A Bright Sunshiny Day!

It was a beautiful sunny day today, with no rain!

We went to the clinic today and learned that we still have more to learn. That's often the way it is around here, so we shouldn't be too surprised. 

The bone marrow results are back and tell us a bit of a story ...,  Here is what we learned.  I know it is confusing and I apologize, but I do want to record it.

Chimersism Whole Bone Marrow (Whole means they did not separate the CD3, CD33,and CD56 cells) on 2/20/14 =
42% donor 2 (12/24/2013 was 60%)
5% donor 1  (12/24/2013 was 4%)
53% host   (12/24/2013 was 36%)

Chimerisms CD3+  T cells / lymphocytes on 2/20/14 = 26%  donor 2  
(1/7/14 was 30%, 12/24/13 was 19%)

Chimerism CD33+  myeloid cells / neutrophils  on 2/20/13 = 84% donor 2 
(1/7/14 was 95%, 12/24/13 was 90%)


Flow cytometry on 2/20/14 tell us that the myleloid cells increased from 8% to 9.8% since 1/28/14. 

Oh Bother!   It's obvious that the trend is the wrong direction in every cell count.

So what does all this mean?  That was our question.  What next?

They suggest Terry continue with the Vidaza.  A total of 6 are suggested and he has had 2 already.  The next one is due to begin next week.  However, this could be done in Wenatchee, so it's possible we could be going home as early as next week. 
BUT,
They are still discussing the option of a DLI (donor lymphocyte infusion), which would mean we need to stay here for that.  If they do a DLI it could possibly be done next week and we will have to stay another couple weeks after that to watch for GVHD. 

They will contact us when a decision is made.

We'll let you know ...

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!

Doctor Visit / Chemo ...

Yesterday was Terry's doctor visit, so we learned the results of the bone marrow biopsy ... finally.  It was one of those times when the doctors had to meet and meet and meet to make decisions on what to do.   No decision was really made though....    okay, I shouldn't say that ... the decision was made to continue as we are, and then make a new decision whenever the need arises.  Like we weren't already going to do that!  Can you tell I'm kinda frustrated or disappointed or ??? ...  whatever this feeling is ... my bad!  I just keep hoping for some concrete answers....  You'd think I'd know by know that it's not gonna happen!

The Flow Cytometry (marrow) test did show good news -  It is down from 50% last February - to 5.5% now - that is better!  That was good news, but I guess there was enough other news that I'm not focusing too well on that.  I gotta get feeling more positive around here!

At the departure clinic after the one year check last year, we were told that Terry could have another type of cancer (a myeloid cancer), but it wasn't enough to really count or read to prove that it was there.  Now it is enough to count or positively detect it.  He does have Myelodysplastic Syndrome (MDS).  Oh Great! Well ..., it is treatable!  I wonder - could it be a reason for the blood counts to be so off? (who really knows?)  I don't recall a number or percentage for that, but I do know that it isn't a large percentage.  And we don't know how fast it grows.   It took a year for it to be positively detected.

At this point we continue what we are doing and life goes on ....
I want to say "Sorry, but that is just the way it is!"  Actually, I want to say DUH!  I mean really, isn't that exactly what we are doing?!?!?!    (not so positive huh!?!?!?)
I think one of the hardest things is not being able to understand all things.  I wish I was intelligent and wise.  Wisdom has got to be one of the greatest gifts from God - of course I don't know that from experience, just desire.

Chimerisms report -
CD3 cells = 83% donor (these are the T helper lymphocytes)
CD33 cells = 0% donor (these are the myeloid or neutrophils)

Oh, this reminds me that they are sure that the MDS is not because of the stem cell transplant or from donor blood, because it is in Terry's cells - the 0% donor cells.  I guess Terry was blessed with bad blood for his time on earth.  Bummer!  However, we are pleased and do feel blessed that he still has time on earth, so we'll take what we can get!!!!  And, we are happy to have it!  See, I can be positive!

Okay, now the blood counts:
WBC = 2.9(L) normal is 4.5-11.0
RBC = 3.78(L) normal is 4.50-5.90
Platelet Count = 59(L) normal is 150-400
Abs Neutrophils = .8(L) normal is 1.8-7.8
ALT = 64(H) high, but only by one - normal is 17-63  :) I love that number!
AST = 60(H) normal is 15-41

Well - I think that's it!

