Friday, April 30, 2010

Blood draw and clinic visit today.

We learned that Terry's counts continue to go down. We asked when he might be at his lowest and they said that usually happens between days 5 to 10. Well, we are at day 9, so we are happy to think that his low is about here and it won't be long before he starts climbing upward again. They call that low point "nadir" and he may remain at nadir for a couple days. We'll see what starts happening and when, and we'll let you know.

It's been an ordinary day when comparing it to the past week, but we did get some good news this afternoon. In their testing they learned that Terry will have a small break with his cyclosporine meds. That is good news because that means 7 fewer pills tonight and 7 fewer again in the morning, and they are the terrible horse pills. Yeah! It may only last until tomorrow night, but that is still a great break.

Our day is almost over, but not everyone here in Seattle shares the desire to sleep through the night. There are some pretty noisy night riders. It seems that Seattle has some motorcyclists that like to rev up their motors at night, just outside our windows. There is traffic all day and traffic all night. At least the construction is silent for the night. Hey, maybe they are the guys out on the bikes at night???
Oh, just a bit of fun for this ordinary day - we saw 2 pirate ships in Union Lake, but we were at the clinic and didn't have the camera. They were pretty cool looking and fun to see. Something else new is that I made a little bit of apples sauce with some apples that were getting a bit soft. We hope to enjoy that tomorrow.

Overall this has been a good day. We have smiled and laughed and we are grateful that things are going well. We hope you had some smiles and laughs in your ordinary day too. Life is good!

Thursday, April 29, 2010

A slow day today.

We had a quick trip to the clinic early this morning and then had the rest of the day free. It's not been the most pleasant day for Terry (but it's not been the worst either). It wasn't a very good night for him, so that might have a little bit to do with how he is feeling today. We just have to take it one day at a time. Surely the days seem long to him as he is feeling icky. I can't even plan anything for him to do because he just needs to rest.
We are a full week out from T-day, so that's good.

I did some more scrapbooking, and ... tada! ... finished what I could with our family books. (I make family books and then I make a book for each of our children, so I have 6 more to go, and I also update my mom and dad's books. I have done a few pages for mom and dad since we've been here, but need more info before I can continue with those.) I counted the pages I have done and there were 92 new pages in the family books, so I know I've done over 100.

I have been worried about having enough time to get everything done that I want to while we are here. I did bring a lot to do. Taking care of Terry is #1 on my list and that can be time consuming some days, so I've been worried that I have brought all this stuff to do and not enough time to do it. Counting the pages I have done made me think that I am doing more than I realized. Whew! I guess it will turn out better than I think!!!


Happy Birthday Estella!
We love you!

Happy Anniversary to ... our house!
Did you know?
This is the day we moved in, and occasionally we celebrate this day with cake or other yummy food, with a piece of furniture (not this year), or with a movie night or some other fun thing to do.

Wednesday, April 28, 2010

Terry stayed home and I went to the SCCA clinic today by myself. Does that sound backwards? It wasn't for an appointment, it was just to get his fluids and supplies. He was tired, but I knew he needed to get his IV going, so I offered to go without him ... and I did. I think I was gone about 25 minutes. Once again, grateful for the shuttle. It was raining and a bit chilly so it's good Terry stayed inside. We need him to stay well. Getting sick right now could send him to the hospital, so we are being careful.

Terry does or has experienced all of those symptoms listed in yesterdays post, but most are somewhat mild. He is doing really well, inspite of it all.

I'll share a couple photos with you today:
The first photo is of the building we live in. See the blue? That is one section of the 4 sections that continue to the left. It is all one building, but different colors. We live in the lower right side. The windows just above the white building and below the large pipe on top of that building are our windows. Our part of the building is actually a gray color. (Two bedrooms and the living room.) Our deck is off to the right.
The second photo is the best view we have from our place. We can see only that much of the lake. There are buildings to block the view in the other directions. We do see a few boats coming in or leaving and a lot of planes coming and going. We can see the planes in the air above this orange building on the right of the photo. It's fun to see as we are sitting in the living room and looking out.

Even though it's a small view, it is so very different than the view we have at home. :) We are enjoying it.
We send our love to family and friends!
Have a great day!
And thanks so much!

Tuesday, April 27, 2010

Today's events:

Visits to the clinic today included a blood draw, appointment with the doctors and nurses, a visit with the nutritionist, and another stop at the pharmacy. Yip, more meds to add to our collection. All in all they say that things are going as well as can be expected. They expect the issues at hand and are doing all they can to minimize them. We are pleased.

Side effects or the "expected issues" include (but are not limited to):
lack of appetite
feeling full
taste changes
bowel changes (diarrhea or constipation)
weight gain or loss
blood counts going down, easy to get sick
confusion (mental)


Happy Birthday Brian! (L)
We love you!

