Day 40!

We have been here two months now, and have two months left before day 100. Some things have gone better than we thought and other things have been not so smooth, but it's all good because it's all necessary for the hoped for recovery.

It was a wet walk to the clinic and back this morning, but this afternoon the sun was out and it was warm and beautiful for a walk around the block. We walked thru a little park and a community garden, then this evening we watched Support Your Local Sheriff.

We hope your Memorial Day was a good one!

Day 39 - Another full day!

The blood transfusion went well. There were no problems and we were done earlier than expected. We learned Saturday that his count was at 26, and that is when they do a transfusion. After his blood draw today we learned that he was at 24, so we were glad to have this help before it got any lower. Terry began to feel slightly better by the time we were done and we look forward to some better days - hopeful for them anyway. We were on our way home at 3:20, and ended up walking in the rain. Good thing it was not pouring down hard, we were wet enough as it was.

They have a nutrition room on the infusion floor for the patients who are "stuck" there during meal time. It is a small kitchen like room, with no dining area. The refrigerators and cupboards are filled with drinks, snacks, soups, and other microwavable foods. So for lunch Terry had macaroni and cheese, jello, and chocolate milk. I had a yogurt, peanut butter and jelly sandwich, and milk.

We were done so early that my mom and dad were able to come to the apartment to visit instead of to the clinic. It was good to see them. We really are doing fine here, but being over here with nothing familiar is a bit "cage-y" feeling so seeing familiar people occasionally is really a great thing. We don't have be be caged in to enjoy their company though - the family looks forward to seeing them Friday for Chase's graduation. (Thanks for coming mom and dad! We love you!)

After their visit we emailed Michael and talked with the family at home. It was late and I didn't want to spend more time posting. I am actually writing this early Monday morning, but changed the time so it posted on the right day. But having already gone through the night, I can say that Terry didn't have a good one. It actually was difficult for him to lay/sit on that bed during transfusion too, so it wasn't just the night that was a bit tricky, it had been coming on for awhile. Too many aches and pains and discomforts, and maybe too much going through his mind too. We'll hope and pray for better nights, as well as better days.

Today!

It's been a long, full day for us today. Much of the day was spent on the phone with several people (and one person several times, right Anthony? It was fun talking to you! Those martians kept interrupting though didn't they?).
Much of the day was spent cleaning, doing laundry and re-cleaning because I gave Terry a hair cut, which made a mess of things. His hair looks nice but he sure doesn't have as much hair to cut after loosing so much of it. Lucky he had so much to begin with.

It was raining when we got up this morning and we thought we'd need our umbrella for sure, but we never had to open it. The rain stopped and we were dry both coming and going to the clinic for blood draw, though there was just a bit of "misting" along the route coming home, but that was along the sidewalk with the highway above us and to the left, so maybe it was really just road spray :).

But, what you really want to know is how Terry is feeling. He is feeling weak. The nausea is decreasing, but the energy is too. We were informed this afternoon that his red cells are too low so he is scheduled for 2 units of blood tomorrow, and it could take up to 5 hours to receive it. Therefore we will spend much of our Sunday in the infusion room. We hope this helps him feel better and more energetic. It was good to learn how long it will take so that we can drag along some books or something to do during the transfusion. Elaine's mom and dad plan to come visit for a couple hours, so that should help the day go faster.

HAPPY BIRTHDAY!

Happy Birthday to BrittanyJo!
We love you!

Did you know?
BrittanyJo's name was in our family for 14 years before we got to actually use it. We told our boys that if they ever met a BrittanyJo they just had to marry her, because we were sure we were supposed to have one in our family. When our very own BrittanyJo was born we released our boys from that responsibility :)

Rainy days!

We went to our blood draw today, but we took the shuttle because of the rain. We hear that it will probably rain all through the weekend, because that is what happens here on Memorial Day weekend. So, we will probably need our umbrella for the walk Sat., Sun., and Mon. because there will be no shuttle. Maybe we'll dodge the rain. ??? We'll head back for hydration later today, walking if it's clear and riding if not.

We were at the counter checking in for blood draw when one of the gals came out to get a patient, saw us there and said said, before getting any paperwork, "I'll take Terry back." It was interesting that she could remember him and his name with all the patients that come through daily, and there are a dozen people doing the same job, so we never get the same person all the time, though we have had some of them more than once. We have talked about how this gal takes it personally. She has even mentioned that we will want to come back to see her to tell her how Terry is doing when he comes back for his one year check.

These people working here at SCCA cannot and do not know all things, but they sure do a great job with what they do know and can do. We are so grateful for them. This is not only a medical facility, but is also a research center. They are continually learning. We are grateful for what they have learned thus far, and hope to help with what they are learning for the future so that eventually, other patients can benefit from it.

There is a lot going on at home and we thank everyone who has shared part of their lives with our children, helping them in any way. Even things that seem small and simple are to us, quite grand and wonderful. Thank You! We feel your love as you share with our family, and we are grateful.

We were hoping to get special permission to come home for graduation day, but we are finding some concern with Terry's counts. We picked up our new schedule today, and found that we are scheduled through Friday of next week. This doesn't necessarily mean we will not go home, but it does make us believe that we will not be going early enough to be there for anything other than graduation. We will have to wait for our Wednesday appointment to know for sure. We are keeping our fingers crossed! (Okay, not really, but we are hoping and praying that things improve in time for us to go home for Chase's graduation.)

HAPPY BIRTHDAY!

Happy Birthday to Linda!
We love you!

Just another day!

We went to a blood draw this morning, stopped at the pharmacy, got our new schedule and had a short visit with our nurse. There really is no news for today that is different than yesterday. Terry continues to feel exhausted and yet needs to get in some exercise.

We came home from the clinic and he rested and slept for awhile and then we went to the grocery store. We had been putting that off since Saturday and were finally out of milk and eggs and yogurt and ... we needed several things. So, walking the isles of the grocery store was the exercise for the day. Not enough for what they want, but enough for what he wants. The weather is not cooperating and we don't want to get wet so we will probably wander the halls and take a few stairs later today, but right now there's a game on!

Here's what we learned at todays clinic visit:

- "Things are going well."
- Kidney function is better, almost normal.

- Some concern still with the liver and spleen.

- Remain at 1 liter daily hydration. (This is the IV fluid, which is in addition to his drinking and eating amounts.)
- White blood improving, is at 2.4
- Neutrophil improving, is at 1.64
- Platelets are good.
- CLL improved from about 5% when we started to about 2.7%. "But it's still early!"
- Chimerisms - "Well engrafted at this point." (this is where it tells us how much is Dennis' vs Terry's blood) 70% Dennis and 30% Terry. "It was a slow start, but this is a good number. We usually like to see it at 50% or better at this point, so we like these numbers."
- Red cells are "being chewed up faster than normal" and cause some concern. They are looking into this and trying to figure out why this is happening. This is usually a concern for patients who have a donor that was not a perfect match, but we had a perfect match, so they are wondering about this a bit. This necessitates more blood draws - which meant we went back to blood draw today, for a second draw, and will have daily draws until it is no longer necessary. Blood transfusion could be in his future if it does not improve itself. This count actually explains his lack of energy. His get up and go, kinda got up and went ... without him.
- One more medicine is added to the mix. But only two days a week. That is only four pills a week more than now, so that is good for Terry, but it makes things a bit more hectic to schedule and remember.
- Next bone marrow aspiration at day 56.
- More walking! "Get out more!" Just like they told Fival - "Keep walking!" They want Terry to spend some of the energy he doesn't have! That's harder than spending money you don't have. But, we can do hard things!