Friday, April 29, 2011

Happy Day!

Happy Birthday to Estella!

Happy Day!

Today is our house birthday - we moved in 19 years ago.
Having just spent 4 days in Seattle and being reminded of our 5 months away from home last year at this time,
I am feeling ever so grateful for our house and the comforts of life that we enjoy. And especially for the family that makes a house a home.

Thursday, April 28, 2011

A Long Thursday

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

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

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

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

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

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

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

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

Wednesday, April 27, 2011

Wednesday at SCCA

Today's visit included just one appointment with radiology for a CT Scan. We had to be there at 8:00am for the contrast and then the scan was at 9:30.
The contrast and dye they give him make him feel quite icky (I've gotta find a better word, but since I don't feel the symptoms I can't bring up the right words.)

While he was in getting the scan done I went to the lab to get a photo of the covers BrittanyJo made. Here are just a few of them on the counter in the lab where patients are able to take them as they wish. I did notice that there were a few covers that were there yesterday and not today, and a few that were put out there that weren't there yesterday, so people are taking them and putting them to use. Good job BJo!



We came back to the House and had an early lunch. Terry took a nap and is in hopes of feeling a bit better soon.

Happy Day!

Happy Birthday to Brian L.

Tuesday, April 26, 2011

Tuesday appointments:

Blood draw at 7:45 - only 5 vials today. I forgot to mention in our Monday post that we gave the SCCA lab some "cases" that BrittanyJo made for the patients. They are cloth pillow case type coverings for the Hickman line. She made a couple hundred in various colors and designs and we dropped them off yesterday. Today we were excited to see several sitting out on the counter. The gal that helped us today is the gal we gave them to yesterday and the first things she said was that they were going like hotcakes. I'll try to take my camera tomorrow to get a photo - I can't believe I haven't already done that.

Next up was Pulmonary Function / breathing tests to check the health of Terry's lungs.
Here he was given certain breathing instructions as he blew into a tube - massive deep breath in...blow hard and quick...hold, breath in and out in short puffs, massive deep breaths in with a moderate speed out...drive it down slowly, etc. The lady that worked with us there said while waiting for her computer to get ready for the next breath; "always a pleasure working with Terry". This was the third time he had participated in this testing (once when we first arrived at SCCA before transplant, one before leaving after transplant, and today). He seems to be in the normal range - where he has been all along, so there is not too much of a change.

We saw the GI docs to visit about the liver and stomach issues. These GI doctors are in agreement that there is nothing they need to do at this time concerning the liver.

A Research Protocol was our next appointment. This was volunteer work they asked Terry to participate in for a GVHD study. They need some comparisons of those who do and those who do not have GVHD. This test included a grip test, a blowing test, a walking test and a several page questionnaire he will fill out.

Then off to radiology for a Dexa Axial Skeleton Test / bone density test. (Never had one of these before).

After waiting an hour to pick up a refill at the pharmacy we headed back to the House for lunch.

Then off to another part of town - yes we had to drive it - for an Ophthalmology appointment. I didn't want to drive anywhere - I still don't like big city driving. The doctor said that there are no concerns and his eyes look good.

Off to Safeway, a familiar store to us now. We got a few groceries and headed back to the House.

It still seems like a full day but when all of the appointments are in the same building it makes it much easier. They should have their ophthalmologist there too!!! Oh Well! It's a done deal now and we passed the test. Now, on to tomorrow...

Monday, April 25, 2011

SCCA LTFU Visit

Our itinerary for today was something like this:

-3:00am Got up and finished packing.

-4:00am Left home / drove to SCCA.

-7:30am Registration at SCCA.

-7:45am (Fasting / No breakfast) Blood Draw
They took 19 / nineteen vials worth of blood!
The first reports came back on 9 pages / the first page was just a cover sheet.
WBC = 1.36
RBC = 3.45
Platelets = 58
Neutrophils = .62
Sodium, Potassium, Glucose and Protein were all normal today.
Calcium was slightly low and ALT, AST were both still high, though slightly lower than last week.

-8:30 Evaluation (almost 2 1/2 hours long)
First with the nurse, Joanne Quinn (no known relationship to our daughter-in-law) but a great lady whom we really appreciate.
Then with our Primary Provider, Carina Moravec, another great lady.
Then with Doctor Hans Kiem, he's great too, but my goodness we sat through a third review of the same questions and concerns and tests, etc. Dr. Kiem had a student following him for our visit - a gal from Tokyo Japan.
They are very thorough here.

-11:00 Ate at the Red Brick Bistro on the 2nd floor / SCCA.