Monday, April 26, 2010

Today was a stay at home/apartment day. Terry was able to rest and even sleep some. He has been doing a lot of reading too. The seminary students gave him a book - Volume One of The Mortal Mosiah. It's been a great read, and he has enjoyed it. He likes to read the first few pages where the kids each signed it and will continue to refer to it for a long time. If any of his students are reading this - THANK YOU!

Along with the daily routine of meds and IV fluids we also changed his bandage today. It was a first time for me to do it, and it went well.

I continued with scrapbooking and even felt comfortable to do some exercises today. I haven't done that for a few days because it just seemed too overwhelming with everything else going on, so it felt good to get back to that.

Sunday, April 25, 2010

We walked to the clinic for a blood draw again this morning. The weather was a bit nicer, but the hill seemed a bit steeper :) We do have one block with quite a climb.

It was an hour earlier than Saturday's appointment and we saw some interesting things today - one man sleeping in a sleeping bag in the corner of an entrance to a building that looks vacant. He seemed to be somewhat clean cut and "normal", making me wonder if he was kicked out of his apartment next door due to an argument or something, or if he really is living on the streets. It was the same place that we saw an orange peel and a tin of food the day before, so maybe he is a regular. I wanted to investigate, but felt safest just passing by.

On our way back from the clinic we saw a man climbing over the railing just at the overpass. Strange place to be, but his back pack was kinda dirty looking and we wondered if he too was homeless and sleeping among the trees and shrubs there along the side of the road. I am sorry for these people, and wonder what happened to make this there lot in life.

Where do these guys go when it is really cold? Do they have family? Does anyone know where they are? Would they want to continue their schooling or would they accept help finding a job? Is what I don't know more scary than what I do know about them?

Well, we got back to the apartment, had our lunch, got Terry connected to his IV pump - giving him fluids, and we listened to a few talks from General Conference Priesthood Session. We cannot go to church - no large crowds and no sick people. We can't go to the classes at the clinic either because they just don't want us to take any chances being around people who might have a cold or other illness. We plan to listen to all of the conference talks each Sunday while we are here.

There is one quote I'd like to share from Elder Oaks message we listened to. It reminded me of our family, and is this; "Our families faith is in Jesus Christ and is not dependent on outcomes."

All the messages were great, and if I didn't feel like I've already written a book today, I would say more about them, but another talk I really thought fit us well is Pres. Uchtdorf's message titled "Continue in Patience". It is awesome! We must learn to wait! and to Endure well! It reminded me of the message I gave in Stake Conference last year that I titled "Thank you for waiting!", and I feel gratitude to the Lord and to our leaders for that opportunity and the things that I have learned from it.

These messages from our leaders, who are true disciples of Christ, fill our hearts with peace and love. We have heard so many sirens since we have been here and we have seen sights we don't normally see when we are home. This big city life is all too real and it offers more than we might choose for our everyday life, but we are grateful to be here to take advantage of the medical profession that does bless our lives. And, we are grateful for the Gospel of Jesus Christ and for His Spirit that guides us and comforts us in time of need, and even in the midst of danger or chaos.

We visited with the kids at home and emailed Michael. We miss them, but are grateful for the advances in technology that allow us to be just a "click" away. It's been a good day and we look forward to more of them.

Again we thank you all for your love and concern, and for your kindnesses to us and to our family.

Saturday, April 24, 2010

We took a slow walk to the clinic today for Terry's blood draw. It got a bit cold as the wind blew, and we were glad to be indoors again. We picked up his fluids from the pharmacy and other supplies at the supply counter. No doctor visit today, just a simple lab.

I did some cleaning today, but it sure didn't take much time in this small place. (I'm not complaining though :) I'm also doing scrapbooking and laundry and have talked with a few of our children today. Terry has rested, is presently watching a game on TV and receiving his fluids. It seems that he should add take meds to the list too, as he has several medicines he takes every day. I have figured it out, and he takes meds about 7 to 8 different times a day, with a total of about 32 individual pills. That is not pleasant for someone who doesn't like taking pills. 12 of them are pretty large and smelly and terrible tasting, but the others are somewhat normal. There are a lot of instructions with these meds - some are to be taken on an empty stomach, some with no dairy within 2 hours of taking them, some with no grapefruit (that one is kinda easy) or fruit juice, some with food, some pills not at the same time as others, etc. It's a bit tricky at times, but we are getting it figured out, and finding a pretty good schedule that works for us.

It is feeling like we have had the "hurry up" part, and are presently in the "and wait" part of this procedure. We thought we had already had the "hurry up and wait" several times, but we might have been wrong ;).
And so, we wait ... happily, for this engraftment to take place. (Engraftment takes place about 10 to 28 days after transplant.)

