A good end to a long year

“Keep your eyes on the prince of peace, the one who doesn’t cling to his divine power; the one who refuses to turn stones into bread, jump from great heights, and rule with great power…; the one who touches the lame, the crippled, and the blind, the one who speaks words of forgiveness and encouragement….Keep your eyes on him who becomes poor with the poor, weak with the weak. He is the source of all peace.” I took this quote from Advent for Christmas, but it is originally from Henri Nouwen’s “Adam’s Story,” Weavings, March-April, 1988. (I’m on Day 11 of Advent for preparing my heart for the Savior’s birth.—ah, well.)

Van and I are between Leakey and Concan Texas just a few miles west of the thriving metropolis of Utopia celebrating our 12th anniversary while kids are with Mom and Dad. Van teases me that he married me for my hometown. I tell him that is fine as long as he keeps bringing me back. It has been a great end to his Christmas break. He worked Christmas Eve, but was able to join his mom’s side of the family at our house in the afternoon for a very enjoyable, low-key get-together. Our nephew Tye and I made a dent in the buttermilk pie that the kids and I made the day before. The big kids chased each other around like mad monkeys, and Addison, now two, was content to watch the maniacs with their new Christmas weapons and play with the bucket of balls and books. It was so good to spend time with everyone. The group gave me a cross necklace that I treasure. So beautiful.

Avi decided that because she turned three-years-old and was a big girl she should use a toilet, so she did. That was easy. I have no advice to give a new parent on toilet training. My three were so very different. Avi has also decided that big girls have stronger opinions and need more opportunity for independence. (read: meltdown on the kitchen floor) The other day, I had told her “no”, and she responded, “Well, Aunt Fisha (Tricia) will let me.” I had to laugh, but ooooh, girl. The initial sassy stubbornness has already starting to wane, though. I believe our “Most Reasonable Two-year-old-in-the-World” has turned into a joyful, confident three-year-old. She is singing even more, twirling and dancing and speaking to people that she has just met. It is really neat to watch. “I is a big girwl and a wittle girwl.”

Zane, oh, Zane. Man, that kid is a mess. We had gone on a lovely hike with my sister’s crew in which every child, save one, ended up falling in the creek to varying degrees. Zane was the first, and I do believe he aimed for it. He could care less about being cold and wet and continued zigging around the trail and finding all sorts of treasures in the forms of boulders, rocks and sticks. The kids played the game, “Who can find the biggest rock and throw it near to a cousin in an attempt to make it land in the water.” Great game. We really had a good time, and took the rag tag bunch to load up. Van stripped the wettest kid down to put him back in the car seat, but Zane found a way to entertain the parking lot. If it were appropriate, I would post a photo of him in his undies dancing atop Mom’s truck with the picturesque Lost Maple’s Park mountains in the background. He is a funny kid--so content and full of joy, but impossible!

I haven’t seen Cade this week. I’m pretty sure that he is still around, but the company of Carly-Daniel-Elise and Tye have engaged him quite well. Before my son disappeared, I had told him “no” to a request and explained my reasoning. He responded, “Well, I guess that makes sense, but not in my world.” It’s probably a good thing that the cousins stole him away. I’m looking forward to finding my son at some point tomorrow and enjoying his break with him. He’s compiled a list of things to do for fun, so we’re sure to have a good time. “Ice skating” is at the top, so unless we set up kiddie pools and let them freeze again this year, we might not complete the list because, um….we live in Waco. I’m hoping to break out the bread machine with him. When Zane was a baby, Cade and I used to use it while he was napping, and he still remembers. Warm bread is hard to forget, I suppose. Butter…mmmmm…….

Van worked his tail off the couple of weeks before Christmas, and now is getting a break. He spent yesterday near Canyon Lake (about 2.5 hours from Utopia) fishing for 6 hours straight. (I really think it is neat that he ties many of his own flies. Bzzzzz….) Today, we learned that Garner State Park where Van and I just hiked stocked trout this morning. We’ll keep that in mind next year! We might come back tomorrow so that he can fish with the kids, although he’s not feeling well.

We’ve had such a good week with family including a visit to my great Aunt Alice’s. Van and I confirmed several scenes from the movie 7 Days in Utopia (yep, finally saw it) and learned that Aunt Alice is also in the Methodist Church scene. That’s just fun. We had a good visit with Sid and Jacque. I like showing off my kids to the people that knew me when I was a kid and vise-versa. That is good stuff right there. Trish and I snuck away for a thrift store trip. You never know what you will find, and finding is so much more fun with a great sister. A Roomba is now charging at my parent’s house!!!! I hope it works!!!! We also had plenty of time for me to tease her about health foods, the age of the earth, conspiracy theories…anything that a little sister can think up to push a button—it was great. Mom spoiled us all with biscuits and gravy, and Dad has given lawn mower rides so much that now the kids play a game called,( you guessed it) “Lawnmower Ride”. We “goat” a lot of places. We “goat” the playground. We “goat” to the store to get milk. I never realized how much we “goat”. We “goat” to the bathroom most of all. Probably all 11 of us took turns taking Avi to the newly found bathroom. “I just kidding!” was her mantra if there was no product. I was able to do some little crafts with the kids, and I’m currently working on finding the cutest way to patch blue jean knees using Mom’s collections of various (and ‘sundry) crafting materials. With their love of bouldering and crawling on the ground like puppies, it looks like I might have a few to patch in the future! I also learned that Target carries slim jeans….it might come to that at this rate.

My health is doing very well. I’m hangin’ with the crew and have committed to actual exercise again. The platelets two weeks ago were good enough to have my central line removed. Woo-hoo! Praise God. Removal of it was good because the thing totally wigged me out. I felt part robot, even though I was thankful for it for IVs, transfusions and blood draws. After the removal, I was literally shaking because it messed with mind so much. By the grace of God, I pulled myself back together before driving back to Waco. I have an appointment on Monday for a good ol’ check-up, and Van is coming. I’m expecting to see a good platelet count, and I’m expecting that they will try to lower my steroid dose again. It has side effects like sleep problems, calcium depletion, muscle depletion….and they mess with my taste buds in an ugly, ugly way, and that just makes me ANGRY. We need to get it gone as soon as appropriate. My eye problems (another effect of GVHD) are much, much better and are responding to treatment. The kiddos will be with Van’s mom for the morning of the appointment, and maybe we can all do something fun in Dallas in the afternoon.

I may be one of the few people that like new year’s resolutions: abide in Jesus, exercise, slim down (self-control), and discipline of daily Bible study. Those are my goals for me. Hopefully, they will spill over into family and community in the process, or maybe someone will spill over onto me.

41 and counting....

...nah, I'm just 35 years old. But my platelet count on Wednesday was 41. My optimistic PA (at my asking) went ahead and scheduled my central line removal for Dec. 16 believing that my count will be at 50 by then.

good news

Platelets are 37 and CMV negative for the 3rd time. So....when platelets reach 50, I can get my central line taken out! Woo-hoo! My next Dallas appointment isn't until December 16.

Still having troubles with my eyes. I tested 20/20, but my vision feels blurry when reading, and my eyes are swollen and super dry. Very annoying. I just started a new prescription today. It's all due to the silly GVHD.

%!@#!*!!!!

We're working on expletives in our house. Every family has its parameters, and ours includes honoring God and people with our words. So even minor words like "gosh" aren't supposed to be uttered as well as "butt", "stupid", etc. The eldest child is trying to navigate the nuances of first grade, and we are trying to find some replacement words in his insistance. The middle child has happily settled into "Oh my cows!" Our baby has decided to get in on the action as well. During a diaper change, I let her know that I would be using medicine on her bottom because she had a diaper rash, and she said, "Dang it!" My grandmother taught me that if people used curse words (worse than these I suppose!)it was because they weren't smart enough to have a varied vocabulary. That stuck with me. In other words, she was saying they were STUPID. (hee-hee, get it?)

We traveled and had a ton of great family time over the thanksgiving break, and we even went out to the Homestead Heritage craft fair on Saturday. I ate a funnel cake for the first time in 20? years, and it didn't let me down. We enjoyed the Mission Waco toy drive at church with the Christian motor cycle group on Sunday. That is a highlight each year. Because I was having sleep issues anyway, I tackled JoAnn Fabric, ToysRUs, Walgreens and Mardel bookstore on Black Friday. That was actually very pleasant and fun. Waco people are nice. Because McDonald's didn't have their hot chocolate cranking, I had to settle for Starbucks ("at a lower temperature, please")and probably negated any savings from the sales! Totally kidding. It was worth every penny. I got back to the house a few minutes after everyone woke up with a specially-chosen donut for everyone and a coffee in hand for my husband. It was nice being the hero for a whole 5 minutes! Today, I'm in Dallas for hopefully my last drug infusion for CMV. I've had two negative test results, and I expect the same today. I've had to have fewer platelet transfusions over the last couple of weeks, and my PA is thinking that two week Dallas check-ups and one week Waco lab draws should suffice. Platelets seem to be holding steady at 37 today. Yea!

