Thursday, June 30, 2011

Odds and Ends to Catch Up

It's a long post, so keep reading...

Wednesday morning we received a wonderful email from a family who had visited Nauvoo. They sent us these photos. It was such a tender mercy. We are so thankful for their kindness. We will not be able to make our trip to Nauvoo this summer as originally planned and these photos have helped fill an empty spot in my heart.
Does it look to you like Chase has put on some weight? We were so happy to see him!

We made some strawberry jam a few days ago. We are surprised, but so glad to have enough berries on our plants to make jam. Homemade frozen strawberry jam is our favorite! This photo is of berries from this morning, only half what we got last picking. They are tiny because it's an old patch. The kids transplanted some for us last year while we were in Seattle and they have been big and beautiful. We continue to find reminders of the many things our children did for us while we were away. We are so grateful for our children, their spouses, and their children.

Thursday was a big day:
Thursday's infusion went well. We were there from 11:30 until 4:00, but the treatment was what they considered boring, because there were no problems - just the usual occasional blood pressure checks, IV additions, and pump changes. We really like the people in Wenatchee and appreciate their knowledge and their kindness towards us. We are grateful for these good people.

Most exciting news - this package arrived. We had been told it would arrive last Saturday and it didn't, so after a few phone calls and clearing up a mix up on the store's end, it came Thursday. YEAH! It has made two special people very happy,(and I know I'm happy!) but the happiness doesn't stop there.

The contents of the box was an engagement ring. Congratulations to Michael and Tawnee - yip! - we have a wedding coming up. You'll have to see the ring, it's much more beautiful than the photo shows.

Michael headed out the door to place that ring in the hands of the gal he loves. The wedding is set for August 5th! Michael is searching for housing..., Tawnee is deep into planning a reception..., So much to do!

That last bit of info means I've been busy working on Michael's scrapbooks. Some might wonder why they didn't get done last year when I was working on the scrapbooking in Seattle - well, I kept his for when he got home so he could help with any dates and info I needed. It's a time consuming project that I'm rushing to get done in time.

Terry's dad, Keith spent Saturday and Sunday in the hospital last weekend. He had a TIA/mini stroke. When we headed out to chemo Thursday we learned that he was on his way to the hospital again, and then learned that this time it's the real thing...a stroke...the big one. He is currently in the hospital unable to communicate and family is waiting to hear any doctor reports as they come.

Monday, June 27, 2011

New News!

Last weeks medical report told that we would be heading to SCCA, and todays report informs us that we will not be going that direction. After having talked Terry's case over with all the different specialists there, (and one whom we respect and trust a lot - Dr. Maloney), they decided that the DLI might have too many side affects for Terry, so they want to try another round of Rituxan before they give him a DLI (or maybe instead of?).

We can't decide if this is good or bad news, so we are considering it new news. It is par for the course, of course, since things seemed to change over and over again while we were there at SCCA last year. They are holding true to form. ;)

We like the fewer side affects, but we want to see improvement with what ever the treatment is. We are hoping for that improvement with the Rituxan which will start Thursday and he will have 4 weeks of once a week treatments. We'll wait awhile and retest flow cytometry/chimerisms and see what happened.

Today's labs:
WBC = 2.0(L)
RBC = 3.47(L)
Platelets = 65(L)
Neutrophils = 1.1(L)
Of course they are all low!!!!! We figured they would be because of how he has been feeling and the bruising that is still taking place.
He got another prescription for that cough that seems to persist. Will it ever leave? I sound like a child ... are we there yet? Except, I do know the answer to that - we are not there yet!!!!! We are on a winding, hilly, rocky pathway to there, but we are on the way to there. Sometimes it feels like we don't know where there is, but we are on the path, so someday we will find out. :)

Sunday, June 26, 2011

Happy Day!

Happy Birthday Shawn!

Monday, June 20, 2011

Medical Report

Today was informative -
WBC = 2.2(L)
RBC = 3.49(L)
Platelet Count = 45(L) which explains the bruises all over Terry's torso....actually all over!
Neutrophils = 0.7(L) which explains the lack of energy.