There has been so much happen since that appointment yesterday that I'm forgetting already.  I have finally completed this task ... along with several other tasks.

After chemo yesterday we went to my sisters to see her family and my parents, went to Costco to pick up some things, drove to ML for a meeting (a very good one at that) and then to Walmart for a few more items.  We got home late and up early.
I started writing this post this morning before the kids got up. Got the kids up, got everyone off to school, made Paella and took it into BJo's class, helped the guys pull weeds in our yard, cleaned the kitchen, took some photos of equipment for Terry, and finally I'm getting this post completed.  TaDa!

So we see, life does go on and Life is Good!


Sometimes just writing a post can help me vent a bit and feel better.  Thanks for putting up with my rambling!  Have a great day!

Dr. Smith Called!

We have learned something today, but are still playing the waiting game. But this news was a step forward. Yay!

SCCA reports that the Flow Cytometry (CLL measurement in the marrow) is 0.6%. This is good - they are happy for this, but...

Chimerisms (donor vs host cells) have dropped to 47%. This is not good - not so happy. She said that they were around 70/73 in the spring.

A decision has been made. They do recommend DLI because of the chimerism change and since there is no active GVHD that we know of/see.

SCCA will call us in a few days to set up an appointment. We were told that their first opening wasn't until October 20th, so we are sure we won't go any earlier than that. They take DLI patients in on Thursdays and keep them for a week, so we should plan on being there until the following Friday if everything goes well. We are unfamiliar with everything going well. :) Okay, it's not that bad, but we are not counting on getting out of there anytime close to on time. Maybe we'll have a first. :) We like pleasant surprises.

That is today's info, we'll let you know when we hear something for sure.

Medical Report

This was a different sort of visit for us because we had Auger with us; since Dana was at basketball camp (BJo too) and Thomas was working (and all of the other boys). It was the highlight of the day for those nurses. It's surely not a common sight to have children in the oncology area. They showed him all sorts of attention and gave him Oreos, Fig Newtons, and Ritz crackers with cheese. He was well cared for, and he was really very good for us. As we left he was told to "come again"!

As for the blood report - we didn't get a copy and don't remember the numbers.
However, we do know that the white blood and neutrophils were quite low and they gave him a neupogin shot to get them up. That should or could help his low energy issue.
Platelets weren't normal, but had gone up some. Up is good, even if it's not as high as we'd like it.

SCCA called and wanted another chimerism test. The last one showed that a couple of the tests were low. They sent blood over to them again yesterday and we'll get the report by Wednesday or Thursday (hopefully). If they remain low we may be looking at a "boost". Since we don't know enough about that I'll not explain it now. We will post more about it when we learn more and know for sure if it will happen.

For now, Terry continues to work on the farm, even with the low energy. I'm so sorry for him and wish he could just come in and rest whenever he needed, but he does keep pushing himself. I suppose we all have experienced that need for rest but the greater need to keep pushing oneself to accomplish the necessary tasks at hand, but his seems to be more constant. One thing I know for sure is that the Lord is his strength!

As for his cough - it is better, but we wish we could tell it was gone for good. He still has a couple more days of those meds. Hopefully that will be long enough to cure him of this bronchitis.

Doctor Visit

Today's visit with the oncologist was like most all of the others, but he did get more blood drawn to send to SCCA for a chimerisms test. We are anxious for the results, but won't know for several days.
Lab Results:
WBC = 2.0(L)
RBC = 3.49(L)
Platelet = 58(L)
No medicine changes or shots due to the blood counts, but Terry has had a cough for several weeks now, and 2 different sets of meds to help cure it, but neither doing the job. Therefore, today he got a 3rd prescription. He's feeling a bit run down, so hopefully this medicine can do the trick and get rid of this illness so that he can feel better.

A Long Thursday

We packed and cleaned and went to our LTFU Conference with Dr. Kiem this morning where we listened and learned.

Bone Marrow test tells us that the trend is good, going in the right direction at 3.3% abnormal cells in the marrow and .23% in the blood. The best news is that in the future we can track this through the blood instead of doing another biopsy.