With Cade in school, timing can be tricky for Van's required medical conferences. This year it is a bit easier because we are stickin' to Texas (no lugging carseats onto airplanes!!!), and taking it easy. He'll be on the River Walk in San Antonio for 3 days learning about feet. Feet. Yep, feet. Because we only want Cade to miss one day of school, and because we don't want to have two vehicles, Van will be traveling by Greyhound. The bus, not the dog. He said they may even have wifi on the bus (the dog wasn't equipped). We'll see how that goes. We're planning on doing something with the kiddos on Friday afternoon with the kids in San Antonio (probably either the zoo or squeezing in one more trip to Sea World before our pass expires) and then handing them to grandparents so Van and I can have some River Walk fun. (I'll have Saturday morning to myself in a nice hotel--SWEET! I wonder if I should take my sewing machine?) Then, we'll all be in Utopia for a night when his conference winds down. That's a good plan. He's been tying flies in anticipation of a fishing venture--a nymph larvae--what in the world--but it doesn't look like it is the right time for that particular river and that particular trout. I'm learning way more about fishing than I thought I ever would!

Our house plans are coming along nicely. Van and I are going to look over a spec sheet with the builder while kiddos are at parent's day out on Tuesday. We're in a hard decision making stage about what is important to keep and what is not to keep costs reasonable. I've been praying for wisdom about this because I want to "have in mind the things of God, not the things of men." We hope to start building in January. Wow, January is coming up soon. We'd better get crackin'.

Good and okay

Platelet count today was up to 28-32 depending on how you want to count 'em. Yea! This was my first "day 4" in several weeks that I haven't had to borrow someone else's platelets. Praise God.

Zane, Avi and I picked up big brother from the school nurse about 2:30 with a headache and low-grade temp. He had his birthday cupcake in hand, and tried to milk the situation for all it was worth. Post Sonic happy hour, a movie from Redbox and birthday gifts from the 4 of us, he was doing well. Van thinks that he'll be able to be at school in the morning. Lord, please be with that sweet boy. He received a neat-o keen "Happy Birthday, Cade!" book from his class with encouragements and drawings. It was really heartwarming to read through it with him. What a great idea to make the day special and to make his little heart full. "I like you because you.... are allweshappe." Always Happy. Pretty cute.

Blessed and overflowing

What a great weekend. My brother-in-law traveled to worked from "home" in Waco so Tricia could take care of my children for my Dallas trip. Cade had school, but my little ones and Trish's homeschoolers went to the zoo. Oh, and they broiled, yes broiled, the cupcakes for me. Ha!

My trip on Friday went well, but I sure was tired and sick to my stomach after all that was done to help me. The CMV is down to 1 positive cell, and platelets were at 20, which is better than last week's 19 if you squint your eyes. I came home and happily crashed while the other 3 adults took care of me and the 6 precious kids. After putting them in bed, my sis and I finished assembling the Lego cupcakes, Lego man water bottles and treat bags. This kind of stuff is my manna with the highlight of talking with my sis at the same time, so it was great. The next day, I didn't feel much better, but I was so excited to throw everyone in the car with the cupcakes and party favors to head back to I35 and LEGOLAND. Van drove, I slept, and the kids played and watched a DVD. We met up with Van's mom, her husband, Van's sister and son, Tye. It had been about 7 years since Tye (Amy's 11-yr-old) and Daniel (12-yr-old) had seen each other, and Legoland was a good time for both of them. It was so good to have just about all of Cade's cousins together in one place. We partied hard, grabbed some grub in the food court, and with our ears and eyes ringing with overload, moved the party to a park. We froze our tails off in the wind, but the kids could have cared less, rolling down the hill and watching airplanes. Gil and Trish took most of the kids that time in their van while Avi and I slept in the other car. We made it back home for me to again crash while others filled in the gaps. Sweet Van took the clearance glow-in-the-dark silly string out for a battle between the cousins. Somehow, we need at least one good organized fight each time we get together!

Right now, I'm finishing this up to watch mass on tv, and I'll see if our church's ustream is up and going later. My stomach isn't normal, but I'm hoping the effects of Friday's treatments will be done in the next couple of hours. Van took our little ones to Sunday school, and I'm hoping he'll feel rest, too, today. The Lord is good. He provides for us in our need, and blesses us on top of that with sweet family.

Funderful Week

Our microwave may never recover, but the house itself is decent. I may have to learn how to use the stove top again. :P

Saturday was great. Zane was honored with the "best attitude" award for soccer and his coaches said that he has a genuine joy and friendliness. Amen and amen. Cade scored twice in his game, and really showed his hard work throughout the year. Many thanks to their encouraging coaches. Little sister played in the dirt with the other siblings and was pretty cute. We went out to the World Hunger Relief Farm to pet goats, turkeys, rabbits and watched a goat being milked. We saw pictures of children doing chores of carrying water jugs on their heads and showed what kind of shoes that many children around the world have if they have any at all. Good reminders. We bought rootbeer in glass bottles (Wow!) and went across to Homestead Heritage to see Grandmom during her woodworking class. How much fun can you fit in a day?

Our family tries to focus on the pumpkin and dress-up part of the fall festivities. We have had a great time this week. Cade was a ninja, Zane was a fire fighter, and Avi was an octopus. They were adorable. I think Zane's and Avi's costumes are on facebook. I was able to go to go to Cade's school to help the kiddos carve pumpkins and do math activities, and that was an extra-special treat for me. Cade REALLY likes Van and I to visit his school or substitute for a Sunday school teacher--fills up his little love cup. Our church had the best fall festival ever, and I really enjoyed getting to see community folk mingle in. Good times. Well played, Dayna, Jack, Emily, Scott's crew and everyone else who made the night wonderful. God is good.

This week was good. We have learned how to receive platelets from a local hospital (and the nurse is quick, sweet, and professional!), so my trips to Dallas are back down to once a week. Because my platelets have been so low for so long, it seems less of an emergency and I can schedule Parent's Day Out mornings to take care of it. Sooooooooo thankful to donors. Biopsy today to help diagnose why platelets are low (could be some type of auto-immune thingy) and 2 very long infusions. My platelets are 20 which is the cut-off number, so I'm going to re-fuel today as well. Bless my sweet nurse.

Van celebrated his 35th birthday on Halloween. Van said that day he kept writing 10-31-76 on prescriptions and got a couple phone calls from Walgreens. The nurses got a kick out of it. We trick-or-treated at a few special houses (not that are not special! We just had a couple of invites and had PLENTY of candy from the night before), and I had his dinner ready except for grilling the steaks. He's just better at that part--I am a nervous wreck with the kids and a grill, and his steaks are muy bueno. The kids were so proud to have the dining room decorated with balloons taped on the windows in a stair-step pattern.

We'd been so busy that I neglected to buy the kiddos a pumpkin to carve like I promised. I had passed them by at the grocery store because it is hard to fit a pumpkin, children and groceries in a cart. It can be done, but there were so many "pumpkin patches" at the churches around town (and it is fun to contribute to a church), I figured I'd just take them to pick out a pumpkin each, snap some photos and load the whole sha-bang into the trusty minivan. Well, now it was November 2, and my children had not forgotten that I had not fulfilled a promise. We stopped at Waco Baptist Academy, and I asked a fellow in scrubs if the pumpkins were still for sale. He said that the principal had told him that they were free!!! I like that word. Let's say it again---FREE! There were still a motherload of pumpkins, so I let the kids pick out one each and did a psychoanalysis on their choices. Cade immediately went the biggest, longest, oddest-shaped green pumpkin I'd ever seen. He called it "Baby Boo" which I think relates back to when he voted on his favorite of the kindergarten class pumpkins? He hauled it by himself to the back of the van and threw it in as I cringed. Zane picked a perfectly round, HEAVY orange one, but took his sweet time choosing it, sitting on many of them. Cade was happy to carry it, but I interveaned, not knowing how old this pumpkin was and if it could handle the crash that Baby Boo endured. Avi took her time carefully examining each miniature orange pumpkin. Cade tried with all his might to get her to choose a giant one, so she settled on the biggest of the small ones. Interesting. They reluctantly endured photos from my cheap cell phone. We drove off as I defended to my eldest that we did not "steal" the pumpkins, but received a sweet gift from the generous people at Waco Baptist Academy.

Cade is about to turn 7. It is so hard to believe. I remember carrying that 4lb. 11oz. bitty thing around for hours on end and being exhausted, but never really wanting to put him down. What a little miracle. God has blessed us with a beautiful family. That seemed impossible until I was actually holding him in my arms. With God all things are possible. He's always been a little man with big ideas, wonderful ideas with a touch of danger. I decided that he and Zane might not be the best pilots yesterday when they were playing with airplanes. Cade said, "I'm going in for a crash landing!" Zane said, "Landing for take-off!" Cade can be a spit-fire, but he is a defender of justice and lives up to the meaning of his name "battler" if someone messes with his brother or sister. We're celebrating with family this weekend at Legoland in Dallas. (Legos might be the best invention ever. Well, maybe a label-maker is, but for now we'll say Legos.) He is super-excited, and we are very happy to celebrate that little guy.

