resource room to print some info we needed and came back to the apartment to continue the meds schedule and saline infusion and Ganciclovir infusion. Only half a liter of hydration over 2 hours so that's nice, and the Ganciclovir is only one hour and down to only once a day now.
It's is nice to have something to do during our days, because sometimes it is so cold and rainy outside that we just don't wanna go out. It was a very wet day yesterday and today was windy and cold so we've stayed in as much as possible and took the shuttle instead of walking when we did have to go to the clinic.
Puzzles are my go to for something different. I still do some scrapbooking, but I just can't do that all day, so puzzles are nice. Here are the last two we worked on.
We are really anxious for the good weather though. We wanna take a walk in the great outdoors.
I made cookies today - it's only the second time since we arrived here.
I had a package mix that was given to us and it felt like a good time to make them. I'm trying to use up a lot of packaged items we have so we don't have to move them. Ya, we learned that some time this month we will probably have to move to the other end of the complex. The construction will be completed on that end and will begin on this end, so they want to move everyone to the newly finished end. Oh Bother!
We don't know when this will take place, but we patiently await for an update from the office. Hopefully it's just a trip down the hall and not to a different floor.
Terry may have slept better last night due to smaller doses of steroids daily. We are tapering, with the smallest dose beginning tomorrow, so he looks forward to feeling even better after a couple more days.
Wednesday, January 8, 2014
T46
We got the call from the clinic today to let us know that the first Azacitidine infusion will be tomorrow at 9:00am. We hope this treatment will attack that MDS so that the donor cells can do their job like we hope. We are happy to get this thing started, so it's going to be a good day!
Tuesday, January 7, 2014
T45
We felt like we had a full day today. With the medications and hydrations schedule it actually seems like every day is a full day around here, but today we had three appointments on top of it all.
The timing of the appointments worked perfectly with the timing of infusions so there wasn't too much of a rush this morning. They took more blood today than normal because they have a lot of testing to do to try to learn everything they can to make this transplant successful.
Our team visit was informative today. They have a plan of attack right now which includes a new daily drug infusion. This one must be done in the infusion room - not at home like the Ganciclovir. Luckily the Ganciclovir is now administered just once a day instead of twice, so it's kind of a trade.
The new infusion is Azacitidine and will be given to fight the MDS a bit more because right now the MDS is too high. Once the MDS percentage is lessened the donor cells will be able to attack more effectively to make the end results better. Doctors may also choose to give a DLI (Donor Lymphocyte Infusion) in the near future.
This news may not really sound like positive information but we were pleased that they have a plan and are working the plan. When the doctor asked Terry what he thought about this news Terry responded with something like, "I'm a problems and solutions kinda guy so let's get going." It seems like sometimes we hear about the problems and they talk about what might be done, but this news seemed more productive and it left us feeling almost an excitement for the upcoming changes so that we can get this problem solved, and move on to better things ahead. We are hopeful!
We purchased some stamps at the clinic gift shop so we could mail the cards we wrote the other day, and we mailed a package from the clinic shipping department. Then we were off to the UW Medical Center to see the ENT about Terry's sinuses.
We had a little time before that appointment, and we were hungry, so we went to the cafeteria for lunch. We had some Thai Chicken and Rice and Veggies. It was yummy and it was filling.
Dr. Davis suctioned Terry's sinuses and will do some testing to make sure he is prescribing the correct medication, but he said that things are looking really good as far as the healing goes. So, we should be happy with that report too, but I wish we could clear this thing up once and for all. Maybe after his testing is done we will find a better solution that will correct this problem soon.
I think we got back to the apartment around 3:00 and we started hydration and let Terry put his feet up. Terry has been able to eat and drink a little more the last few days so he is able to cut back on the infusion, receiving half a liter now instead of a full liter. We'll do this for a few days and hope that it can be cut out completely in a week or two.
It's probably good that this was a busy day for us because if not we would really wanted to travel home to be with the kids because school was cancelled today due to freezing rain.
We heard a man and woman talking in the elevator today, sharing greetings with each other. The man said that he was good today, but at the age of 90 every new day is a good day. It was a pleasant thing to hear this morning, helping to make our day a good day too.
It has been a good day and we are pleased with things at this point even though the blood counts are not where we wish they would be at this time.
Well, I'll be scrapbooking tonight so there will be no time nor need for puzzles today, but we put these together yesterday.
