Cleared for take-off

I must have misunderstood my husband. Evidently, I could get on an airplane because the cabins are pressurized. I still don't wanna, though. And, it still isn't a good idea. I just thought I'd clarify.

Chronic, Bizzarro World

Well, that is just a fun word right there. Chronic. Chronic Graft vs. Host Disease. After a recent visit with my GVHD doctor, she let me know that the team in Dallas has tried just about all of the available treatments, and that I should go visit a fella in Seattle to see what he has to offer. Just hop on a plane and let him look me over once. I am a pretty compliant patient, so I immediately started looking at airfare for two. I then realized that this made no sense for us right now. One of many problems was simply getting on an airplane when I start having major trouble breathing around 5,000 feet. Also, a person that knows my history (and has read over this Seattle fellow's journal articles) will do what is best. I am happy with my treatment for now. I went from there to my photopherisis therapy that does something to the tcells in my blood using UV light. It became quite clear that this was too taxing on my body and my family with the trips to Dallas and the subsequent days of recovery. We just were not seeing the results that we hoped. So, I made plans to cancel any further trips and cut the treatment short.

In the next few days, I went to my local eye doctor. Fearing the worst, I put my chin up to the microscope. "Not too bad." What? That was the best news I had heard in a long while. Not only have I maintained vision, but the eyes actually look less dry. My tear duct plugs had fallen out, so he put some more in for me. "Just keep doing what you have been doing." My eyes have been so much more comfortable! So....I did not cancel the photopherisis. Maybe God is using it after all, and we should stick to the plan.

So, how am I feeling? Decent. I'm able to do a few things here and there, but my eyes and my lungs as well as just feeling run down require me to sit a lot more than I would like. I feel unsteady, but my appetite has picked up. I might have to start taking medicines to make me eat more if I keep loosing weight. It is the opposite of the way I have lived most of my life. I keep crackly packages close at hand to grab if there is any inkling of hunger, and my husband is on his toes to grab me a real Dr. Pepper for coughing fits. Bizzarro world.

Sweet little quotes

Two quotes by a super sweet little girl that I never want to forget:

"It's a pa-pize!" (surprise)
"What land are we in?"

Waltz Across Texas

Tonight I'm putting together a playlist with as many west Texas songs as I can think of for my uncle and his wife that just got married out there. "Waltz Across Texas" by Willie Nelson just played. I have the strongest memory of my grandmother, Nanny, showing me how to waltz in her trailer house while this 8 tract played. She had always been very old to me, and it always delighted me to no end when she showed me a new dance. "Put your little foot" and "The Cotton Eyed Jo" were also favorites. During her early married years, she frequented the honkey-tonks with my grandfather. She remembered dancing with Bob Wills once in Bandera. I also loved when she played hymns on the piano. Nanny "jazzed it up" a bit, and it seemed more like an old saloon than a church building. Mrs. Causey honored her memory greatly by playing at the Methodist Church in this style for my grandmother's funeral.

So, the drive to west Texas was about 9.5 hours, and we got to enjoy my parent's cabin one night with the gorgeous views and beautiful stars and incinerating toilet. Before this trip, we had gone to my mom's brother's 75th birthday and on to South Padre Island for a continuing medical education trip. Sea level is much nicer to my lungs than the mountains!

Our last hurrah before school begins is to the Bass Pro Shop resort outside of Branson, MO. I doubt that we'll go into town to see shows because there is so much to do right by the lodge. Fishing, boating, and maybe even BB gun lessons.

a few quotes:

"Mom, I love you so much now that I am four. I didn't when I was three."
"Zane! Quit playing with your pizza!" "I'm not! See, it is a flower, and the wind is blowing the petals." "Oh, yeah....That is beautiful!"
"When I get my pocket knife I'm going to show you how I can chop vegetables in the air!"