Hobby Lobby is one of my favorite stores. It is the worst place to take children. However, preparing for Cade's party this weekend, I NEEDED (I'll take a look at my perspective at some point) a giant circle hole punch that I once had in my possession, but could not find to save my neck. So, we loaded up. Of course, I couldn't just get the one item in that glorious store, so I meandered through all the breakables to the photo frames. I phoned Van. "Frames are 50% off. Do you want to frame the kids rainbow pictures for your patient rooms?" Yes. I grabbed 3 frames, delighted that my husband is that kind of daddy, and put them in the cart. Cade said, "Mom! Don't buy these picture frames! We don't know ANY of these people!" I got so tickled that I could barely breathe. Meanwhile, I'm in the middle of a ton of breakables with three small (and active!) children. Then, Cade grabbed a small frame and started moving the protective sheet on it with the price tag covering up a lady's face. "Now she has a moustache, now she doesn't. Now she has a moustache, now she doesn't." Funny kid.

I'm in a crafty, project mode. Dangerous. It is hard to do dishes and projects and remember to brush your child's teeth. So...we mix it up a bit and do them all together but not put soap on the child's toothbrush. A couple of weeks ago, Mom helped me pick out a small buffet to re-do to put baskets in to seperate "soccer" from "clothes to wear tomorrow" from "stuff I need to return to people". We don't have a coat closet, so it will need to accommodate that, too. Basically, it will be a mud room contained in a piece of furniture. Zane and I took off the doors, and I ripped off the back that was a bit broken. I took a deep breath and Zane, Avi and I slathered on teal paint. I followed them catching as many drips as I could, and you know what? It turned out pretty well for a first coat. (Behr with primer--awesome paint) They had a blast. They were COVERED in mostly accidental paint, so they had to stay outside until they dried. I asked Zane to take his foam brush to the trash can (by our car--What was I thinking????) and later noticed that there was a bit of extra artwork. Teal paint on a black van. It came off with water. Praise you, Jesus. Cade painted the drawers when he got home from school. He had many ideas about how it should be done, but we got through it and had a good time. I put on the last coat while they were at school/PDO the next day while watching the Duggars. Luxurious. It is functional now with baskets for the different categories, but I'll finish it out with some knobs on the side to hang jackets and some batik fabric on the back because teal just isn't quite enough. :)

My goal for this week is to practice the discipline of meditation/silence/solitude and to give my husband a chance to do the same. I'm great at silence and solitude, but while working on something-ha! I've never gotten the hang of this one, so here goes.

Fighting Fires

A little boy and a little girl went to the zoo with their mama and sweet friends. It was so fun. They were perfect angels and even picked out a birthday present for their big brother at the gift shop and had grilled cheese sandwiches. The little girl then decided she was cranky and needed a nap. The mama turned on cartoons for the little boy while rocking the little cranky girl. The little boy was still hungry. He asked the mama for a snack. "Yes, you may get one out of the drawer." No, the little boy purposed. I must climb onto the countertop, retrieve microwave popcorn, peel off the packaging, place in the microwave and press random numbers. The little girl was falling asleep. The mama did not here the microwave and was rather irritated that the little boy interrupted the rocking with his stories of explosions from the "refrigerator". "PLEASE go watch TV." Finally, the little boy's descriptions of smoke made the mama send the children outside, stop the seared microwave, open doors and windows and vacate the house. The top layer of the house was completely filled with smoke. Zane was then cranky because I think he "got it" and felt very sorry. I felt sorry, too, for not listening and acting sooner. We drove to Sonic, Avi fell asleep, and I parked in the handicapped parking so I could safely watch Zane play on the playground while being with sleeping beauty. I'm still debating the ethics of this, but I was pretty desperate by then and feeling a bit disabled myself. The sundae fixed most everything. Ironically, he will be wearing a fire fighter costume for fall festival.

The previous week, Cade's homework was to check all our fire alarms and make sure that we had a plan of escape, fire extinguishers, etc. None of the alarms went off. ??? Our house stinks like crazy, but is slowly recovering. Mom arrived just about the time that all of this finished up. She is wonderfully here to ease things up for us. She has or will drop off various children in various locations today wearing various uniforms, and I hear that chicken tortilla soup is in the works. Van is on his final night of passing out soccer snacks. Bless that man. I'm in Dallas receiving THREE infusions today. Two anti-virals and one bag 'o platelets. I think that is my record for an office visit. I brought some coupons to clip and some digital photos to organize.

Tonight, I'm going up our church community center. Our community center is used for a lot of community activities from scout troops to exercise classes. Tonight, a team from Bethel Church from Northern California will be there ministering, and I'll ask for prayer. This team is from the same church that I took a trip when first diagnosed almost exactly two years ago (learning more and seeking healing from the Lord), and they are in Waco tonight! It is really touching to me that I didn't even know about this opportunity two days ago and a "random" email sent my way reminded me of God's provision. He's still there. Yep. Been there since before the beginning. Oh, yeah.

A good song:
Turn your eyes upon Jesus.
Look full into His wonderful face
And the things of this world will go strangely dim
In the light of His glory and grace.

Disappointment

I thought today would be a check-up, but my platelets were low. I got another transfusion. Thank you, Lord. Thank you, donor. Thank you to my mother-in-law who played with the grandbabies for a full day instead of a couple of hours like I thought it would be. Thank you, Jamie for having a happy place for Cade to be. Thank you, husband, for keeping your chin up.

I'm reminding myself that this is just another hurdle and that a month or whatever ago we were dealing with CMV, a blood clot and aches and pains. Although the PA and doc are not sure why the platelets are not rebounding, they suspect GVHD (Graft vs. Host Disease) which is not unusual. They are cautious, however, and will do another biopsy soon to triple-check. I got a biopsy maybe a month ago? and it looked good. GVHD is managed with steroids. I just got back from HEB with fresh veggies for soup so I won't blow up like a fish wanting to eat my hand off in the middle of the night.

Sigh.

Tomorrow is Saturday. That is good. Home, soccer, Aggie football, friends...happy kiddos.

Typical Tuesday on the horizon

Up at 2:00 am finishing up some homemade veggie soup, Mexican style. That's what steroids do! These steroids give me energy, but weaken me at the same time. I'm on steroids to battle some Graft vs. Host disease, which is not unusual. Van did some research and although all docs are different, I will probably have another 6 weeks of steroids? Otherwise we are hanging steady. My last platelet transfusion was on Wed., and my Monday count was 20. My Dallas doctor is "cautiously optimistic" that the platelets will slowly rise on their own without more transfusions. I return on Thursday for another check up. Right now, I'm on the edge of a safe level. CMV is still negative. Praise God.

It felt really good to fix breakfast, load the dishwasher and take 4 of us for flu shots. Normal mom stuff. The kiddos were so brave, and kudos to Ms. Jennifer for the dispension. No tears at all. We went to HEB for an extra prize because I felt bad that they couldn't have the flu mist because it is a live virus & bad for me. Cade settled on a little Lego vehicle, Avi picked purple play-doh, and Zane (you guessed it) a bag of balloons. I was rewarded with a zucchini and some cauliflower for Van. I should have thought through that better!

We enjoyed a play-date at Chuck-E-Cheese. The kids skipped around while my friend and I pieced together whole sentences. After that, our family had a normal supper (thank you, HEB meal deal!), and the kids and Van wrestled. Good times.

Tomorrow is a school day for Cade and parent's day out, and I actually don't want to drop off my children because I miss them(but they will be ready)! I will however, because I have to go to a shoe store, and the last time I went in, I couldn't get Avi away from the purple pumps. She got so mad at me that she tore off her diaper and started to run around, totally out of character. Let's not repeat that scene.

H-E-B, yea you know me

Our HEB gas station has a special now for 11 cents off of gasoline. That has been helpful this week! I spent some donut/kolache time with kiddos this morning before heading out, saying goodbye to my folks, and going to Dallas. I received the iv drug to prevent CMV, and the platelet count is at 30. I'll recheck here in Waco on Monday to see if the platelets are steady. The steroids were reduced, so hopefully that will reduce the risk of the CMV popping up. I go back to Dallas next Thurs. The inside of our minivan is a science experiment of crumbs and various sticky stuff on the windows. Ew. Maybe tomorrow I'll be grossed out enough to take action.

Mom and Dad passed the torch to Van's mom around noon, and they evidently had quite the Nerf gun war. (The kids and DeMerle, not my parents and DeMerle!) I got home around 5:30 or so, a little before Van. He's a bit under the weather, so we ordered some pizza and watched some very loved-on kiddos play with balloons and toys while we pushed our eye lids open. Yesterday, Van decided that it would be great to donate blood and then go for a run. He couldn't figure out why his feet looked so white, and then remembered. Not his best idea.

Day by Day Sheeps

Ever heard this song?

Day By Day
by Bill Cantos

Day by day you reveal your love to me.
Cradled in you're arms I am
A precious lamb, a diamond in you're eye.