This first puzzle had 500 tiny pieces and was very fun to put together. I could have an area just like this somewhere and love it. :)
Well, maybe todays post makes up for the lack of info in yesterdays post???
Have a good night!
The timing of the appointments worked perfectly with the timing of infusions so there wasn't too much of a rush this morning. They took more blood today than normal because they have a lot of testing to do to try to learn everything they can to make this transplant successful.
Our team visit was informative today. They have a plan of attack right now which includes a new daily drug infusion. This one must be done in the infusion room - not at home like the Ganciclovir. Luckily the Ganciclovir is now administered just once a day instead of twice, so it's kind of a trade.
The new infusion is Azacitidine and will be given to fight the MDS a bit more because right now the MDS is too high. Once the MDS percentage is lessened the donor cells will be able to attack more effectively to make the end results better. Doctors may also choose to give a DLI (Donor Lymphocyte Infusion) in the near future.
This news may not really sound like positive information but we were pleased that they have a plan and are working the plan. When the doctor asked Terry what he thought about this news Terry responded with something like, "I'm a problems and solutions kinda guy so let's get going." It seems like sometimes we hear about the problems and they talk about what might be done, but this news seemed more productive and it left us feeling almost an excitement for the upcoming changes so that we can get this problem solved, and move on to better things ahead. We are hopeful!
We purchased some stamps at the clinic gift shop so we could mail the cards we wrote the other day, and we mailed a package from the clinic shipping department. Then we were off to the UW Medical Center to see the ENT about Terry's sinuses.
We had a little time before that appointment, and we were hungry, so we went to the cafeteria for lunch. We had some Thai Chicken and Rice and Veggies. It was yummy and it was filling.
Dr. Davis suctioned Terry's sinuses and will do some testing to make sure he is prescribing the correct medication, but he said that things are looking really good as far as the healing goes. So, we should be happy with that report too, but I wish we could clear this thing up once and for all. Maybe after his testing is done we will find a better solution that will correct this problem soon.
I think we got back to the apartment around 3:00 and we started hydration and let Terry put his feet up. Terry has been able to eat and drink a little more the last few days so he is able to cut back on the infusion, receiving half a liter now instead of a full liter. We'll do this for a few days and hope that it can be cut out completely in a week or two.
It's probably good that this was a busy day for us because if not we would really wanted to travel home to be with the kids because school was cancelled today due to freezing rain.
We heard a man and woman talking in the elevator today, sharing greetings with each other. The man said that he was good today, but at the age of 90 every new day is a good day. It was a pleasant thing to hear this morning, helping to make our day a good day too.
It has been a good day and we are pleased with things at this point even though the blood counts are not where we wish they would be at this time.
Well, I'll be scrapbooking tonight so there will be no time nor need for puzzles today, but we put these together yesterday.
This first puzzle had 500 tiny pieces and was very fun to put together. I could have an area just like this somewhere and love it. :)
This next puzzle was also 500 pieces, but it was a trickier puzzle because the pieces could fit places they shouldn't be. I learned that on the outside pieces so we knew we had to be careful as we worked on the center pieces. It was challenging enough that we were glad that it didn't have more pieces and we were happy to get this one done. Okay, I could have an area like this somewhere and love it too, but that just isn't gonna happen!
Have a good night!
Monday, January 6, 2014
Sunday, January 5, 2014
Jan 5th 2014
Here is what kept us busy this morning:
Wrote to our missionaries.
Wrote cards and addressed them.
Wrote a couple letters to people who had sent Christmas greetings to Terry's parents this year.
Listened to a couple conference messages.
Made arrangement and received medical supplies from Coram.
Today is our last "case rate" day for this transplant and we will now get our supplies through Coram, who will deliver them to us. They called a few times to set up supplies and schedule delivery. They sent us infusion supplies for the next couple days and will keep us supplied throughout the rest of our stay. It adds a bit of change to things and my mind has to process a bit differently now, but it will be okay. At least we don't have to carry all those supplies from the clinic to our apartment like we have been. It was most tricky when we were getting five 1.5 liter hydration bags at one time. Those were kind of heavy for our walk.
We had some time in the afternoon that became kind of slow so we called the kids and had a nice phone visit with Anthony and BrittanyJo. They sounded fine ..., we hope and pray that they are. She sent us a picture of a microwave cookie they made and topped with ice cream and chocolate sauce. Too bad we weren't there to share. :) If we were home I could have made dinner for them and she could have made cookies for us. Someday!
