Let us rise up and be thankful, for
if we didn't learn a lot today, at least we learned a little, and if we didn't
learn a little, at least we didn't get sick, and if we got sick, at least we
didn't die; so, let us all be thankful. Buddha
Terry saw Dr. Smith and things are somewhat remaining the same.
White blood count (WBC) is quite low at 0.6(LL) but that is somewhat expected at this point after Vidaza infusions, and they think it will be better next week.
Cyclosporine levels are where they expect, but we are beginning to taper that drug, hopefully to allow some graft verses disease. He was taking 175mg twice a day and is going down to 150mg twice a day. This should help him shake a little less, but he is still taking enough that he will remain shaky. Any reduction of this medication is always a good thing even if it is only one small pill less. It's an icky one!
We will continue the hydration at 1 liter per day because of the creatinine levels. Drinking liquids kinda irritates him and makes him feel more nauseated, so he doesn't drink enough to flush the kidneys like they need with all this medication.
What a great evening we had, but I only got one photo before we began. Here is Akleigh, in her pjs, as we are getting ready for a night at movies in our family room.
We had a picnic in the family room while watching the movie. I put down a blanket and pillows for the kids and we had pigs in a blanket, veggies and popcorn and donuts. (Things that wouldn't cause a mess if they dropped on the carpet.)
It was fun to see the kids dance and sing to the music in the movie and stand up to the TV to get a close up view of the excitement taking place on the screen.
I brought the camera out and set it on the table thinking it would remind me to take pictures, but I was wrong. So this is all I got. However, it is the memory that will linger in our hearts and I think our vote is to do it again sometime ..., and again ..., and ..., well, you get the picture.
It's time for a new post isn't it?!?!? I've been wanting to post something for awhile now, and just haven't done it. Today is the day ..., and it's a long one. I should do short posts more often, but it just didn't happen that way this time.
I think things are beginning to feel a bit more "normal" around here. It's kind of a new normal, but it's becoming a more comfortable place. All of our stuff from Seattle is put away, but there is still much to do because I'm still focusing on things that need deep cleaned and organized. I've been trying to do that for a few years now, so that is certainly normal for me.
I have accomplished a few things on the list, like cleaning the pantry and food storage areas. That makes me feel good. My biggest accomplishment last week was that I cleaned the pump house. WOW! I haven't done that in a long time, so that feels good.
I went to Moses Lake for the first time in over 6 months. Another WOW! It felt a bit strange, especially because I was alone. I haven't done that much lately. Just in case I was feeling a bit like I was missing Seattle, someone along the highway hung a 12th man flag from their home to make me feel better. I assure you that I do feel at home, but as much as I don't miss Seattle, that flag did make me smile. I went to pick up some medication for Terry. I stopped at a few stores just to see if I could find something I'd like to buy and nothing seemed to call my name, except for the movie Frozen.
(We'll be watching that tonight. I love the good in that movie and the family love that prevails. It's Fun!)
I spent more on the medication than on other things combined that day. That is a good thing too, because if I'm trying to clean and organize this place it's good not to bring other things in to the clutter. I do feel like I'm having a hard time letting things go though. I'm trying to create a Goodwill or yard sale box and it's not as easy as I hoped. I need to be able to let go of things easier. How do I do that?
Medical needs are still number one around here, but they are also taking a back seat to other things. That sounds like an oxymoron doesn't it. I guess I just mean to say that it's getting easier trying to combine it all - in daily tasks and in my head. We are getting Terry's hydration (4 hour infusion) done daily and his medicines are getting taken regularly as well. Some days it still feels tricky with some of the scheduling, but it's working okay. It's nice to only have one appointment a week for a few weeks before starting the daily chemo treatments again. Terry is feeling a little less nauseated now after being off chemo for a week. We hope it lasts. He still doesn't have a lot of energy, and wishes for more. Oh! The BK virus (urine infection) is gone - that is definitely a good thing. He would love to be out with the guys more, but has only been able to spend a couple hours a few days with them and feels pretty wiped out afterward. It's still good to be home and a part of the support system.
We were able to attend church meetings again Sunday and it was a lovely day. By the end of Sacrament meeting the spirit was touching my heart and soul very strongly. I was feeling grateful to be there for the third Sunday in a row since we moved back home. Sunday School and Relief Society were also great meetings and by the end of RS my heart was overflowing with gratitude for the opportunity to be there and to feel of the spirit that was ever present that day, (and missed so many Sundays in Seattle - it was good to feel it). If it's like the first transplant, it will take me a while to feel like I've picked up where I left off (spiritually), but it's good to feel it happening already. I am so grateful for the gospel, for leaders and teachers and friends and family who teach and testify and serve to bless lives. I feel blessed! I am grateful for a loving Father in Heaven and for His Son, our Savior and Redeemer, Jesus Christ.