Friday, April 23, 2010

Terry had a blood draw and clinic visit today. Things are going well. He feels somewhat week, but it's not too bad yet. They say that this is how it might be for awhile, and of course we realize it could get worse. They did suggest that the nausea will be controllable, so things are looking pretty good then.

He will return to the clinic for blood draws on Saturday and Sunday. They check this often to make sure all levels are where they need to be and then change medications and fluids to fit his needs.

We will continue to pump fluids here at "home" to keep him hydrated. That is in our schedule for this afternoon, as is resting, reading, tv, laundry, scrapbooking, and meals. No real excitement, but we can handle that at the moment - in fact, for today, we like it that way. When he begins to feel better we can try to add some more sight seeing.

I gave Terry his wedding ring today. He could not wear it during the radiation he had Wednesday and because his hands were swelling from the fluids he was receiving several days before that, we had to remove it. The best place for it, so that it wouldn't get lost, was on my ring finger, behind my wedding ring. I must say that I enjoyed wearing it and wondered if I would not want to give it back. But as I saw him this morning without it, I felt that I needed him to have it as a visual that he is taken, and is mine. I miss wearing it, but it means so much more when he does.

Thursday, April 22, 2010

Bed Time!

It's been a good day!
He has been able to eat and keep his medicines down.
Have a good night!

Continuing on...

Terry is up, has taken his meds, eaten a little, and is in the shower. So far, so good. Yeah!
We'll start pumping fluids after his shower. (They do not want him to get dehydrated.)

Dennis and MaryAnn returned from the clinic with good report. Dennis is free to go home, so they packed up and left. They have a few stops on their way home and we hope the traffic is good all day for them.

Dennis said that the normal number of cells they like to have for a transplant is about 5 million, but they actually used about 7.14 million. So, we certainly got enough :)
THANKS again to Dennis and MaryAnn for their love and support and kindness. We will miss their company, and will be forever grateful for their goodness towards us.

He had a good night!

Terry was able to get some sleep thru the night and is very sleepy this morning. (It's because I keep dumping those pills down him ;)
He hasn't had breakfast yet, and won't for awhile because some of the meds he takes require no food for awhile. We hope he is able to keep it down when he does eat.

Dennis and MaryAnn went back to the clinic this morning for a check up. We expect to hear good news, but we'll let you know.

Here's hoping and praying for a good day for all!

Wednesday, April 21, 2010


We are back at our apartment, but it isn't over!
We started the day with a blood draw. No pokes this time, they took the blood from one of the Hickman lines. Awesome!

We then headed over to UWMC (University of Wa. Medical Center) for the TBI (Total Body Irradiation). The radiation has to be done standing, though he may rest on a bicycle seat at certain intervals. The total time was maybe about 40 to 60 minutes. He was done and feeling pretty good.

We then went back to SCCA (Seattle Cancer Care Alliance) for the infusion of the stem cells that had been collected from Dennis yesterday and today. You can see them hanging in the bag above the patient :) in the pictures below. Terry is feeling pretty good here, though somewhat fatigued. Dennis says that he is feeling pretty good too.

Things were going well, we met with the doctors and nurses, and the infusion continued, but Terry began to feel terrible. He had an awful headache and was nauseated, and began to vomit. They gave him some meds, and then more, and more meds.
The infusion of stem cells was completed by 6:30, but due to his pain and nausea, we stayed longer. He was able to get some sleep and began to feel better, and his good color returned so there was hope of feeling better.

They decided that we could go. He was feeling good, but a bit groggy, so I pushed him out in a wheel chair. We got down the elevator and he was heading for the bathroom to vomit again. He came out and rested a few minutes and headed back in to the bathroom.

Dennis came to pick us up and take us back to the apartment. We are so grateful that they were here today to help us with that, and they did some grocery shopping for us, and a myriad of other good deeds.

Terry has been sleeping, except I have had to wake him up twice to take his meds, and he has one more time to take meds before the night is over. He kept the first meds down, and so far he has kept the second set of meds down, and that second set includes, but is not limited to, 5 nasty horse pills that always give him some strange and undesirable feelings. It is good to know that those nasty horse pills are for keeping the GVHD (Graft Verses Host Disease) from getting too bad.

We hope today is the hardest of all, but they did tell us that these feelings are common after TBI, and may last for about 5 days. We will follow the plan that is laid out for us, and we will come off conquerors!

By the way - T-day is Transplant Day, and today is it. It is much like a b-day, which I use in short for birthday. One nurse told us that Terry now has two birthdays. So, I guess that means his b-day and his t-day. How will we celebrate it next year, guys?

Tuesday, April 20, 2010

The Collection!