We also decided to grab a puzzle from the lobby and put it together. They had a few new puzzles there, so it was an easy pick. We put together this 500 piece Hummingbirds puzzle.
I've started another 500 piece puzzle since we are waiting for Terry's IV medication to get done.
As for how Terry is doing ..., um ..., He's fine! But then you already knew that didn't you!
Wrote to our missionaries.
Wrote cards and addressed them.
Wrote a couple letters to people who had sent Christmas greetings to Terry's parents this year.
Listened to a couple conference messages.
Made arrangement and received medical supplies from Coram.
Today is our last "case rate" day for this transplant and we will now get our supplies through Coram, who will deliver them to us. They called a few times to set up supplies and schedule delivery. They sent us infusion supplies for the next couple days and will keep us supplied throughout the rest of our stay. It adds a bit of change to things and my mind has to process a bit differently now, but it will be okay. At least we don't have to carry all those supplies from the clinic to our apartment like we have been. It was most tricky when we were getting five 1.5 liter hydration bags at one time. Those were kind of heavy for our walk.
We had some time in the afternoon that became kind of slow so we called the kids and had a nice phone visit with Anthony and BrittanyJo. They sounded fine ..., we hope and pray that they are. She sent us a picture of a microwave cookie they made and topped with ice cream and chocolate sauce. Too bad we weren't there to share. :) If we were home I could have made dinner for them and she could have made cookies for us. Someday!
We also decided to grab a puzzle from the lobby and put it together. They had a few new puzzles there, so it was an easy pick. We put together this 500 piece Hummingbirds puzzle.
I've started another 500 piece puzzle since we are waiting for Terry's IV medication to get done.
As for how Terry is doing ..., um ..., He's fine! But then you already knew that didn't you!
Saturday, January 4, 2014
The First Saturday of 2014
Today is the first Saturday of the new year. It's not really a special day, but we did kind of have a bit of an afternoon date. We drove to the mall to make a return, purchase some cards, and eat out for lunch. Oh, we also aired up the tire on the car and picked up Terry's medicine refills from the pharmacy.
It took all of an hour and a half to accomplish all that. It's kind of funny because it takes us almost an hour and a half just to drive to a mall from our home in Royal, then that same amount of time to drive home, and we have to spend more time in town once we get there because we don't get to go very often.
Terry says I must have a fever because I didn't even have a desire to walk the mall and purchase whatever I might find and like. Where would I put it? What would I do with it right now?
It is rather interesting around here. We used to drive the three hour round trip to go see the doctor and spend about an hour and a half there at the clinic. Now we walk the round trip in about a half hour and we spend at least three hours in the clinic.
Speaking of time ..., We were talking to our shuttle driver yesterday morning and he mentioned that the company working on the building across the street from us are non union and will probably have the building done a couple months earlier than expected. We have seen and have been impressed with their work schedule and habits. As we walked home from the clinic we noticed three city trucks parked along the street and half a dozen union workers standing around visiting and watching and accomplishing very little in a large amount of time. They were back today, many still standing around talking. One man was directing traffic and some may have been in the building, but four others were just visiting. Four large trucks were parked in the area and only one of them was being used.
We've been observing the sights and sounds of Seattle since we got here and it's been interesting for sure. We are glad that it's only temporary for us and we look forward to going home to our rural hide away as soon as we can. We aren't even half way there yet, but we still look forward to it.
The doctors tell us that transplant patients stay for at least 100 days after transplant and we are day 42 today.
There is no news about Terry today. It felt good to get out and do something the last couple days, but he really doesn't have energy to do much more than that. We are sure it will improve in time, but for now we are happy to take what we can get.
One more thing ...
One of the tenants here at Pete Gross House left a gift bag filled with some soup mix and a recipe hanging on our door knob to wish us a Merry Christmas. It looked as if they hung one on every door. How kind! We had the chicken and the carrots so we decided to make this the other day. It smelled and tasted delicious and made enough to freeze for a couple more meals. What a lovely idea and kind gesture. More proof of the good people everywhere.
Well, tomorrow is the first Sunday of the year. We'll try to make it a good one. We hope you have a good one too.
It took all of an hour and a half to accomplish all that. It's kind of funny because it takes us almost an hour and a half just to drive to a mall from our home in Royal, then that same amount of time to drive home, and we have to spend more time in town once we get there because we don't get to go very often.
