Thursday, September 30, 2010

A Full Day - Finally Over!

What a full day we had today.
I took Anthony to Moses Lake for ortho and medical appointments and we picked up some supplies he needed for a school project.
I got him back to school, went home, and got back in the car to take Terry to SCCA.

Our clinic visit seemed similar to many other visits we have had but we are happy to report that the urine infection is getting better, as are his cold symptoms. They referred to Terry's last couple issues as adenovirus and hemorrhagic cystitis. Unfamiliar words for me, but each is getting better, so we are happy for that.
No G shot today. We are going to see if he can bring his counts up on his own.
WBC was up from 2.41 to 3.27 - each time with a g-shot starting off his week. We'll see next week if it is still rising without the shot or???
Hematocrit is 32
Platelets are 93
They are trying one more time to get our summary conference in. It is scheduled for Monday. This will be our 4th or 5th try at it, so we aren't holding our breath - just crossing our fingers. We'll see! It is currently undecided if he will keep his Hickman line in or not.
Terry is doing better in some ways, but is struggling in others. He is having some terrible muscle cramps in his legs, hands, and even in his back the last couple days. These are attacking him often and keeping him up at night. He is tired and weak and sore. We are trying a couple things they told him to try and hoping that he can find some relief - soon.
He is going to start tapering off the cyclosporine medicine... YEA! ...and should take his last one on the 14th. This is the med that helps prevent GVHD. Terry has no symptoms of GVHD so we pray that it remains that way.
We'll continue to report the news as we learn it.

If you are taking time to read this blog we can safely say that we love you and appreciate you. Your kindness and concern is greatly appreciated. Thanks again for your faith and prayers. They help keep us going!
Have a great day - everyday!

Tuesday, September 28, 2010


I re-read this saying as I was cleaning up and thought I'd share it on the blog.

Sometimes, the only sense you can make out of life is a sense of humor.

Monday, September 27, 2010

Happy to be home!

Home again, home again, jiggity jig!
The doctors told us we could come home for a day or two while they wait for more test results and schedule other tests and clinic visits. Terry is being treated with medicines which are making things stable, so we were free to leave. YEA!
We had a good drive home - we may have arrived at about 6:45pm or?? We hope to stay for a couple days but know that there will be a return visit soon - they expect it will be this week, but don't know for sure.
Our summary conference previously scheduled for Wednesday is not going to take place. They want to make sure to have some answers for us before they let us go, and we agreed whole heartedly. (is that a word?)
It's so good to be home with our family and we are going to love sleeping in our own bed. I've got to think about what we are going to have for breakfast, so I'm going to say good-night! Wishing you a good one too!

Sunday, September 26, 2010

Isn't it ironic!

My last post was not about medical facts, but just about family and day to day life. Well, we know all too well that day to day life does include medical madness for us. Not long after our last post we headed to Seattle, which is where we are as I write this. Our kids were at school and at work when we packed up and left, so they were in for a surprise when they came home. What a strange life we lead.

I only have a couple minutes, so I'll get to the point. Terry was having some blood and clots in his urine so we are here getting that checked out. He has some new meds and they are doing some testing to figure out the problem. Some patients do get this type of symptom because of a virus. Tests have ruled out a couple viruses, but the testing continues.

We don't know much, but we are hoping to learn tomorrow and then head back home to our family.

Friday, September 24, 2010

Non-medical news!

Anthony had a great game yesterday! He is #34, in a black helmet.

We own some cats now. They were pretty cute out there in the rain trying to help each other stay warm. What a family they are!

Our dishwasher works!!! :) Our oven bakes but does not self clean. :( It's been awhile since we've had to pay for any repairs (Terry usually does them for free :), so when we got the bill for the dishwasher and oven to be fixed we were so glad that Terry fixed our stove element for the cost of a $7.00 part found here in Royal City.

Homecoming week is at it's end, with the game tonight. GOOD LUCK ROYAL! We'll be cheering for you, but we are staying in out of the cold.

Rain, Rain, Go Away!
This rain we are having is causing some heart ache to the farmers around here. We have beans down, as do others, and we see hay down in the community. It's been a strange year for sure!

Wednesday, September 22, 2010

Todays Clinic Visit

What a day! Day 154 since transplant. I'm writing tonight before I head to bed, for all those you are anxiously awaiting the news of the day. I hope it makes sense - I'm kinda sleepy!

Blood draw in isolation because Terry has a cold.
Bone marrow aspiration and biopsy - both sides - the most painful part of the day.
CT scan immediately after - no pain, just a long wait and hunger because he had to fast for this.
Visit with the doctors - another G shot - culture taken - nice visit, but no real news! Reports from today's testing will be given to us on Tuesday, our next visit.

This is not even funny! The words to the Eagle's song "Hotel California" are ringing in our ears, with only a slight change. "Welcome to the SCCA clinic, where you can check out but you can never leave!"

We will reschedule our appointment with Terry's oncologist for the following week. Maybe we can keep that one! XXX I don't know how to make a sign for crossing our fingers, so the X will have to do :).