The Bike and the Snake

Van agonized for months over whether or not to buy a road bike. He already owned a mountain bike, but most of the triathalons in which he hoped to participate required a road bike. Yes, he could rent one the day of the race again, but it would be helpful to be able to train with one. He scoured craigslist, and finally found one that he loved at Bear Mountain, the locally run camping/bike store. Everything local is named after a bear. "The Dancing Bear" is a pub, "Oso" is a frozen yogurt joint, and that's all I can think of right now. So, he headed over to Bear Mountain the first chance he got, and the road bike had just been sold.

A few days later, he signed up for the Xterra, a mountain bike triathalon in hilly Cameron Park. He had two weeks to train, but hey, he had a mountain bike. He met me at the YMCA to help retrieve the children after their swim lessons with the intent to bike afterwards. He returned to his truck and found it lacking the mountain bike. The poor fellow went back into the Y, but they could do nothing because there are no cameras on that side of the building. In the next couple of days, he returned to Bear Mountain and bought a great MOUNTAIN bike. Ugg. He did his best to catch up on the training.

The day of the race arrived. Van cruised up and down the hills feeling the quality of the new bike, when at mile 4 (out of 8), the chain snapped and the end of the handle bars hit him full force in the gut as he crashed to the ground. He checked himself over, tried not to sob like a baby, and told his urologist friend that was with him that he might need an MRI later that day. Along came the nice race folks who picked up both Van and the bike, and commented, "Is that a new bike? Yeah, sometimes the chains are a bit loose at first."

The kiddos have been mostly fighting like cats and dogs since school let out with a few sweet breaks in between. The puppy dog has been learning quite a bit and mostly obeys. Mostly. She still has a weakness to jump on the table if we are not looking. Thankfully, she loves outdoors and does not seem to mind the heat, so we let her in and out thoughout the day, and can kennel her outside in the morning if we need to go somewhere. She is a quiet dog, but raised a racket yesterday when she came upon a snake. Of course, Van was out for a jog, and I had just gotten the last child down for a bed. Cade was concerned, so he went outside to check things out. I told him that it was either a frog or a snake. Sure enough. I yelled at him to come and get his boots. Of course, that stirred the whole house. I made Avi and Zane stay inside, and I grabbed Van's boots for me. I started looking around for the hoe, but I realized that I was definitely going to fall in those cavernous boots trying to kill the snake. I asked somebody to get a treat for the dog who was very excited and proud of herself, and that amazingly lured her into the house. Cade quickly found the plastic fold-out snake field guide, and we tried to discern which snake it was. Van arrived home not to three sleeping children but to three frenzied children climbing the walls and a very tired wife. The man went into a frenzy himself (I love this about Van.), and grabbed some thick gloves and his snake stick that he got at the rattlesnake festival a couple of years ago and has never had the chance to use. I yelled after him to put on his boots, and he did. I guess I have a thing about snakes requiring boots. So, he and Cade worked on capturing the snake, and they did after many whoops and hollers. I think they were as proud as Scout. They posed for a picture and put it in a garbage bag. The whole lot of them loaded into his truck and took it down to the river as it was decided that it was a diamondback water snake. I kept the dog and watched an episode of Pioneer Woman. Then, about two hours after we had first begun, we started the bedtime ritual all over again.

I am very weary of medical stuff. It feels like two steps forward and one step back. The past few weeks have been especially hard, and my mom and my sister have been so kind to care for my kids. I started some new medicines this week that knocked me off of my feet, and I could literally barely walk because I felt so unbalanced and weak. It took awhile, but we finally narrowed it down to the medicine that was causing the trouble, and I stopped using it. My balance has almost come back, but I am still seeing double sometimes. I expect that by the end of the day my eyes will be working together again. To top it off, I had some significant muscle pain in my back and ribs. This one was new for me, so I wasn't sure what to do. One thing that has been helpful is that I took my handy-dandy 20% off coupon to Bed Bath and Beyond and bought a back massager that straps to a chair. So, in the middle of the night, I slip into the kitchen, grab a Gogurt, and sit in that chair for 15 minutes. It helps so much. My lungs do seem better and so do my eyes. I am thankful. Mom and Dad are coming today to take care of the kids while I do the photopherisis treatments in Dallas, then we will celebrate the 4th in Utopia. Cade is looking forward to chicken and dumplings.

