Monday, December 27, 2010

How low can you go?

Lab results were telling today. We didn't get a copy of them, because there was a problem with the machine at the clinic and they had to send the blood to the hospital to be tested.
I don't even remember all the numbers, but I do know that things were similar to what we've heard before until we came to the platelets. The reds were around 30 and the whites - I think I remember a 1.1, but the platelets are lower than ever before, at 33. They have been low, but never like this. We are blaming some of it on a different machine, but we know that only accounts for a couple numbers difference, which means they are still too low.
For now, we continue the wait and watch. We'll check again next week and go from there. That is a familiar thing to us, so we can do that.
He got a tiny scratch yesterday changing a blinker bulb and it bled like it was deep and terrible, so we know we've got to be careful that way too.

Sunday, December 26, 2010

HAPPY BIRTHDAY!

Happy Birthday to Hollis! (1958-1971)
Sending our love to him, in heaven!

Saturday, December 25, 2010

Happy Holidays!

We have had a wonderful Christmas holiday thus far and look forward to the remaining days of the season. We love family and friends and we love the Savior.

We had a nice phone visit with Michael on Christmas Eve, that we will hold on to for days and weeks. We think we will have one more for Mother's Day and then not long after we will get to see him and welcome him home. He is doing well. Old news is that he is a zone leader, and enjoying it. He loves the people there and he loves the Lord, so things are great. There is a couple from Connell that live there, on their second mission, and he loves them. I am grateful for good people that love our children. It truly helps make life beautiful.

We are keeping too busy to post much, but do want to report that all is well.

Wednesday, December 22, 2010

2010 Family Newsletter

We have finally sent our Christmas greetings to friends and family. We do hope you got one. Please forgive my oversight if you did not. I'm finding that I've a short circuit somewhere, and I am unable to fix it at the moment. :)
Here is a sample of this years newsletter.

We have had several attempts at writing our Terry Hebdon Family 2010 Newsletter and the waste basket was getting quite full. Many of you have been following our blog reports all year and already know the news, so a newsletter just seemed like old news. If you haven't followed our blog, you'll find us at www.tandehebdon.blogspot.com. It helps make the miles seem not so distant, so join us this year.

What I really wanted to do was to send a family photo with everyone together, and a simple Christmas greeting, but that just wasn't going to happen.

After trying, and failing, many times, I have finally come up with a way to get our whole family together, at least on paper. Here we are, all together, everyone is smiling and ...
Life is Good!




Have a Merry Christmas and a bright new year.
Your future is as bright as your faith!
President Thomas S. Monson

With love from the Terry Hebdon Family

The Four Candles

The four candles burned slowly.
Their ambiance was so soft you could hear them speak...
The first candle said, "I Am Peace, but these days, nobody wants to keep me lit." Then Peace's flame slowly diminished and went out completely.

The second candle said, "I Am Faith, but these days, I am no longer indispensable." Then Faith's flame slowly diminished and went out completely.

Sadly the third candle spoke, "I Am Love and I haven't the strength to stay lit any longer." "People put me aside and don't understand my importance. They even forget to love those who are nearest to them." And waiting no longer, Love went out completely.

Suddenly...
A child entered the room and saw the three candles no longer burning. The child began to cry, "Why are you not burning? You are supposed to stay lit until the end."
Then the fourth candle spoke gently to the little boy,
"Don't be afraid, for I Am Hope, and while I still burn,
we can re-light the other candles." With shining eyes, the child took the candle of Hope and lit the other three candles.

Never let the Flame of Hope go out. With Hope in your life, no matter how bad things may be, Peace, Faith and Love may shine brightly once again.

Monday, December 20, 2010

Reporting on our doctor visit:

The visit today was informative...
Some of the results of the bone marrow aspiration and biopsy were in and things are looking a little better again.
- Chimerisms tell us it is 71% donor, so that is up from the last results of 63% or 65% (we don't remember exactly).
- Flow cytometry tells us there is 13.7% CLL or chronic lymphocytic leukemia.
- The core sample was 10% and that is low, so they tried to decide what is hindering that. One medication that he is taking may be the culprit so he will stop taking it. This med is to help prevent pneumonia and they think he should be fine without it, but will of course, watch him closely to make sure.

WBC = 1.8
Neutrophils = 0.8
- He got a neulasta shot today, which means those numbers will be improving, but he will be feeling some aches and pains because of it.
RBC = 2.77
Hematocrit = 30.3
Platelets = 64

We don't understand why the blood counts are changing back and forth so much and we wish Terry had more energy and stamina, but were reminded today that it takes time, sometimes more than a year, and Terry has had some issues to deal with that have set him back a bit, so it's going to take him longer.
I've felt a bit discouraged lately with the lack of visible improvement that seems to be taking place, or not taking place and was worried that things were probably getting worse rather than better. We have found some peace in the fact that things are improving even if it isn't very visible.

It is a wonderful time of year, as we celebrate the birth and life of our Savior. He is our strength and we are so grateful for His love and sacrifice on our behalf. Merry Christmas to all!

Friday, December 17, 2010

HAPPY BIRTHDAY!

Happy Birthday to Terry's dad, Keith!
We love you!

