Doctor Visit

Terry had an appointment with his oncologist today. There we met Dorothy, the Lion, and Tin Man. We also saw a Gypsy and a devil and others we couldn't quite name. Several of the nurses and receptionists were enjoying the opportunity to make it a fun day by dressing up.

Here is the blood work:
WBC 3.1(L)
RBC 3.4(L)
Platelets 48(L)
Neutrophils 1.6(L) no need for a shot today!!!

ALT 79(H)
AST 106(H)

Next appointment in two weeks. We're hoping the neutrophils keep going up.
We will be on the look out for any changes and problems that could occur...hoping that they are insignificant.

A Surprise Wish:

HAPPY HALLOWEEN EVERYBODY!

and

Happy Birthday Jewell!!!!
We hope you have a beautiful day!

Great Advice

Tawnee shared this with me several days ago, and I was finally able to watch and download it this morning. (I'm trying to play catch up with some of my emails from the last few weeks.)
This is such a beautiful message...I'm sharing it with you!

Advice from Elder Busche

So Good to be Home!

All is Well!

We will just pick up where we left off and keep moving with the flow around here. Everybody has something to do and somewhere to go. I feel like I've been a slower goer for awhile and now I've got to get into the fast lane again.

Anthony learned he has strep throat today and got a shot to help him recover (no meds to have to remember, yea!) - thanks to Thomas and Dana for getting him into the doctor!

Thanks to all who have brought our family dinner while we were gone!!!!
There are good people everywhere and we are so grateful for them...for you! Thursday night a company in Seattle (I think it was Skanska) prepared a free meal for those who stay at the SCCA House. It was not just a simple throw together meal, but a very nice dinner that we and so many others enjoyed. There were over a dozen people there serving us and they were so kind and compassionate...happy to be serving others.
Though the SCCA House has a big kitchen area on one floor, the rooms only have a small fridge and microwave in the rooms, so it makes cooking a good meal a bit tricky. These people served a wonderful meal and were so happy to do it. We were grateful to receive it too. It warms our hearts!

Thanks for your prayers!!!! We pray for you too!!!
Thanks for everything!!!

Sights and Sounds of Seattle!

There are many sirens throughout the day and night that come from police and emergency responders. One night as we heard the quick on and off of the police siren Terry mentioned something like "There's the Seattle coyotes again!". Fun memory to bring home, but we are happily leaving the yelping sirens here.

Being able to see the city lights at night has been a beautiful sight, especially since our view in the Pete Gross House was the outside wall of the next buildings with a small view of the lake (which I do miss). We are on the 5th floor here at the SCCA House and can see a wide view of the city South of us. (I know that is the correct direction, because I asked Terry, but I am still all turned around over here.) The several tall buildings all lit up at night is an amazing sight we don't see at home and a great view to keep in our memory, but we look forward to seeing the stars lit up at night when we get home.

Can you tell that I am truly a country girl?

The sounds of the tractors in the field next to us or the cows or dogs or coyotes seem to bring a more peaceful feeling than the constant whine of the commuters on the roads here.

I just feel all the more grateful for the beautiful land that we call home.

It was intriguing to see the stain left on the sidewalks from the fallen leaves. It is a simple pleasure to view as we walk back and forth from the SCCA, but we leave it behind now as we have completed our lab and clinic for the morning and talked them into letting us go home.

They had us scheduled for an appointment tomorrow, thinking that Terry's neutrophil counts would require a neupogen shot and we don't have access to that on a Saturday, at home. Terry asked if he could just get the shot today and head out. They agreed!!! So, we are packed and will begin loading the car as soon as I'm done here and we get checked out at the front desk.

Dennis and MaryAnn have talked their way home too! They were to have an appointment tomorrow for a lab draw and clinic visit just to make sure Dennis was okay before sending him home. There is never a problem, so it seemed silly to stay another day, and they are free to leave after they have their clinic visit...that should be soon too.

As we've said before, we are so grateful for their willingness to serve in this way and love them very much.

We think we'll be home before the kids get home from school. Happy Day! (Of course that depends on the traffic which has been known to back up over here!)

DLI went WELL

We waited longer in the waiting room than it took for the actual infusion. There were no problems and things still look good.

Thursday Morning

Blood draw and clinic visit are complete and we are just waiting for the next appointment which will be the DLI, at 3:00pm. (Terry is up in the room relaxing and and I am down doing laundry (and using the computer on the second floor.)

We have seen Eddie three days in a row now and it is interesting how the people here remember some of their patients. Eddie is the shuttle driver that would take us back and forth from the Pete Gross House and the SCCA. He is a kind and helpful person that expresses concern and hope as he gets to know each person he transports. It is like we are greeting an old friend as we recognize each other on the way in to the clinic.