Froggie went a-courtin'

"But sweetie, I think we should keep the tadpoles here. If we take them home, they might die." With big round eyes, Zane said, "But what if they LIVE?!?" And so they did. You can view them on our kitchen counter. I telephoned my wildlife consult, and my sister expertly recommended boiled lettuce, and now we have twenty or so fat little tadpoles swimmin' in the water. We had gone down to the river with our sweet friends that have just finished up their assignment in Uganda. What a precious time. We all clung to every minute. The visit also included a presentation with our children dressed up as a hunter, an assassin, a bunny, a butterffly, a queen and a narrator. The keyboard music punctuated the dramatic parts of the skit. Too cute. My cheeks hurt from laughing so hard! No visit is completee without a trip to the doctor, so after a confirmed corneal ulcer for me and dehydration for Van, our friends turned lemons into lemonade and took the children out for pizza and a movie and saved the day. My eyes are still struggling, so Mom is in town to take me to appointments.

the long and winding road

This has been a long road! I have been so discouraged by the setbacks, but my doctor has encouraged me to see the big picture and focus on that I have received a "long time cure", and that it is very unlikely for leukemia to crop up again this far out. We are changing to another doctor in the same group that focuses on graft vs. host disease. She recommedended another round of photopherisis (treating the blood with light). 80-90% of patients that have eye and mouth problems like mine find some relief. There is a possibility that it could help my lungs, too. Insurance has not been as cooperative in the past, so I have had to cancel some Dallas appointments, and we are having a hard time finding a photopherisis place. I do worry, but I know that the Lord will provide. In the meantime, I am trying to eat and stay active despite my low energy. It has been tough.

A New Chapter?

Seven Decent Breathing Days in a row! I even have some kind of sinus thing going on, and it hasn't morphed into pneumonia. I'm determined to get off of some of my meds, so we shall see if the doctors let me. I've been able to host a craft night for a handful of church folk, and host a big birthday bash for our now 6-year-old sweetie. What would you like for your birthday, Zane? "Balloons." Okay. What else? "I would like balloons for my birthday." A very loyal child. We also got him a zip line. Van installed it(mostly) just in time for the hoards of children willing to wait in line to teeter on the top of a ladder and shoot across the yard. Thankfully, one of the dads stayed at the party to catch children at the end as they approached the small tree leaning from the strain. We'll have to move the set up at some point!

Scout, our puppy, is doing well, and we are getting used to living with an animal. Avi and I took her on a walk around the block. It was the first time that I had the confidence to walk up the incline, and it went well. I had been worried that I would run out of breath and have a hard time getting back home. Scout was fussy with the leash and got tired very quickly, so Avi and I carried her much of the way! It was nice to go for a walk with these two sweeties.

Today, I will drop off Avi at Parents' Day Out, run a couple of errands, eat lunch with friends and meet Cade's class at the Mayborn museum to catch part of their field trip. He is very excited for his tour of Waco!

Catch up

Sometimes life is whizzing by so fast that it is hard to sit and reflect and figure out the deeper meaning because it keeps whizzing by as I am sitting! That is how the past few weeks have been. Part of it is the addition of our new sweet beagle pup, Scout. She is precious. We have all adjusted nicely, and she is well-loved. Thankfully, a new dog has proven much easier than a new baby, and we have all slept nicely and been able to leave her behind when we "go to town". As my friend says, "Yeah, you don't exactly have to worry about their future."

We've been praying a lot for Van's step-dad. He has some serious health issues, and we pray that he regains his strength soon. We also pray for Van's mom as she cares for him.

We pieced together the Resurrection Eggs (12 Easter Eggs that tell the crucifixion story) after years of use and shuffling in the moving process. The children know the story very well, so we were thankful for the Bible teaching that they have had. Avi's understanding shocks me. "He died on the cross to take away our punishments." So true.