Tuesday, December 14, 2010

Reporting:

Have you ever wondered how late you could be to a doctor appointment and still have the doctor see you? Well, we were 3 hours late to Terry's appointment today, due to an accident ahead of us. We called in to tell them of our delay, but only left a message on their recording. We thought they'd call us back, but they never did. We wondered if we should call to make sure they could still see us, but decided we weren't going to give them a choice.
We wanted to at least get Terry's blood work checked for the day to see about a transfusion, so we waited for the accident to be cleaned up and continued on to the clinic.
It turned out much better than we thought. We had the blood draw, the aspiration/biopsy, the doctor visit, and the transfusion. We didn't get home until after 9:30pm, but we are glad to have it done in this one trip.
We learned that the CAT scan he had Thursday showed no sign of the EBV, but they did see slightly enlarged lymph nodes, which didn't seem to cause much concern.
We felt that the bone marrow aspiration and biopsy was well done - for what it is. Luckily he only had to have one side done today.
The Hematocrit was low, so they went forward with the transfusion, and it went well too, even though it seemed to take forever. That should help him feel a little bit better.
The platelets are creeping downward and the WBC and Neutrophils are most always low, if not critical, so there just seems to be a general consensus that this aspiration is perfect timing. We really are looking forward to the results and will post them when we get them - hoping for Monday's appointment, but we're not sure.

Please forgive me if this has not made sense. I should be in bed, but had to wait up for kids who had basketball games tonight and decided to take advantage of this quite time.

Wednesday, December 8, 2010

Happy December!

I have neglected to post much more than doctor info lately. I'm feeling bad about it and need to do better. I can see that I should post more often so that each post is not so long. But, this post, as long as it is, is only a half a week worth of joy. Certainly the rest of the week will be great too.

- We were trying to get to my parents house to have my dad give Chase his patriarchal blessing. There were so many things conflicting with it making our opportunity quite difficult. Chase wanted it before heading out to college (in only a few short weeks) and he wanted his grandpa to do it. While talking with my dad about our choices he offered to come this direction to help us out. We gladly accepted. So they came Saturday, gave the blessing after church, and left Monday morning. We are so grateful for their sacrifice and love for us. THANK YOU Mom and Dad!

- The patriarchal blessing was beautiful. Chase is the first of our children to get his blessing from his grandpa, since all the older boys had received theirs before my dad became a patriarch. All of the younger kids are looking forward to receiving theirs from their grandfather too. We hope to not feel so crunched and out of options when those opportunities come. :) We are THANKFUL for these blessings from the Lord.

- We watched the 1st Presidency Christmas Devotional Sunday evening. It was a beautiful devotional. It helps remind us of the reason for this season and we enjoyed the messages and the music. It helps set the tone/mood. THANK YOU to Pres. Monson, Pres. Uchtdorf, and Pres. Eyring.

- LeeAnn and Brian and their children came to visit Sunday evening after the blessing. We had dinner and watched the broadcast together and enjoyed visiting, just like old times. We love family, and missed those who could not be here. We are THANKFUL for family - all of our family.

- The missionaries came over Monday night, with a friend, for family home evening. They showed a movie about Joseph Smith. What a beautiful spirit we felt during that movie and what a delightful evening it became. THANK YOU Elders! THANK YOU to missionaries everywhere who help strengthen individuals and families and share the Good News.

- Today will give me time to finish setting up our Christmas decorations. I love the nativities, the lights, and the snowmen. :) And I love the Christmas music. I love celebrating Christ's birth. THANK YOU Christ and our Heavenly Father!

- We had a RS meeting meeting last night - centered around Christ and Christmas. It felt good to be gathered with so many good women and we did feel of the Spirit of Christmas. Some of us participated in a cookie exchange after the meeting and we brought home a large assortment of cookies. The assortment we brought home looked like a masterpiece. It was fun to see the different kinds of cookies and surely they will taste delicious. We got a recipe booklet for those cookies and I look forward to trying them sometime. THANK YOU sisters!

- We have much to be grateful for. In November we started writing down one thing each day that we are grateful for. We are continuing that thru to the end of December. We write it on a little piece of paper and roll the paper up and put it in a glass vase/jar in our family room so that we can see it often and remind ourselves of our blessings. I think it is helping me to have a more grateful heart and recognize the good that is all around us and the blessings in my life. It helps us see just how much our Heavenly Father loves us and has blessed us. We have some days that we forget, but overall it's been a great thing. We are THANKFUL!

- As I think about the things I have posted here, I realize that they say much about family and faith. My two most favorite things in life. The Gospel of Jesus Christ is true and our lives are blessed as we follow His teachings and participate in the ordinances and covenants that are available to us. Family is our most important possession. The two need each other to allow eternal life and happiness, just like the priesthood and womanhood need each other. One without the other would just would not do. What a wonderful Plan of Happiness! I do feel blessed, and pray that we may live worthy of the blessings that await us. THANKS again, to our Loving Heavenly Father and our Savior, Jesus Christ!

PS - All of our water problems are fixed and under control! THANK YOU Terry!

Tuesday, December 7, 2010

This week's medical report

I'm finally getting around to posting about the doctor visit. Things are fine, but the RBC is getting pretty low. I don't have the print out to show the numbers today. Terry is feeling the results of the low red cells. He had been feeling worse over the weekend, but we didn't know what to blame it on. They are planning for a transfusion Tuesday when he gets his bone marrow aspiration, but told him that he should call to get it sooner if he started feeling any worse. He also has some nausea and is to watch that and if it gets worse he should start taking another medication. He is doing fine, other than that :) We look forward to the results of the aspiration and will share that info when we get it.

Saturday, December 4, 2010

HAPPY BIRTHDAY!

Happy Birthday to Skyler!
We love you!

Did you know?
The D in Skyler D. Hebdon stands for Dorward, his great grandpa. Skyler's due date was the 5th, which was Dorward's birthday.

Thursday, December 2, 2010

HAPPY BIRTHDAY!

Happy Birthday to Brian! (C)
We love you!

Wednesday, December 1, 2010

Snow and Water

Yesterday we saw snow fall and water fall.
The snow was beautiful big flakes that we would love more if we didn't still have corn standing in the fields needing harvested. That seems to be the case in many other fields we see along our travels to and fro. The weather has been strange this year. But then, there have been many strange or different things happening this year, so maybe it fits right in.