-12:00 Checked in for the Bone Marrow Procedure, received oral sedation (Ativan and a lollipop / fentanyl)Then had the biopsy - yeah! only one side. But she did have to take a skin sample from his upper arm today, which adds slightly to the discomfort.

-2:00 Back up to the 6th floor for a neupogin shot to help stimulate the white blood cells or neutrophils.

Overall they feel that things look good and are excited about no GVHD, which allowed us to cancel the Oral exam, the Nutrition consult, the Physical and Occupational Therapy and even the Vaccine appointments that were scattered throughout the next three days. Not to worry ... we still have appointments, even an added appointment and blood draw, so we aren't completely free.

-4:00 Checked into our room, ate dinner (leftover pulled pork sandwiches we brought from yesterdays lunch), and are now going to just relax and let Terry be still. We are both very sleepy and glad to have today's visits over. (My mind is muddled due to lack of sleep :) so I hope this made sense!)

Love to all!!!

Sunday, April 24, 2011

Easter Sunday

A great day!
The Easter bunny came!
Church was wonderful ...
Dinner guests were awesome ... We love family and friends!
We met Brother and Sister Lowe - they served in Japan / with Michael - great people ... extra bonus for the day!
Christ is the reason for this season! We Love Him! We are grateful for His sacrifice on our behalf - for each and everyone of us that accept and follow Him.

Happy Easter

We wish everyone a happy Easter today!
What a special day! My heart is full of love and gratitude for our Savior.

I have been wanting to add one of Terry's poems but remembered that I did add it in our 2009 Easter post (check the archives), so here is one that he wrote in 1988 after hearing Sister Killian share her testimony.

A SWELL BROTHER

I've got a brother named Jesus
And I'm His brother too.
He helps me in so many ways
And teaches me what to do.

He's my oldest brother
A perfect example to me.
He says that if I follow him
Happy I will be.

He's got some books He lets me read
Which tell about his plan
To save each one from the fall
Redeeming all of man.

He's got lots of work He talks about
Many things to achieve.
He says there's a work for all to do
Who listen and believe.

He doesn't live with us just now
But I still know He's there.
I can feel His love for me
And am blessed by His good care.

Maybe you know my brother, Jesus.
Perhaps you've felt His peace.
He promised when He comes again
Wickedness will cease.

Well for now I'll try my best
To follow and obey,
So when I see Him face to face
Proudly He can say...

"Well done thou good and faithful servant,
You sure did pass your test.
Now you and I, let's go together
And help out all the rest."

I sure have a swell brother!

Saturday, April 23, 2011

Michael is Home!

Oh Happy Day!
Michael's plane was right on time. We were just talking about how we should hear the arrival over the intercom anytime and noticed people were coming through the gate just in time to look through the glass and see Michael coming in. He looks good!

We hugged & visited for awhile, picked up his luggage, drove to Othello, purchased a few groceries, met with President Leavitt to have him released, went out to eat, and came home to visit some more and see a couple souvenirs. It's so good to have him home.













Now we will enjoy his company for a couple more days, preparing for Easter Sunday - the day he will speak in Sacrament Meeting. It starts at 11:30 if you would like to be there!

There is never a good time for a camera to act up - whenever you want to use it it needs to be working - but again, it was not working quite right. Sorry the photos are so bad!

Friday, April 22, 2011

!!!!!!!!

Elder Michael James Hebdon returns today!
Those in Japan will surely miss him, but we are ever so happy!

We'll add more here when the day is done!

Thursday, April 21, 2011

He's on the plane!

According to our Japan clock in the right column of this blog and the travel info we received for Michael ... MICHAEL IS ON THE PLANE ... heading out of Fukuoka to Tokyo.

It is a flight lasting less than 2 hours, but he waits around for the next flight to Seattle. I'm not sure what he will be doing for so many hours, but we'll be thinking of him.

He'll get on the plane this evening (his this evening - which is 22 April) and fly through the night, eventually ending up in Pasco tomorrow afternoon (our tomorrow afternoon - which is 22 April).

Happy T-Day!

One year ago today, Terry received his bone marrow transplant. This is day T-365!
We don't have a lot of answers yet, but we are still very grateful for the doctors and nurses and for everyone who blessed our lives and continues to do so. A big THANKS to Dennis (Terry's donor) and Mary Ann!

We head to Seattle early Monday morning for four days full of tests and evaluations. We will continue to report as we travel through those days together.

This thought of leaving our family again reminds us of last year, but we are so thankful that it will only be for a few days this time rather than several months. We leave family that just arrived and that will be heading out soon, but even though the timing is rough, we are anxious to get some reports and learn something that might help us understand how things are doing on the inside, concerning Terry's health.

