Friday, July 30, 2010

Welcome to day 100

Terry was able to have a light breakfast, and then had to fast the rest of the day. He had a blood draw at 3:00 and an ultra sound to check his liver at 3:30.
We picked up our schedule and found that next week is a regular week at this point. Normal blood draws and visits, with nothing to give us a hint as to what happens next. So we continue... Hard as it might be for all involved, we know we must continue on and get this thing taken care of. That is why we are here.
However normal our schedule is at this point, we do know that things could change quite quickly, so we'll continue to keep you informed as we learn things.

We never wrote day 101 on our calendar, but here it comes anyway. We think it'll be a free day for us, maybe we'll do some more shopping :).

Hope your day is a good one!

Thursday, July 29, 2010

Just a note!

Dennis did get a call yesterday morning and that afternoon he headed to the doctor and got the testing done that they requested. We couldn't have asked for better than that!!! He's good!!!
Thanks Dennis! Again!
Thanks to all of you that are so kindly and willingly helping us out.

We have spent parts of many days this week shopping and creating the centerpieces for the wedding luncheon. When I asked Terry if he had any plans for the day he responded by saying something like this: "I suppose you are going to drag me around town again today!" He did say it with a smile, and mentioned that he is happy to do it because it makes me happy. Don't you just love him! I do!


Happy Birthday Brian! (R)
We love you!

Wednesday, July 28, 2010

I said I'd post what we learned, but it's not very informative!

The doctors met and they are still working trying to figure out the best way to handle this. A few questions still need answered before they decide, and they are working towards getting those answers. They are going to give Dennis a call and probably test him to see if they can determine where this came from.
They are concerned a bit about Terry's liver and will do an ultra sound Friday afternoon.

We wish we had more to tell you, but this is it! Sorry!

Tuesday, July 27, 2010

Day 97 Clinic Visit

Our visit today was somewhat informative, even though they don't have the final word.
Sunday's labs showed:
Hematocrit = 34% YEAH!
WBC = 4.7

Tomorrow's meeting is still on. The doctors have each been researching and studying up on the problem at hand, and will gather tomorrow to share their finds and discuss the best approach to fixing the problem.
I was curious to learn how many doctors might be meeting. Would it be a dozen? We knew of several that might be involved. Well, we learned that it could be over 100 doctors on this panel. Their are many people involved in this including pathologists, pharmacists, all the lymphoma and luekemia doctors ("all of the 4th floor doctors" and we don't ever go to the 4th floor, but they do come to us as needed). This will be broadcast through the SCCA, Fred Hutch, and U of Wa. We've certainly stirred something up here.
Does this not let you know that we are in good hands!!!!!

With a few more lab reports back from the biopsy they are finding that it is more likely to be the EBV. This would not be something he contracted at present, but it would be something that either Terry or Dennis would have had in their blood previously, and it has flared up. This virus does not show up in his blood, so it is local. There are still some pathology reports not yet in, so they are awaiting those results. They will call us after their meeting and their decision as to what their plan of attack is. They sound positive about things at this point.

Saturday, July 24, 2010

We picked blackberries and visited for the morning, and after lunch Thomas and Dana went to Pike Market and we watched Auger. Our pleasure! :) Oh! We got over a gallon of berries.

We sent a few things home, but not as much as we had originally thought. We'll need some of it still. After Thomas and Dana left I started rearranging some of the boxes I have packed, still not sure what to do, I'll remain boxed until I need what is in the box.
I think we've kept so busy this week getting prepared for our release, that we welcome the rest we'll have between appointments next week. They start tomorrow with a trip to U of Wa Medical Center for x-rays and back to the clinic for blood draw.

Friday, July 23, 2010

We met with a couple doctors today and learned about the mass Terry has on his adrenal gland. We picked up our schedule when we checked in and found that we have appointments thru the week as normal, so that was our first clue that we were not going home next week.

The biopsy reports are not complete, but it is looking like they have enough info to know that this mass is something caused by the transplant. It is common for patients who have had other types of transplants, but it is the only case they have had with patients with this type of transplant. They know how to treat it for those other cases, but we are throwing them a curve. The first thing to do is to change the dose of the Cyclosporine meds so that his body can help itself fight this thing. The Cyclosporine helps keep the GVHD away, so we are to be on the look out for any of those symptoms.

