Wednesday, June 30, 2010

Today is day 70 and here is our report!

Our doctor visit was much like any other visit as we learned the results of the most resent blood draw, shared how Terry was feeling and what he is experiencing, and heard the doctors comments on how they think things are going.
The lab results:
WBC is 4.92 which is up from 4.72.
Hematocrit is 31%. It has been volleying between 30 and 31 the last few reports. They don't foresee a need for more transfusion yet, and of course expect that number to increase in the future.
Platelets are 122 thous.
Neutrophils are 2.31.

His lymph nodes are at 2 cm, and we know they were over 4 (close to 5) at the first scan he had here a couple months ago.

Terry and I are sensing an end to this stay as we keep track of what day it is and realize that we have about a month left until day 100. But when we try to mention anything about the end of our treatment here, the doctors seem to shy away from talking about it. They must want to focus on the issues at hand. They know that things are far from over and recognize the need to stay focused on what is taking place now so that things can continue to go well for Terry.

We have been curious as to how Terry will be feeling and what he will be able to do when we do go home. One thing we know and have heard from the first visit here for consultation was that he will not be allowed to go back to work for at least a year, which we learned is standard for all patients, but farmers, construction workers, mill workers and the like, may need to find a different job indefinitely. We did learn yesterday that he will need to be very careful around crowds, especially during the cold and flu season, because of some of the medicines he is taking and because his immune system will need awhile to kick in. After he stops some meds and gets his immunizations he can rest a bit easier, and that will begin to take place about 6 months out. We've wondered what he will do about his farm and we were told yesterday that he shouldn't teach for at least a year, so that means seminary is not a good thing for his physical health. We aren't giving up on anything yet, and have no plans except to follow the doctors orders as closely as we can, but we do wonder what life has in store for us.

Life for us took a big change when we learned Terry had cancer 6 years ago and began treatments for it. It changed again as we left our family and came to Seattle for several months, and it will change again as we return home and try to figure out what we will do and how we will do it. But there is one thing for certain. We can handle change! In fact, we recognize that change is or can be good. We will be fine! We know that things will work out for our good. The serenity prayer is displayed in a couple places in our home, and it goes like this:

"God grant me the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference."

This morning I found an email from Dennis that had some inspirational sayings. My favorite for the moment is this one:

"The task ahead of us is never as great at the Power behind us."

Let me make one thing clear - WE ARE NOT WORRIED! - we just have some thinking or contemplating to do.

Though the doctors do not give us any indication of when we will get to leave, we have heard them use words like remarkable and fantastic as they describe how they think Terry is doing. Hearing them use those words give us courage and hope, but our greatest help comes from the Lord.

Sunday, June 27, 2010

Sunday guests

Shawna and Troy brought BrittanyJo and Anthony here to stay with us for the week. We are so grateful for their kindness and goodness. We are constantly in debt to our family for the service they give to us. Thank you!
We look forward to the time together this week. It will be a change for all of us, and we welcome it, wishing others could be here too, but happy to have some.

Things are going well, and we are going to keep on keepin' on!

Saturday, June 26, 2010


Happy Birthday Shawn!
We love you!

Wednesday, June 23, 2010

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.

A Quick Overview

We spent Monday afternoon at the aquarium, after having lunch at Ivars.
We went to a blood draw Tuesday morning and came back for lunch and playtime at the park, just a couple blocks away.
Lunch at home can be just as fun when you get to sit in the window sill.
We are back to the "empty nest" feeling for a few days until BJo and Anthony return this weekend to spend the week with us, and others return for the 4th of July. Will we feel the empty next syndrome when we really have it in 6-7 years? Most likely, in a different way.

Sunday, June 20, 2010

HAPPY FATHERS DAY to all of our favorite fathers!

Our day was great! It started Saturday evening when Thomas, Dana, Auger, and Chase came to visit. They visited and spent the night.