Day by day you reveal your love.
Day by day you reveal your love.
I am a precious, a precious lamb, a diamond in you're eye

Or,
I Am a Sheep
by Dennis Jernigan

I am a sheep and the Lord is my shepherd
Watching over my soul.
My soul to keep guarding over me ever,
Watching wherever I go.

And when the winds blow He is my shelter!
And when I'm lost and alone He rescues me!
And when the Lion comes He is my victory!
Constantly watching over me!
He is constantly watching over me!

We are his children and he is our Father
Watching over our souls.
Great is His love for His sons and His daughters,
Watching wherever we go.

This week we have literally taken it one day at a time, and God has carried or dragged me reluctantly through it telling me that He is with me and won't let me go. (Hope that makes sense.) I got more platelets (Have I mentioned how much I love blood donors?) and got looked over again. I go back again on Friday to see if my platelets are picking up on their own and to get an iv for the non-existent virus so it won't come back and bite me on the rear. The days are long, and I miss my family. I literally worked a a part time job this week with a long commute. (That is if you can count paying bills, playing on the computer and receiving warm blankets from nurses a job...maybe I exaggerated.) There is much hope on the horizon, however, and I really really think (for the reals) that this is our last greatest hurdle.

By the way, when I change Avi's bed, she gets a little upset that I'm taking her "sheeps".

Mostly Good

I would write a song about I-35, but it would definitely be a sad, sad country song with a little bit of whistling. On Monday, we checked my blood again, and the platelets were very low. Van cancelled patients for the rest of the day and drove me to Dallas, and after a few hours my especial platelets were ready and loaded. (Another shout out to blood donors! We are thankful.) We also checked the CMV level, and for the first time in FOR-EV-ER it was negative. Praise God. (I'm a little confused if we still have to treat the non-existant virus to prevent it from re-occuring.) Tomorrow (Wed.) I go back up to Dallas for another blood count to see if my body is producing its own platelets yet. We had been assuming that the low platelets were caused by the CMV meds, but it is looking more like it is Graft-vs-Host disease again and I went back on a steroid. Lovely. The bonus to this is that my appetite went back up. The downer to this is that my appetite went back up, and that it has other yucky side effects. In my mind, I had decided that by the end of October, I would be jogging 2 miles. I haven't even been to the Y in months, and taking care of kiddos is plenty. I have taken a few trips to Kohl's and to soccer games. ;) All in good time. "Rest in the Lord and wait patiently for Him." Psalm 37? Mom and Dad have been here for about a week-and-a-half, and have been pure AWESOMENESS.

Zane's new story involved him and his friend Jack going in a spaceship to find heaven and hug Jesus. His former story involved Jesus taking people in an ambulance.

Cade and Zane are having a hard time going to sleep tonight. Van is watching his favorite storm chasing show, and they love it almost as much as he does. Yes, they are allowed to watch tornados demolish towns, and I limit Scooby Doo and Tom and Jerry. I thrive on double-standard parenting.

Tonight Avi sang songs to her bunny and puppy to the tune of last year's Sunday School songs. She used her little toy mirror and sang how pretty they are. Then she helped them slide down from the chair on a pillow to the floor, but they had to take turns. Pretty cute.

Home Again, Home Again, Jiggady-Jig

I got home yesterday (Tues) evening. Platelets at discharge were at a safe level, but my immunity is low. Today I rested some and played some. Tomorrow and Friday I'll be in Dallas for the light treatment on my blood and await further instructions. Thanks to all who pray and send well wishes!

Avi twirls her hair when she drinks from a sippy cup. A couple of days ago, she twirled a bit much, and I couldn't get the knots out. She now has a cute flapper cut! I'll try to post pictures on facebook soon.

A little R&R

I'll get platelets around midnight and check to see if they "stuck" about an hour later. If I'm here in the morning or even for a stretch, no visitors or phone calls please so I can get rest. I'm pooped, and I know that nights at hospitals can be long. Mom and Dad are helping Van so we should be fine on childcare and meals. Please pray that I can get out of here soon. In the meantime, I'm spending our savings on fuzzy bear claw slippers for the boys. Online shopping is dangerous, man.

Not in the Plan

This would be dramatic if it weren't quite so dull waiting. I'm at the hospital in Waco waiting for another transfusion of platelets. This morning, my blood count revealed it as 3, and I found out a couple of hours ago. The exchange between the kids and I was not pleasant, especially with Cade. He was pretty angry because I had just picked him up from school, hadn't spent any time with him and he didn't even get to go to a friend's house out of the deal. My parents are on the way and should arrive late tonight.

Avi and Zane played a sweet game of hide and seek today:

Avi: You hide and I'll count.
Z: Okay! Wait a minute! (Avi watches as Zane covers himself with a blanket.)
Avi: Ready?
Z: Yes.
Avi: 1,2,3,4,5,7,8,9,6.... Here I come. Now where could Zane be? He's not over here, and he's not over here...here he is! Your turn!

They played that over and over. It was hilarious when they pretended that they couldn't find each other.

Some Good News

Not all is perfect by a long stretch, but we are rejoicing that the blood clot that I got 3 months ago is gone. Less complication!

Seven and Three

My platelet count is 7. Yep. Hopefully, the new ones from a donor will "stick" and the count will get higher.

CMV has gone down, but evidently will still need to take the meds that are rough on my brand-spankin'-new bone marrow. That level is now only 3.

This means that I'll have to keep my central line for longer than I thought, so that is disappointing, but at least we're headed in the right direction.

I'm watching HGTV at home with the sister and husband. Good times. I packed a couple of suitcases with photo albums. There was a fire a few miles from our house, and we watched planes pass over with fire retardant around 5:30. If it sparks up again, we'll be semi-ready. It was across the river from our new property.

s

I'm in the Big-D and do mean Dallas

Any 90s country music fans out there?

My kids are being loved on today by my sweet sister and "DanielCarlyElise". I'm in Dallas where I just got the news that I have to receive some platelets because mine are too stinkin' low. Yesterday, Van dragged me to his clinic and an x-ray may have shown some pneumonia. I'm coughing quite a bit, but otherwise I'm just tired and admittedly grumpy. "The joy of the Lord will be my strength." My appetite is all screwy, so I've been on a ramen noodle kick. That will have to go, though, because my sister is anti-MSG and will cut me off cold turkey. I hope she doesn't find the half-eaten cup 'o noodles I ate at 2:00 this morning. Shoot, I shouldn't have left that in my haste for the trip here. If anyone finds me on the side of the road shaking and muttering to myself, just inject me with a flavor packet.

I really hope that tomorrow goes well. At Van's clinic, I will get an ultrasound of my leg that had the blood clot. It will determine if I have to be on blood thinners. Also, if I feel good, I'll get to join Tricia and all 6 kids to go watch the movie "Dolphin Tale". To get my children to sit for an hour+, I might actually have to purchase popcorn, and then I'll get really mad at the popcorn racket at theaters. I hope I get to.

Saturday, Zane and Cade have soccer games and photos. I'll iron their uniforms,bleach their socks, wipe off their shoes and pretend that they always look that groomed and always wear shoes. Hopefully, Cade won't get into one of his hair gel moods. Occasionally, when he wants to look especially good, he finds Van's gel and comes out with either a slick-down or a mohawk. Last year, he spent the whole soccer game gently making sure that his hair hadn't moved.

Numbers

Van asked me to give a health update. Because I am so nice to him, and try to be easy to get along with, I will comply. (I wish this statement was more accurate!)

White count is slightly up, but not impressively.
Platelets are the same.
But...CMV is down, and that is a very good thing.

I go back on Thursday to be blasted with two different iv meds, ugly pre-meds that make me feel like a goat that ate too many tires, and a breathing treatment to protect my lungs that makes me feel claustrophobic. Not looking forward to that day. Mom and Dad are coming back to help for another few days to get us through this one.

I'm not sure why, but for about 3-4 weeks I've not been able to eat--literally a few bites a day, but not losing weight. Very, very weird. I was down to coke floats and bananas. Well, over this weekend (again, I'm not sure why) but my appetite is much better. It takes me a long time to eat, but I can do it. I'm thankful for this. Hopefully, my renewed interest in Beef and Broccoli won't cause me to bloat up like a sow. I'm also hoping this will help my low energy level and will be motivated to get off of my duff.

Van's watching a 9/11 remembrance. We explained for the first time to the boys what happened 10 years ago before church knowing it would be mentioned. Our Cade has one volume, so if something puzzles him during church, he doesn't mind belting out a question or 20 to us. We figured we'd prevent this before heading out, and I'm glad we did. Trying to explain it to innocent children was not fun. Anyway, so Van's watching this 9/11 remembrance, and feels like the conductor is putting a spell on the orchestra because he looks like someone from Harry Potter. We're really high-class cultured citizens around here.