They only have us scheduled for four days this time, but we had the hardest time trying to leave that place last year. We finally just escaped. Will they really let us leave Thursday night??? I guess we'll see!

Tuesday, April 19, 2011

Coming Up!

Elder Michael James Hebdon returns home, from his Japan Fukuoka mission on Friday and will speak in our Easter Sacrament Meeting - it starts at 11:30 if you'd like to be there...we'd love to see you.

We'll be celebrating a few different things that day - Easter, of course; Michael's return; and Chase's call to Nauvoo (as a Young Performing Missionary in the Nauvoo Brass Band).

We feel so lucky to have these opportunities!

Monday, April 18, 2011

Medical Update

I could just write "DITTO!" for Terry's report today since it is much like last week.
Everything is considered maintaining.
Counts that are too high are still too high - like the liver related counts.
Counts that are too low are still too low - like the blood counts and the Platelets (at 75 today, and that is up a little from last week).
Glucose is normal, as is the Calcium and Potassium.

The good news is that we have a week off from appointments after our week full of appointments (at SCCA all day on the 25th, 26th, 27, and 28th).

Saturday, April 16, 2011

Happy Day!

Happy Birthday to Sherri!

Happy Day!

Happy Birthday Shawna!

Friday, April 15, 2011

Happy Day!

Happy Birthday David!

Wednesday, April 13, 2011

Happy Day!

Happy Birthday to Chase!

Tuesday, April 12, 2011

Happy Day!

Happy Birthday to Jennifer!

Monday, April 11, 2011

Today's Counts Are In

Terry's lab results for today differ only by a very small amount from last week (some up - some down) so it feels unnecessary to write them all out again.

A while ago I had one news channel on all day to hear bits and pieces as I walked by or worked nearby and would hear the same news over and over again and it got kind of old and even annoying, especially since the news alerts were the news alerts I had just heard by a different anchor person. I'm trying to avoid that here, especially since this news is by the same anchor person.

Maybe the problem is that I am annoyed even now, at the unchanging and imperfect conditions. Maybe it's because I just can't top the news of the last post! :) Either way - Sorry! That's all I've got for now. I do wish I had better news, but at least it's not worse news . . . just the same ole stuff!

I guess what it really means is that Terry is maintaining - maybe not in an area we'd like him to be, but in an area familiar to his body. :)

Have a good one! Hey, for that matter, have a good two, or three, or .... In keeping with my thought for the day I'm trying to decide if numbers really matter at all. :)

Okay, enough negativism (is that even a word?). I'm really not having a hard day - really! Hey, I can check this off my list of things to do today - so that's good! One more thing down - ???? to go. Who's counting . . . right! (Oh, those numbers!)

Michael's Email

We received Michael's email this morning, which tells us he is coming home. We received his flight itinerary on Saturday, so we kinda had a heads up about it. He will be coming home on the 22nd of this month (April), and we are SO EXCITED!
We are all convinced and assured that this is the right thing to do and we are so happy for him.
Michael mentioned in his email that he is not "coming home early", just on a "different schedule". This might sound a bit like a play on words, but it is interesting to note that it does seem to infuse a different meaning into our minds, and it is a more correct meaning.
He also mentioned that he felt an earthquake one evening around 10:00 as he was sitting at his desk reading Jesus The Christ. His chair moved a little, ending up closer to the wall, and his clothes that were hanging in the closet were swaying. No damage - just a cool new experience.

As a side note: I was thinking about all of the things taking place in our lives right now and some that have in the past years and felt so grateful for the fact that many of them are because we are members of The Church of Jesus Christ of Latter Day Saints and because our lives are centered around Christ. I am so thankful for these wonderful blessings that our loving Heavenly Father sends our way.

I continue to believe that Life is Good!

And one more thing - Chase is home! We traveled thru rain and snow to get him, but we returned safely and are happy to have him here with us again. Our family will go from 5 to 7 again in just a couple weeks. Just when I thought I was getting my meals amounts figured out! :) It's worth it!

Happy Day to all!

Thursday, April 7, 2011

Part Two of Can't Sleep

Didn't know there were two parts, but if you read this one first it might be confusing, so go to the next post down first.

I should have added that we will know more about Michael when he writes to us on Monday - his Monday.

I got some cleaning done and then a little bit of reading, until 1:06 this morning. I think I used my time wisely! :)

Thinking about using time wisely makes me think of the Mission President (MTC and Japan) who has to worry about all of these missionaries and if there is enough for all to do. They must not become idle, because Satan can wreak havoc with that.