Here is Dennis getting connected to the apheresis machine today. Things went well and it took less time than predicted. They did mention something about him having great pipes for veins. We continue to hear things that help us see that things are turning out great, maybe even better than expected, and things that give us more hope for what is to come. We recognize this as answer to prayers and priesthood blessings, and faith of our family and friends. We are also grateful for good doctors and others in the medical profession. Thank you to all!
Dennis will give blood one more time tomorrow, and then Terry will receive it tomorrow night. We'll get a photo on the receiving end as well.
Terry's appointment today was a simple visit with the nurse to make sure we understand all that will be taking place tomorrow. We picked up his fluid from the pharmacy and headed back to the apartment.
For evening entertainment we decided to take it easy and stay in the apartment tonight, since tomorrow is such a big day. We had tortellini soup for dinner, brownies and ice cream for dessert, and then we watched a movie. The office has a few movies that we can check out, so we had some good old fashioned fun watching Belles On Their Toes.
All in all - another nice day!
PS - I'm sorry that the posts have been so late lately. The infusion doesn't take place until early evening, so we may not post until morning if it's really late. We'll see, but don't worry, we'll be fine!

I was being sneaky this morning.

Terry was just relaxing while I was fixing his tubing after his shower and I turned around as if to get more supplies, but got the camera and snapped a photo instead. I just wanted to show the line without the gauze bandage in the way. The upper end of the white tubing is where it enters his skin. The bandage has a clear center so that the entrance site is visible all the time. The yellowish square in the bandage is a gel pad, maybe for sterilization or maybe to keep the bandage from attaching to the tube, or both.
Dennis and MaryAnn headed over for another shot this morning. He will have his first apheresis this afternoon, and another one tomorrow. (That's where they will take his blood cells.)

Monday, April 19, 2010

Dennis continues to get his shots each morning. The "bellyaching" isn't as bad but the bones might be aching a bit more. Terry and I were never told that the donor would have any aches, and we are feeling sorry for him. We look forward to the day that his aching goes away.

Terry had one appointment today, and that was a pump class. We also stopped at the supplies counter and pharmacy to get his pump and supplies for it, and the bandages and flushes (etc.) for his Hickman. Our big rubbermaid (or the like) box is full of supplies.
The pump is the device that is used to pump the fluid through the lines. We do this ourselves to help him hydrate as needed, and we only do it when they tell us to. We worked the pump during the class, and have learned how to use it, but that first time on our own is going to be interesting. Luckily we still have our handy book full of information that will show us how to do it, step by step. This pump comes with it's own back pack that has a place for it and the fluid to connect securely to the bag, and he can carry it around with him wherever he goes and still get those good juices. We know that we start that Wednesday before the radiation.

Dennis and MaryAnn came back from their appointments and we had time before our appointments so we went on a little adventure. We took a ride on the "Ducks". We really enjoyed the sights and the fun guide on the "Ride the Ducks" tour. We were able to see, up close, some of the things we can see from the clinic window. We had heard about Ride the Ducks a couple years ago, but have never seen them. Thanks again, to Dennis and MaryAnn for a fun time. We have now experienced Ride the Ducks, and it really is fun.

The gas works park.

Apparently this is one of the boats used in the show The Deadliest Catch.

If you find the tallest building you can see on the left side of this photo above, and then look straight down, you will see the SCCA building (and the windows we look out each day). It is a red brick building with the black windows/white trim around them. (below that tallest building and to the left a bit more.)

We also walked thru the Experience Music Project and looked at the Space Needle, but we had to get back for lunch and Terry's appointment, so we couldn't stay long. We saw enough of the project, but we will have to go back to the Space Needle some other day.

After Terry's appointment, Dennis and MaryAnn took us to dinner at China Harbor. We do like Chinese food, we were with good company, it was an interesting building, and we were able to watch the action on Union Lake, so it was a nice evening.

After dinner we took a drive out to the Crittenden Locks. We saw two boats/barges pass thru (one each direction), an otter, and a tall bird :) (whatever it's called), and some pretty landscape. They have a botanical garden, and it is very aromatic. We didn't have time to walk around the gardens because it was getting dark and they were closing and we didn't want to get locked in and have to spend the night there, but we could see, and smell, a lot of pretty landscape around us. We didn't have our camera for this one, sorry!

Saturday, April 17, 2010

Super Saturday!

We had a wonderful Saturday.

It started out with Dennis and MaryAnn's arrival. They went to their appointments, spent a couple hours there and came back to the apartment. Terry had no appointments today.