The neutrophils are okay today, 1.? (something, I don't have the paper in front of me), so Terry did not need a Neupogen shot.
We do have a lab and clinic tomorrow morning and if it looks good we will get to go home.

I'll report again tonight after the DLI.

Today's Visit

Quite a day - NO Neupogen shot! Yea!
WBC = 6.59 - normal range :)
RBC = 3.72(L)
Platelets = 58(L)
Neutrophils = 3.09 - normal range, no shot needed.

In addition to our lab and clinic today we had a conference with Dr. Kiem.

We are ever grateful for their knowledge, and yet, as much as they know, there is still much they don't know. (They aren't afraid to tell us that either.) Here are some notes from that conference.

- Bone Marrow results show persistent CLL,
and an unusual finding: good donor T cells present, but has lost the donor Myeloid cells. Don't know why there are no detectable donor granulocytes. Hope the DLI (donor lymphocyte infusion) will help to bring them back if they are present in small numbers.

- Viral studies (for hepatitis, etc.) were negative (sometimes viruses can lower blood counts, but that is not the reason here).
- Chromosome studies were abnormal with CLL (we knew about the CLL but 2 new abnormalities were possibly found. They may contribute to the low ANC (absolute neutrophil count, which is the neutrophil counts we've been showing each time we share the counts). We will follow those and see if they affect the myeloid line of cells. It is concerning, but not yet technically a disease.
- kidney and liver functions are fine (some high numbers, but not critical and not significant).

He may receive more than one DLI, will wait up to 4 months to see response to this one. They will be storing lymphocytes from donor for another DLI if needed.
If the DLI does not work we may need another transplant of donor stem cells. (They told us to be good to our donor) We are eternally grateful for our donor!!!!! We don't think we could ever re-pay him for his good works on our behalf, but we love him and his family. We love all of our family and thank each one for their love and their kindness.

We reviewed the Pulmonary Function Tests (which were good) and the CT Scan (also good, but they did notice that Terry might have a bit of pneumonia, which does not pose a problem, he is taking a medication that will help that), and the skin biopsy was negative for GVHD.

We have been instructed to watch for symptoms of GVHD again and reviewed what those symptoms might be.

The goal is to get rid of the leukemia cells, without causing too much harm from GVHD or aplasia (loss of blood counts, bone marrow production).

We will see our doctor (at home) on Monday, check blood counts weekly and chimerisms monthly.

DLI is scheduled for 3:00 tomorrow.
We plan to come home Friday.

We are back at the SCCA House and Terry is resting. We had a short but sweet visit from Bishop and Carly and they brought us a fantastic lunch (thank you!).

It's a little too cold to be spending our time in the outdoors today, but we will probably visit with Dennis and MaryAnn, as they are checking in this afternoon.

Exciting News!

We have another piece of news today...and this is news to so many... and more exciting than any news the last few days...ready?
We are going to have another baby in the family. Grand baby number 6 is on his/her way.
To avoid any more rumors and to end the guessing game, we will share that the happy parents to be are Skyler and Lisa!
We love family and are so very happy that our family is growing and we look forward to be a family forever. I so want to receive that great blessing.

Tuesday Report

We did not get our printed report today, but the Neutrophils were still low, though better than they had been for several days. At .8? it required another Neupogen Shot.

Still on our original plan as far as we know. Tomorrow we will have another lab and clinic, but we will also have a conference to tell us the results of the bone marrow biopsy and what will come up on Thursday. We'll keep posting!

We took a drive to North Gate and purchased a couple things - our most important purchase was a foam for the bed...now maybe we can sleep better and feel fewer aches and pains. Here's hoping!

Sorry there isn't much exciting on the last few posts...we're just passing the time and anxious to get this taken care of and go back home. We are so grateful to have this option and we pray that it will be successful.

Thanks to all who are helping our kids at home and for all who are praying in our behalf.

Monday, Monday!

Lab draw and clinic visit this morning again.
Also again, was a Neupogen shot.

WBC = 2.91
RBC = 3.58
Platelets = 54
Neutrophils = .49

After clinic visit we visited with Dennis and Mary Ann in the waiting room. They came today for his work up. They will be back again for a Wednesday appointment. We'll continue our appointments daily.

We're missing the kids and home, but praying for all to be well.

Sunday in Seattle Report

We walked to the much needed lab draw at 10:45 this morning (and a clinic appointment at 11:30). It was a beautiful day to walk to the clinic though on the way back it was just a bit more chilly and there were a few drops of moisture teasing us.

WBC = 2.28(L)
RBC = 3.54(L)
Platelets = 56(L)
Neutrophils = .41(C) We thought it might be because Terry is feeling so tired and worn out and his cold is getting worse. That seemed to be telling me that he doesn't have enough white cells to help himself get over this cold. He's using them all up too quickly. Maybe my opinion shows how much I really don't know, but it seemed to make sense in my little brain. His body is also feeling achy and sore because of those shots. (And the bed isn't helping at all that way either. But we are thankful to have a bed!)