Word is back from SCCA = Terry will be going to get a Donor Lymphocyte Infusion!
It will require a week's stay at Seattle - unless, of course, something goes wrong, requiring more time. We are expecting a call within the next day or two to hear when that appointment will take place. There is talk of it taking place next week, but we are waiting for a confirmation. We do have an appointment set up with the oncologist just in case we don't go to Seattle next week. We've got to keep an eye on these counts.

Flow cytometry went from .2% to 2.?% background CLL. Those numbers seem low, but they must change the trend and hit it with a "boost" to help it go the right direction.
We don't know a lot about it yet, but it is different than the blood they used for transplant and could still cause a problem with GVHD. He hasn't had much of the GVHD with the transplant, so we hope it's the same for the boost. We are not sure which way our luck is running right now. ;)

It feels like this post is a bit of a "teaser", but we do need to be more informed ourselves so we promise to update as we learn more.

Sunday, June 19, 2011

Happy Father's Day!

"Fathers, yours is an eternal calling from which you are never released.... a father’s calling is eternal, and its importance transcends time. It is a calling for both time and eternity." Ezra Taft Benson

“Fatherhood is not a matter of station or wealth,” said President Ezra Taft Benson. “It is a matter of desire, diligence, and determination to see one’s family exalted in the celestial kingdom. If that prize is lost, nothing else really matters” (Ensign, May 1981, p. 36).

“The most important of the Lord’s work that you [fathers] will ever do will be the work you do within the walls of your own home." Harold B. Lee

Fatherhood is a relationship of love and understanding. It is strength and manliness and honor. It is power and action. It is counsel and instruction.
“Most fathers concentrate on material security for their children. Security stored up for this lifetime with the world’s situation as it is, could, and probably will, vanish. To really secure one’s children, give them the memory of a happy home life. This is a pattern, a blueprint for them to follow, an image for them to create, an ideal for them to realize.” Elder Packer

I send out a thank you to my father this day, and to Terry's father. We love you!
I thank all men everywhere who have blessed our lives in many ways.
I thank Terry, the father of our children - my best friend for over thirty one years. :)
I thank my sons, as they are becoming men of honor and full of faith, righteous husbands and fathers in their own families. There is no greater call!

Wednesday, June 15, 2011

Fun Photo

Here's a cute photo of a cute kiddo having a fun time! The cat is so good with Auger, even when Auger is less than tender with him.

Monday, June 13, 2011

Medical Report

This was a different sort of visit for us because we had Auger with us; since Dana was at basketball camp (BJo too) and Thomas was working (and all of the other boys). It was the highlight of the day for those nurses. It's surely not a common sight to have children in the oncology area. They showed him all sorts of attention and gave him Oreos, Fig Newtons, and Ritz crackers with cheese. He was well cared for, and he was really very good for us. As we left he was told to "come again"!

As for the blood report - we didn't get a copy and don't remember the numbers.
However, we do know that the white blood and neutrophils were quite low and they gave him a neupogin shot to get them up. That should or could help his low energy issue.
Platelets weren't normal, but had gone up some. Up is good, even if it's not as high as we'd like it.

SCCA called and wanted another chimerism test. The last one showed that a couple of the tests were low. They sent blood over to them again yesterday and we'll get the report by Wednesday or Thursday (hopefully). If they remain low we may be looking at a "boost". Since we don't know enough about that I'll not explain it now. We will post more about it when we learn more and know for sure if it will happen.

For now, Terry continues to work on the farm, even with the low energy. I'm so sorry for him and wish he could just come in and rest whenever he needed, but he does keep pushing himself. I suppose we all have experienced that need for rest but the greater need to keep pushing oneself to accomplish the necessary tasks at hand, but his seems to be more constant. One thing I know for sure is that the Lord is his strength!

As for his cough - it is better, but we wish we could tell it was gone for good. He still has a couple more days of those meds. Hopefully that will be long enough to cure him of this bronchitis.

Tuesday, June 7, 2011

Happy Day!

Happy Birthday Michael!

Monday, June 6, 2011


Just a reminder!
Terry gets to have his doctor visits every two weeks now, so no appointment report today - it's his week off.
I suppose the biggest question now is; "Is the medication helping his cough?" We think it is! He still has several pills left to take so we are hopeful that it will be a long enough treatment to keep it away this time.