I neglected to post about this last week - on our way home from Church last Sunday we were able to help a friend replace a flat tire. We were in our church clothes and they got a bit dirty, but we all agreed that it felt so good to be helpful and give of ourselves to help another.
It wasn't long before a friend showed up to help us help another. Serving and giving is a great thing in life. What a blessing it is to all involved. (BJO got these photos with her phone - maybe I need a new phone so I can take photos like this too. But then again, I don't need to be learning about a new phone right now.)
Being involved and serving leads me to our missionary sons, Elders Connor and Chase...
We have received Chase's release date - June 25th - only three months from now. We can tell with his letters that he is finishing strong. He loves the area he is in and the people there. We can feel that his testimony continues to be strengthened as he continues to serve. He read the Book of Mormon from beginning to end through the month of January and is currently reading the Old Testament with plans to have it completed before he is released.
Connor is doing great as well. He is just over his one year mark (end of Jan.) and is going strong. He too is strengthening his testimony as he helps others. He is training a new missionary that is older than he is and it's feeling a bit odd for him, but he loves the work and is anxiously engaged in a good cause.
It's been great to have the kids stop in on occasion and we love the hugs and attention from the grandkids. It is awesome to see them at church across the way and get the sweet smiles and waves filled with love and then the hugs that follow. We had family over Sunday evening and it was fun to be with them.
We look forward to more gatherings and visits from other family members through the next few months. We'll try to remember to get photos and post about those great moments yet to come. Life is getting busier and busier with the upcoming events this year. I hope I don't crash ..., but then ..., if I do it won't be the first time and I know from past experience that I will get up and dust myself off and get going again. Much like little children that fall to the floor and jump up and go some more. It happens all the time doesn't it!
BrittanyJo has been helping with the little girls basketball each weekend and Anthony has begun tennis. I'm hoping for some good weather to be outside and cleaning this week - it needs it. But there is still enough to do in the house if not.
We had a blood draw and doctor visit in Wenatchee today. Nothing much to talk about, but medicine refills and hydration needs. Everything else is about the same, including how Terry is feeling - nauseated and not so energetic.
Here is a copy of the flowsheet from today's blood draw, which includes the normal range and the counts for the last three appointments (with the dates at the top) -
For some reason she was concerned with the Potassium and Magnesium, and made changes in his hydration.
It is interesting that the whites are up a bit. WBC has been pretty low lately. Okay, they are still low, in fact they are LL, but still up from the last couple weeks. :) We'll see if that lasts.
Good news - boxes are no longer stacked in the family room, and my stuff room is re-organized (as good as it can get before I finish scrapbooking and find a place for a few things being stuffed in there until they have a place of their own).
The pantries are re-organized, but the kitchen counter is still cluttered with medical supplies and I have not yet determined where I'm going to store them. One thing I know for sure, is that I don't like them on the kitchen counter. I'll get that figured out this week if things go well.
There are a few boxes left to take care of in our bedroom, including a suit case I need to finish unpacking. I have a lot of organizing to do in many other areas of the house, but I am excited for the challenge and look forward to each completion.
I had to take a break from the cleaning and organizing to figure out our tax info, and that seemed a bit challenging trying to find records. When I am at home I have a place for those papers, but at Seattle things got a bit confusing ..., and bringing them home was even worse. The good thing is that those things are now put in their proper place. It just seemed a bit un-nerving to me at the time, trying to find the things I needed in the piles of things to put away.
Life is supposed to be getting normal for me, but this new normal is still a bit off and I hope to find it soon. Day to day life is happening here. I'm finding it tricky to get used to all this again. Wow!
Medicine changes are happening, which makes timing a bit easier, but we are still hydrating daily. It is nice to have our 5 days of Vidaza infusions complete now. No more trips to Wenatchee this week! That ought to help our transition into our home life become a bit smoother. Our next appointment is Tuesday. We will have a weekly appointment to see the doctor and get blood work done.
Terry is feeling nauseated and icky, and lacking in energy/stamina. Other than that, he is fine! ;)
It was a no school day today so we took the kids to Wenatchee with us and did some much needed shopping for them. We saw a couple 12 Flags in our travels today ..., reminding us of the sights and sounds of Seattle. Anthony got some more driving time in, but the wind made it really tricky. It not only blew us around, but it made visibility difficult (if not impossible) at times with the sand blowing across the road. We made it home safely and were happy to be inside, away from the blistery day. Ah, the comforts of life! We are lucky!
We are BLESSED!
Well, I'm waiting up for BJo, so I think I'll find something constructive to do ....
SCCA sent us a box of supplies we have to put together and take to the clinic each week, so I guess that will be a good and quiet constructive activity for me till she gets home.
(the styrofoam boxes hold a vial)
(one of everything!)