Sunday afternoon Gregory, Adena, Brayden, Tawny, BrittanyJo, Anthony, and Connor came.

We did some more visiting and checked out the roof top to see the SCCA building and the space needle from our apartment.

Later that afternoon Skyler came. We didn't get a picture of him
:( but we enjoyed his company.
He had a nice visit with his dad, sharing his plans for his future and catching up on lost time, (or trying to anyway).
Brandon called to wish his dad a happy day and we emailed Michael.
Thomas and family, and Skyler and Chase had to go home Sunday night and Gregory and family, and our other 3 children spent the night.

We have plans for a couple days of more enjoyment. We'll try to keep you posted.

Saturday, June 19, 2010

Wednesday, June 16, 2010

Day 56 brought the bone marrow aspiration and CT scan.
Terry took some Ativan before the aspiration, but opted out of the other sedation that made him throw up during the last aspiration. It was nice to have just one side done and no bone biopsy needed. Things went well.
The contrast he had to drink for the scan was different than usual. They have changed things a bit and it was a little easier to drink than the other they used to have, though it was still kinda nasty.
We took the shuttle home and had some soup to help warm us up. It was a very long morning and a late lunch, but Terry is resting and doing well.

Tuesday, June 15, 2010

Day 55 cont.

Somethings happening out on the lake tonight! They just keep coming!

Day 55 today.

It's been a busy morning, more for our minds than for our bodies. We had a chilly walk to the clinic this morning, but the skies cleared a bit this afternoon. We had several medicine changes and additions, and received instructions for tomorrow. There are several new things to consider, so it seemed a bit confusing for a minute, but we think we have it set in our minds and our notes so that we will do all we are supposed to the right way.

Today's blood draw told us that Terry's hematocrit is stable, at 31%. WBC is 4.42. Platelets are 119,000. The numbers are rising, and things are going well. There is always concern for liver and kidneys, so they watch that closely and encourage drinking more water, etc. They actually watch everything quite closely. We've slowly added more magnesium, and are presently adding more Vitamin D. After tomorrow we slowly decrease hydration. They are tapering off the cyclosporine meds and gave us a schedule to do so. The schedule goes through October, so we made sure that wasn't indicative of how long we would be here. They say we are right on track and see no reason to extend the 100 days at this point. However, they are always quick to remind us that things can always change.

Tomorrow's schedule includes blood draw, bone marrow aspiration, and CT scan. It's going to keep up on our toes with the contrast he has to drink in between appointments. He will have no sedation this time, because he doesn't need to be vomiting and then drinking that contrast. His last experience with the sedation before the aspiration was not a pleasant one and he doesn't want to go through that again.

There is almost a friendship built between the providers and their patients. We feel comfortable here and are grateful for their good care.

Monday, June 14, 2010

Monday, Day 54

Warm day today! We walked to the clinic without our jackets. WOW!
Things are going well. Hope you've had a good day!

Friday, June 11, 2010

We are still here!
Things are going well!
Good night!

Wednesday, June 9, 2010

Clinic Visit Today!

Things are going well for what his body has been through.

Here are his counts -
- White blood count is 3.6 Normal range for an adult is 5,000-10,000. I can't remember how to translate 3.6 into that :( Sorry! It might be 3,600?
- Neutrophils are at 1500. Normal range is over 1000 :) Neutrophils are a type of white blood cell that is first to respond to potentially fatal infections. So, he's good! Yeah!
- Hematocrit or red blood cells are at 30% and stable, and they're saying "good". Normal adult is 37-52%.
- Platelets are 100,000 and the normal range is 150,000 to 500,000.

In one week he will be at day 56 which means he will have another bone marrow aspiration. We don't look forward to that day, except to have it done, and to learn the numbers that they get from it.

About our supplies change - We used to get things thru the clinic, but now that our "case rate" is over, we will start receiving them from an Apria healthcare company. We got our first delivery today. No more walking in the rain to get hydration, but no more knowing that the supplies are just right there if we run out of something. We are just a phone call away though. That should be easier and maybe it will be once we get used to it.