Dennis had his first shots today - these shots are to help release whatever it is that they need into his blood stream, so that when they collect it, it will be ready.
Not long after their appointment, Dennis began a bellyaching. Yip! have you ever heard him bellyache? We heard it today a couple times. He was bellyaching in the morning and again in the evening, and though he was not as vocal about it other parts of the day, we are sure he was bellyaching all day long. Those shots are injected into his stomach and they do cause some discomfort and make him ache. They told him he might begin to feel like he has the flu. Poor Dennis - he will probably have 4 days of this. Whatever shall we do? He will be bellyaching all week. :) (What you really need to know is that he really just mentioned that his belly ached, one time, and he did so because he was just confirming what the nurse had told him would happen, but when I heard him say his belly ached I accused him of bellyaching and it just kinda stuck for the rest of the day. He really isn't complaining, he has been a great sport through it all, and we are grateful for his kindness and love.)
In spite of his bellyaching he drove us to the tulip festival in Mt. Vernon. We drove around, and around, and around, trying to find the tulip fields. We ended up at the Senior Center a couple times ... these 60 and older people must be attracted to places like that :).

We just had to get a picture of that building, especially since we were becoming so attracted or attached to it. We saw a lot of nice homes and farms and great buildings, but only a few tulips along the side walks. We visited and laughed and had a great time.

We drove some more and ... tada! ... we found the tulip fields, and more tulip fields. We got a few photos, but the photos don't show the brilliance of color that we saw as we drove around. The colors were beautiful, bright and crisp. It was a bit windy and rainy at times and we wanted to leave the dirt there instead of tracking it home, so we stayed in the car, but it was well worth our time. What we saw from the car was truly amazing - fields of beautiful, brilliant color.

On our way back to the apartment we found a place to eat - The Ram. It was our first time eating at that restaurant and we found it to be a fun and delicious place to eat and our great time together continued.
After dinner we searched for the grocery store that we thought was somewhat close to our apartment. We hadn't been to it, but had seen it on a map. We saw the space needle (which is only about a mile away from us) and a few other places of interest, and then we found this big QFC sign on the front of a tall building that looked like any other office building in the area. As we got closer we found that it indeed was the grocery store we were searching for, and that the store itself was located somewhat under ground. We parked in a parking garage and entered the store from there, going upstairs to get into it. We have found that these grocery stores in Seattle are rather exciting. We got the groceries we wanted and headed back to the apartment.
Now, I've left out a few of our "senior moments", but we did have a few of them, and in fact, I had to tell myself that "it was my turn to be quiet" because I had a couple myself. OH NO! I am guilty by association, right? I have learned that I should not do any more back seat driving in Seattle. It's not very healthy ... funny, maybe, since we have all survived, but I'll try hard to say no more. :)
It was our most fun day since we arrived in Seattle. Thanks to our great brother and sister for their kindness and love. We look forward to more senior moments throughout the next couple days. :)
It might be fun to get Dennis and MaryAnn's version of the day :)

Friday, April 16, 2010

WOW what a day!

We thought we had an easy day today - no appointment until 2:00, so we took our first shuttle ride to the grocery store. We sure appreciate the shuttle service because we are unfamiliar with the area and are not big city drivers. We are happy to be getting to know the area better and will eventually venture out a bit more on our own. We shopped at Safeway - a store we are familiar with, except this store is set up very different than any other grocery store we've been in. We walked up and down most of the isles and then had extra time so we decided to walk the parking lot. I know what you must be thinking - "Wow! The excitement!" Well, it was a sunny morning and it really was a nice walk around the lot, soaking in the sun and great weather. We returned to the apartment and had some time before our 2:00 appointment.

The easy part of the day was really over at 2:00 when we entered the room for this appointment. :)
We got inundated with information. It was info we needed to know, but there was a lot of it. It included:
  1. Replacing the bandage over the Hickman site. I watched and learned, and I think what I read makes a bit more sense now that I have seen it done. The bandage Terry had on was different than what he now has, and what he now has is exactly what I will be replacing, once a week. That's not too bad, especially since I have written instructions and a few pencil sketches to show me exactly what to do in case I forget.
  2. Next, the nurse flushed one line as I watched, step by step, then I followed her instruction and example and flushed the other line. At least there are no needles and I'm not going into his skin. I will now flush both lines, by myself, daily, except on blood draw days when they will do it there. Luckily I have written instructions for this too.
  3. We picked up his meds. Okay, we now own a drug store!!!!! We have a grocery bag full of meds and two pages of meds instructions (how much to take and when) and dozens of pages of regular medical information that comes with each bottle of med. He already has three different meds he is taking and now has a dozen others to his list. It's a tricky schedule to keep, but we hope we have it all figured out. We wrote notes on every day of our schedule, telling us what meds he starts or stops and what times he takes them.
This is only the beginning. On Monday we stop in for other supplies, like the bandages for his Hickman line, the pump and fluid, the saline and heparin syringes for flushing the lines, gloves, and ....
I suppose we would need a grocery cart if we got it all at once.