The water fall came in the way of a toilet that kept running and over flowed to make a pool in our bathroom and bedroom. It wouldn't shut off and couldn't keep draining. So, we spent the day scooping up water with a dust pan and soaking it up with towels and more towels. We aren't sure what remodeling will need done with the vinyl, but I made a safety call with the carpet and took it and the padding out. We also have a heating duct that we will need to replace. I'm not ready to go carpet hunting, so it will have to wait until after Christmas, family reunion, and taking Chase to college. We cut out the wet section and left the other, so we'll throw a rug down after it is completely dry so we don't have to walk on the bare floor. If I wait until those other things are done I will probably make a better choice - or at least feel better about it. For now, there are heaters and fans going and it's looking pretty good this morning. Luckily the sub floor looks undamaged under the carpet area.

With our large gathering for Thanksgiving we had something go into the toilets that should not be there, and it was clogged up a bit causing some hardship with showering and I couldn't do laundry, etc., and we finally had some back up in a couple showers. The guys got to go out in the snowfall to get that figured out and cleared out. We think that is under control now. Maybe next time we have a large gathering we will rent some BIFFY's. :)

Today is a full day for sure, definitely laundry day, though I won't get it all done. We are just glad that yesterday is over. We are all pretty tired and muscle sore from the bending and wringing out and heavy lifting .... Other than that, things are going great! :)

Tuesday, November 30, 2010

Dr. Visit Report

Terry's blood counts are up from critical to low. I'll not report on all of the counts since there are always over 40 different Hematology and Chemistry counts we have listed on our reports. Probably only half of them are ever talked about. And only half of those really tell us anything that makes a change in meds or activity needs. I will give you the blood counts that we always check, but will leave out the chemistry counts. I should say though, that the chemistry counts look slightly better than last week, so we are pleased there too.

WBC = 3.4 (L)
RBC = 2.5 (L)
Platelets = 68 (L)
Neutrophils = 2.3 (actually that is normal...yeah!)

Terry's burn on his finger looks great! It's still there of course, but it looks so much better. Every day this week seemed to show great improvement. We are probably at a point that it will not be as noticeable each day, but we are pleased. The lab culture claimed it was growing strep, but the medicine he is taking helps cure that, and it looks like the medicine is doing it's job.

As for how Terry feels - he has good days and not as good days, but overall, we must say that he is doing well. We have a bone marrow aspiration set up for the middle of the month, and that will tell us a bit more about how the transplant is working.

Tuesday, November 23, 2010

Terry's finger is looking better today, so everyone feels better about it, but we are to call in tomorrow to let them know if there are any changes.
The shot he got yesterday is kicking in. We know that because it is causing a lot of discomfort and even pain in the bones, etc.

Other news:
No school today! Too much snow last night, especially in the form of drifts, and it was way cold.



Some of us went to the doctor appointment this morning and we all helped clean the house this afternoon. We just got done watching Miracle Match - it's a good movie. It's about 11 degrees right now, and we are so happy to have a warm house to be in. Ah! The comforts of home! Home is such a great place to be!

Monday, November 22, 2010

Today's Doctor Visit

I am almost surprised that it has been a week since our last appointment. A lot has transpired but I haven't blogged about any of it. I'll not try to play catch up today because it'll take too long. We'll just go right into today's doctor visit info:

WBC = 1.4 (Critical)
RBC = 2.75 (Low)
Neutrophils = 0.3 (Critical) [I should probably clarify that these Neutrophil reports are always the Absolute Neutrophils]
Platelets = 71 (Low)

Today's critical counts led to the decision to give Terry a Neulasta shot. They say it will start to help by tomorrow and it continues to help for awhile, so Thanksgiving guests shouldn't worry. They should wash their hands, but no need to stay away. That was good to learn, cause we are soooo looking forward to the 70 count guests for dinner. Everyone is helping with the meal so it's all good!

More good news is that the counts that tell us the condition of the liver are not as high as they have been, and we hope they continue downward.

Terry had to get an IV med today because of a burn he got on his finger while working this weekend. It sure looks wicked. He is also on an oral antibiotic (4 times a day) for the same thing. (I think these are the first bright red capsules I've ever seen.) They washed the burn and put a topical antibiotic on it and bandaged it up again. They want him back in tomorrow to check it. These types of things really are concerning for transplant patients. It's always high alert. I don't say that because I think they are over reacting...it really is a wicked injury...I'm happy to have them watching it.

Monday, November 15, 2010

Medical Report

Terry's visit today was good. Terry is feeling better than he has done in the last few weeks so that is good too. We hope it lasts.
Sometimes it's hard to say that the blood reports are good when the counts are low, but those low counts are not critical, so that is good news. Actually, his neutrophils are up and normal today. Today I'll put the normals in parenthesis behind his counts so you can compare.
WBC = 3.2 (4.5-11.0)
RBC = 2.97 (4.50-5.90)
Neutrophils = 2.2 (1.8-7.8) awesome huh!
Platelets = 77 (150-400)

We'll just keep on keepin' on! We hope you and yours are happy and healthy today too!

PS. Can I just say this - I have great visiting teachers! They were just here visiting me, and I love them!