Just thinking about the walk today - people walking down the sidewalks here don't seem to move for anyone else, but expect the other guy to move all the way off the sidewalk so that they can stay on their track. I don't expect them to move all the way off for us, just share in the moving out of the way. It really is like they are locked onto a track. This seems to happen often and I am sorry for those people who are so thoughtless and inconsiderate, and ever more grateful to those who are kind and respectful of others.

We were also noticing all of the garbage that is left laying around and sorry for those people that don't seem to care about the world and community they live in. If I were to carry a big garbage bag on my way to the clinic and pick up all of the trash I could easily fill it without stepping more than three feet off the pathway either direction. If I wasn't so worried about germs right now, I'd do it.

Now, after complaining about a couple things I want to share something about those who are kind and compassionate. We have been to SCCA enough now that there are many nurses and other workers there that recognize us and know Terry by name, and remember it. They are kind and happy people with love and concern in their hearts. It is fun to see them and we appreciate their goodness. We saw our nurse from the transplant days and she was happy to see us (giving me a hug and Terry a nice pat on the shoulder). It was a pleasant moment of the day. We keep looking for Eddie (our shuttle driver from the transplant days) but have not yet seen him. We hope to see a few more of those kind people as we spend a few more days here. We hope to be kind people and make a difference in others lives. We know that it is often the little things that make the biggest difference! We'll keep doing our best!

Thanks to all for your love and kindness, and for your prayers!
We pray that our Heavenly Father will bless you and yours too!

Happy Day!

Happy Birthday Bryan L!

Saturday Report

Today was a late appointment - labs at 10:15am and clinic at 11:00. We walked to the clinic in the rain, feeling kinda soggy when we got there, but really enjoyed the walk.

Labs:
WBC = 2.26(L)
RBC = 3.61(L)
Platelet Count = 55
Neutrophils = .75(L)

Another Neupogen Shot today, and we'll go back tomorrow for the same if needed.

We learned that the nasal swab was positive (for rhino virus; the funny name for the common cold), but that won't stop us from continuing. They just wanted to make sure they knew what they were working with, and now they know.

We walked back in the rain too! Sometimes, like today, a walk in the rain is a pleasant thing. It wasn't big hard drops, just a lot of misty drops soaking us pretty good.

Reporting mid-day, because we are done for the day!

Early morning blood draw today. Okay, 7:45 am is not that early, but it seemed early for the day after the busy day we had yesterday. I was hoping Terry could sleep in and rest some this morning.
We made it to blood draw and then to an appointment at 9:00, where they gave him another G Shot and did a tear test (checking the moisture in the eyes).

Blood results:
WBC = 2.18(L)
RBC = 3.62(L)
Platelets = 55(L)
Neutrophils = .98(L)
No testing for the liver enzymes today.

No results on the nasal wash yet either. If it is positive we could see those results by tomorrow. If it is negative we will not know for sure for 5 days. Just more practice at patiently waiting.

After the appointment we went to the bank and to the grocery store, came back to the House and made lunch. Terry is now having a nap and I'm trying to be quite and not disturb him.

Nothing planned for this afternoon, but another lab and clinic tomorrow morning (10:15am).

Reporting from Seattle...again!

After a somewhat restful night on a hard bed ;) we headed to the clinic this morning. Here is how our schedule went:

8:00am Registration with Registrar (this was quick and painless)
8:45am Fasting Arrival Lab with Draw.
WBC =.96(L) [norm is 4.3-10.0]
RBC = 3.39(L) [norm is 4.4-5.60]
Neutrophils = .13(L) [norm is 1.8-7.00]
Platelets = 58
ALT and AST (they look at the liver) are both in the low 70's

9:00am Radiology for Contrast - prep for CT Scan, (drink the icky contrast over the course of an hour, and get an IV line put in his arm, because they cannot put the die through the Hickman.)
10:15am CT Scan (Terry did get a cheese stick and a couple crackers and a small can of juice after the scan. Lucky!)

11:00am LTFU Consult for Pre-DLI Exam (a two hour allotment of time with Q&A, prodding and poking to check glands, skin, etc., etc.,.... This is where we found a bruise on his arm where they put the needle for the scan - too few platelets!)

1:00pm Pulmonary Function Test (the great breathing test that just seems to be training for The Wolf's roll in The Three Little Pigs. They claim that this knowledge is important. We are sure that they do like that knowledge. By the way, Terry did get a good score on that test. YEA!)

2:00pm Prep for Bone Marrow Procedure

3:00pm Bone Marrow Biopsy (She had to go in three different times to get it where it needed to be and had to poke around a lot to get it where it wouldn't hurt so bad...it was really bad a time or two. They took three times more marrow than normal, and also took a piece of bone and a piece of skin for testing. The good news for this part of the day was that they only had to do one side. WooHoo! Happy Day!) After the procedure we each got a little can of juice and a few Lorna Doone Cookies.