The term for this mass is Post-Transplant Lymphoproliferative Disorder (PTLD). It is a form of or related to Epstein Barr Virus (EBV). It is treatable, but has been treated with Rituxan, which Terry is allergic to. They want to wait to get all of the lab results of the biopsy and meet together to make sure they have the right plan of attack. The many doctors involved will meet Wednesday and then let us know what they come up with.

There are a lot of if's given us right now, and we could go on with what might happen, but what we do know is that we will be here thru next week and probably 2 to 3 weeks longer. But even that is ify and we'll just take it as it comes. My biggest concern was to be able to attend the wedding. We told them that we really wanted August 10th free, but would be here before and after as needed. They've got it on their calendar and we feel comfortable with that.

So, for now, we are playing more of the waiting game.

We are keeping ourselves busy though...
Chase, Connor, Marco and the Bishop came to visit us today on their way home from the Priest Quorum Super Activity, which was crabbing on Camano Island. We are so glad they stopped by - it was good to see them.
Thomas, Dana, Auger, Ariel, and Drew came to visit. They ate and let us watch Auger while they went to the game. Our treat! What a joyful time. Auger was great, we enjoyed the evening and he went down to sleep without any problems. We'll continue the good times tomorrow.
We've visited with several of the kids on the phone or by email and it's been a busy day.
It's not yet over - dishes to do :)
Have a great night!

Oh! PS, I guess! We visited briefly with some other transplant patients here at Pete Gross, who had the same transplant as Terry (or similar enough) and they were going home Monday, until he got a bacterial infection. That was disappointing to them, but we agree that we are in the best place for these types of things. Funny though - she mentioned that "it's just like Hotel California; you can check out, but you can never leave!" AHHHH! Funny huh!

Thursday, July 22, 2010

Today's walk was to Pike Place Market. It was one of the places we wanted to go before heading back home. It was surprising to find that it was only 1.1 walking miles distance from us. So we hiked our way there and back. It was fun to see the pig, the fish throwers, the flowers, the gum wall, the fresh fruits and veggies, etc. There really was just too many people - we don't do crowds like that very well. We really like the wide open spaces, maybe because we can control the touch, the sound, and the smell a little more than in these congested places. It was fun to see and we'd probably go again someday.
The only word we have about the mass on Terry's adrenal gland is that we will meet with the team tomorrow afternoon for the report. We'll let you know!

Wednesday, July 21, 2010

DAY 91

Today we walked to the clinic ... again ... then we met with the Long Term Follow Up PA, which was a consult for departure. This doctor is looking primarily for GVHD and getting a look at Terry before he leaves. She says everything looks really good -she has no concerns.

The usual blood draw came next.
WBC = 4.16
Neutrophils = 3.13
Hematocrit = 32 %
Platelets = 107 thou

We had a Nutrition Clinic to get discharge information. No concerns there.

Chest x-ray came next - all looks well. No problems stemming from yesterday's biopsy. They disturbed the lungs a bit and needed to make sure it's okay - and it is.

We had a Clinic Visit with our Team and learned that the kidneys are normal and the liver is looking better. That's improvement - YEAH! We learned that the bone marrow biopsy done on day 84 showed that the amount of cancer in the bone marrow was 3.5%. They said to not let this alarm us, "it was just where they stuck the needle this time". It's all still good. This disease kinda lives in little pockets and they found one this time. Overall, they consider things pertaining to the transplant to be "fabulous".

Now, we still have no report about the mass on his adrenal gland. With no results on that, they could not talk about going home. So, we are on hold. We hope that when they get word we can be put on fast forward and wind things up in a speedy manner.

We came home and rested, then went to dinner. Brandon and Megan gave us a gift card to Buca di Beppo, a fun little Italian restaurant just 5 blocks down and 1 block over. It was a nice walk and a good meal, and a pleasant place to eat. (They have a great Pear Lemonade.) A great way to end our day. A nice way to relax after 3 very busy days.