Mission Report

Michael sent one of the longest letters he has ever written. He had to let us know he was alright and just what happened.
He is alright, but was in an accident. He was coming down a hill, riding his bike past the stopped traffic. As he got to a little side road one car decided to jet out of line and down that road, without any signal or warning, and just in time to collide with Michael.
"i flew. it was so classic! i cleared the front of the little car and landed with a sweet somersault 180 twist thing and ended up squatting on my haunches looking back at the car and my companion coming down the hill."
His companion saw the whole thing; "he saw my bike get whipped up in the air and thrown 2 meters in the air and 5 meters forward. about on meter past me. my companion said it was the craziest thing to see a bike flying without somebody on it let alone just to see a bike flying."
To make things worse, the car just took off and never returned.
Michael said that he got a couple scratches and a chunk of skin taken off one of his knuckles, but other than that and some bruising he is fine. "my helmet and backpack took all the beating of the short trip across the road."
It sounds like his bike took a pretty good beating though and will need several repairs.
They were only about a mile away from the branch president's house when this accident took place, so he carried his bike there for help, and it sounds like this guy took great care of them.


We are just so glad that he is okay and that he didn't end up in the hospital, or worse. We continue to pray for his safety and health, and hope that he has nothing show up internally or otherwise difficult health wise.

Michael says that this is one of his most challenging areas he has been in, but he loves it soooo much. Over all, his letter did sound positive, and you'll notice, he sent some photos.


Thanks for your prayers for him and the missionaries. We know they help! We believe in prayer.

We believe in missionary service too. I have 2 sisters, and all three of us have a missionary out right now. That's a pretty awesome feeling. We have several missionaries serving from our ward, and we have friends serving from other areas of the country, and they are all awesome people. We love you and we pray for you all! You go guys, and gal!

Monday, November 8, 2010

Today's Doctor Visit

We are very pleased with Terry's white blood count - 5.1 - we haven't seen this number for a few months so we are happy.
The RBC is still low, at 3.08 and platelets are low, at 82; but that is higher than last week. The Chemistry numbers look pretty good too, though he could use some more protein. :) The liver enzymes are high, which seems to be a new normal for him. We hope to see changes in that in the future.
Terry has felt a bit icky lately, but we are blaming that on the flu. We can't be sure if he had the flu or GVHD, so he is still being treated for GVHD. It's best that way.
Overall, we feel good about our visit and results and continue to look forward to better days ahead.

Corn harvest began for us today. It's the last crop of the year. Thanksgiving is always better when the harvest is complete, so we're hoping for good weather and great days ahead.

LUCKY US! We will have some great days ahead no matter the weather. The kids have early release this week so our family time is increasing for a few days. We look forward to it!!!!!! Too bad it's not always this way.

We hope you have a great week this week too!

Sunday, November 7, 2010

We made it to church today and stayed the whole time!

We are kinda tired because of the late night last night. The RHS band went to Auburn for a parade and performance and didn't get home until about 2:30am, and that is really 3:30am if we didn't change the time already. TOO TIRED!

Friday, November 5, 2010

midweek doctor visit

When Terry went to the doctor Monday we didn't remember to have him take his packet of things for the blood draw portion that we send to Seattle. We were just too sick to think. So, we had to go back in for that blood draw before Friday. We were feeling good enough to go Thursday morning so we headed in for what we thought would be a quick and easy visit, 10 minutes max.

Well, we got a surprise! They asked Terry how he was feeling and he honestly told them that he was feeling a little weak. They took more blood and we waited for results. Anne came in to make sure that he was okay, checking his eyes and mouth and searching for signs of GVHD. They took his vitals and weren't completely happy with that. Dr. Smith was called (because she is only in ML on Mondays) and even SCCA was called and it seemed to us that they were just all over-reacting. He's been weak before...a lot! He doesn't feel really good, but that too, has happened before.

After awhile they brought in a liter and a half of fluid for him so we sat there even longer, for a total of about 4 hours. Wow - we had only planned for 10 minutes.
We decided this would teach us to not forget that packet again huh!

Personally, I think he is still weak because he isn't completely over the illness he has had. I know just when I have a good few hours and think I have it beat, it attacks me again. The intense pain in my lower abdomen and back hit me again last night and this morning. I had my flu shot earlier this year, what's up with that?!?!?! Maybe the flu shot just makes the flu harder when you finally get it. Maybe it's not the flu at all.

Here it is Nov. 5th and I've just noticed I haven't changed my birthday calendar. Hopefully you are on schedule better than I am. At least I noticed it before daylight savings time!!!!! That's Sunday, right?

Hope you have a great day! We are so lucky - we get Auger today while Thomas and Dana are in TriCities. And we are loving him! Happy anniversary to them!

Monday, November 1, 2010

Weekend Wakeup!

I would have posted earlier this weekend, but just didn't feel up to it. Sorry! I'm up a bit more now, enough to sit at the computer for a few minutes.

Trick or Treaters were few, but our favorite trick or treater came. He saw and he took what his little hands could hold. He went back a time or two and eventually even brought the whole bucket back with him. He was so cute!





We found an old helmet we had and tried it on him. Of course he was so very entertaining for us. He is just so very cute, isn't he!


He is just so fun to watch...and watch...and watch...


The Latimer's brought us an apple pie - a great treat! Once the kids learned they could eat it, it was gone!

The trick came in the form of the flu. Terry has had something all week, Chase got something too, and then I, Elaine got it. Connor may have had a mild form of it too. I hope it goes away soon.

Terry had Chase take him to the doctor today because I was unable to go. The check up went well and we are quite pleased with the lab results. I'm not complaining, but I'm wondering how it got so good so soon.
WBC - 4.2
RBC - 2.92
Neutrophils - 3.0
and the liver enzymes are looking much better too.
Thanks for the prayers! I guess I do know how they got so good so soon!
His platelets are a bit low, at 78, but we don't foresee any operations in his near future, so that shouldn't be a problem.

