Tuesday, September 27, 2011

MOndys I get two whole hours to myself. So, today I am spending the first part blogging. Then I'm going to read a little. Yeah, yeah. I know there are dishes to be done, laundry to wash, etc, but that stuff is always there. It NEVER goes away.

Things are still not finalized with Brian's treatments. As you know, his biopsy was positive for lymphoma. We can look at this lots of ways. We can say the transplant cured everywhere but that spot, or we can say the transplant now has this cancer behaving in a usual way. Brian has an indolent for of non hodgkins lymphoma. B-cell follicular to be exact. These cancers are supposed to be slow growing, you wait and watch and treat when necessary. But they are persistant little weeds and are hard to cure. Boo, but the good news is there are lots of treatment options.

In the past, Brian's cancer has not behaved this way. It has been very aggressive. The first time he was diagnosed, it was in his neck, chest, abdomen and pelvis and very large. He had fluid in his lungs and a blocked off kidney. The second time, 18 monts later, it was very large in his chest and wrapped around his spine.

This time, 18 months after transplant, it was about quarter sized and in his groin. He had surgery to remove it, and he will continue his Rituxan and do radiation as well. He needs at least another week for the incision to heal, and the radiation oncologist is waiting on the cd of the PET scan to arrive by courier before she can make treatment recommendations. I would really like to know, but that is just because of my constant compulsion to plan. I need to plan my work schedule, someone watching the kids etc.

Monday, September 19, 2011

The kids have finished up their 4th week of school, and I still don't have a routine down yet. That's the goal for this week. Missing a whole week and then having a whole week of make-up work threw me off. Ok, to be fair it threw us all off. We started out last week pretty well, and then Brian and I spent the end of the week in Dallas. Not sure if we will get results this week or next, so maybe my plans for getting a routine down will be shot this week too.

Brian did pretty well with his biopsy. He was really sore Saturday so we went ahead and took Sunday off from work, but he went this morning. He incision is neat and clean so I don't anticipate any problems there. Not sure if I will have to miss work this week to go with him. That part isnt too big an issue for me, but I will have to coordinate someone watching the kids.

Bragging a little, the kids havent had a tardy yet. I don't know why I didn't think of it sooner, but I'm not waking Aiden and Emi up in the mornings. They are sleeping in and then i just carry them sleeping to the car, pjs, blankies and all. I can focus on the older kids, and not have to fight with the little ones who aren't ready to eat, get dressed etc. Angie has to be there in time to turn in her homework to ALL her teachers before the bell rings. Interesting. Is this so they can't cheat or work on it in earlier classes? Hmmm. Tonight is open house. I have no idea how I'm going to see all their teachers. Brian is going to meet me there, and we will divide and conquer.

Meal planning and budgeting again. I signed up for some extra shifts next week and the week after. Ok, maybe its pointless to even be thinking about a routine, but it will help us get back on track after our trip and Brian's treatments.

Looks like it will be into the second six weeks before I start working with Aiden on reading. I have mixed feeling about it anyway. He seems ready, but I'm not sure that being an early reader does a kid any favors. I've focused on reading alot with Zac, I think because he doesn't really like it, and I want him to. Maybe I should have been focusing on filling him with facts, math skills etc? So, that's what I'm doing this year. We are doing required reading and spelling etc, but then its just fun learning after that. Overall, I think he is doing well with that.

Wednesday, September 14, 2011

Cooler weather

We are getting into the swing of things after missing a full week of school. The kids had tons of make-up work otherwise I would have blogged about our trip sooner. Really content with the direction of my kids education right now. They are happy, healthy, and well adjusted. Aiden is doing well with pre-k, and Emi seems to love Tuesday school. Going full force with activities as usual. Zac is playing flag football and they won their first game 20-12. All the kids are in gymnastics on Wednesdays, and Angie and Tony are taking music lessons at Howard Payne. Angie is continuing with voice, and Tony is taking piano. Tony's teacher says that he has good natural rhythm. Lol. His whole world is a musical. Angie is in 4H this year, and she is doing the food and nutrition because they have a team event similar to Chopped or Iron Chef.

We left on Tuesday the 30th and spent the night in a hotel close to the airport. Our flight left at 7:50 in the morning. Mom and Pam had to hightail it home because Pam forgot her passport. They got back to the hotel in time to shower and head to the airport. It was funny because Pam kept telling everyone not to forget theirs, and she brought her fancy passport book, but not her passport. The kids did great on the plane. Aiden and Zac sat next to each other and played and giggled. Pam was super grumpy, but they weren't bad. We did separate them on the way home, and they both slept. Tony was terrified to fly, and I was seriously wondering if I was going to have to sedate him. He kept saying things like "I'd rather crash and burn up after I graduate from High school," and "if we make it to seattle" As we took off, he said "remember that time you tricked me into going on the roadrunner at fiesta texas? well, its like that only not as scary. I bet I've matured enough to try that ride again".

We got to Seattle about 10:30 in the morning, so we headed over to the Experience Music Project, EMP. This place is just cool. Brian was super excited because they had a battlestar gallactica exhibit. Brian and my mom used to have a date every Friday for sci fi Friday to watch it. The exhibit talked about how playing different music with the same scene invokes a different emotion. Since we had already paid for parking, and the Space needle was next door, we went up. Really, its not a big deal, and doesn't take very long, but my kids were super excited about it. After that we drove to Bellingham, Wa and stayed the night. The kids swam in the pool, then we bought a few groceries to take across the border, and went out to eat with John and Kristi. We went to some restaurant called Billy Mchales. The food was delicious. Angie wanted the seafood chowder. I normally am not a fan, but it was super tasty. It had salmon, scallops, shrimp, potatoes, and the ingredient that makes anything taste good....bacon.
The next morning we ate breakfast outside on the patio. Seriously, I could have sat there forever. It was in the 60's, there were birds, flowers and these big huge trees.