I remember being in Houston that day. Tricia called my school to let me know what happened. While we were talking, the second tower was hit. I told the office people what happened and walked back out to my teaching partner and class of 3-year-olds on the playground. We could see downtown from where we were, and didn't know whether just to keep playing as normal or go ahead and take the children home on vans, knowing that their parents would want them close. We decided to finish out the day. It was a little scary being so close to the skyscrapers and not having access to the news. I'm sure the parents that day were glad to receive their children, and it was good to get home to Van. We lived in an apartment with 2 windows. I did my American preventative-terror duty and bought plastic and duct tape to cover the windows with in case we were ever attack with any bio-terror agent. Van occasionally still teases me that covering the windows would have done any good whatsoever, but I was prepared! And...for many years I didn't have to buy any plastic shower curtains because of our ample supply.

Back pew wiggly britches

I say,"Please just draw something that you like." He says, "Okay" So wiggly britches takes 3 seconds to draw a tall triangle with 3 sticks coming out of the top point. Then he writes the word,"Lovu". "Do you know what it says?", he whispers. "Of course," I say with a giant grin, "It says I love you!" "No, it says 'lava'. This is a volcano."

Yearning for Shamu and Skunk Scare Tactics

I'm in Dallas staying with Van's mom. Their house is very peaceful, and I've enjoyed the company. Today I did the treatment where my blood passes through light, and I'll do another one tomorrow. These have gotten much faster because of a new machine and are not nearly as taxing as they used to be. I will also see my PA tomorrow and get a second dose of an IV med. I got a break from the IV med at home and many of my other medicines because my platelets were getting too low, and the CMV wasn't budging. I pray that tomorrow's numbers look good.

I'm mindful of a little friend-of-a-friend that is undergoing a heart transplant right now. She is four-years-old, and I can't imagine that her parents will be sleeping anytime soon. May she be healed completely.

I miss my kiddos on trips like these, even if they are having the time of their lives with their grandparents. The other day, Zane (4) decided to make the bathroom floor into Sea World, and he came pretty close. It was a four-towel clean up job. They were dripping wet, and he still couldn't snap back into reality to understand that, "NO YOU MAY NOT RIDE SHAMU IN THE BATHROOM." He just kept telling me about all the neat tricks he could do. Van was no help whatsoever because he couldn't keep a straight face.

The bathroom has been quite the hotspot for activity. While the kids were occupied, I snuck in. Cade came banging on the door, "a skunk! a skunk is outside!" I screamed, "Are all the kids in the house?" "YES!" "Is the door shut?" "YES!" Then, as I exit to make sure that Cade included his brother in the count, he said, "Just kidding!" He got me on that one. The next time I'm looking for a stinker, I'll know where to find one.

A quick shout-out to my sister who had a birthday today, even though she doesn't read this and therefore is sadly uninformed. Happy Birthday, Trish.

How Low Can Ya Go?

Test results from this morning:

PLATELETS mine: 26 normal range: 150 - 450
White Blood Cells mine: 1.5 normal range: 4.0 - 11.0

Platelets help coagulate blood in case one is attacked by a saber tooted tiger, and white blood cells help with immunity if that tiger has the flu.

The CMV results take longer to come back. I'm waiting to see if my medicines will change again. Phooey.

Scientific Fun Facts

I missed church today because I have a low white blood cell count, so my immunity is compromised and I didn't want to push it by being in a big group. My platelets are also low, so I'm off of the blood thinner that I used because of the DVT (blood clot). That sounds dangerous to take someone off a blood thinner so soon, but it would be more dangerous if I started shooting blood from my eyeballs at my enemies like the West Texas horned toad. (I just learned tonight that they did this from Cade's reptile book and thought I would work it in somehow.) We think that my blood counts are low because of the iv meds that I'm taking for the Cytomeglavirus (CMV). Blood counts will be collected in Waco again tomorrow morning, and the CMV test will be done again in Dallas on either Wed or Thurs. Asking for help from above to clear up the dang thing.

A Summary

Okay, so I am cheating. Most of this post was an entry for a newsletter that my dear friends from the med school days are putting together. But as my mama told me, "Why re-invent the wheel?" :

The biggest event of this year was a bone marrow transplant on April 1. I was in Dallas for much of the spring while the family was in Waco. Pretty tough, but the Lord was with us. On July 15, I was able to move out of the apartment in Dallas. After that, we had some further complications (one being a blood clot). It was pretty tiring to be taking care of kiddos once again, but I’m in pretty much full-swing now. If you want the full story read the rest of this blog. I expect an almost full recovery with few meds by October or so, especially if I can figure out how to get some exercise.

Now to the fun stuff:

Cade is now 6.5 and about to enter first grade. He is a little big for his britches and is usually one step ahead of me in his great ideas and negotiations. Cade loves a good “legend” and likes to be in the middle of the action. He also loves Legos, Bakugans and anything involving weapons or teetering on edges of high objects. This week, he prayed for a hurricane to come. I really enjoy “reading” his drawings of his plans to conquer. He wants to be a ninja when he grows up. He also has considered being a spy, but the kid can’t keep a secret to save his life. I think he likes the violence and technology combination in the job description. On Sunday, Van made a plaster volcano with the boys, and they were in heaven. Cade signed up for soccer again in the fall, and he continues karate. Last week, he went to a mini tennis camp and loved it. He wants a skateboard and a Nintendo DS, but I continually say “no”. Cade still loves his stuffed animals, and has trained his siblings to make sure that all 3,000 of them are properly in place each night before bed. It is a bit much to find Daddy Bear, Conyur (Avi’s unicorn), Baby Bear, Baby Jaguar (that suspiciously looks like a tabby cat), Baby Raccoon, Rex, etc. all before bed, but it is really sweet at the same time. He also loves his Paper Jams electric guitar and Van’s old telephone that has some David Crowder on it. I have caught him lounging in a chair just listening to it. Pretty cute.

Zane is 4 and will be in the Pre-K class on Tuesdays and Thursdays at Parent’s Day Out at our church building. He is a very active climber, but at the same time is a mellow peacemaker. He is usually in another world of pretend, and a straw is not just a straw. It is a fire hose, then a drumstick, then a triangular place for the birds to sit. His obsession and the reason he gets into mischief is balloons and gum. He can make and tie 20 water balloons in the bathroom before I even realize he is missing. He is also the messiest child on the planet. It doesn’t bother him a bit to have mud dripping from him or the aforementioned balloons squirting all over the bathroom. Patting the flour in the pancake bowl seems like a great idea. He has no concept of what is dirty, and will eat gum from the sidewalk or wipe his sister’s nose with a Kleenex. The latter is more helpful. Zane is super excited about soccer this fall. It was hard for him to sit on the sidelines and watch his brother play last year. He wants to be a firefighter, policeman, doctor and a radio singer when he grows up. His brother impatiently informs him that he will have to pick one—I’m not sure that a ninja is any more practical. Zane is often our comic relief. That kid is just so joyful and funny, and is often seen with Baby Raccoony on an adventure together with his sister in tow.

Avi is 2.5 and cute, cute, cute. She will also return to Parent’s Day Out in the fall. She keeps up with her brothers, and is especially close to Zane. He is a nurturer with her, and will happily be the daddy in the scenarios they concoct. She eats up the attention, and returns the favor when Zane is upset. She is all about the color purple and prefers to eat out of it, wear it and brush her teeth with it. Thankfully, she is a very reasonable child, and we can talk her down if the purple bowl is in the dishwasher or if the purple toothbrush can’t be found. Yesterday, we told her that we were dropping by the Rainey’s, and she HAD to find her plastic ring and her church shoes to visit Adelaide, which her daddy thought was really precious and helped her find both. Van loves that little girl. It is also really cute when she repeats things that she hears her brothers say. “I’LL KICK YOU IN THE NUTS!” Okay, maybe not. Both Avi and Zane like to say sweet little prayers and sing beautiful original songs about whatever comes to mind. “The Rain-bow….forever!....forever!...” Cade’s songs are more ballads with a beginning, middle and an end. He sang a great song last night with visuals and sound effects with the Jonah story.

Van is still enjoying practicing family medicine at a Scott and White clinic here in Waco, but I think he misses the friendships of med school and residency. The past couple of years have been rough on him with my health issues, so I am praying that we will have a nice respite soon. He tried out all types of hobbies in med school from birding to stargazing, but has settled into bike riding, swimming and running. So…of course now he is considering a triathlon! About 2 years ago, he ran a marathon but decided that was a bit much. He also loves fly fishing and just got back from a continuing medical education course in Jackson Hole and tested out his new backpacking rod. Van reads theology books now, which is great because I’m practically illiterate at this point and he can give me the highlights.  He has gravitated to books on prayer and following Jesus.