I was feeling so rotten Sunday that I couldn't do much, so wrote a very small email to Michael. I felt so bad because I couldn't spend much time. But his reply was wonderful. He didn't hold it against me and make his a short one too. He did however, tell us about his "death call". I knew exactly what he was talking about. I'm not sure I've ever heard it called that, but it's possible, since he is our fifth missionary. He is close enough to the end of his mission that they have his release date already figured out. Should I share it with you? Why not - May 27th. We should get his flight itinerary in the mail to know the particulars, but there is still time for that. But, that is this coming year!!!!! We'll be ready! He'll have mixed emotions! We don't mind - that is actually a good thing. He still has a lot to do, so we won't get "trunky" for him. We'll move on...

hopefully to better health!

Have a great day!

Thursday, October 28, 2010

Terry is doing even better today!
YEA!
We hope it keeps going this way!

Wednesday, October 27, 2010

You Might Like To Know

Terry is feeling some better today. He is able to eat and get up and around better. Not all of the problems are gone, of course, but they seem more manageable or less constant. Hopefully he's on the mend and doesn't have a turn for the worse.

Chicken noodle soup is getting kinda old! :) We are still glad we have it!

Tuesday, October 26, 2010

FYI

Today is worse than crummy!
Terry had a terrible night and day so far.
Up to the bathroom all night and then finally vomited this afternoon. When he got done making a mess of things (throwing up) he said something like, "good, now maybe I can feel better!" I hope so too, because it made me sick trying to clean it up. :) The things we do for love! I'm over it, so long as it doesn't happen again real soon. :)
The doctors think that his diarrhea and nausea is due to the GVHD, so they prescribed some new meds for him. I had to run to ML to get them. I didn't want to leave Terry alone, so Chase stayed here with him. It was one of the fastest trips to town I've ever made. Luckily, Terry was okay while I was gone.
Funny thing though - how is he going to take these meds when he can't eat or drink anything without feeling icky? When he throws up after taking meds, does he have to take them again? Too bad these meds don't all come in a syringe that I can eject into his Hickman line. Of course, that makes him feel strange too!
Better days ahead!?*@!^:? Who knows when! Hopefully soon!

Monday, October 25, 2010

Monday Medical Report

Today's visit was interesting.
The first thing we learned was that Terry was going straight to the chemo chair for his blood draw and then for fluids. I suppose letting him go last week knowing his WBC and Neutrophils were critical had them on high alert this week. So when he mentioned that he wasn't feeling really terrific they were buzzing around and getting things done. He had at least 1 1/2 liters of fluid today, and another small IV bag of meds to help the nausea. So we felt like we were doing chemo again. Not really, but it was odd.
We got the lab results back and found that his critical counts have improved. They are now in the low zone instead of critical. Critical is not a good place to be for any reason, so that's good news, even if they are not in the normal zone.
Other counts are concerning because they are so high. They have to do with the liver and doctors are wondering if it might be due to some GVHD. I guess we are playing the waiting game again ... or still, to know what to do there.
He still felt crummy today. It is sometimes hard to describe how one feels, and to know why one feels like they do. He didn't do much at all today because he had no energy to do it with and he does still have some nausea. So much for medicine to help that problem.
He hasn't had muscle cramps much this week. He has noticed that the muscle cramps happen more when he works more, and because he was so critically low this last week he couldn't do as much as he would have normally, therefore, no cramps.
Normal is a strange word anymore! Just thought I'd mention that.

Saturday, October 23, 2010

HAPPY BIRTHDAY!

Happy Birthday Bryan!
We love you!

Friday, October 22, 2010

"What makes us special is the signature of God in our lives" - Max Lucado

"We are shaped and fashioned by what we love"
- Goethe

"Since 'God is love' the closer we approach Him, the more profoundly we experience love."
- Dieter F. Uchtdorf

Monday, October 18, 2010

Another Medical Report!

Today is T-180, and we just got back from our second appointment in Moses Lake. Things are going well except for the blood counts. I know - that is a big part of things! Terry is feeling more fatigued and we've seen on paper today a part of why that might be.
His WBC and Neutrophils are critically low, at 1.5 and .3, which means stay out of public places, wash and peel (as applicable) everything you eat, everyone stay as clean and healthy as possible, etc.
There is good news. Terry is taking fewer meds, and can even cut back on the minerals, like magnesium and calcium he has had to take. Fewer is always better, especially since there is such a handful every morning and evening, and even a few in the afternoon. None of them however, will help with his white blood counts.
We always get anxious for the next weeks reports, even right after having this weeks. Silly huh!
Well, I'm going to get up and clean something ... anything! Just trying to do some good! :)
Have a great day!

Saturday, October 16, 2010

HAPPY BIRTHDAY!

Happy Birthday to Darryl!
We love you!

Monday, October 11, 2010

Appointment Report!

We had our first visit to Dr. Julie Smith since our return home. It was a pleasant reunion, almost a welcome home type experience. Our "old friends" were there to greet us and help us thru our visit. We also met a new friend and found her to be a delightful addition to the staff.

We didn't really learn much. That's not too unusual though. We had blood work after the visit so we didn't get to discuss it, but they faxed us the results. Next week we'll have the lab work done before the visit so we can talk about it.

Terry's white blood counts are low. That makes me a bit nervous. His reds are low too, but we are hoping that changes now that he has been off the Valganciclovir for a couple days. Platelets are still low, glucose is high, creatinine is low.... We are anxious to see how the numbers might change in the next couple weeks of follow up lab work.

It's good to be back!

HAPPY BIRTHDAY!

Happy Birthday to Mary Ann!
We love you!

Saturday, October 9, 2010

Happy Saturday!

The kids and I spent a few hours pulling nightshade out of the bean field yesterday. It was a bit tricky because we are a little late at getting it done and they are drying out, which makes them not as easy to see or pull out of the rows.

When we got done we went to Wenatchee for dinner and shopping. It was a fun few hours there too. We had a car full of products from Costco and the kids helped bring them into the house and put them all away before going to bed. It was good to have it all in it's proper place.