Oh, Rachel (our provider) is going to get us off of that "black list" at the blood draw, so no more isolation.

Tuesday, June 8, 2010

This post is for you if you are anxiously awaiting some info.

We're just letting you know that we don't have any new info! We can tell you that Terry is feeling pretty good. He is slowly improving.
We did have blood draw a couple times this week, but we don't get results from those until we have a clinic visit with the doctors. We had a visit scheduled for today, but they changed it to tomorrow.
One silly thing is that we have been taken into an isolation room for blood draw the last couple times. They have that little red sticker on our page that tells them we need contact isolation. They put on their gowns and we feel so contagious, with no good reason.
Well, we did ask our team nurse tonight when she called to inform us of medicine changes and she has no idea why we are in isolation. She will make that correction, but if we need to we can tell them to call the orange team when we go for the next blood draw, because isolation isn't necessary.
We will consider it just a funny thing to keep us alert and to give us a change of pace. Change is in our future. We will have some changes in the way we receive our supplies, but we don't want to give too much info on that because we aren't completely sure what we are talking about. Tomorrow will be our first day with the new change. We'll let you know.

Monday, June 7, 2010


Happy Birthday to Michael!
We love you!

Did you know?
Michael is the tallest in our family. And the skinniest, college thickened him a bit, but we hear that maybe the mission thinned him down again.

Bonus: photo of our Japanese missionary.

Sunday, June 6, 2010

Day 46

We are definitely on the lookout! Last night when we took Terry's temperature it was 99.4. We were on alert and not because it was really high, but because it was so high compared to what it usually is. He usually has a temp somewhere in the 96 and 97 area. We have even seen it in the high 95 area, but we have never seen it 98 or higher, so we were beginning to worry, especially since we took it again a little later and found it to be 99.6. Oh no! It was on the rise. What would happen thru the night? We are instructed to call in if it hits 100.

We were happy to find a normal temp this morning, at 97.9. Though it was still slightly higher than normal it was still good to see that 97 again.

It was raining when we got up today and we wondered if we might take the car to the clinic for blood draw. When it came time to go the rain had stopped, so we walked. It was not raining on our way back either. But, when we looked out a half hour later it was raining again. That's Seattle, we've found. On again, off again rain system.

It was a bit confusing at blood draw today. They took us right back since we were the only ones there at the time, and then into a private room, where we've never been before. We didn't think too much of it until the nurse put on a sterile gown and we saw the red alert sticker on his tray. So, we asked about it. They didn't know, it was just their instruction, and they wondered if it was a case of mistaken identity. No, not really, they just wondered if the sticker got stuck to the wrong paper. We still don't know why, but somehow they must have made a mistake, because we know of nothing that would necessitate that. New experience I guess.

We listened to some Conference messages, wrote to Michael, had a tiny nap, talked with Anthony on the phone, and had some surprise visitors.

Jack and Carla Hill were in town visiting family this weekend and stopped by to see us, dropping off a bucket of fun. Do you know how much our family loves Jack and Carla? Let me share. Jack was our home teacher for many many years. He was there in our home most every month and occasionally he would bring Carla as his companion. There are other occasions that have brought our families together, like visiting teaching and Jack has been our kids HS principal for many years, but the occasional home teaching together was a special treat. This would often be the case at Christmas time and we would have the decorations up. One time Carla saw all the snowmen and asked how many we had. We didn't know, but the kids began to count. Maybe there were 60, but not all individual, some were together with up to 5 or 6 snowmen as one piece, but counted as 5 or 6. Anyway, that has been a fun, almost annual event for us ever since. And, guess what? There were some of the cutest salt and pepper snowmen in our bucket. Thank you Jack and Carla, for the visit, the fun, and for "our history". You are awesome!

Saturday, June 5, 2010

We are at day 45 today!

