Day +9

Today was a bit disappointing to start out with. The lab computer system was down, so it was well after 9A before the results were back. Brians counts havent budged at all yet and he had to have more platelets today. Ugghhh. We were both not too pleased, and we are itching to get out of here. He is set up to be discharged to the Twice Blessed apartments on Tuesday, if his counts come up. IF being the key word here.

The highlight of our day was getting a visit from John and Sue and Jeff. They hung out with us and we can always count on John to have fun board games. I could tell that Brian was tired, but he really enjoyed their company. He took a short nap while John, Sue and I went to get food. Sue treated me to Freebirds. Bless you Sue for sparing me from hospital food. Brian still can't eat much, but he did truck on down to the family room afer his nap and we played another round of Torchstone. Sue left us a game called San Juan. Brian and I have it at home. Its one of the few games that's actually fun with two people.

I'm a little nervous about Tuesday. Brian's dad is coming, which I really appreciate, but I hate the idea of being at work and leaving him to figure out his way around. The streets around the hospital are typical downtown one way streets. I've been debating about calling in, but I can't really justify calling in for a "possible" discharge. Brian says he doesn't think he'll get out of here by Tuesday. Truthfully, Wednesday works better for me. We'll see. Its not my plan or my schedule. I will try really hard to do things according to God's perfect timing.

The kids seem to be doing well. Mom said that Emi started calling her mama and she keeps correcting her. Talk about breaking my heart. She knew me when I went home but that was over two weeks ago. Tony got his woulf badge tonight in cub scouts and Denise was gracious enough to take him for me. They called afterward and Tony and Angie sang us a song they made up about us coming home.

I can not wait for that.

Day +6

Well, today like most days was a mixture of good and bad. Brian has been pretty "lucky" in that he only has a few side affects according to his Dr. The bummer is that he is going to have to deal with them until his counts start to go up. His Doctor said that he thought he'd get out of here next week. Praying that happens. We are ready to be home with our kids. We've both said that we are never eating hospital food again. I get it here and then again at work. Ugh. I did pick up a few snacks and theres always pb&j.

Brian's counts were really low today. WBC <100, HCT 24.5, Platelets 6K, TP 0, ANC 0. For the nonmedical readers, Yikes. Well, he got blood and platelets today and was kind of nauseated all day. We didnt care for his nurse today. She was a no it all that spent all day talking down to him. Funny, Brian says "I don't care for her". Brian likes EVERYONE. But, thankfully, we like our nurse tonight. He's running a bit of temp tonight.

Angie and Tony are going on a GT field trip. They get to do a tour of the TV station as part of their study of broadcasting. Over spring break, mom came to Fort worth to get a play set from a friend at work. It took up my dad's truck and stock trailer. Mom said that Aiden kept asking to put it together every five minutes. So, Mom, Aiden, and Zachary pulled the twisty tube slide out and she said that the two boys and Emi played in the tubes forever.

The Doctor says that we are getting out of here next week. Praying this happens. That would be one step closer to home.

Day+3

For those of you worrying, I don't have much to post. From my nursing standpoint Brian is doing pretty well, considering. His spirits are good and he's been walking at least four times a day. They put these stars up for every transplant they do and we are anxiously waiting for his to go up. He's had a couple of gi issues apparently this is common because the chemo kills the mucosal lining. He feels like food sticks sometimes and can't taste very well but he makes himself eat. We've gotten close to another family here. The husband/father, Ed has been on a vent for 21 days now. His transplant went well, but then he got an rsv infection. I continue to pray for them every day. You can tell they are a loving family. I mention this because their son who has to be in his twenties, offered us a tube of diaper rash cream. How funny is that. He said he doesn't have a Colon so he's tried every brand and he orders one by the case. He says he offers it to everyone he knows. Too funny. They are a God loving catholic family. The wife said that they went to Hawaii for 5days before the came here and she is thankful for that time. She also says she knows that Ed is in gods hands and that she's just along for the ride and that he just wanted more time with their children. Not so different from us huh?