My body was sore by the time I went to bed, but my spirits were high. I really felt good.

Everyone was cheerful and the day was really a good one, even with difficulties and hardships. Thinking back on what made this day so good made me realize that I have had very few like it the last several months. I haven't spent so much time with the kids for a long time and most everything I did was a service the whole day long.

I love being in situations where we can talk together and enjoy each others company. During our weeding we talked about (among other things) the "stupid cow" story Mervyn B. Arnold shared during conference. We could really relate to it and we loved it's message. The fence was there to protect the cow and keep her away from dangers, but she kept reaching over until she had foolishly broken thru the fence and was on the other side. She kept eating the wheat until she bloated and died. Like this cow, we too have a fence set up for our own good. We have commandments and rules to protect us and keep us from dangers. They are protective, not restrictive. Contrary to popular demand, the grass is never greener on the other side of the fence!

All of the talks during conference were great. Many talked of making wise decisions and many talked of seeking the companionship of the Holy Ghost. Certainly these things can save us from the dangers around us and the evils that tempt us so that we can be safe and protected. We don't want to be like the stupid cow!

Speaking of rules - (Elder Arnold did refer to his parents rules)- Larry R Lawrence spoke of courageous parenting. He said, "What the world really needs is courageous parenting from mothers and fathers who are not afraid to speak up and take a stand." He also said, "There are no perfect parents and no easy answers, but there are principles of truth that we can rely on."

Both of these talks were inspiring. But there were many others that were just as inspiring. I just thought of these because of our experience yesterday, talking about the stupid cow. I look forward to other such experiences with my children and hope to be a good parent, even though I am far from being a perfect parent. I am grateful for the principles of truth that are here for us.

I just wanted to say hello today, and look what it turned into!

Monday, October 4, 2010

The End!

Today was our last day at SCCA. We had our summary visit as planned and said our thank yous and good-byes. It was a strange feeling to walk out of the clinic not expecting to return until we go back for our yearly check up. Unless something comes up that we are now unaware of we plan to spend more time with our local oncologist, Dr. Julie Smith.
We received a bundle of info to take to her and have been informed of the things that we need to make sure get done, especially in the way of blood work. We know that we will be in good hands. We like our oncologist and look forward to seeing her again. The nurse we have worked with most in ML has already sent us a hand written letter to let us know that she looks forward to our return, offered her help in any way, and wished us well. We haven't received many of those, if any, and it touched our hearts. We get kinda connected to these people and they hold a special place in our hearts. After all, where would we be without them?!
Terry still has his Hickman line. He is tapering off some meds, will stop another this weekend, and we will be watching for GVHD symptoms. The medicine he stops taking Friday should help his blood counts to rise again, which should give him some more energy and fewer headaches. They will leave the line in for awhile until they are assured that he is stable.

We do get to leave SCCA's constant care, but they are still quite connected. They will work closely with our doctor and we will personally send some blood samples to them weekly. We have a number to call them if we need them and doctors will continue to "talk about us" for quite some time.

We have to be careful. He is released from the clinic, but not given permission to get right back into life as he knew it before. I promise to try to keep him away from the work and the dirt, but try is far from actually doing. This may actually prove to him that I do not always get what I want or what I ask for :).

Here's hoping and praying that we don't do anything that sets us back!

Sunday, October 3, 2010

General Conference Weekend

This has been a great weekend, filled with many wonderful and inspiring messages. We were truly uplifted.
I don't want to re-write the messages so I'm not going to list my favorite stories or thoughts, though there are many, but I'll just add one quote from Elder Richard G Scott's message:

"We become what we want to be by constantly being what we want to become."

Now I look forward to the printed form when it comes out in the Ensign next month so I can read and mark it up, and remind myself of the ways I need to improve.

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

Pondering!

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

RE-CAP

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!

Happy Birthday to Auger!
We love you!

Wednesday, September 15, 2010

HAPPY BIRTHDAY!

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!

Happy Birthday to LeeAnn!
We love you!

Tuesday, September 7, 2010

HAPPY BIRTHDAY!

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!

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.

FYI

MEDICAL MADNESS:
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.

MISSION LIFE:
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.

Monday, August 30, 2010

Better Late Than Never?

We are home! Arrived Saturday about ... maybe 1:00pm. We unloaded the car and had too much to put away. :) We stuffed things in rooms to take care of later. It's going to require some deep cleaning to get some of these things back in place. I'm not quite ready for that, but someday I'll start gutting rooms before I finally put things away the right way.

It will take some time trying to get the two schedules fit together right too. Medicines and IV's require a specific time schedule and so do our children and their activities and just daily routine in general. So we'll do our best to try to fit in again.

I tried to have breakfast ready by 6:30am this morning, but was a little over 15 minutes late with it. No major problem, but somehow the second Spanish tortilla got burned, even though I was trying to hurry them off the stove. How does that happen? Too much to do I guess, and too little experience of late with so many different tasks at hand. Things seem to be telling me: "Ready or not, here we come!"

It was wonderful to attend church yesterday, and we had a bonus in the evening with a seminary fireside. It was a very nice meeting - all were. It was good to see our ward/church family and it is great to be home with our children. Terry gave a couple father's blessings before bedtime and it has been awesome to have family scripture and prayer with our kids again.

Thanks to all who have helped them and us thru the last 5 months (and more). Yip, it was about 1 day short of 5 months that we were living in Seattle. WOW! No wonder it seems like such a tricky transition. We are here and going to give it all we've got.

Today will be filled with cleaning, laundry, and canning a few jars of peaches as I continue to take care of my wonderful husband. He doesn't complain much, so I'm guessing at these things - what I sense it that this infusion is causing some headaches, confusion, and just all around icky feeling and he is a bit weak. Better days ahead...