I’ve enjoyed being at home with kiddos. Some days I go a little nuts, but mostly I’m trying to soak up making playdough, cooking with them, learning Chinese from Kai-Lan and Spanish from Diego (only half kidding) and finding places around town with air conditioned playgrounds. I will defend Chuck-E-Cheese to the death. We’ve read a lot of kids’ books this summer, and I love it. I remember when they were smaller and would fight over my lap or just didn’t have the interest and attention span, and I dreamed of this day. Since being home I am once again astonished at the stack of laundry and dishes and realize, “Oh, we have five humans living here!” I don’t mind the work at all (usually-ha!), but I am still getting tired easier than I would have without the health mess more because of the emotional roller coaster than the physical labor at this point. I’m in a dry spell with how close I feel with the Lord, but I know He is with me and at work. He has a big plan for the world and for our family. Honestly, I need to put some more effort into knowing who He is and being more disciplined with quiet time. My time in Dallas made me realize how much I miss not only quiet but working with my hands on little projects such as mending or even cutting paper, so in our new house, we are planning a CRAFT/HOBBY/MUSIC room!!!!!

So….after much searching, we settled on a 2 acre lot in a neighborhood that backs up to a little river. It is still undeveloped, but we hope to start building in January. This is much different than the missionary dream, so it has taken both Van and I some time to get used to. We’re both on board now that we are popping the seams of our house. All three of our kiddos are still “Crisco-ed” (a Wendy-ism, thanks, gal!)into one small bedroom, and our tiny guest room also serves as storage, making it not-so-guest-friendly. It is not cool to ask my parents to sleep on a bunk bed. We’re excited and scared at the same time not wanting to make any huge costly mistakes, but so far, so good. I’m especially excited about the only upstairs room that will serve as a prayer room so that we have a quiet place to go.

We have promised the children a dog. They love animals, and our dear Sir Hiss, the bearded dragon suffered an early death at one year old. Before that was Crabby, the hermit crab that lasted 6 months. Maybe we’ll do better with a dog! Zane is determined that the dog will sleep in bed with him, but I am steadfast that it will be an outside pet.

I managed to lock myself in the bathroom last week. It was right after we had it painted, so it was completely stripped of anything useful to take off the doorknob. I resorted to banging on the door for my six-year-old who was really excited at the prospect of freeing me (thank goodness). He worked with the child lock on the outside informing me not to touch the door handle. When there was a break in the movement, though, I jiggled it to see if it was free and smashed his fingers. Woops. He went off screaming and crying, “I’m never going to help you again!!!”. Great, just great. Thankfully, a few minutes later, he came back giving me “one more chance” and supplied some screw drivers (and a box cutter???) under the door rescuing me. His knowledge of the forbidden tool closet came in handy that day.
.......

My children are in Utopia with my folks (yes, again). Don't I have the best parents EV-ER? After we found out that I had to take on at-home IVs again (see previous post), we were so tired and down in the dumps. We went to Sea World with friends a couple of days later (both very fun and very hot), and it is only an hour and a half from Utopia. SO...we rested that night at Mom and Dad's house and went to church the next morning. It was so great to be there. Half the folks there knew me when I was a wee lad...lassie, and they were so happy to see me "out and about". I have eaten homemade ice cream, lovely slow cooked pintos, hams and briskets, and 20 different, wonderful versions of green beans over the years from this church. We had "dinner on the grounds", you know. Two of the ladies there have sent me at least a thousand cards over the last few months, and one of them had my favorite quote of this season. (Mind you, I'm probably 20 pounds over the clothes in my closet after that blasted steroid, and it is not from "swelling" unfortunately. This will take some time and energy. Okay, some of those clothes I haven't fit in since before Cade, but I'm still holding on to hope- ha!) Anyway, this delightful lady bounced around exclaiming how glad she was to see me, and then got serious saying something like, "Are you eating enough? Are you gaining your weight back?" Oh, bless you, woman. That was music to my ears. It was especially warming because I had to wear my yoga pants, t-shirt and flip-flops to church that morning because in our haste, I had forgotten to pack proper attire. In this traditional little church (that is a block from my parent's house-Dad puts bikes in the back of the truck, and the boys ride them home after services), everyone welcomed me and said not a word about my casual clothing. Neither did anyone mention my rowdy crew on the back row, but instead told us how sweet they are and spoke to the children. That says a lot about the heart of Jesus in these dear folks. Also, they have supported Mom and Dad on their end of things as they have helped us, feeding kitties and lots of offers of other practical helps. They have prayed and prayed and prayed, and the Lord is good.

The children return tomorrow. Dun-dun-dun-dunnnnn... But wait, there is more! The parents are returning with them for a day and a half as bonus so we can do more settling and they can take care of kiddos while I do a lab draw. Yea!

My newest gripe

Evidently most of us carry around a virus called CMV. This isn't a problem unless you are immuno-compromised, which I am in some ways. My CMV level rose a couple of months ago and we battled it down to almost nothing, but in the last week, it has shot up again, and we have to start the treatment over. This began with a crazy expensive drug that we struggled to get approved by insurance(again) and dispensed (again), and now that I have a bottle full of it, it has been discontinued until I finish a regimen of....sigh....at-home iv drug (again). Yuck and double-yuck. This takes an hour in the morning and an hour at night, and I have to sit still. This puts extra work on Van, and he works hard enough as it is. Although I don't question the necessity of preventing infection from the CMV, the side-effects that slow the healing progress are frustrating, and I'll have extra visits to Dallas to monitor the infection.

This has been the biggest disappointment in awhile, and it is hard to bounce back. We ask prayers for healing from the CMV and trust that the Lord is listening.

The next post will have some updates on kiddos and such, but I just felt like griping only, and they have been a joy.

A Salute!

I turned in the apartment keys this morning grateful to the kind manager of the complex and to the housekeeper who gave me a departing hug. (She had also left me a note in the apartment blessing my family the last time she had cleaned which was really touching.) I went from there to the valet parking crew at the doctor's office. They were all smiles greeting me like old friends, and I went through the double doors to the ladies wearing brown jackets eagerly awaiting those needing wheel chairs who cheerfully greeted me, too. Mind you, this is one of the biggest buildings known to man. The ladies at the front desk greeted me by name, and on and on it goes.... On one hand, it is a bit depressing to be recognized so easily at what can be a bad-news facility, but they have all done this from day one, and treat each patient with kindness and gentleness. So, I salute you THOSE-WHO-MAKE-THE-WORLD-A-BRIGHTER-PLACE!

Kiddos are having a blast in Utopia. I really liked them being at VBS and being loved on by the same folks who have loved on me and my folks for years.

My doctor's appointment went well. I have a low-grade fever and a high pulse rate, but otherwise am pretty doggone good. I get to skip coming to Dallas next week, and will just have labs in Waco. Cool.

Pickups and Skunks

The kiddos and I drove into Utopia for the first time since December, reciprocating waves from folks gathered at the volunteer fire station and those driving big pick-up trucks because they have a good use for big pick-up trucks. Cade instructed us all to close our eyes through town because he had a surprise for us at the end. I thought this was funny because (A.) I was driving and (B.) we had been talking for the last five hours about seeing Grandmother and Papa, and of course, Papa Kitty. No one closed their eyes, but he did not know this because he was in the back and said for the short stint through town, "Not yet....not yet...not yet....NOW! Surprise!" We arrived at the house to a million-bajillion birds gobbling up seeds and sugar water, a baby deer not 50 yards away and best of all, GRANDPARENTS.

My children are early risers, and I am so happy that Cade can now read a clock and has the self-discipline to stay in his bed until 6:00. On Monday, he again rose early (but there was no clock in his room-bluh!) to find a skunk in the catch-em-alive in the yard. Fun times! Grandmother told him that it was okay to wake up Papa (who woke impressively with a bear growl), and he and the boys went to go find a safe place for it--carefully! I am happy to say that the mission was without incident. Grandmother cooked breakfast for us all with our various dietary preferences(and continued to cook for the next 3 days), and the Papa took all of my children to Vacation Bible School in a limo. Well, it was a better version of a limo--a riding lawn mower with an industrial strength garden wagon attached to the back. It was said my Cade emerged from the ride with his chest puffed out and was the envy of young crowd gathering outside the church building located down the block.

I'm now in Dallas for my blood treatment and doctor appointment tomorrow. I still will have these, but they are spread out enough that I'm cleaning out the apartment tonight and turning in the keys for the next transplant patient. My blood clot has complicated life a bit, but it isn't any worse than anything else we have dealt with. It is all relative now! I think I'll get back to Waco in time on Friday for a date night with my man. That will be really nice. Mom and Dad have the kids in Utopia until Saturday morning (bless them), then Van and I will meet them somewhere on the road to steal our children back. Knowing my husband, we'll stop somewhere fun along the way like a State Park (providing that we're not sweating bullets) or maybe even Aquarina Springs?

Thankfulness

We're going to be okay. Mom and Dad came and got us through some rough days of me sitting in a chair feeling really, really lousy with my foot propped up and zero energy or motivation. They came in like little army ants and managed the household for several days. Van was able to go to work on Friday. All my issues have resolved enough for me to be respectably functional. I don't have much computer time, but I want to thank God for answered prayer. Van is home today, Parent's Day Out is tomorrow, Wednesday is the follow-up doctor's appointment in Dallas, and Van's mom is going to take care of the children in Dallas Thursday and Friday as well. This should be a good catch up week.