While that parenting decision went well, the one of the red Kool-Aid at supper did not. While Van was out on a run, I put the kid's food on the table. Usually we try to eat together, but it was weird timing it with the fun neighborhood girls over. Van and I got to eat together while the kids played, and that was refreshing. Anyway, the red Kool-Aid with the child with the glass bowl on the tablecloth with the puppy tugging at the corner was disasterous. They were all sent outside while I cleaned up (and hollered a lot) so the puppy wouldn't try to eat the food mixed in with the broken glass. Poor Van came home to a scene.

That's what happenened in the last few hours. I'm not sure what we did last month.

Holding on

So much has happened in the last month or so that it will take a while to catch up, but one story that I want to record happened last night. For a couple of months, Cade has been saving up for a pocket knife for when he is "maturre enough". He does this by doing extra chores. Normal chores are things like putting up his clothes, taking out the trash, and taking the new puppy (!) outside. Extra chores are harder things like pulling weeds, vacuuming out the car or sweeping the porch, and they are also used as punishments until enough are given that we can see a change in his heart. They come sporatically because homework and friend time can take a good chunk of time after school. So, Cade had saved up about $5. The book he REALLY wanted at the bookfair that included a description for each one of the Star Wars minifigures AND it included a REAL minifigure was $18. Cade decided that he was not mature enough for a pocket knife, and he would start over saving for it if I could cover the rest of the cost. Sounded good to me! At the bookfair (after an incredible performance of Zane in a PE program) Cade found his book. When it was time for check out for our family, we were trying to navigate him to outside of the library where the line was short. He didn't understand, and started to panic clinging to the book thinking that we were going to leave without it. It was very crowded and very distracting, but he finally trusted us to move outside of the doors of the library to the easier check-out. Reflecting on it later, it made me ask myself what I am holding onto? What area of my life am I not fully trusting in God, panicking, and not wanting to just simply listen and move "outside" my comfort zone?

Downer

The grand ol' Duke of York,
He had ten thousand men.
He marched them up to the top of the hill
and he marched them down again.

And when they were up, they were up.
And when they were down, they were down.
And when they were only half-way up, they were neither up nor down.

I have another virus/infection? Yuck. I'm staying home from church and the activities for the day. I have my very own nebulizer for breathing treatments now, and I have a couple of strong antibiotics. Hopefully, I'll stay out of the hospital. I go to Dallas on Thursday, and I think Van is going to go as well.

Fancy Shmancy

I had a doc visit on Wednesday. No changes in treatment. No news is good news! My appetite is better, and my weight is holding steady. My breathing is decent, but is challenging at times and limiting. My eyes are very annoying, but I'm learning coping tools. I strapped on that toolbelt and loaded up with Van to come to a continuing medical education conference in San Antonio. We both hesitated because last year's conference was a complete DISASTER with my eyes and lungs, car trouble, etc. But because my parents were available to take care of our kids, and because Van and I have been at each other's throats, we decided that it was best. I almost bought a sign at Hobby Lobby the other day to laugh with him. It said, "What we have here is a failure to communicate." Anyway, we loaded our respective bags in the comfy minivan. We got all the way to Georgetown before the check engine came on. Oh, yes, by the way, Van, the same light came on when I was coming back from the doctor's office in Dallas yesterday. "What we have here is a failure to communicate." He calmly pulled into the Dairy Queen parking lot, called 1-800-Farm-Tow and our sweet insurance agency (thank you!) and ordered a smoothie for me and a Blizzard for him. Then, he ordered a Blizzard for me, too. The tow truck man was pretty prompt. We had a very sober, engaged discussion about life's woes in the cab of his truck on the way back to Waco. Van and I both attempted to elicit laughter from the man, but it was to no avail. I couldn't believe that references to National Lampoons Christmas Vacation didn't do the trick. Super sentimental and very kind. Van recommended a book about being fathered by God to him, and he was touched. Not what we expected!

