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 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


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 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 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 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.