It was a big information day for us and we are glad that it was our only thing on the schedule today. The schedule is getting a bit more tricky as we try to fit all the meds in and get to where we need to be, even with those meds. I am so glad that I kept a planner all these years. I think it is helping me organize this mess of confusion.

Speaking of confusion. Here's a funny thought. When Terry was in getting his Immune Globulin infusion we could hear the receptionist answering the phone. We heard him say several times something like this; "Infusion, this is Joe!" (or John, or whatever his name was). Then one time I had to laugh a bit because it sounded like he said "Confusion, this is Joe!" I guess he was helping me prepare for this big day! :) Okay, maybe not, but it was kinda me! I guess you had to be there! :)

Have a great night!

PS - Terry is doing great. No pain meds needed after his surgery (the Hickman line placement yesterday). He has them to fall back on, but hasn't needed them. YEAH!

OH! Another PS - THANK YOU! for your letters and packages. We are truly blessed to have such awesome neighbors and friends! We are feeling your love and concern and the effects of your prayers. Thank You!


Happy Birthday to Shawna!
We love you!

Happy Birthday to Sherri!
We love you!

Thursday, April 15, 2010

Our first guests!

We had company tonight.
Dennis has been here and is coming back this weekend, so we just think he lives here :) We call the extra room in our apartment Dennis' room. And we are very grateful for his company and his sacrifice on our behalf.
So the guests I am speaking of are LeeAnn and Brian (Elaine's sister and brother-in-law).
Cool huh!
We also talked to Anthony and BrittanyJo and they shared their grade reports with us. We are so happy to hear such good news and we are pleased.
It's been a good day!
The only appointment we had today was for the Hickman line placement. We met another great doctor and his excellent staff. Things went well and we are now back at our apartment. Terry is resting and I am doing laundry and scrap booking. Washing dishes is also on my to do list, but will have to wait until I can make more noise. I'm having a hard enough time just trying to not talk to him so he can sleep :)

What is the Hickman line?
It is a Central Intravenous Line = a soft silicone tube inserted into a large vein in his chest, used to give the patient fluid, food, medicine and blood products, and also to obtain most blood samples without having to draw blood from the arm.
The insertion of the line is a minor surgical procedure, done in an operating room, under local and general anesthesia, and it takes about one hour.
His shoulder and chest may be sore for a few days, and he has a pain reliever to help combat the pain.

More detail about the Hickman -
The doctor makes a small incision in the upper chest near the neck, and one lower on his chest. Between these two incisions, the doctor will make a tunnel just under the skin. The catheter is inserted in the lower incision on the chest and is pulled through the tunnel and inserted into a vein by the neck. There are a couple stitches made to help hold things in place. A small dacron cuff on the catheter holds the catheter in place inside the skin tunnel, and is also a barrier which helps prevent bacteria from traveling up the catheter tunnel into the bloodstream.

X-rays show the tube inside his chest going through the vein and into the large artery at the heart. FYI- it's on his right side. Truly amazing. It is placed so that the infusions through this line will go right to the heart and get where it needs to be throughout the body in a more efficient manner.
Shhh! I was really quite and got a picture while he was sleeping. The small upper bandage covers the upper opening and the larger bandage below it covers the entrance area. The outer tubes are covered under his clothing, but the ends are visible (with the blue caps). The black cord around his neck is there to hold the tubing so the weight isn't hanging directly from his skin/chest.

Tomorrow is our class on how to take care of the central line. That is where I have to listen closely and understand it all. I don't generally learn very quickly or easily, so it's causing a bit of mild stress for me. I will continue to rely on the Lord to help me digest it all and help me through it, because I don't want anything I do or don't do to cause a problem.


Happy Birthday to David!
We love you!

Wednesday, April 14, 2010

Oh! -

The chemo treatments scheduled for Saturday, Sunday, and Monday are not needed. The treatments Terry had in January, February, and March did a good job of reducing his lymph glands and getting his blood count where it needs to be.

Transplant day remains scheduled for April 21st.
Today, in a nut shell:
At the clinic from 10:30 to 4:15.
Blood draw.
Visit with the MD and PA.
Immune Globulin infusion.
Things went well. They are taking good care of us and making sure we understand every needful thing.

The day is not over though -
Before bedtime, shower with a special soap (Hibiclens) to prepare for surgery tomorrow (the Hickman Line placement).
Read up about the Hickman Line.
No food after midnight.

Tuesday, April 13, 2010

Today we went to the University of Wa. Medical Center where we met with the doctor to discuss Terry's radiation treatment (TBI). He also got measured... yip!, they measured to fit him with "lung blocks" they will make especially for him to protect his lungs during the treatment. The TBI is scheduled for the 21st, the day they call "transplant day".

We also had a data review conference with the doctor and nurse, where we discussed the procedure or protocol one more time and signed the rest of the paper work. We do like these doctors and feel like we are in good hands. Things are on track and it's all looking good.