Terry says I must have a fever because I didn't even have a desire to walk the mall and purchase whatever I might find and like. Where would I put it? What would I do with it right now?
It is rather interesting around here. We used to drive the three hour round trip to go see the doctor and spend about an hour and a half there at the clinic. Now we walk the round trip in about a half hour and we spend at least three hours in the clinic.
Speaking of time ..., We were talking to our shuttle driver yesterday morning and he mentioned that the company working on the building across the street from us are non union and will probably have the building done a couple months earlier than expected. We have seen and have been impressed with their work schedule and habits. As we walked home from the clinic we noticed three city trucks parked along the street and half a dozen union workers standing around visiting and watching and accomplishing very little in a large amount of time. They were back today, many still standing around talking. One man was directing traffic and some may have been in the building, but four others were just visiting. Four large trucks were parked in the area and only one of them was being used.
We've been observing the sights and sounds of Seattle since we got here and it's been interesting for sure. We are glad that it's only temporary for us and we look forward to going home to our rural hide away as soon as we can. We aren't even half way there yet, but we still look forward to it.
The doctors tell us that transplant patients stay for at least 100 days after transplant and we are day 42 today.
There is no news about Terry today. It felt good to get out and do something the last couple days, but he really doesn't have energy to do much more than that. We are sure it will improve in time, but for now we are happy to take what we can get.
One more thing ...
One of the tenants here at Pete Gross House left a gift bag filled with some soup mix and a recipe hanging on our door knob to wish us a Merry Christmas. It looked as if they hung one on every door. How kind! We had the chicken and the carrots so we decided to make this the other day. It smelled and tasted delicious and made enough to freeze for a couple more meals. What a lovely idea and kind gesture. More proof of the good people everywhere.
Well, tomorrow is the first Sunday of the year. We'll try to make it a good one. We hope you have a good one too.
Friday, January 3, 2014
T41
Blood draw and clinic visit today.
We saw three new members on our team today. We always have a different nurse on Fridays because it is Pat's day off, so that is not too new. The other doctors trade off so much here that we are accustomed to new doctors often, but always excited when we get a good one. We feel like we got good ones today, but we like the last two as well (and we were happy to get them).
Our last visit we saw a "stand in" doctor, and he was one we had seen in 2010, and the doctor that we had our first consultation with back then. It was fun to see him and he said he recognized us too, but the news was very disappointing. We had a nice visit today with the new doctors and things seemed positive, giving a bit more hope to look forward too.
We were so hopeful that the numbers would have been better and we are still disappointed that they are not, but we have been given new hope.
Good news for Terry today is that we begin tapering the prednisone. I couldn't help but laugh inside as they handed me the tapering schedule and I thought "here we go again" changing the medication just as I seem to be getting familiar with what I'm doing. It's okay though, it's just kinda funny.
It rained so hard last night, but today we've seen the sun a few times in a few places. Walking back from the clinic was great as the sun was shining in our faces. It was a nice walk.
We drove to the bank and to Safeway. It was a nice little outing and it felt good to get out and do something. We waited a little while at the post office, but the line was so long and not dwindling very quickly so we decided to buy stamps another time. We also drove a few blocks looking for a place to air up one of our tires but there wasn't a place, so we just came back and will do that later. Maybe we will search online to find a place instead of driving all over.
We hope you have a good weekend. We've got a free weekend, other than going to pick up a few medication refills. I don't know how we will fill the rest of our time, it will all depend on how the weather is and how Terry is feeling. But, you know we will report on it daily (unless I am forgetful ..., again).
;)
TTFN
(I guess I'm going back to those other good ole days when we would hear and say Ta Ta For Now!)
We saw three new members on our team today. We always have a different nurse on Fridays because it is Pat's day off, so that is not too new. The other doctors trade off so much here that we are accustomed to new doctors often, but always excited when we get a good one. We feel like we got good ones today, but we like the last two as well (and we were happy to get them).
Our last visit we saw a "stand in" doctor, and he was one we had seen in 2010, and the doctor that we had our first consultation with back then. It was fun to see him and he said he recognized us too, but the news was very disappointing. We had a nice visit today with the new doctors and things seemed positive, giving a bit more hope to look forward too.
We were so hopeful that the numbers would have been better and we are still disappointed that they are not, but we have been given new hope.