Monday, September 20, 2010


So sorry we have not kept you updated - our internet has not been working for the past 10 days and we have really missed it. We've heard that many of you have missed it too, as you have been watching for updates. We apologize! They fixed our internet today, so we are back on line!!!!!
WARNING! Lotsa words coming up! There has been a lot left unsaid, and now we can say it, so BEWARE - it's a long read.

- We missed two letters to Michael - The worst part of the internet not working! We did get to read one from him today, and found that he didn't get to email last week anyway. He is still at the hospital with his companion (who will be going home sometime in the next couple weeks. He is finding it tricky to find things to keep him busy there. He gets to have an occasional shower, and has a hand towel to wash up with and "no water needed" shampoo for the other days. He is getting to know the nurses and plays "war games" with them with his companions crutches. I guess one male nurse gets into it pretty good. Some crazy fun to keep him occupied.

- We finally got our school shopping done on the 11th. Yip, late was better than never in this case. Terry and I had done some shopping for the kids while still in Seattle and brought things home to them and Dana took the kids here a time or two, but there were just a few things that needed more attention and we finally got that done. YEAH!

- Stake Conference meetings were so wonderful. It was good to be there with family and friends to hear the messages that were presented, and what wonderful messages they were.

- Last Monday we went to Moses Lake for parts and then I went again Thursday for Terry's meds. It doesn't seem like it's as far as it used to be :). Too many trips to Seattle lately :). It's all about perspective isn't it!?!

- The guys started the silage harvest and things went well for a few days, but ended up having to stop because it was too wet. Our truck drivers this year were Adelfo (our hired man), Chase, Darryl (my brother) and Dustin (our nephew). Thomas was the chopper driver. Terry was moral support and helped with a few repairs. Hard as we try, we just can't keep him away. Darryl and Dustin got to go home for the weekend and longer, until the moisture dries out and the harvest can continue. We hope it does dry out, cause our beans need harvested too. The rain has been beautiful, but it's very pour timing for our farm needs.

- We celebrated two birthdays this week. Those birthdays were posted because I had previously written and post-dated them to come up on the right days. I'm glad I had already done that since our internet was not working properly at the time they were needed.

- It has been fun to see Auger walking all over - he is one year old and looking like the cutest little toddler around.

- The work continues, even tho the harvest is at a stand still. Terry is going to get tired of me telling him he shouldn't do this or shouldn't do that .... Maybe he already is! I'm trying to be careful and not bug him too much. There are certainly many things calling for his attention. He has fixed our vacuum and our stove, but I have called in some help for the dishwasher and oven. Things are really falling apart around here. The gas pump broke and needed replaced, and the trucks are in need of little repairs, and ..... I am grateful for his knowledge and abilities that allow him to tackle these things, but I wish I felt better about his health. I'm just praying like crazy that he will be alright. He does have a cold right now!!!!! Uh Oh!

- We visited with family this past weekend. Sherri (Terry's sister)and Aunt Carol were here from Idaho Falls. We enjoyed seeing everyone. Family is where it's at!

- We did some yard work Sat. morning. I hadn't been a part of that for a long time and it felt really good. It looks better too. We'll have to do it again sometime. :) Yard work is a never ending process, so I'm sure I'll find another opportunity in the near future.

- I bottled 19 quarts and 2 pints of tomatoes today.

- I have been working on re-organizing my house, room by room, and I'm feeling pretty good with things, even though there is still much to do. I've completed the food storage inventory and will need to get right on to the shopping part of that task. At least I now know what I have and what I need.

- Terry's last appointment (Tues, 14th) went well. The doctors reported that his liver is looking better and things look good. Then we got their call on Friday saying that the chimerism tests were back. The number surprised me though. It was 65. That is down from the last report of 68. When I asked about it, they assured me that it was still within the margin of error and they were not too concerned. I wonder then, why were they so happy when it went up from 67 to 68? I'm guessing that it is because the trend was going down and then finally went up. That was a good sign in itself. We believe they will continue to test chimerisms every couple weeks. By the way, that word is said with a K and long i sound (Kimerisms).
Now, having said all that, there is more - Terry got a couple calls today to tell him about Wednesdays appointment. The simple day of blood draw and clinic visit (with a G shot) has become quite a busy day. They have added the dreaded bone marrow biopsy and a cat scan, a culture, and levels testing. With fasting and other instructions for each procedure it is becoming quite the juggling act. It'll surely be a long day for Terry. One of those days that feel good to have over. We'll post the findings of that day later, as long as our internet continues to work. :)

- Homecoming week is this week. Dress ups have begun. I'm not really getting into that like the kids would like. I hope we can come up with things that will work for them.

- I don't think I've posted about school yet - sorry! Everyone seems to be enjoying their year so far. Anthony is in 7th grade and taking football after school. BrittanyJo is a freshman and is taking volleyball after school. Connor is a junior and is not taking a sport this fall. I am enjoying his company and he can help me with things as needed. He is our "runner" - taking and picking up his siblings for their activities. BrittanyJo usually calls Connor to tell him that the activity bus is only a few minutes away from the drop off point and it's time to come get her and Anthony. Chase will go to BYU-I in January, and is working for Shane Christensen on the days he is not working for his dad. He also tries to fit in mowing lawn for his grandpa. His is quite a juggling act too. He's doing a great job of it though!