Michael's choice options are both good options and that is usually the hardest type of choice to make. I am so thankful for a loving Father in Heaven who hears and answers our prayers and sends us peace and comfort along the way. It makes things so much easier to handle.

Wednesday, April 6, 2011

Can't Sleep!

If you notice the time on the post you might wonder why I am up so late. I'm two hours past my bedtime, but I can't seem to shut down. I tried, but it was unsuccessful, so I got up and finished cleaning my bathroom and decided to come turn on the computer and post a little something special.

While I was talking to Chase on my cell phone tonight the house phone rang, so Terry answered it. I could tell by the sound of his voice that he was happy to talk to the person on the other end, but didn't listen enough to figure out who - I had my own special caller on the other end of my line. Then after several minutes he told me he'd switch phones with me, and that it was Michael on the other end of his line. WOOHOO!

Michael has been asked if he would try to make the decision of coming home early or not. This is such a hard thing to ask, but he knows the proper steps and is presently pursuing that course. He is studying it out and praying about his decision. He wanted to know if we had any preferences.

WOW! What does a mom or a dad say to that?!?!?! Well, we said what any parent would say; "We'll pick you up tomorrow!" Okay, not really, we did however, tell him that we would accept and support any decision he made after praying about it and that we would pray for him too. We want him to feel good about his decision and we want him to do what the Lord would have him do. We will be happy either way! And that's the truth!

We are excited to have Chase home with us this weekend (or the beginning of next week). We've got some room preparations to do before these two young men of ours return. We've filled their spaces while we were putting in carpet and painting our bedroom and bathroom, but we think we can move back into our room this weekend.

These two phone calls are reason enough to keep me awake huh!?!?!?!

Monday, April 4, 2011

Medical Report

Terry's appointment was just the normal stuff.
Here are his lab results:

WBC = 2.9(L)
RBC = 3.5(L)
Platelets = 71(L)
Absolute Neutrophils = 1.4(L)
All of these are still low, but they have each gone up a bit from last week. Up a little on any of these was a good direction.

Another bit of good news is this:
Glucose checks in at a normal count of 88 - and we even had our traditional cake and ice cream for this birthday morning breakfast. However, that cake was a white cake with a sploosh topping. Sploosh is our term for pureed peaches. MMMMMMM GOOOD! And somewhat healthy.

Calcium and Potassium are in the normal ranges today and the ALT and AST are maintaining.
His Protein level is even slightly up, still not normal, but close.

Why do his numbers jump around so much? Why do we not see any change due to the Rituxan treatments? Why are we still at what seems like early stages almost a year later? Why don't we have any answers?
Can't answer any of those questions! :) So much still to learn I guess.

We picked up our mail on the way home which included a large packet and envelope full of info from Fred Hutch and SCCA containing our schedule for the last week of this month, a survey, and info to take to the doctor, comments from other patients about their progress, etc. We'll have a lot of reading and paper work to fill out in the next couple weeks. I think the Hutch has a paper mill somewhere because they really do use a lot of it. Hopefully our answers to their questions will help - somebody, somewhere, someday!

Happy Day!

Happy Birthday to Connor!


Because Connor purchased his own gifts Friday morning and has been using them already, and one gift ordered online and not coming for a few more days, he didn't have any gift to open this morning. So, I dug thru a little drawer of odds and ends that I have and found a great little gift to wrap for him this morning - a key chain snap pistol with a holster.

We have let the kids pick out their own gifts a few times and we all like that arrangement. Everybody is happy that way. I still like to surprise them most of the time, but when I don't know exactly what to get and don't want to have to hassle with returns and exchanges I take the more simple route.

Saturday, April 2, 2011

Watching General Conference

Anxious to watch and hear today's speakers. We always enjoy the messages given and look forward to finishing our spring break with such a great weekend event.

It was really sweet to see Auger so enthused about watching conference, but I'll have to admit that he didn't sit that way the whole time, and we really enjoyed watching him occasionally throughout the day too.
What a wonderful opportunity we have all been given to share in such a special time, listening to our Prophet and Apostles of God. We are blessed!

Friday, April 1, 2011

Quite Fun!

We had a fun night watching this movie. We thought it was refreshing not to have to suffer through any foul language or potty mouth jokes..., well, there was the guy in the diaper, but that didn't seem to offend me. :)



All thumbs up for Tangled! It was a fun addition to our Spring Break!

(Maybe I was just too tired to notice any major problems - I'll probably wonder why I missed "that" the next time I watch it.)