We're hoping for news tomorrow about the mass. We'll keep you posted. Until then - have a great evening!

Tuesday, July 20, 2010

DAY 90

We started the day with a quick trip to the bank and post office, then we walked to SCCA, got our revised schedule and took the shuttle to U of Wa Medical Center for Terry's CT guided biopsy. They are checking to see what the mass on his adrenal gland is. It wasn't there a month ago and, of course, they are very interested in it.
The procedure took about 2 1/4 hours. I heard reports that it was a bit difficult, but they did get what they needed. Terry remained for observation until maybe a quarter to 7:00, with a couple lung x-rays in between that time. It's such a tricky place that they need to make sure that they don't send him home with any other problems.
We took the 7:25 shuttle back to SCCA and the driver told us he would take us on to the Pete Gross house after he checked to see if there were any others in need of a ride. The regular shuttles that go to the Pete Gross House takes the last run at 4:50, so we were going to have to walk. This driver just does this out of the goodness of his heart and we appreciate it, as did another fellow that needed a ride. We have run across many good people in our lives and hope to follow their lead.
We were back to the apartment a few minutes before 8:00 and felt the need to rest. It's already been a long week and it's only just begun. Another full day ahead!

FYI - This driver was born and raised in Wenatchee. :)

Monday, July 19, 2010

Today's Walk

We walked to the clinic this morning to pick up our pass and check our schedule. We walked back to the apartment, got our camera and continued our walk to the Space Needle.
We had a great view from the Space Needle.

We saw our building and the SCCA building.
SCCA is the tallest brown building on the left, just this side of the freeway and to the left of the entrance/exits. The Pete Gross House is a bit harder to find if you don't know where it is, but it is a smaller white building with a small red stairwell on top of it. It is found in front of a grey/blue building to the right of SCCA. Our exact room is hidden behind another building, but is to the left of that part of the building you can see. The red stairwell wall is up at the terrace. Remember - if you click on the photo it should enlarge it.

Just out of the Space Needle we found a band playing some fun music. We listened to them for awhile before heading over to the Science Center and the Seattle Center.
We are back at the apartment again and resting from our hike - probably about 4 miles of walking today. The next couple days are pretty busy. We'll try to keep you posted.


Happy Birthday to mom / Gelene!
We love you!

Happy Birthday to Troy!
We love you!

Sunday, July 18, 2010


The first photo doesn't show them very well, but the berry plants we picked from are all the way down this road. The second photo is a close up at the bottom of the hill. The third photo is of another side road we walk back into to pick from the plants back there.
We enjoyed some of the sights and sounds of Seattle today as we came back from the clinic. God's creations are found everywhere. We took some time to enjoy them today.
This next photo is the entrance to an REI store a few blocks North/East of us. We'll go in the store another day, but we sure enjoyed the entrance today. Nature meets cement quite well in this area. It was great! Several of the earlier "posts" today were taken in this area.
There is a community garden, called the P-Patch, a few blocks East of us that we like to stroll through on occasion. This is the entrance from the North side of it.
These next two photos help set the tone for this, the day of rest!
We have seen horses here several times, but today we saw them "in style". They are up on the other end of the block just East of us. We need to bring them some good food!

Posts for Day 88

We have several POSTS for today!








Friday, July 16, 2010

We didn't have the traditional cake and icecream for breakfast, because Terry had to fast for his appointments. :(
We went to the clinic and returned in time for lunch, and had BLT's. We got a call telling us that the MRI did not give them the info they were hoping for, so Terry has to go in for a "simple" biopsy to help clarify the mass on his adrenal gland. We have been waiting for a call to inform us of when that appointment is, but have not yet received it.
We worked on the announcements and took a trip to the post office to mail them and get more stamps.
Terry didn't want to go out for dinner, so we stayed in the apartment the rest of the evening, had meatloaf, mashed potatoes, cooked carrots and jello for dinner, and watched a movie.

Thanks for checking in on us. Sorry it's not too informative.
We continue to hope and pray for the best, and await the next bit of news.
Have a good day!


Happy Birthday to Terry!
We love you!

Did you know?
At age 53, he will probably have to get all his childhood immunizations again because this transplant takes him back to the immune system of an infant, even though Dennis had all of his immunizations.