- Ethan gets blessed this Sunday. We so wanted to be there. I'm sorry we will miss it, but we know it's the way it has to be right now. The doctor told us we couldn't drive it, so we thought we'd get some plane tickets. We talked and worried and wondered until finally we realized we were both uncomfortable with going, even though we really wanted to. We weren't listening to ourselves very well for awhile. Ethan won't miss us now, but I hope that he won't feel too bad in the future when he learns that we weren't there. We vow to make sure he knows that we love him and will do all we can for him as he continues to grow, just as we will for all of our children and our grandchildren. We have not seen him in person, but we are sure that he is the cutest baby there is.

- We love our family! It's good to be home, even if I sometimes wonder if we should still be in Seattle for Terry to keep away from all this work. :)

Thursday, September 16, 2010


Happy Birthday to Auger!
We love you!

Wednesday, September 15, 2010


Happy Birthday to Megan!
We love you!

Wednesday, September 8, 2010

Day 140

We're still under the care of SCCA on day 140 after transplant...

Today's appointment was promising. We heard of an end ... again ... :)
Things are going well. That's all relative right?!!?!?! The doctors talked of maybe having only another week or two at the most, so long as things keep going well. But, just because we are released from their appointments doesn't mean it's over. It just means we can transfer to our regular oncologist, Dr. Julie Smith.

The IV meds will continue until Friday morning and then we get to switch to a pill form of the same medication for another 3 weeks or ??

The Hickman line remains - it's almost a life line to me, so I'm okay with that. I think Terry is okay with it too, we haven't had any problems with it. I'm sure it's a bit annoying, but it's not painful. He'll have it if he needs it until they decide he is well enough to remove it - not needing so many blood draws, medications, etc.

Terry had an MRI today, but the results were not yet in. We expect them to be good, but we will inform you if we learn otherwise.

They gave Terry another G shot today, and told him he can skip the Friday appointment this week and wait until Tuesday. We hope the G shot holds him over until then.

Back to the cleaning and organizing and playing catch up with all kinds of things.


Happy Birthday to LeeAnn!
We love you!

Tuesday, September 7, 2010


Happy Birthday to Wayne!
We love you!

Friday, September 3, 2010

Friday Clinic Visit

Today's reports were positive. The chimerisms were one percent up from last time. That, in itself, is not a great change in numbers, but we are pleased that "downward" is no longer the trend. It gives hope that things are improving. Of course they will check this again in a couple weeks and see if "upward" becomes the new trend. :)

The doctor says that there is a "better balance" with Terry's numbers and that things are looking good. He is to continue the IV twice a day for another week. The meds given now in an IV form may be given in a pill form later, but we'll just have to see.

The blood counts were okay, but were lower than Wednesday's lab work showed. That was expected, because he had the G shot Tuesday to boost them. Because we are living at home now they decided to give him another G shot today, mostly as precaution. I suppose if we still lived in Seattle, we would have a blood draw in a couple days to show the results and know exactly when to give it. Our next appointment isn't until Wednesday and they know that would be too long to wait.

Thursday, September 2, 2010


Happy Birthday to dad / Ron!
We love you!

Wednesday, September 1, 2010

Seattle and Home

Good reports at the clinic today!
Terry's blood work looked really good so he did not need another G shot today.
We're back home until Friday, continuing the twice a day IV meds, and I'm doing some more deep cleaning in the kitchen.
We are praying for good health - I've got a cold, and as much as I'd like to give it away, I'm trying hard to keep it to myself.


We went to Seattle Tuesday and had a blood draw and clinic visit. The blood draw showed that the IV medication Terry is getting is causing low numbers (half what it was when we left) and he had to get a "G" shot to help boost those low numbers.
We return today, Wednesday for another blood draw to check the numbers again to see if the shot is doing what it should, and he may get another shot if needed.
We return Friday for a repeat and a clinic visit.

Moving home was good for some reasons, and not so good for others. It would take me too long to write the list of pros and cons, but you can probably guess a few, and the others might be better left unsaid!

Oh! I haven't had to work with needles yet, but I was taught how to give the G shot yesterday. She said I'd probably be the one demonstrating to them today and I just told her that it was fine if she gave it since we were going to be coming back so often. We'll see. Needles are not my friends. I don't even take slivers out, Terry does that. I'll be strong if I have to, but whimpy if not :)

We went through a drive thru car wash yesterday :) It rained hard all the way home until we got to Ellensburg where it began to just sprinkle. Finally, at about Ryegrass there was no moisture at all.

Michael is having a different experience at the moment. We learned that he is in the hospital, not for himself, but to be with his companion who got in a biking/automobile accident. It sounds like it's just his foot/ankle area, and is requiring surgery and a long recovery, but luckily it is not life threatening.