We continue to hear things that give us hope for a great recovery. Of course, we must actually get through each step to know for sure, but we are feeling good about what we know right now.

Thanks again for your prayers and your kindness to us here and to our family at home.


Happy Birthday to Chase!
We love you!

Did you know?
Lamont is his middle name. It is also his Uncle's name and his great grandpa's middle name.
We still have the craddle Grandpa Hill made for Chase after hearing his middle name.

Monday, April 12, 2010

On the road again!

We have all heard that a picture says a thousand words. Well, I forgot to take pictures this week end, so a thousand words will have to do…. Don’t worry, it’s only half a thousand words.

We had a few enjoyable days with our family this weekend. We were able to have Lisa, Skyler’s friend come visit and we enjoyed getting to know her.

We missed our family members who were unable to be here, but we know that they were in the right place at the right time for their individual responsibilities. We haven’t been able to get everyone together since 2003 after Gregory came home from his mission and before Brandon left for his. (That is when our family photo in the right column of this blog was taken.) It will surely be a long time before we are able to get everyone together again, but that is okay as long as everyone is following the plan that our Heavenly Father has for them, where ever they are.
We are grateful for the blessings of the priesthood and the temple that allows families to be together forever, if we live worthy of those blessings.

We are heading back to Seattle and will not be able to travel home for several weeks. We will miss the family while we are there, but we know that we will be where we need to be - each will be where they need to be. We are grateful that it is only temporary. This procedure is indeed what is keeping us apart, but it is also what will make it possible for us to be together for a greater amount of quality time here on earth. Truly this is a sacrifice for each of us, but I know that the blessings will come to each of us as we travel through this difficult time and remember who to turn to for strength. There will be difficult moments ahead, but with the help and guidance of our Heavenly Father and Jesus Christ, we can do hard things.

I know that the our Heavenly Father loves us and He will bless us. The Gospel of Jesus Christ is here to lead us and direct us back to Him and to help us find the greatest joy possible here on earth. As we follow our Savior and live His teachings we will find peace. May we each be found doing what the Lord would have us do so that we may reap the rewards that await the faithful.
“Watch ye therefore, and pray always, that ye may be accounted worthy to escape all these things that shall come to pass, and to stand before the Son of man.” Luke 21:36

I learned once that adieu is more than a simple farewell, it includes the idea of a blessing, so as we say good-bye again, we really mean adieu!
Until we meet again!
We are praying for you!
We love you!

PS - We will continue to update here on the blog.


Happy Birthday Jennifer!
We love you!

Saturday, April 10, 2010

Skyler is home!

Skyler has returned home after a great winter semester at BYU-I.
We look forward to a fun weekend here.
We'll have to post more on that later.

Friday, April 9, 2010

Update on Elder Michael James Hebdon

Michael was transferred to Omuta this week. There are about 35 people in their branch, 20 are children. His companion is Elder Semadeni, from Utah.
Here he is with a friend - I think this is at the Kumamoto castle :). They better be friends - don't want any samurai enemies!

About the Pete Gross House:

Hopefully you can read this sign to learn about how the House began.
(Maybe you can click on it to enlarge it. If not, you can Google it and find out more.)

I did add a couple more photos to the posts below if you didn't see the laundry and kitchen, you might like to take a look at the previous posts again. They may not be too exciting, but they are our home away from home.

Thursday, April 8, 2010

Today is the end of our week at SCCA.
The infusion went well and didn't take as long as they had scheduled. Terry was able to sleep through part of it and didn't have any adverse reaction to the immune globulin.
We are back at the apartment and he is resting. We plan on heading back home to Royal this afternoon. Our next appointment (unless the schedule changes) will be Tuesday morning, so we will probably have to head back to Seattle Monday afternoon.
This will be our last trip home during this procedure unless they give us a night off for graduation. They do say that trip is not as likely, but they are not yet ruling it out, however it would only be for overnight if it is allowed. We are keeping our fingers crossed and our prayers ascending.
Still no decision on whether he will have the chemo treatments yet, but that will be decided by next week, and would probably begin on Saturday.
Next week will include pre-radiation appointments, a data review conference, and the Hickman line placement. It will be the last week of step 2 in our transplant procedure.

Wednesday, April 7, 2010

Today's schedule wasn't as long as yesterdays. It began with a blood draw, then a visit with the doctors and assistants, and then a nutrition consult. Our day ended with a visit to the lab for flu shots for the "caregiver". OUCH! Okay, not even comparable to what the "patient" has gone thru, but still, ouch! :)

An appointment was scheduled for tomorrow for an infusion of Immune Globulin. This is to help him increase his ability to fight infections. This is done thru IV and will be started slowly to help prevent any undesirable reaction to it. We may be there for 5 hours or ???, however long it takes.