Saturday, August 28, 2010

HAPPY BIRTHDAY!

Happy Birthday to Dana!
We love you!

Friday, August 27, 2010

Today's News:

We have more news, though the final pathology reports may not be in, we have been told that Terry does not have GVHD, but does have CMV. So, we didn't get to go home today. We cleaned and packed, but will have to spend one more night here.

We got called back into the clinic this afternoon for an infusion. It was good to learn more news, but it cut our visit with Ellen and Wayne short - but short was still great.

The infusion was medication to help clear up the problem with the CMV. He will have to have two infusions a day for about a week. This is something I can do because he still has his Hickman Line. It is considered a form of chemo, so it's a bit tricky trying to dispose of everything, but we are coming back every Tuesday so it will turn out okay.

Coram will bring our supplies tonight and we will let Terry rest and have a good night, then we will drive home tomorrow. We won't be released from SCCA, but we will only have an appointment on Tuesdays until they decide differently. (Now that I've said that we will get a call tonight telling us something completely different :)

For now, our plans are to go home and return to Seattle every Tuesday for a few weeks. We are lucky to live only a couple hours away or we'd be staying here longer. Doctor says no working and buy a new pickup :) I encouraged the last part :) We will continue to share info as we get it. It's not over yet!

Thursday, August 26, 2010

Um!

We have nothing to say...
except this:

If you don't want to be miss informed, then don't ask us any questions!

We don't know much yet, or still!

Tuesday, August 24, 2010

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.

Saturday, August 21, 2010

What next?

We picked up our schedule for next week and we found appointments everyday thru Friday. There is no departure day listed, but they are pulling the Hickman line out on Wednesday. That is good news since they do that just a few days before we leave.
We won't make it home before school starts, but it shouldn't be too long after that. But then just when we think we know something it changes, so we aren't saying anything's for sure - we just don't know for sure. Maybe the doctors don't either!
We'll try to keep you posted.

Thursday, August 19, 2010

Daily Gems!

I get an email titled "Daily Gems" that had a great message for our circumstances. Just thought I'd share it since it relates to my post yesterday. Here it is:

Sent to Earth to Endure

Posted: 19 Aug 2010 12:00 AM PDT

“Do not expect to be free entirely from trouble and disappointment and pain and discouragement, for these are the things that we were sent to earth to endure. “The scriptures promise, ‘There hath no temptation taken you but such as is common to man: but God is faithful, who will not suffer you to be tempted above that ye are able; but will with the temptation also make a way to escape, that ye may be able to bear it’ (1 Corinthians 10:13). “The Savior said, ‘Draw near unto me and I will draw near unto you; seek me diligently and ye shall find me’ (D&C 88:63).”
Boyd K. Packer, “Prayer and Promptings,” Ensign, Nov. 2009, 46

Wednesday, August 18, 2010

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.)

Monday, August 16, 2010

Today's Appointments

Blood draw was easy today, as always, and Terry did have a bone marrow aspiration and biopsy - both hips. It was done on the 6th floor because they didn't have time for him on the 2nd floor. It was not a pleasant procedure - actually the worst yet. We have heard that it gets harder each time and this time certainly proves that. This was not a planned procedure as far as the normal protocol, but it was necessary to figure out why Terry's counts are low.
We hope to have some answers on Wednesday after our clinic appointment.

We have this week's agenda and there is no scheduled departure clinic, so that confirms that we will remain a little longer. Maybe we'll get the kids here for some school shopping, since school starts the 26th. This long distance parenting is kinda challenging. Rest assured we have no intentions of making this our way of life forever. Hard as it has been though, we have had some enjoyable times and we do have some happy memories to last a life time, and we are grateful for those.

Terry has told the doctors that he is ready to give them his two week notice. :) They all laugh with him and one mentioned that with the economy what it is, it won't hurt him to loose his job. :)

A Taste of Home

We got a taste of home last week, and it's lingering in our hearts.

Terry and I missed the Rodeback Family Reunion this last weekend. His counts are way low and people there were getting sick, so we stayed away. We did hear that they had a great time, in spite of the flu going around.
Chase, BrittanyJo, and Anthony left the reception Tuesday night with my mom and dad so they could attend the reunion. Thomas and Dana took Connor with them on Friday so they could attend. They are all home now.

Skyler and Lisa are home now too, and preparing for the exciting activity of opening up their wedding gifts before heading to their new home in Rexburg.

There is so much excitement still going on, that we wish we were home to share in it all, but we really need to help the doctors get this figured out. We are not sure why these little things continue to spring up and surprise everyone, but we seem to be keeping the doctors busy at trying to learn and make good decisions concerning Terry's health.

After being home this time we were anxious to get back to Seattle so that we could get things taken care of and get home for good, as soon as we could. The doctors were hoping for the 21st, but that can only happen if things turn out better than they are right now.

Now that we are back in Seattle, we are missing the fun activities and wishing we were home again. We had a taste of home and we love it. We have also had a taste of good health and we love it. Someday, hopefully in the near future, we will have them both, together again! We have something to keep us going, so we are not loosing hope, just getting a bit delayed.

Today, day 117, we head in for an early blood draw and another bone marrow biopsy. At least that is what they are calling it, but the instructions were a bit confusing, so we'll see if it is something different. We kinda hope it is, cause those bone marrow biopsy/aspirations are not fun. They are looking for something to blame the low counts on. We'll let you know when we learn something.

Our medical mission continues..., and I'm still loving my companion! No transfers here!

Sunday, August 15, 2010

Happy Birthday!

Ethan Rex Hebdon

Our newest grandson, born to Gregory and Adena at 4:37 this morning.
7 lbs, 14 oz.
19 1/2 inches tall.