Thursday, July 15, 2010

Day 85

The Pulmonary Function Test went well. These are breathing tests to check the health of the lungs. They compare these to those he had when we arrived and it sounds like he may do it again sometime (maybe the year check up) to make sure things are going well.

The dental exam also went well. We learned or re-learned the importance of keeping a lookout for changes in the mouth. The mouth is the most common place for GVHD and we need to be aware of the changes and alert the doctors about those changes.

We are constantly hearing about GVHD, and recognizing that it is their number one concern for patients as they send them home. We will no longer be under their constant care and almost instantly available for us if we have a need, and they want us to be able to recognize, on our own, the different symptoms of GVHD and things that can cause it. (Like - wear sunscreen, no dirt, wash hands, avoid crowds and "symptomatic people" , etc., etc., etc.)

We headed to town to get ink for the printer so we could finish the announcements. Skyler is helping me get my list put into a program so I don't have to do each one - one at a time. WOW! It is so much faster. Now I can get them out for sure this week - right! Hope so! If you have a new address in the last year or two please send me your new one! Thanks!

Have a great day!

Wednesday, July 14, 2010

Day 84

Blood draw at 7:30 this morning went well.
We then went to the bone marrow biopsy and that went well too. Terry has had the right side poked so much that it was pretty painful this time. The nurse said it gets harder each time. The left side was not as painful, but they did have to go in twice for the bone biopsy to be large enough. Happy to be done with that for a year. As the day has gone on, Terry has felt more discomfort on the left side - strange huh!

We got a call from Rachel (our primary provider) informing us of the results of yesterday's scan. The lymph nodes look great - borderline normal. We are happy for that.

But, there is a catch - they found a mass on the adrenal glands and need to know for sure what it is, so we have added an MRI to our Friday schedule.

The liver is acting up some, and they are going to blame it on the Bactrim he has to take. He will stop taking Bactrim and start on Dapsone in it's place to see if that helps.

We also had to add a class to our schedule today, so we got our Long Term Follow Up class today at 1:30, after coming home for lunch and a rest. It was a bit tricky for Terry to sit in those chairs just after having the bone marrow procedure, but he managed well and we learned good things.

We were also rewarded on our way home. We saw some blackberries that we pass by everyday, decided to take a detour and picked a few. We needed to put the berries in something, so we dumped out our medicines (into my shoulder bag) and used that small paper bag to hold the berries. We picked enough to make a pie. It was fun, but we think we just disregarded one rule we just heard for the umpteenth time - stay away from plants and dirt. :) Terry tried to keep a good distance, but he did help pick them.
We will let him rest now, until appointments start again tomorrow at 9:00. Maybe he can enjoy some yummy pie tonight, but I'll have to stop here and hurry to get that done.

Tuesday, July 13, 2010

Day 83

We heard encouraging words again during our clinic visit today - words like "fantastic" and "couldn't be happier". Blood draw was after our clinic visit so todays labs were results from Friday, not today, but we will post them, because they are the most recent we have:
WBC = 4.80
Hematocrit = 31 %
Platelets = 108 thou
Neutrophils = 2.36

Terry had a CT scan today. We were at the clinic all day, having no lunch until 4:30 this evening because of the fasting for the scan. Luckily our day ended earlier than was planned because there was a patient "no show" before us and they took us in early. Lucky for us!

Tomorrow is a big day with an early (and fasting) blood draw and then a bone marrow aspiration and biopsy.

We'll be back to the clinic Thursday and Friday, but have no results until next week. They gave us a heads up on upcoming events, so we know that we have things scheduled for the 21st, 26th, and 28th. We think the 28th is the day they will remove the Hickman line and give us our "walking papers" if all goes well. We'll see! We might be getting a bit anxious :).

We are letting Terry rest this evening and I am folding and stuffing wedding announcements. You should be getting yours soon. I'm trying to hurry! If you don't get one in a week or so, let me know and I'll make sure I get one to you, and I apologize in advance if that is the case. We look forward to sharing this special occasion with you.