Our biggest news is that my 100 day bone marrow biopsy showed no evidence of disease. You would think that I would do a happy dance, but it makes me just want to collapse in thankfulness and take a nap!

We plan on decorating the kids bikes this morning for the Woodway 4th of July bicycle parade and spending time with dear friends for lunch. I have been quite the hermit for awhile now, so it is a stretch for me, but it will be good. Happy 4th!

a new kink in the wire

It is days like this that make it hard to remember how far we have come. I have a blood clot in my leg that will make life more complicated for awhile. The troops are on their way. Mom and Dad (as well as Van's mom next week) are back at it. Humbling. Van had to cancel his conference (and fishing) plans in Jackson Hole for tomorrow. I was so sad for him to have to do this. There will be other opportunities, I know, but he could have really used some mountains and quiet.

I'm pretty puny with the leg swollen up, my bladder infection, and the effects of coming off of the steroid. Today, I was also just so bummed that Van ran the show, made a thousand telephone calls and filled sippy cups by himself while I read books and watched cartoons with kids. It was so great for him to be home to do this, but it was really tough, too, especially in the morning. We did better in the afternoon when we had a little bit of a plan. Cade played with Legos for nearly an hour without moving, and Zane was on his airplane (one of two--the other is at the 'mchanic) working on the motor with his baby racoon. Avi slept for a blissful 2 1/2 hours, and woke up happy.

We have to remember that these are temporary setbacks, and that we've made it through the big stuff as well as some recent big treatments. Bumps in the road. We are so thankful for family and friends and the Lord who brings us together. We pray for healing and for joyful hearts who seek His kingdom first.

God is good. All the time.

I'm listening to Johnny Cash read the book of James over and over. "Count it all joy when you fall into various trials..." Ugh. Again???? I've had a bladder infection for more than a week now. It is not responding to antibiotics, so I'm remembering to pray again. Kiddos were crazy this weekend, so it was challenging. I'm also off of steroids completely, so I was pretty grumpy and puny. As long as I'm complaining, it is so dad-gum hot outside. It makes it difficult for someone like me who can't get in the sunlight much (15 hours of sunlight a day this week!), can't swim with kiddos, and has kids that are ready to go somewhere and move around on a hot afternoon. Swew. Okay. Enough of that.

Had a great time with my sister. The kids were great, and she was great.

Please pray that my bladder infection will go bye-bye. I'm out of computer time. More later.

Blessings

LAURA STORY - "BLESSINGS"
We pray for blessings
We pray for peace
Comfort for family, protection while we sleep
We pray for healing, for prosperity
We pray for Your mighty hand to ease our suffering
All the while, You hear each spoken need
Yet love us way too much to give us lesser things

Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You’re near
What if trials of this life are Your mercies in disguise

We pray for wisdom
Your voice to hear
And we cry in anger when we cannot feel You near
We doubt Your goodness, we doubt Your love
As if every promise from Your Word is not enough
All the while, You hear each desperate plea
And long that we'd have faith to believe

Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You’re near
And what if trials of this life are Your mercies in disguise

When friends betray us
When darkness seems to win
We know the pain reminds this heart
That this is not, this is not our home

Cause what if Your blessings come through raindrops
What if Your healing comes through tears
And what if a thousand sleepless nights
Are what it takes to know You’re near
What if my greatest disappointments
Or the aching of this life
Is the revealing of a greater thirst this world can’t satisfy
And what if trials of this life
The rain, the storms, the hardest nights
Are Your mercies in disguise

Touching song, isn’t it? It has been a couple of months of honest-to-goodness trials for our family, and although we’ve been shakey, our Lord has been solid as a rock, unchanging, the God of Abraham, Isaac & Jacob all those years ago.

I’ve been getting more and more good news. All of the complications/setbacks are resolving, and we expect that I will now be spending most of my time in Waco instead of Dallas-a big flip flop. This is wonderful and comes with new transitions as well. I’m a bit nervous about keeping the children swept and the house fed. Oh, shoot. Well, it certainly didn’t always happen before all of this, either! Actually, I am looking forward to being the nurturer again. It will be great, and I’m kicking out as many helpers as I can.

I will tell you what I do not like. I do not like Puppy Dog Eyes. These are the eyes of people who spot me or stare at me in a store or library or wherever and look with pity and then seek to have a conversation. Sometimes the comments are truly strange, and I don’t know how to handle it. I am shy by nature, and I am completely socially inept after being away from the public for months, so these situations are really awkward. I am finding though, that if I wait long enough, they’ll quit asking me personal questions (which I now feel okay about being vague) and tell me about their friend/family member that is dealing with some kind of health issue—which is what they really wanted to get off their chest. They are seeking someone with whom they can identify. I’ve had a person break down in the MIDDLE of the main aisle in Target, and then a daughter whisked them away before I had much of a chance to respond at all or go to the side and pray. I have no idea what to do with this, so I continue to be awkward, pray for them after the fact, and study my grocery list.

That said, I had a good laugh at my awkward self a few days ago. I was navigating a very nice, cramped neighborhood in Van’s Ford F150 with a giant iced tea. I was so thirsty after dehydrating myself for a 4.5 hour locked-to-the-machine treatment. Well, the cup split down the side, but not all the way. It was slowly filling up Van’s cup holder, and I was leaning over at stoplights using the straw as fast as I could while cute little convertibles and every nice car you can think of was picking up their child from school and probably wondering what was that person in the giant truck doing? Are they having problems? Should I call the authorities? Do they need an ambulance? Too funny. I had one paper towel, and not a drop was spilt!

Because my apartment time and nice cramped neighborhood time is drawing to a rapid close, so is my project time! (Not sure when I’ll be officially out, but I won’t be there hardly at all next week—just some driving?) Most of the time, we have endless cycles of dishes and laundry, so it is really nice to have a completion. In bits and pieces I’ve been able to take care of some little things that have piled up over the years such as repairing Van’s grandmother’s tattered tablecloth, organizing CDs, repairing toys and mending costumes. I also was surprised to get purple chewing gum out of Cade’s white fuzzy baby blanket that he had in the NICU. Goo Gone is AMAZING. I would be a spokesperson for them after trying so many other methods. Next, I’m going to attack the back seat of the minivan with it. I'm not sure what Zane has done with it!

I have a few hours today and tomorrow to pin together Van’s T-shirt quilt that I started forever ago. It wasn’t entirely my fault that I procrastinated! I’ve asked for one more shirt for the corner for the last 7 years, and I got it two days ago. I won’t have time to sew it together completely, but the hardest part of making something large is the children sitting/sliding/sledding on it when it is supposed to be flat on the floor and I’m measuring and cutting. It won’t be the awesomest ever, but it will be special to him, and it is backed with really soft material. It has football shirts from high school, Boy's State, some vacation shirts and one from med school. Also, I’m 2/3 finished with making very simple (but hemmed and washable) bible costumes for my friend’s VBS class in July. There will be 12 in all, and they are turning out pretty cute. My IV pole runs very smoothly at the sewing machine-it likes it!, and the new sewing machine has not even given me a hiccup, so it has been very enjoyable. It reminds me of The Three Amigos, “Sew! Sew like the wind!”

Kiddos are doing very well. Cade and Zane are having morning vacation bible school (complete with half of Cade’s kindergarten class and teacher “but she’s not my teacher at vbs” (brief sad face). Sweet thing.) and swim lessons in the late afternoon. I booked the grandparents nicely, didn’t I? Avi is content to go to Home Depot with Papa.

Next week is full of “CarlyDanielandElise.” These are the cousins that better get over their cold so they can come and entertain my children who have been asking every ten minutes when they will arrive. I’m hoping to get to spend a lot of time with the whole crew and my sister. It is guaranteed to be crazy fun.

Good news!

Psalm 81:10 skip a few 16
"I am the Lord your God who brought you out of the land of Egypt. Open your mouth wide, and I will fill it...he would have fed them with the finest of wheat; And with honey from the rock I would have satisfied you." (Read: I opened my mouth wide, and God filled me up with good stuff!)

Did I ever tell you how much I love my home IV pole? And, yes, I am really growing attached to the extra 4 hour IV twice a week in the doc office. Today, I did both again, wondering if it was the last time. Neither had made my virus counts budge in the last month++, so both the PA, the doc, the ID doc and I made a Plan D to start a new, harder, more side effects/risks IV tomorrow. Problem was, there was a shortage of the Plan D medicine, so it would have to be done either in the hospital or at the doc office (no home health), and they were having a hard time getting through the red tape. We've been toying with that part for at least a week. (This virus is one that everyone carries around, but it is just a problem with me because I have a low immunity, sort of.)

Today, I went in about 8am, finished at noon and literally waited until 4:30 until my viral counts came back because the docs and I knew it needed to be a face-to-face conversation (and they might have kidnapped me for another infusion or something). For the first time in weeks, the counts were much lower- less than half! Plan D is cancelled until further notice, and I "get" to keep my IV pole and my twice a week doc IV! Ye-haw! Who says desperate, "please, please, please" prayers don't work and that God only cares about the "big" stuff? Cade reminded me that God can fix things instantly, and I am a believer after today.