The nursing staff are nice but they don't do much for Brian. This should irritate me,but frankly I'd like to keep it that way. We don't see too many other pts on our walks so I'm assuming that Brian is doing well. A famous football players son is here. In the interest of HIPPA I won't say who, but I will say that he didn't seem be MEAN at all, and had some encouraging words for Brian when we were out walking last night. The men can all tell you his stats, but to me he was just a nice man battling the fact that a son he loves has leukemia.

Talking to the kids tonight was good. I talked to Angie for a long time and I hope we always have that. I love hearing all the tiny details of her day, and I can always count on Tony to crack me up. Zach, oh my zachadoodle, what can I say? I even enjoy his difficultness. Brian is known as the guy that has five kids. Even here, we endure peoples shocked comments. Maybe it makes some feel even more pity, but I wouldn't change a single thing. Brian's second birthday card says "my children are my greatest gift". When the secretary asked him to tell her about himself that was the very first thing he said. They are the reason that he gets up and endures this every morning and as our new friend says, "I'm just along for the ride"

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well Brian got his stem cells. We will see if the picture comes out in the blog. He got two little bags and they looked like dark blood. They came to the room in a styrofoam cooler and one nurse thawed them out while another nurse pushed them. Kathy the occupational therapist came in and got the room ready. She rubbed his feet and she also used an oil called harmony. It was lavendar, sage, vanilla, and I forgot the fourth thing but it had a nice smell. She said the plants are grown by a lady who then extracts their oils and supplies just Baylor. The chaplain came in and blessed the cells which was nice. He had it on green paper with Celtic symbols in honor of st. Patricks day. The verse I liked was:
proverbs 3:8 may divine love and wisdom be healing to your flesh and marrow to your bones.

The dr gave Brian a "birthday" present and card and the unit secretary made Brian a card. I emailed her a few pics and Brian told her a few things he liked. There's the kids, me, John elway and the broncos, a campfire, and a freebirds burrito. So funny. We met a girl here whose dad is a patient here. She's a fellow aggie and her and Brian chitchat alot. He was telling her that's what he was having when he got out of here and that there's a freebirds 6 miles from here. Today she told us she was going and she already had her burrito made in her head. Lol.

Brian's sleeping off his meds. He got flush and a little queasy when the cells went in, but he really did great. Now we just wait for them to work. I'm so proud of him. I can smell the cream corn though. It's pretty strong. Another pt said he never smelled it, Brian tasted it a bit.

Today was a calm boring day. No fires to put out. Boring is good. A volunteer came to pray with Brian. He said he had a allogenic transplant in 2004. He was this soft spoken indian man. He said his children were 4 and 7 at the time and he and his wife had no family here because he had come from India to work as a nurse. His soft voice changed as he prayed with Brian and if anyone could actually drive cancer from someone I felt he could. It was a strange and amazing experience.
Bag 8 is going now. One more tonight. Nine more to go.

Day -4

Let's see, I feel like I should write, but it's more of the same. This thing I'm sleeping on is not too comfortable after an exhausting hectic 12 hours of work and a one hour car ride---but keeping perspective, after alot of walking and yoga stretches I'll feel better this afternoon while Brian will still feel blah. He's getting a total of 18 bags of chemo, so far five down. This is the first time I've been with him when he was getting infusions well I mean this relapse is. The first time around, I was 5 months pregnant when he was diagnosed so my dad and Katie took Brian to his chemo appointments. My mom was insistant that I not be in the room and since she is a nationally certified oncology nurse I listened. When it's running, I can smell it and my mouth tingled. Then I start having joint pain. Weird. So I make excuses to get out for a few.
Brian was really nauseated last night. He had already had 12.5 of phenergan so the nurse gave him the other half. That is when he learned he couldn't have the whole 25. He was so tired but the medicine gave him uncontrollable twitches and muscle jerks. So he'd nod off and his leg or arm would fling up in the air and wake him up. After that wore off he Slept ok except for getting up to pee. His iv fluids are at 275 which is pretty fast.