I will only do a few, because they take up more room when they are all put together - and then where would I store them all? Oh Bother!
A quick look back -
We were in Seattle a bit longer for the second transplant (5 months + 11 days) than we were the first transplant (1 day short of 5 months if I remember correctly). However, the time after transplant was shorter on the second, since the added days were before transplant, due to the sinus surgery. We were able to spend some weekends home with both, but I don't know how they compare. When we got home from the first transplant we traveled back about 3 times a week for a couple weeks, then two times a week, slowly down to none. This time we are able to take care of our needs in Wenatchee.
We missed many holidays at home, but hopefully that will make this next year of holidays more enjoyable.
Our appointment in Wenatchee Friday morning went well. It was nice to see our doctor and others who cared for us there. A couple people stopped in to say hi as they walked by and saw us there. We know we are in good hands and actually look forward to seeing the nurses in the infusion room this week. (I could be speaking for myself there, but I know that Terry enjoys their loving care, though he may wish it wasn't necessary. I wish it wasn't necessary too!)
WBC = 0.7(LL)
RBC = 3.05(L)
HCT = 30.6(L)
PLT = 65(L)
Magnesium was a bit low, so we will add another pill in the afternoon.
Creatinine was in the normal range.
Glucose was in the normal range.
Before we left we saw this taking place out our window.
Spring farming is beautiful! We are happy to be here to see it take place.
Today (Saturday) has been a long hard day trying to organize things. I've carried too many boxes and items from one room to the other, and to the garage or pump house, and feel like I've done enough to have everything put away. That just isn't the case, because a lot of what I carried around was stuff already here, just moving it to a different location in the house, making room for a few other things I collected (especially Christmas stuff). It's one of those domino effects where one things leads to another.
I think most of my food stuff we brought home is put away. Bringing two households together can be tricky, even if the one we are moving from is a small apartment. And, I was on my own today because the kids have youth conference. NO HELP! Oh Bother! I can't wait for them or it will take forever. Even more forever than it already seems.
I think I'll rest the rest of the night, if that is possible when I'm surrounded by boxes and things waiting to find their space in this house. I'll be waiting up for the kids ..., hope they are home before midnight. I haven't waited up for them in a long time.
Our last three days in Seattle were filled with packing up and stuffing things in the car. We did a little every day, but most was done on Thursday.
We also had a nice visit with my parents who came to visit us Wednesday after our day at infusion (of red cells). It's always nice to see them, but it doesn't always get to happen often, so we are glad it worked for us this week.
Our visit with the doctor on Thursday went about as we thought it might. It was just a review of what has taken place and what will continue to take place. We reviewed meds and said our good-byes to those we worked with there at the clinic.
That visit was at 3:00pm, so we spent the morning packing, loading the car, and cleaning the apartment. All we had left after the appointment was to remove things from the freezer, and we were on our way home. YEAH!
Roads were bare and wet. It rained much of the way home, but other than that traffic was pretty good.
We unloaded the car (that was stuffed to the roof) and piled everything in the way again. Problem now, is finding the time and space to put everything. We might be living this way for a few days until I can get things organized and cleaned ..., one area at a time ..., starting with a place for his meds and supplies that need a whole room to themselves. Oh Bother!
Actually I'm kinda excited about the cleaning and organizing because it's been something I've wanted to do for awhile now and it will be much better when I'm done.
I sure have some busy days, weeks, months ahead of me, and my biggest concern at this point is keeping Terry's medicine schedule going well when my mind will be so many other places. I might have to set a dozen timers throughout the day. We'll see! I suppose I'm up for the challenge, just so we can be home with family (and not have to pay $3000.00 a month rent for a tiny apartment without enjoying our luxuries of home).
Well, it's time to be up with the kids, so I'll post another time - certainly not daily, but you've been getting used to that lately haven't you!?!?!
We are past day 100 and we have a plan to go home!!!!! How's that for the best news first?
Our clinic visit today was as we hoped and prayed for. Only a few more days before we head home.
Terry needs a red blood cell transfusion tomorrow (which takes several hours) and a departure clinic visit with Dr. Scott on Thursday, where he will review all that has taken place from the time we arrived until the time we leave, and he will remind us of things that could take place in the future.
We learned that we have an appointment with Dr. Smith in Wenatchee on Friday, and we know that Vidaza will begin (in Wenatchee) on Monday, and will be a 5 day treatment.
We also had an appointment with the ENT doc today, who says things are looking good, but he is sorry Terry is not feeling better than he is. It's interesting to hear that it looks good when it feels so crummy. He would like to see Terry in a couple months, so we might take a quick day trip back if we find a free day.
WE ARE SO EXCITED TO GO HOME
AND STAY HOME!
We had a wonderful weekend
and enjoyed being home with family and
for Stake Conference meetings.
More good times to come!