Mom, Dad and the kids met us at the mechanic with Van's truck. The kids were all smiles and loving grandparent time. They gawked at our minivan being lowered with hydrolics, and Zane savored rolling our suitcases through the puddles in the parking lot. Chick-Fil-A lemonade and back on I35. We waved at the Dairy Queen in Georgetown an hour later, and we landed in San Antonio with full bladders. Fancy Hotel on the Riverwalk with a cush bed and cush pillows. Van walked to go learn something the next morning, and I found some hot chocolate and a scone. I played on Shutterfly with the Cooking channel in the background. I finished the photo album "Summer 2011" and got sentimental missing my sweet kids and my parents. That was the summer right after my transplant, so there were fewer pictures than normal, but most included my folks and Van alongside the kids in the garden, in the kitchen and building a picnic bench in the yard. Just lovely.

Then, a real treat. Van came back for lunch, and we met my San Antonio cousins at Spagetti Warehouse and got in a nice visit. These are folks that I grew up with seeing several times a year, and now we keep up with each other via Facebook. It was really special time.

After Van's last session, we walked through the mall, needing absolutely nothing but an ICEE. We strolled over to Fogo de Chao, an eating establishment that brought back memories of Nairobi's Safari Club. Once upon a time, when we were broker than broke, we spent some money in Kenya at a place where they served all types of wild game (crocodile, etc.) while we watched traditional dancing. If I remember correctly, each person cost $14 which was crazy expensive. This time, there were 1,000 waiters that came around offering us prime rib, pork rib, filet mignon, and all types of Van food on a skewer. My favorites were the Brazillian treats of carmalized banana and fried plantains. This part reminded me of teaching in Houston when our cook, Chari, cooked bananas in cream for us as a treat. She was from Spain, and put a lot of love into every morsel. I was nervous at first being in such a nice setting and forgetting to change out of my tennis shoes, but the wait staff and the company I was keeping made me feel at ease. We called the kiddos to check in. Avi had been to the coin store with Mom and Dad. She had charmed the owner who let her pick a few treasures of foreign currency. Pretty cute. The owner commented that she was such a well behaved child. I wonder if he changed his mind after she turned out the store's lights on the way out. The boys and a neighbor had ventured into the woods to make soup for the animals. It included acorns and sticks. They figured it would attract raccoons.

Just a few more days before we check to see if our little beagle has been born. I'm surprisingly excited about it. I think it will be a little challenging to adding another responsibility, but I think it will be really good overall.

Congestion and Relationships and a few quotes in-between

Thankfully, at day 5 congestion is still simply congestion and nothing worse. I feel like I'm holding my breath (ha!) waiting for the rug to be pulled out, but so far, it is just a bump in the road.

Recent quotes-- Cade: I made some new year's revolutions at school today.

Avi, as she was laid down in her bed with her eyes closed: B..b...b...God bless you. (snore)

Cade: Do we have any special Cajuns coming up? You know, like Valentine's Day or Leprechan Day? I like Leprechan Day. Is it called St. Patrick's Day? (That child can ask more questions in a row than anyone I know.)

Avi: Daddy told me to eat my piggy pancake (pancake with sausage on a stick) before I got milk, but I put it on the counter and that sneaky Zaner ate it up, so I did not eat it up, so Daddy got me milk.

Zane: I need to go make something. (That's my boy!) I don't have many quotes from Zane because he mostly speaks in sound effects.

Our little neighbor: Did you have someone come and clean your house today? (God bless this child! I love her!)

Avi, holding a wad of tape: This is a pretty ("pwetty") wallet that can hold nothing. It needs to stay pretty.

My sweet friend took care of Avi for a few hours today so I could grocery shop and unload and get in a nap. Avi is so easy that I could do these things with her, but
my energy is low, and she had much more fun with a friend!

Cade and Zane are back in the swing of school. I very much dislike homework. I try to have the boys finish before Van gets home, and yuck! Spelling words are the most painful. I really like the boys being required to read, though. We enjoy that part.

Well, it is time to listen to a sermon about relationships, so I'll cut this short. Van and I are trying to spend some time together while we don't have a major crisis or birth of a chlld going on. It's a new thing.