4:30pm 6th floor for add on procedures Nasal swab to check for sure on the cold symptoms, photographs to compare to the earlier photographs and any that might come later, and a G Shot/Neupogen to help the Neutrophils that were too low. FYI - Neupogen lasts for just a day and Neulasta lasts for a couple weeks.

5:30pm back to the SCCA House.
We were finally able to eat...had a quick dinner and now Terry is resting.

So, what do we have to look forward to? Tomorrow will surely be a crummy day for him as he usually feels somewhat sickly after drinking the contrast and of course after having a bone marrow biopsy.
We will go in daily for blood draw and visits to learn the results, especially to check the counts and get another shot if needed. At this point we are on schedule, but we also know how quickly things can change around here.
We'll keep posting to let you know how things are going.

We send our love!!!!!

Just a reminder: no medical report until Thursday!

Terry did not have an appointment this week so there was no medical report Monday.
He is feeling okay, with a few slight cold symptoms, and we are heading to Seattle for the DLI as planned.
Ready or not...here we come!

I should be ready, but I must have put things off until it was too late, because it seems to have snuck up on me. I know it hasn't really, but I'm still pushing to get things ready for us to leave today. I guess I just had too big of a To Do list to complete and it's not all going to happen so smoothly.

Now for confessions - I've had such an emotional beginning of the week, that I hope the rest of the week will not follow the same way. Some of this emotion has been good though. It started Sunday morning when something difficult for me happened and I felt sorrow and disappointment. Then all through Sacrament Meeting I felt such a wonderful feeling of love from my Heavenly Father that my emotions were surfacing. (No, they were surfaced!) It's a good thing I didn't have to speak or I would have blurted out a big cry session. I knew that my Savior had suffered this disappointment for me already and that hard as it was I could turn it over to Him and He would help calm my heart and soul. I did...and He did! Oh, it still hurt, but I could move forward with a sweet peace that I was loved from above.

Anyway, Monday sent me emotional moments as I was concerned for friends and family and Tuesday sent me emotional moments as I was preparing things to be able to go. One of the last things Tuesday that was so simple and yet it was such a Tender Mercy, was when I had to stop in Quincy (on my way home after a difficult day and late at that), to get pumpkins in case my kids needed them Wednesday night. They were 29 cents a pound and that seemed outrageous to me, but I needed them non-the-less. I put three in the cart and headed to the counter. As I was putting them on the counter a man came over to the clerk and said; "Give those to her for 15 cents since they go on sale tomorrow." I kindly thanked him, and even felt like hugging him, because my emotions were so close. Silly huh! But that again, let me know that our Savior was watching over me and would make things easier when things could be easier. Some things we have to go through and some things can be changed, but always...ALWAYS...He is there for us. I am so grateful for that. He is my source of peace.

So many have asked about this DLI, and it is a hard thing to understand (we are trying and learning more about it ourselves). I talked with the doctors yesterday and feel a little more informed. One thing though - we still don't know what the outcome will be - we can only hope and pray.

We thank you for your prayers as we head out again for this medical procedure. We'll keep you posted ... yes, more than I have the last couple weeks. Sorry! We will try to explain things as we learn more and go through them. With my limited knowledge it will be tricky, but I'll do my best.

And, again;
Today, ready or not, here we come!

Happy Day!

Happy Birthday Darryl!

Happy Day!

Happy Birthday Mary Ann!

Today's doctor visit

Terry's lab results:
WBC 2.4(L)
RBC 3.30(L)
Platelets 52(L)
Neutrophils 1.4(L)
ALT 69(H)
AST 89(H)

Though nothing is normal we're still okay with the numbers.
We do need to work on the calcium a bit more and the protein, but those seem kinda trivial.

As for heading to SCCA next week, we think we are still on schedule.

Terry's cold is still hanging on, but no fever so we are hoping it continues to get better.

Appointment Day for Terry

Okay, today's doctor/lab results for Terry:
WBC = 1.8(L)
RBC = 3.24(L)
Platelets = 60(L)
Neutrophils = .9(L)

Low Potassium so he will eat more foods with potassium.
Low Calcium so he will take one more calcium supplement each day.
He often seems to be a little low on the Protein, but it's not so easy to make a difference there.

ALT = 73(H)
AST = 88(H)

He still has a cold/cough. It's a tough thing to get rid of. One more round of antibiotic and a Neulasta shot today in hopes of helping him get rid of that thing for sure.

I'm adding lotsa prayer to that list, cause that's a sure thing! It will either clear up that cold or bring us the comfort and peace that we need to handle it all. What's better than that? Nada!