The kids seem to be hanging in there. Having to raise them while we are gone has raised some challenges for my parents. I know my kids are in good hands, but I still continue to pray for everyone at home anyway. My Zachary is a button pusher and the stories my mom tells me crack me up. My mom gets so frustrated. Brian says that he can't figure out why I'm the one person who's authority he respects. Maybe it's my scary mean voice I use haha. It's going to be a rough little bit when we get home I'm sure, but I'm ready for it. Hoping Brian continues to do well. If he does then I'm going home to see the kids Monday. Then, be back for the stem cell infusion Wednesday.

Mom signed all the kids up for softball/baseball. I think Tony moves up from tball this year. Have no idea how we're going to get them to 3 different games but the season isn't too long. Last year angie's started and ended before the boys so that helped alot. Her and Brian were our tossing the ball around some before we had to come here, and she got her aunt pammie to take her to get a haircut. It is short but she says she loves it. Last year they rotated the girls through alot of different positions and Angie finally ended up as catcher. She did pretty good, but roasted in the get up.

Well I'm rambling about nothin. Post more later.

Well today Brian checked into the hospital, so far not much to add. He got a picc line which he was dreading, but it's done. We got a little tour of the unit did some paperwork, but not much else. Brian's radiation reading was 2.4. They have precautions to follow until his numbers get below 2.0. Not anything major though. He's supposed to start his hydration tonight and chemo in the morning. Hating that I'm not going to be here. They said that this chemo is alcohol based so he's probably going to be tipsy tomorrow.

The room is how do I put this nicely??? Well, it's ugly. Looks like a yucky old icu and it's pink:( good news is the garage is directly under so it's easy to get in and out of here. I know I nurse here. She used to be a tech on my floor at Harris so that's nice.

Brian was a little irritated with me cause I made a big deal about his sski drops. They were going to make him get a new bottle from "Baylor" because it was policy. He only has to take them for 9 more days. The pharmacist made a huge deal about not being able to trust their purity blah blah blah even though they came from their outpt pharmacy on the first floor. So rather than fight about it I let it go, and guess what "Baylor" pharmacy doesn't have them in stock so he HAS to take the ones he has.

We met someone in admitting that's having a unrelated donor transplant for leukemia. She said leukemia patients can't use their own. Her donor is in Germany so there's been alot of beurocracy involved in getting her cells here. I could tell she's scared. Praying she does well.

Tonight is our last night in our little apt here at twice blessed. Tomorrow we check into the bone marrow unit and Brian gets a picc and they'll hydrate him then start chemo Thursday. I'm going to work and I'm not liking it, but I plan on coming back here when I get off. Traffic was horrible tonight when we drove the perishables over to the rv in fort worth and the gps no likey the mixmaster. So, I'm dreading the drive:(
It's interesting trying to parent by phone. We've made the comment many times that we have no idea how military families do it. We get teary every time my sister posts a new picture of the kids on facebook. This week I helped my daughter with homework by phone. Thank goodness for camera phones. I have a smart mom, but she isn't as helpful with language arts:)
anyway try to post when I can. I'm very thankful for emails right now

Brief update

Well I have downloaded two different blog apps and sadly neither worked. So this blog will be brief. Brian is going great. He had his therapeutic dose of bexxar today . They measured how much he radiating and it's 11. A 22 requires a hospital stay so we get to hang out here in the twice blessed apt. at Baylor. He checks in to the hospital Wednesday. He has precautions he has to follow to protect me. There's a six foot rule, including separate beds, he has to has his hands every hour and triple flush. Starting tomorrow he has to suck on a lemon or sour candy every hour to help squeeze the radiation out of his salivary glands. I should mention that Brian hates sour stuff!! But oh well, beats and inflamed gland.

Tonight I read two chapters of the 2nd 39clues books to Angie and Tony. It was rough getting started but we got the hang of it. I was so thankful to get to do at least some of our routine with them. Talking to the kids was great tonight. I had them on speaker and zachy told his dad that as soon as he got home he was going to give him the biggest hug ever. We both were teary. Then I asked, what about me, and in true zachy form, he says, oh fine, I'll give you one too. We cracked up. I love them and miss them so much.

It's nice to know that so many are praying. If you're one of them, please keep it up.