Good news for Terry today is that we begin tapering the prednisone. I couldn't help but laugh inside as they handed me the tapering schedule and I thought "here we go again" changing the medication just as I seem to be getting familiar with what I'm doing. It's okay though, it's just kinda funny.
It rained so hard last night, but today we've seen the sun a few times in a few places. Walking back from the clinic was great as the sun was shining in our faces. It was a nice walk.
We drove to the bank and to Safeway. It was a nice little outing and it felt good to get out and do something. We waited a little while at the post office, but the line was so long and not dwindling very quickly so we decided to buy stamps another time. We also drove a few blocks looking for a place to air up one of our tires but there wasn't a place, so we just came back and will do that later. Maybe we will search online to find a place instead of driving all over.
We hope you have a good weekend. We've got a free weekend, other than going to pick up a few medication refills. I don't know how we will fill the rest of our time, it will all depend on how the weather is and how Terry is feeling. But, you know we will report on it daily (unless I am forgetful ..., again).
;)
TTFN
(I guess I'm going back to those other good ole days when we would hear and say Ta Ta For Now!)
Thursday, January 2, 2014
T40
Just another day filled with a few of the things we do around here when we don't have appointments -
finished a puzzle ...,
hydrated and medicated ...,
ironed shirts ...,
scrapbooked ...,
word find search ...,
watched TV ...,
used the computer ...,
cleaned and vacuumed ...,
cooked and ate ...,
took the hankies off the tree and wreath ...,
boxed up a few things we aren't using anymore ...,
took garbage and recyclables to the dumpsters ...,
nothing out of the ordinary ...,
...,
we are fine!
finished a puzzle ...,
hydrated and medicated ...,
ironed shirts ...,
scrapbooked ...,
word find search ...,
watched TV ...,
used the computer ...,
cleaned and vacuumed ...,
cooked and ate ...,
took the hankies off the tree and wreath ...,
boxed up a few things we aren't using anymore ...,
took garbage and recyclables to the dumpsters ...,
nothing out of the ordinary ...,
...,
we are fine!
Wednesday, January 1, 2014
T39
The infusion went well this morning and the walk was nice to and from the clinic today. The darkness in the air at 7:15 am was gone by 7:50am. The light was trying to shine through the thick fog enough to let us know it was daytime.
This first infusion was done in the clinic and I was taught how to infuse it and will now infuse Ganciclovir at home twice a day. Trying to keep track of all the medicine and times each is to be given is really challenging me the last few days, especially when there are appointments that interfere. There have been several medicines added, but there have been a few stopped too. And the good news is that the most terrible medicine is down to 2 instead of 6 a day (until further notice, which could be anytime really).
In addition to the 46 assorted pills scattered over about 7 different times throughout the day we add:
Two infusions of Ganciclovir (about 10 to 12 hours apart), each taking an hour to infuse.
One hydration (with magnesium) infusion a day (taking about 4 hours).
Two nasal irrigation with budesonide inhalation added to the saline.
Beclolmethasone (in corn oil) 4 times a day.
Good news today - they took Terry off isolation so he doesn't have to wear the masks anymore in the clinic. That is always nicer!
There was some excitement out our window and up the street a ways this evening. We heard sirens as usual and some went right past our apartment and stopped where we could see them. Looking out the window we saw so many emergency vehicles and people everywhere. We don't know what the problem was, but after a few minutes we smelled a little bit of smoke/fire smell and our eyes were kind of burning like when there is smoke in the air.
Maybe the news will share what happened, but I'm not gonna stay up to find out. Things are back to normal now and all must be well.
Good Night!
This first infusion was done in the clinic and I was taught how to infuse it and will now infuse Ganciclovir at home twice a day. Trying to keep track of all the medicine and times each is to be given is really challenging me the last few days, especially when there are appointments that interfere. There have been several medicines added, but there have been a few stopped too. And the good news is that the most terrible medicine is down to 2 instead of 6 a day (until further notice, which could be anytime really).
In addition to the 46 assorted pills scattered over about 7 different times throughout the day we add:
Two infusions of Ganciclovir (about 10 to 12 hours apart), each taking an hour to infuse.
One hydration (with magnesium) infusion a day (taking about 4 hours).
Two nasal irrigation with budesonide inhalation added to the saline.
Beclolmethasone (in corn oil) 4 times a day.