But, we had a border to cross. It wasn't far to the border at all. Less than half an hour. The peace arch is no longer there, but that border crossing is beautiful. We drove to tswassen and boarded the ferry. It was about an hour and a half to the island. John and Kristi were 2 cars behind us. We had reservations for the ferry, but they put us in an overflow line, and said that we might get on an earlier one. Well, we were the last car on. The ferry was literally pulling out before we even got out of the rented 12 passenger van, leaving our friends to catch the next one. The ferry really is a neat experience. its very comfortable and you can sit inside or outside. There are cafes, arcades, a play area for small kids etc.

We got the the island and the drive to Tofino was longer than we expected. The island is wild. Dense trees, mountains, lakes, streams...amazing. You really get the feel that maybe there are things yet to discover and explore. We stopped and walked around this place called cathedral grove. It was breathtaking walking around 800 year old Douglas fir trees. We drove onto our house we rented. It is definately the way to go. We had a hot tub, three bedrooms and 2 baths plus a full kitchen. Tofino is a tourist place, but they weren't overly friendly. Most places were cash only, but took American money.

Friday we went to our friends wedding on Chesterman beach. Brian and John went over early to hang out with Jack and Kristi and I walked around town and went to lunch. Everyone wore thin strapped dresses to the wedding. It was 60 degrees that day on the beach, I wore pants:) Kristi and I arrived to see John and Brian sweeping the beach and arranging chairs. It was nice even if I thought it was comical. There reception was at their rented house and it was nice. They had a brunch the next day and said we could bring the kids. We stayed maybe and hour and a half and then walked down to the tide pools and looked at starfish, anemones and hermit crabs etc. Then we went to some ladies house and bought fresh live dungeoness crabs. She killed them for us and removed the lungs. My kids were super curious about that and wanted to watch. I went outside at the first crunch. But we took them home and had a huge crab boil.

Sunday we went out on a boat and went whale watching. We saw an eagle, puffins, Stellar sea lions, which are the largest in the world. I'm talking massive. Then we saw a humpback and grey whales as well as a few harbor dolphins. The boat took us to the hot springs and we hiked through the forest maybe a mile and a half of boardwalk, lots of stairs. The hot springs were beautiful. THe hot water bubbled out of the rocks and mixed with the cold ocean water, plus the view! Well, may legs were jello walking back, and Emi was super tired but it was so worth it. On the way back we saw Orcas! Mommas and babies. One even breached for us! Not something they normally do in the wild, and they are transient, so they are only there every few weeks. Such a lucky day.

Monday we drove back to Seattle. As we were leaving we saw a bear and some otters swimming on the lake. It took us the whole day to get there. We stayed at the Comfort Suites in Tukwila and it was lovely. We had two queens, a king and a sleeper sofa. Plenty of room, and mom, dad and pam had their own room. They had a really nice indoor pool, good breakfast, and they had an afternoon snack from 5-7, salad, fruit, wings, and muffins. There is so much to do in Seattle, but we got to see the aquarium. Highlight for me, the kids got to ask a diver questions and Aiden asked her how an anemone eats. She said "here I'll show you," and she fed it a fish! It slurped it right in. They had several touch tanks which was cool. We had a delicious lunch at the waterfront and walked around some. There are lots of people there and my anxiety was building, so we didn't get to see Pikes market. Another time we will have to see them throw the fish. But, we went to the museum of flight. Man, this is a must. We didn't get to see nearly half of it. I should have alloted more time. They have Johnson's Airforce one, a concorde, and countless other planes. They have a space exhibit, a full WW1, WW2 exhibit, and a control tower.

Our week zipped by. This was a huge vacation for us that required alot of thought and planning. We now know that we can do it. Next big vacation will have to be someplace tropical, but I can't tell you what a blessing it was to escape the heat for a little while.

Tuesday, September 13, 2011

Scan update.

Well, I have so much to blog about, lets start with the not so cheery stuff first...

Brian had his routine PET scan and check up this past Friday. We were both super excited that he was able to fight off a cold for the first time since he started treatments on his own without meds. You may recall that he wasn't producing blood back in March and April and had to have a bone marrow biopsy. Well, his lab work is beautiful, right where it needs to be. He also had some esophageal inflammation on his last PET that is no longer there. Praise God. But....there's always a but. They've been watching a lymph node in his groin for a while. The lymph system empties into the groin, so they didn't want to unnecessarily poke around there for remove this node if they didn't have to. There are risks, mainly, lymphedema. But, this node is larger and its glowing more intensely on the PET. So, Thursday and Friday we will be in Dallas meeting with a surgeon. Thankful that my husband has such a kind hearted, pro-active oncologist. He made it very clear to the surgeon that he doens't want to wait, that we need these results because it will determine the next course of treatment. Praying its nothing, but as always, its not in our hands.

Thankful for my family, specifically my mom, who has taken off work to be with our children. Thankful for my job, and the people there who are so understanding. My boss is having a particularly hard time. Continued prayers for her. A few years ago, her brother was murdered at a bank while he was making a delivery. The trial has been going on and the sentencing is next week. Her baby sister has been battling breast cancer. Her sister slipped into a coma this weekend and its a matter of time until she passes into the next life. Her family will more than likely be planning a funeral next week. So much for one family to deal with.

I'm sure this biopsy result will take a week or so, but that works out perfectly with my blogging schedule.

Beginning of school and Canada trip to follow.