Chimerism study tells us that things are stable, but it is not 100% which we would really like to see. Donor lymphocytes is 63% and granulocytes is 66%. They think that the graft has not yet fully set in and we need more time. However, there is one more test that they are doing, which meant we added another chimerisms blood draw to our day, but we don't know results yet. They want to look at the CD56 cells to help them understand things a bit better.
We will repeat the chimerism studies in one month. They may recommend a donor lymphocyte infusion in the future, but for now we just keep on keepin' on.
We will talk with SCCA in one month to determine a plan and when we should be seen again.

Blood tests will continue weekly (or more if needed) since the neutrophils were so low. We asked if we were doing something that was causing the crazy blood counts and they said no...nothing we do can change that...we just keep watching them...it is not uncommon for transplant patients.

No vaccines yet - the B cells are not good enough for that, and we are to continue to watch for GVHD sypmtoms. He keeps the Hickman line in and there should be no problem to the length of time it remains unless it becomes infected, but lucky for us he hasn't had any problem with it. Still no swimming, no house pets or caring for animals, no shooting rifles, and remain cautious in public places, etc.

Here's the big surprising news of the day. The Dexa test tells us that Terry has osteoporosis. This is concerning and probably due to the prednisone he has had several times in the past. So this news led to another appointment today - an infusion of Zometa to help strengthen his bones. We will retest in 6 months.

We had some time between our blood draw and infusion, but we had turned in our room keys and had nowhere to go. We did however leave our car in the House garage to pick up after lunch, but since we weren't going home when we thought we were, we decided to just hang around in the SCCA House lobby and put together a puzzle.

We got home about 9:20 pm. It really is nice to be home again!

Day 125

We got a bit of a hint that what we would hear at our appointment this afternoon was going to be hard to hear. When we checked in for the visit with the GI doctor today we saw Eileen, our RN. She mentioned that they have been talking about us and when we asked if it was good or bad she sighed a bit and said; "I'll just leave it at that!"

The GI doctor set up an appointment for a scope tomorrow. The liver function is above normal and has been on a steady incline. They wonder if it is due to GVHD, but need to know more.

Our summary conference with the doctor and RN later told us what was behind the sigh we heard when we saw Eileen earlier today. They really hoped to be sending us home, but want to keep us here for a few more weeks. WHAT? WHY? We didn't say that, but we were sure thinking that. Here is the answer:

They are watching the chimerisms, which tell how much is Dennis and how much is Terry. They are concerned with the results of the tests they watch most on that. I will refer to those two tests as M cells and T cells. The M cells are 95% donor, and that's good. The T cells, which are the most important in this protocol, are at 67% donor and trending downward. This is not good. They need to watch that and learn if it will continue to trend down or take a turn upward, or even just plateau. The downward trend is the concern. They will need to act on that at some point if it continues to decline.

I already mentioned the liver function problem. They are increasing the dose of his cyclosporine and hoping that will help.

The PTLD is gone, but at risk of coming back with the changes in the cyclosporine.

So all this means that things are unstable right now and it would be safer for Terry to stay here than to return to his oncologist at home. It is also better for the physicians in charge here to have him here instead of taking the word of another doctor and trying to work with Terry from a distance. We understand completely and we want to do what is best for Terry. That is why we came here in the first place.

They were going to pull the Hickman Line tomorrow, but that will not happen now. Our schedule has been revised again. He will have an endoscopy and Flex Signoidoscopy tomorrow and hope to have the results in time for our clinic visit Thursday.

Now for some good news ... by the end of our visit today the doctor had decided that since our hometown is as close as it is, they could let us go home for several days between visits. We aren't sure yet, but they (and we) are hopeful that we can come home this weekend and return for Tuesday blood draw and clinic visits. After finding out if things are okay we can then return home again and keep this type of routine going for as long as needed. We are crossing our fingers and saying our prayers and hoping we won't have to disregard everything I just wrote and give other disappointing news after our appointment Thursday.