First, we apologize for not posting about being able to go home for graduation before we left. We are so sorry! We intended to, but when we got the call we just got ready and left without posting about it. We were told that Terry's lab work looked good, and we were free to go for the night, and to enjoy graduation. There wasn't anything more we needed to hear. We didn't even find out the numbers/blood counts. We just left. The escape plan was already in place, so it didn't take us long. We did call home to let them know, but that was once we were on our way because the phone was busy when we tried the first time.

We got home about 1:30 and had a wonderful day. Adena had planned and prepared a great meal - one of Chase's favorites. There were many others who helped her, even with cleaning. Thank you Ellen, Shawna, Idris, Shelly, Marla, Dana, Ariel, BrittanyJo and anyone else that helped. I shouldn't have started giving names, because I don't want to forget anyone, and there may be some that I'm not even aware of. Thanks to all.

Thanks to everyone who joined us for dinner and graduation, and thanks to everyone that helped make Chase's day a great day. We got to see a few of his gifts last night and this morning, and they are pretty awesome. Thanks for all of those too! We are certainly aware of all of the kindnesses shown our family and to Chase personally. Thank you! In fact, he mentioned this morning that he should do this more often, cause he made more money for graduation than he did in a full weeks work. I guess this was really 13 years of hard work. :)

Here is Chase and his great friend, Ryan.

It was a good feeling to drive down highway 26 again and to turn into our yard and then to walk into our house. We enjoyed being home and visiting with family and friends, and we were so glad to be with Chase at graduation. We didn't have the best seats in the house, but we were in out of the wind and cold (until we got out to give him a hug). Thanks again to all who helped make his day special, for the love and attention, and the gifts, and the photos, etc.

We visited a bit more this morning before we left, and finally pulled ourselves away. We really do like being parents and having such wonderful children. We feel the desire to be there with those that are still at home, who still need parents to teach, love, and support them daily. We want to be there with them. We recognize the difficulty in this separation, but we are so grateful that it is temporary and that it will provide for us all, a better way - a quality of life that we haven't enjoyed for awhile now.

We also recognize the difficulty in stepping in and taking responsibility for the family, and we are grateful for the willingness (and availability) of those doing that. We really love our family. We have gone from 2 to 19 (counting the two that will join our family in August).

We knew we needed to get back to SCCA and continue to take care of Terry's health and get his hydration for the day. It was a tricky escape for us and we enjoyed it, though we worried about it. Things turned out well though. The traveling was even pretty good. Traffic got worse the closer to Seattle / SCCA we got, but it was a fairly easy drive this time.

We were experiencing a lot of different feelings during the last couple days, but probably the strangest feeling was after we stopped at the clinic for Terry's hydration and then started back to the apartment. It actually felt good to be back. I guess we knew we are where we are supposed to be at this time. There was a feeling of comfort and peace. We were so worried that we were going to get too cold or somehow cause a problem. We tried to be so careful, not wanting to undo or set back what we have worked so hard for for the last 2 months. We do remember signing the papers promising to do as our doctors instruct and require of us and staying within the limits they set. Even though we were given permission, we were still taking a chance that was concerning. We continue to pray for good reports and no ill effects of this trip.

We also continue to pray for our family - each person, individually. We know that our Heavenly Father is aware of you. He loves you. Remember Him. Remember to pray. He will help you through it all. and Be happy!

Thursday, June 3, 2010

Yoga anyone?