Saturday, August 14, 2010

The Wedding! 8/10/10

Here are some photo of the wedding day. Many thanks to Michelle Quinn for sharing with us!!!


Friday, August 13, 2010

HAPPY BIRTHDAY!

Happy Birthday to Thomas!
We love you!

Did you know?
After having our first two on their due dates, it was pretty tough to have Thomas a couple weeks past his due date. They induced me and when he was born they decided that he was actually early. They had it wrong! Can you believe that?!?!? :)

Thursday, August 12, 2010

Wedding & Back to Seattle again!

The wedding was wonderful!
The luncheon was great, thanks to our "angels in the kitchen".
The reception was awesome too!
The day was long, but oh so worth it! Terry did get kinda tired, but he has no regrets. He was where he needed and wanted to be.
Forgive me for not posting photos, I have none with me, so I'm soliciting photos if you have any from that beautiful day that you would like to send to my email address.
Skyler and Lisa make a beautiful couple, we really do wish to share some photos with everyone. We wish them them a long and successful lifetime of love and happiness.

It was good to see old family and friends, and it was good to meet new family and friends. We look forward to more good times ahead.

Our clinic visit started out pretty good, and we were thinking we'd sneak away to the family reunion, but by the time we were done, we realized we weren't going very far. They got the lab work back and are finding some numbers dropping.
WBC - 2.45
Hematocrit - 34
Platelets - 110
Neutrophils - 0.5
The kidneys look great but the liver isn't quite as good. They will still be watching that.

New meds started, and other meds tweaked a bit. They sent Terry for more lab work to check the chimerisms and will have results tomorrow evening. He may have to have a daily blood draw for the next few days.

Good news is that the PTLD / EBV on the adrenal gland is still gone and the x-ray to show the fluid in the lung cavity looked good. What next? We aren't sure, but we are sure that we are in good hands.

Thanks again to all of our family and friends who helped make our visit home such a great one!

HAPPY BIRTHDAY!

Happy Birthday to Tawny!
We love you!

Sunday, August 8, 2010

We Are Home!

Just thought we should let you know!

Medical Update:
The fluid from Terry's chest is not likely an infection, but they continued to test it. Terry did begin to feel a bit better the next day after the tap and though he has not regained all the energy he used to have, it is improving slightly.
The doctors were concerned at our leaving and asked that we be very careful and "don't get a cold". We really don't want to cause another concern, and are grateful that we were still there in Seattle under their good care when these other things came up. They really have a great facility and things run quite smoothly considering everything that they do.

WBC - 3.48
Hematocrit - 35
Platelets - 97
Neutrophils - 1.85

Oh - the liver has slightly improved, so the tap must have been a good thing for that in itself. We take any improvement we can get, even slight!!!

They have changed some meds and hope that we return in good condition :)

We plan to have a great time and return for the final stretch.
We hope that your days are good too!

Thursday, August 5, 2010

Tap Time!

We went to the U of Wa Medical Center today and they took out a liter of fluid from Terry's chest. We don't know anymore about it than that. We hope to know something more tomorrow - it's another big day with lotsa visits.

Wednesday, August 4, 2010

Some good news for day 105:

Terry got a call today telling him that the EBV issue is resolved. His body fought it off on it's own. That's good blood from Dennis!!!!!
We still have other things going on - to U of Wa Medical Center tomorrow for a "tap" or biopsy (needle style) to test the fluid in his chest. GI doctor visit Friday. Friday is also the day we will learn when we can come home for the wedding.

HAPPY BIRTHDAY!

Happy Birthday to Garry!
We love you!

Tuesday, August 3, 2010

Day 104

Skyler, Chase, Connor, BrittanyJo, and Anthony came to visit us Sunday afternoon. It was good to see them again.
Monday was a full day. We had a barber shop party in the morning. Chase, Connor and Terry got hair cuts. The barber shop was this tiny kitchen and the barber was me, of course. That afternoon we walked to Pike Market, checked out the shops, the fish throw, the pig, and the gum wall, then stopped for an icecream cone on our walk home. Some of us went to Safeway, and then we made pizza for dinner, and the day was done.




We had a good breakfast Tuesday morning and the 3 older boys loaded up and went home. BrittanyJo and Anthony stayed with us and we had a long day at the clinic. We came home for a late lunch/almost dinner and played games, put together a puzzle and wrapped ribbon around water bottles for the wedding luncheon.

We went into our appointments thinking that the EBV or mass on Terry's adrenal gland was the main concern and left the appointment with a different view.
It seemed that the doctors were less concerned about the EBV after finding that Dennis has had that virus sometime in his life. Their thought is that lowering the immune suppressant medicine will allow Terry's body to fight it on it's own, so we were just going to watch it closely and try to ride it out.
The new concern seemed to be the liver, as it continues to worsen slightly with each new set of labs. Another concern is the discomfort and pain that Terry is having in his side. His energy level is declining too. They added a visit to the GI doctors to our schedule.
These newer concerns must be analyzed and controlled before we can leave. They had Terry get a chest x-ray after the doctor visit today so they could check things out again. We received a call last night telling us that they will be adding more tests and appointments to our schedule this week, due to the findings of the x-ray. There is more fluid in his chest and they must correct that.
They are aware of our upcoming wedding and want to let us go, but must have this under control before they can allow it. If it is a form of GVHD they must handle it sooner rather than later. They are still working to get thing taken care of by the end of this week so we can go home for a few days. We'll see.
It seemed that they were sympathetic to the issues we were having and felt bad that they could not send us home already. We continue to hope for the best, and be able to return to our home to be with family for this special occasion.
The bad new is that we will not be home for the family reunion next weekend. We will be back here to Seattle so these awesome doctors can care for this awesome man.

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!

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

WOW!
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. :)