We are now back at the apartment, we have had our lunch, we are doing laundry, reading and sorting thru a lot of paperwork and trying to relax. Things are going well.

Here is our laundry room...

which is also our bathroom...

...sorry, I should have put the lid down before taking this picture :)...

And this is our kitchen. There is a computer desk to the left, dining table at the window, and the family room (photo seen on a previous post) is far right.

This photo was taken from the entrance hallway.

Tuesday, April 6, 2010

Back to school?

Our children went back to school yesterday, and today I feel like we did too.
We started the day with instructions about filling out an Electronic Self Report Assessment (ESRA), and then filled it out.
Then we had classes about Food Safety and Managing Care At Home. It sounds like I need to make Clorox my best friend - yuk! Every day I'll have to mix up a nice little mixture of bleach and water, in a spray bottle, and use it to clean up every time I cook.
Our last stop was quite different and new to us, an appointment with Radiology for a MUGA scan, which is a nuclear medicine test to evaluate the function of the heart ventricles.
Our day at school (SCCA) was from 10:30 to 5:30, and we had no lunch break.
We are amazed at how tired we are at the end of the day and always look forward to a relaxing evening, but we have so much to read and digest. Maybe someday we will have it ingrained in our brains so that the paper work will not be as necessary.

Wednesday starts at 10:30 for us again, but we are not sure what the rest of the week brings. We will be checking in with our scheduler tomorrow.

Monday, April 5, 2010

Back in Seattle again!

It was so nice to be home for the weekend. We enjoyed our Easter Sunday, birthday celebration, visiting, and conference sessions with the family.
We got up early this morning and completed our packing and loading the car, woke the kids and had family prayer. Then we headed back to Seattle and the kids got ready for school. The daily routine will be changing for all of us, but I know that we can each do what we need to do to make each day a great day, because with God, all things are possible. I feel the love and comfort and guidance from our Heavenly Father and His Son, Jesus Christ.

Conference came on an excellent day for us, Easter, and thinking about Him and what lies ahead was definitely a blessing in our lives.

The roads were good for us this morning and we made it back to Seattle to our apartment with enough time to unload a few things before heading to the SCCA clinic. Today included a dental visit and instructions about the Hickman line Terry will get later and info about the meds that he will be taking during the course of this process. There are several pages of info that we keep adding to an already large notebook. It just keeps becoming more and more real, and that is making me feel a bit more anxious.

All Is Well!

Sunday, April 4, 2010


Happy Birthday to Connor!
We love you!

Did you know?
Connor is #7 in the family and we thought he was going to be our caboose. He's going to be driving the big city this year, since it is his 16th birthday.

Friday, April 2, 2010

We are home again! YEAH!

Early this morning we went to the SCCA for a blood draw and bone marrow aspiration. We were surprised that he had to have the bone marrow taken from both hips, but he did well thru it all. It is not a very pleasant procedure, but we are grateful for the good people that talk him/us thru everything that is taking place, and for how kind and thoughtful they are.

We headed home and had to stop for about 2 1/2 hours before coming over the pass, because of accidents that needed cleaned up. There was snow and wind and it was not nice weather, but we made it thru that too, and we are enjoying being home again.

Saturday is already so filled up, so today I am trying to collect things and pack for our return to Seattle, early Monday morning. Terry is going thru the mail, visiting, and trying to relax and recover from his appointments this morning.

Dennis headed home and will return to Seattle around the 17th of April.

We feel at peace and we know that all is well.

Thursday, April 1, 2010

More good news!

We have learned that Connor passed the drivers test today, so he can get his drivers license. YEAH!

Our Second Day!

Our second day at SCCA is complete. Today was full of "hurry up and wait" appointments. We are pleased with the service we are receiving here.
We are having some interesting experiences. Terry had a pulmonary function test first thing this morning. He sat on a chair inside a glass box and blew in and out, into a tube, with his nose plugged, just as the nurse instructed him. Results of that test made them happy. He had a chest x-ray, an EKG, and consultations with the finance person, social worker, and doctors. We heard a lot, some of what we already knew, and signed several pages of paperwork.
We had lunch at the Bistro inside the SCCA, which consisted of a huge piece of turkey strata and some asparagus. The asparagus was the best, but the other was good.
We are happy to be back to the apartment and are now relaxing after our dinner.
The great news for today is that we only have two appointments in the early morning and we should be home around noon. We look forward to being with our family, watching general conference, and enjoying Easter Sunday together.
We will be back for more at the SCCA on Monday morning.

PS - The social worker (who meets with every patient) asked about our support system. We told her that we had the best support system, even greater than could be imagined. That made her happy, but she couldn't be more pleased than we are.
Here is a big Thank you! to our awesome support system.