For the last few weeks our team (the doctors and nurses, etc. that take care of Terry here) have been suggesting that we go to the yoga class. Well, lack of desire kept us away for a couple weeks and then when we thought we would finally attend it, Terry's red blood count was bad and he had no energy to go.
At our appointment yesterday that topic came up again and we told them we would go today, and we did. Need I say more? :) I will! ;)
There were some that were really into it and they really enjoyed their time there. We do understand why there are yoga fanatics out there. Relaxation and concentration, well, and breathing, seem to be the key. There is some movement, but it is slow and easy. Personally though, I don't care to tell my trainer about my inner thoughts and every pain, and for all the class to hear as I do. I am a much more private person I guess, and have never cared to be up in front of the class...any class. Besides, I have that stuff on my wii and it's just me and my trainer (who cannot see or hear me) and occasionally my husband. I like that setting much better and it is much more relaxing.
Terry has mixed reviews about the class. (Just glad he didn't have to wear tights, but then we never really thought he'd have to. It was just something we laughed about.)
Terry is feeling more energetic each day and we are so pleased that the nausea is not too bad. He hasn't had any meds to combat nausea for a week now and he's handling it great.
Things are looking good.

Wednesday, June 2, 2010

Visit and Visitors!

We had blood draw and doctor visit today.
Red blood count is rising. It was 24 Sunday before transfusion. It was 30 yesterday and 31 today. We hope it continues, upward bound. (They say that "38 is the low for guys.")
They ran several test trying to figure out what was causing it to be going so low, but nothing was positive, so they are still stumped.
The nurses and doctors got to know Dennis while he was here and occasionally they make a fun comments about him and his blood. Rachel said today that they were trying to figure something out so they could blame it on Dennis, but couldn't come up with anything. They really don't know what to blame it on. So Dennis, you are free and clear on this! ;) It's not your fault! ;) Terry got good blood for sure! Thank you! (again and again) :)
We have talked about how Terry could pass for Dennis and maybe could eventually take a blood sample to prove that he was Dennis. Does that work??? :)
Brandon decided they were going to have to call Terry "Uncle Dad". Cute huh! :)

About heading home for graduation - our doctor is not anxious to let us go. Doctor Maloney didn't want to say yes, and doesn't want to jeopardize things. He was quite hesitant but agreed to let us come in for a blood draw early Friday morning, wait the couple hours for testing and call in to see how things are going. If all is good, or good as can be at the moment (it's all relative), he will give his okay. The doctor is from Yakima, so he has an idea where we live. When we explained that we lived 10 miles from the Columbia River he was a bit more comfortable. He doesn't like the distance, but it's not as far as he was originally thinking. We will have to be back early Saturday morning and there will be an added blood draw on Sunday to make sure that all is well. We are at risk, but it seems to be a risk we'd like to take at this point, if numbers show they are improving after the Friday blood draw. We just keep hoping it'll turn out better than we think!

What a great treat for us! Terry's parents came with Ellen, Shawna and Troy to visit us today. Ellen, Shawna and Troy came to the clinic with us, while Keith and Idris waited for us at the apartment. Then we all enjoyed a wonderful beef stew that Shawna made and some yummy cinnamon rolls from Idris. Other foods and goodies were brought and left for us, including more water from home. Troy had to carry that 5 gallon cooler up all those steps. We really know how to put our guys to work don't we! We visited and checked out blogs and photos, getting everyone updated on the latest and greatest. :) We enjoyed the visit and love and appreciate our awesome family. Thanks for coming!

Tuesday, June 1, 2010

Coming up!

Chase will graduate this Friday! WOW! 8:00 pm at the RHS football field.
He has had a full week already as he was asked to speak at seminary graduation Sunday night and also for baccalaureate Monday night. We have heard good reports about each. Suppose we better ask if he has to do something for Friday, but we're just assuming not.
We do however, have plans for a graduation dinner at 5:00 that evening, to help celebrate this special event with him.
We hope to be there, but will not know until after our appointment tomorrow (at the earliest). If you would like to join the family, with :) or without :( us, then please let us know ASAP so we can plan accordingly. (To do so you may comment to this post, send us an email, or give us or the kids at our house a call.) We hope to see you! If we do not, then please celebrate for us! We'll do our own here in some way. They do not usually allow people to leave in the middle of their treatment, but are considering special exceptions for us.
Special thanks to Adena for the help she is giving us with this and with everything in general!