Clinic report:

The good news is that the WBC has gotten better - 3.66 and Neutrophils are 1.93.
There are no outward GVHD symptoms and the PTLD is gone, but the bad news is that the chimerisms are trending down, and the bone marrow biopsy supports the downward trend. It is slight, but it is still the wrong direction.
Chimerisms tell us how much is Dennis and how much is Terry. T-cells at day 56 were 82%, day 84 were 78%, and day 117 were 67%.
Bone marrow tells how much CLL remains. Day 56 was 2.5% and day 117 was 4.1%.
The doctors remind us that the change is minimal, but this is when we want to catch it and change it.
The doctors are talking about Terry again and trying to come up with a plan.
They have some contradicting factors and some unknowns. They are trying to come up with a good, even the best plan for Terry.
Terry's oxygenation is low and they are checking things there. He had a CT scan today after the doctor visit, so hopefully they will learn something from that.

Today is day 119 and we still have no idea when we will be able to go home. These little disturbances are keeping us here and we are feeling a bit restless, but we are worried mostly for those at home. We hoped to help with school shopping this week but the kids have been sick so we must remain distant. And, school shopping is minimal compared to the farming needs. It seems that we keep leaving our responsibilities up to others and we apologize.

I was just reading thru some conference talks again and was reminded of this: "Two men can do anything as long as one of them is the Lord' and 'The Savior must be our foundation. Without that we flounder." Elder Andersen reminded us that our faith in Jesus Christ prepares us for the challenges we will face. We, refering to all members of our family, are certainly facing many different challenges.

The conference messages combine in one great message that remind us to turn to and follow the Lord, Jesus Christ. "Come unto me, all ye that labour and are heavy laden, and I will give you rest". Matthew 11:28 He will send us peace, no matter what our trials might be. We were encouraged to watch with all perseverance,to be of good courage, to act in all diligence, and to continue in patience and never, never, never give up, as we turn to the Lord and follow Him.

So, with our love of God and our faith in Jesus Christ we promise to keep an eternal perspective and pray that "all things will work together for good". We will continue to pray for those in charge, both here in the medical field and there on the home front, knowing that with God, all things are possible.

(I hope this has made some sense. There were so many thoughts going thru my mind, and when that happens it's even harder than usual to get it out on paper in a pleasing and understandable manner.)

Clinic Visit Report

Results of the blood draw:
Reds remain at 30%
Neutrophils continue to rise - 2.27 today.
Whites continue to rise - 4.72 today.
Platelets are 117,000.

The results of last week's bone marrow aspiration:
The amount of cancer still in the blood/bone marrow is 2.5%, down from 2.7% on day 28.
Chimerisms tell us that - well, they do different markers with this testing, and one marker shows that Terry has 82% Dennis, up from 72% last time, and the second marker they tested this time was 100%, and they did not test that marker last time to compare it to. Anything over 50% is what they hope for, so it's looking really good.

The results of last week's scan show that Terry's lymph nodes have shrunk by 1/2. We can tell that they have shrunk and we are amazed. Things do look good, but we are still in a time when things can change so we continue to hope and pray for the good to continue.

Here's what we learned at todays clinic visit:

- "Things are going well."
- Kidney function is better, almost normal.

- Some concern still with the liver and spleen.

- Remain at 1 liter daily hydration. (This is the IV fluid, which is in addition to his drinking and eating amounts.)
- White blood improving, is at 2.4
- Neutrophil improving, is at 1.64
- Platelets are good.
- CLL improved from about 5% when we started to about 2.7%. "But it's still early!"
- Chimerisms - "Well engrafted at this point." (this is where it tells us how much is Dennis' vs Terry's blood) 70% Dennis and 30% Terry. "It was a slow start, but this is a good number. We usually like to see it at 50% or better at this point, so we like these numbers."
- Red cells are "being chewed up faster than normal" and cause some concern. They are looking into this and trying to figure out why this is happening. This is usually a concern for patients who have a donor that was not a perfect match, but we had a perfect match, so they are wondering about this a bit. This necessitates more blood draws - which meant we went back to blood draw today, for a second draw, and will have daily draws until it is no longer necessary. Blood transfusion could be in his future if it does not improve itself. This count actually explains his lack of energy. His get up and go, kinda got up and went ... without him.
- One more medicine is added to the mix. But only two days a week. That is only four pills a week more than now, so that is good for Terry, but it makes things a bit more hectic to schedule and remember.
- Next bone marrow aspiration at day 56.
- More walking! "Get out more!" Just like they told Fival - "Keep walking!" They want Terry to spend some of the energy he doesn't have! That's harder than spending money you don't have. But, we can do hard things!