Keep August 10th on your calendar - that's the big wedding and reception day! We are so excited for Skyler and Lisa. If they had known each other forever we'd say that they were childhood sweethearts. What I will claim is that Lisa is exactly what Skyler was looking and waiting for all his years. That's pretty close to being his childhood sweetheart isn't it!?!?!?

Sunday, July 11, 2010

Advance Notice:

Day 81 today! About 3 weeks left if all goes well, and we do expect it to go well.
We picked up our itinerary Friday afternoon and learned our schedule for the next week.
There will be blood draws (one even fasting), a visit with the doctors (we get to see the very first doctor that we saw for our consultation earlier this year), CT scan, bone marrow aspirations (both hips and with biopsy), pulmonary function test, and a dental exam. These are all familiar, since he's had each before at least once since we have been here.
We expect some medicine changes, and have already had some. Terry no longer gets IV hydration daily, but does still have the Hickman line (which still gets flushed daily), but it should be removed before we leave if all goes well without the hydration.

Tuesday, July 6, 2010

Today's clinic visit:

White blood = 3.46
Neutrophils = 1.9
Hematocrit = 31 %
Platelets = 112 thousand

Many numbers are down from last week, but they don't seem to be too concerned. In fact, today they volunteered that we are at the end of our stay and will be getting our work up and visits in preparation to leave. This will start with the bone marrow aspiration next week and continue with a busy schedule full of visits and testing for the next two weeks to help them learn what they need to know and help them decide when we can leave.
We do know that he will have lab work and meet with the oncologist/Dr. Smith weekly for the first month and it will be up to her to decide how often she meets with him after that. We've been told to make our appointment with her for the first week of August.


Monday, July 5, 2010

Weekend Report

We enjoyed having BJo and Anthony with us for the week. It seemed to go by fast.
We picked up Gregory from the airport Saturday and Adena came later that night after Connor got home from basketball camp. We had a nice visit for the weekend, the last one before Gregory and Adena leave for home/California (on the 15th). They have done so much for us and we appreciate their help.

Adena made this cake - isn't it awesome! It tastes good too!

We had fun together as we celebrated the 4th of July. We played, blew bubbles, put a couple puzzles together (one was small), ate, and listened to some conference messages Sunday morning.

We watched the fireworks from our apartment deck. We didn't get to see the low ones, but there were so many high fireworks that we didn't miss much.

The celebrating continued the next morning with Adena's birthday.

They left after lunch and I started cleaning and bottling cherries. We got a couple boxes of cherries from Janet and Harris and Adena brought them and some jars and canning utensils so that we could bottle them here. I didn't want to make that the project of our last morning together so I just kept it all here and did it myself after they left. I only did 14 jars, but I'm going to have to soak my fingers in Clorox for sure.
We ended our busy day with a relaxing visit with Dennis and MaryAnn. It was good to see them again and it added to our desire for our return home, to be closer to family.


Happy Birthday to Thaoe!
We love you!

Happy Birthday to Adena!
We love you!

Friday, July 2, 2010

Fun Day!

It's a good day, and I want to share a few things:

- I've talked with most of my kids today and even had a birthday wish from Auger :) I heard it! :)

- We had brownies and icecream for breakfast! Keeping up with tradition, with a bit of a twist. We always have cake and icecream for breakfast on our birthdays. But, I chose brownies instead of cake this year.

- Terry and the kids made lunch for us. While slicing strawberries for a salad they found these "lips" and put it on top of my brownie for dessert after lunch. SO CUTE! A kiss for me!
- We heard a knock on the door this afternoon and found it to be an exciting delivery. This is an adorable and delicious birthday gift. Many thanks to the sender!!! (Michael and Lisa Christensen) And thanks to others who have sent birthday wishes.

- We ate dinner at a Chinese restaurant and enjoyed some good food (and some good sushi). Here's my fortune: "Love is like makes things beautiful when you spread it, but it will dry up if you don't use it."

- Now I get to sleep, using one of my new pillow cases that BJo made for my little pillow. She got a sewing machine for her birthday and made me a couple pillow cases. Aren't they cute!


Happy Birthday to me, Elaine!

Did you know?
I'm old! And now I'm even older!