Good news today - they took Terry off isolation so he doesn't have to wear the masks anymore in the clinic. That is always nicer!
There was some excitement out our window and up the street a ways this evening. We heard sirens as usual and some went right past our apartment and stopped where we could see them. Looking out the window we saw so many emergency vehicles and people everywhere. We don't know what the problem was, but after a few minutes we smelled a little bit of smoke/fire smell and our eyes were kind of burning like when there is smoke in the air.
Maybe the news will share what happened, but I'm not gonna stay up to find out. Things are back to normal now and all must be well.
Good Night!
Happy New Year!
Staying up to ring in the new year was not all I expected it to be. It was too foggy to see the Space Needle from here so I missed the good stuff. We could see the lower fireworks around the Space Needle, but not the higher ones. Terry stayed to see it on the TV and got the better stuff. I had decided that I was not seeing much and turned to come back in, but by then it was already done.
We kinda got delayed on meds and Terry had to take some at midnight anyway, so it wasn't all wasted time. And Terry is having a hard time sleeping lately. He went to bed to try to sleep but it just wouldn't work well for him. He will be happy to reduce the prednisone as soon as possible.
We spent some of our awake time working on a puzzle. This one had an inch or two that wasn't on the front box picture, but that didn't matter too much, this puzzle was one of the hardest we have done in a while and it took us the longest to put it together. We had been working on it for a couple days already and at times it was a bit frustrating. If you are up for a challenge, this puzzle will give you one.
As the night went on we noticed more and more cars on the streets - it was worse than any rush hour for sure.
There were no more than a dozen people up on the roof trying to see and hear some of the sights and sounds of Seattle on this New Year's celebration and we were pretty quiet, but there was yelling and noise makers all around us. For about a half an hour there was a helicopter that seemed to want to make sure that the neighborhood was all awake for this event - it seemed to be right above our apartment.
Trying to sleep after the new year came was just as tricky because the noise just kept happening, adding several sirens to the mix. We haven't really ever been fans of staying up late, so why should that change now? Interesting though - there were lights everywhere last night and this morning the lights are all off - or maybe it's just too foggy to see them. It's pretty dark out our windows where they were once lit with Christmas lights in every direction we could see, and the workers across the street aren't coming in this morning as usual, and the roar of the vehicles on the streets is not really a roar, but just an occasional soft noise. It's really quiet and dark, even at 7:10 this morning.
We will carry on with this day and accomplish a few good things, hopefully including a nap. ;)
First though, we head to the clinic for an 8:00 medicine infusion ...
We welcome 2014 and hope to make it the best year yet! One day at a time! We hope you have a great year too.
We kinda got delayed on meds and Terry had to take some at midnight anyway, so it wasn't all wasted time. And Terry is having a hard time sleeping lately. He went to bed to try to sleep but it just wouldn't work well for him. He will be happy to reduce the prednisone as soon as possible.
We spent some of our awake time working on a puzzle. This one had an inch or two that wasn't on the front box picture, but that didn't matter too much, this puzzle was one of the hardest we have done in a while and it took us the longest to put it together. We had been working on it for a couple days already and at times it was a bit frustrating. If you are up for a challenge, this puzzle will give you one.
As the night went on we noticed more and more cars on the streets - it was worse than any rush hour for sure.
There were no more than a dozen people up on the roof trying to see and hear some of the sights and sounds of Seattle on this New Year's celebration and we were pretty quiet, but there was yelling and noise makers all around us. For about a half an hour there was a helicopter that seemed to want to make sure that the neighborhood was all awake for this event - it seemed to be right above our apartment.
Trying to sleep after the new year came was just as tricky because the noise just kept happening, adding several sirens to the mix. We haven't really ever been fans of staying up late, so why should that change now? Interesting though - there were lights everywhere last night and this morning the lights are all off - or maybe it's just too foggy to see them. It's pretty dark out our windows where they were once lit with Christmas lights in every direction we could see, and the workers across the street aren't coming in this morning as usual, and the roar of the vehicles on the streets is not really a roar, but just an occasional soft noise. It's really quiet and dark, even at 7:10 this morning.
We will carry on with this day and accomplish a few good things, hopefully including a nap. ;)
First though, we head to the clinic for an 8:00 medicine infusion ...
We welcome 2014 and hope to make it the best year yet! One day at a time! We hope you have a great year too.
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