(What does one do for a full day waiting in a doctor's office? I previewed some children's literature for gifts and for my own kids, downloaded some audio books, uploaded some photos, emailed my mom twenty times, started a perpetual birthday list, ate my sack lunch-I've learned to ALWAYS leave home with food!, etc. Pretty much the life of luxury if it just weren't in a plastic chair with beeping all around.)

Knock out skin problems Step 1. Lower steroids Step 2. Knock out virus Step 3. We're moving along! These are all in progress, but they are all actually progressing rapidly at this point! The problems and medicines play off of each other, too, so as one gets better, they all get better, praise the Lord. I even got my first break this week from the blood treatment machine. Bliss. I'm taking Van's truck in for an oil change instead--where do you get an oil change in Dallas? Surely they do that here.

Enough of that. Cade was adorable at his kinder graduation on Friday, and I was so thankful to be there. I was so proud of all the graduates and how much they have grown over the last year. I was also thankful for his caring and capable teacher and all of the staff that makes his school a super place to be. It really feels like a good decision for our children to be raised in that environment. His favorite part was shaking the principal's hand. My favorite part was seeing him sing and dance like a little go-getter in the music program. Cute, cute.

Van and I took advantage of the extra grandparent time and talked to a builder. We also looked at a couple of new homes to get an idea of what we would like to build. It was really wonderful and overwhelming at the same time. During the weekend Cade went to 3! wonderful birthday parties (one boot camp and two swimming), and Mom and Dad took Zane and Avi to splash parks and even a kiddie amusement park that I have never managed to get to. Grandparents are the coolest. I cleaned out the children's winter clothes and bagged them, so needless to say, by Saturday night I was grumpy and pooped, and Cade went on a funny social buzz for a few and then was ready for bed. This weekend I pledge to not do all that! One of my favorite times was playing Candy Land with the kiddos. Van dished out the cards, and I kept hands off the board. The one with the most self-control was Avi who moved her Dora two purples at a time until she won the blasted game. When she was napping and grandparents were at a movie & Van was swimming at the Y, Cade & Zane & I fixed peanut butter cookies. Here's the recipe we used. http://allrecipes.com/Recipe/Easy-Whole-Wheat-Peanut-Butter-Cookies/Detail.aspx I just dropped the goopy dough, and it worked just fine. Also, I should have waited until it cooled to try to eat it, because it just fell apart. Doesn't everyone eat cookies with a spoon, though? Crazy busy weekend.

Van is on call this week, and his mom is taking care of all 3 all day now that Cade is finished with school. Also, I scheduled swimming lessons for both boys this week. Wasn't that kind of me?

We should all settle down pretty soon, and I should feel better soon! Thank you, Jesus.

Funner Stuff

Monday and Tuesday Mrs. Kay took care of kiddos. They had a blast. The highlight was popcorn with some type of cinnamon. I called near the end of the day, but Van said that Kay kidnapped the children. Too good.

Van took off a few days and was domestic. Somehow he took three children to see a movie. Brave, brave man. They all really enjoyed it, and I think even sweet Avi made it through well.

Cade is in a happier place in life. God is good.

I've been navigating the big city and not getting lost (much). I don't really like to run errands, but seem to a lot "as long as I'm out". I've been trying to cook from scratch to avoid salt, and am finding that it takes some effort to think through flour, vanilla, etc. for the cupboard. Julie inspired me with Pioneer Woman (stinkin' hilarious), and I've made a couple of her recipes. The problem is, I don't know how to scale down to one person very well, so I end up eating whatever it is for several meals in a row! I've always liked leftovers--less effort, less dishes, yummy food. I miss HEB terribly. The stores here are overpriced and cramped. "Tom Thumb" is about right.

I'll leave in a couple of hours to go to Waco for the weekend. (I'm at the doc's.) I'm really looking forward to seeing everyone. We should have some nice time together, and I might even overlap with my parents on Monday. Bless 'em.

+56

Good: We've knocked out the skin problems. Steroids are being decreased. I feel pretty good, too, and am able to function like most.

Hard: We're working on other somewhat-anticipated complications, but it has been a part-time job for me. I'm in some type of office most weekdays for a chunk of the day, and I have work to do at the apartment with the IV that takes a couple of hours of focus, plus trips to pick up supplies. It has been much more slow-going than we anticipated. The steroids have taken a toll, so it will take awhile to get back to looking and feeling normal. I'm very glad to have a decrease.

All that said, we are making it, by the grace of God. He has provided a community, especially our folks who have held on to us through this. I am not puny or sad. In fact, I'm actually doing well with it all, just impatient. That is the latest health report. Funner stuff in the next post--it felt weird to put the two together because I feel like they are two different worlds.

prayers for a little boy

Our sweet little Cade is going through a tough time. He has been such a trooper through all of this mess, but as of late, he is more anxious, argumentative and aggressive, most notably with us or his brother. We are praying peace over him, and that we will know how in the world to handle his little heart without him dominating our family life. Honestly, I'm out of daily practice communicating with little ones, so my verbiage is lacking, and I'm struggling with keeping up with him--he is very quick in his thinking and gets himself in trouble before I can help him get out of it. I'm trying to lean more on the Spirit to know how to get Cade through the last few days of school and through this transitional time with me being around more.

Be gone steriod beast!

Weekends in Waco are the best days ever, despite me having to heavily lean on the man-of-the-year to save me from my own children occasionally! We're doing our best to live it up. We had a great picnic at Lover's Leap and remembered that supervising adventurous six-year-olds and their tag-along brothers might be important. A fence, a boundary, a partition doesn't always translate to those who are learning boundaries. (Whew.) It was still very fun. Van and I went out on an honest-to-goodness date night and left the children and the tornado watch (thanks Aubrie!). We had some great pho soup, drove around pretty neighborhoods looking at houses and topped it off with a Whataburger milkshake WHILE communicating and laughing. Can't get much better than that!

Please continue to pray that my steroids will decrease this week, preferably beginning Monday. A carrot has been dangled in front of my nose for several weeks now, and I can smell it. I would really like to just grab it and gnaw on it and say, "Whatcha gonna do now? Huh, huh?", but I suppose sound caution should reign. It would really simplify life if this one drug could be out of the picture.

Happy Tummy

Renee and I relaxed for the morning and do a little bit of every kind of nothing. That was awesome. I was able to play with the new sewing machine for the first time, and it runs so beautifully. In the afternoon, I expected to have a very short therapy, but the new photo therapy machine is broken, and my central line is consistently giving the nurses fits, so it took several hours again. The nurse today was wonderful and patient, and I appreciated her calm personality. I really hope I have her a lot. She was helpful.

The day ended with a lesson in how to broil a steak- yum! That girl can cook. It melted in the mouth. We then figured out how to caramelize the top of chocolate creme brulee using the broiler on a very modest apartment oven as well. We rock. It was awesome. To think that I used to be scared of a little broiler....

Skin issues are better, but will still be addressed at the doc's tomorrow. We'll see if I can get through the visit without a new medication. Sigh. Praying for LESS medication.

Abasting and Aboundment--words I don't use often

This week in review with a re-arranged Philippians 4:

12 I know how to be abased, and I know how to abound. Everywhere and in all things I have learned both to be full and to be hungry, both to abound and to suffer need.

Then later in the week:

6 Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made known to God; 7 and the peace of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus.

I’m praying to be here:

8 Finally, brethren, whatever things are true, whatever things are noble, whatever things are just, whatever things are pure, whatever things are lovely, whatever things are of good report, if there is any virtue and if there is anything praiseworthy—meditate on these things.

And somehow in the middle of things:

13 I can do all things through Christ who strengthens me.

I began the week with the photo treatment of my blood. This was a tougher process than I imagined because of the sheer length of the process and the intense involvement of the nurse, but I feel like now I am kind of in the groove and know how to prepare better to pass the time in more productive ways. Patient education is very important to the nursing staff, so I am told every few minutes (literally) where we are in the process. I would rather not be involved, actually. I would rather mend, read, or type without knowing what my white blood cells are doing. Disgusting. Ugh. This was a kick in the gut, and thankfully, my sweet friend Julie was here after the toughest times to distract me and kept me from completely losing it, knowing that there are many more of these days ahead. Such a sweet spirit.

[Today the treatment went a bit faster, and tomorrow, probably, I will be on a brand new machine that should cut down the time by several hours! This is very, very good news, and I calculated (I didn’t really do the math because I don’t like to, but I figure) that it would save literally days over time. Days!]

On Thursday, we left for Waco to see the family, and those were good times. I made all sorts of pledges to my children about ways we would spend time together. On Friday, we closed on the new property (yea!), and we were to spend Saturday morning there climbing trees (okay, probably not me—I don’t go above 2 feet), playing in the dirt and throwing rocks in the river-can it get any better? We then got several frantic phone calls from Dallas saying that I needed to return ASAP to begin an IV antiviral drug. YOU HAVE GOT TO BE KIDDING ME. It was all due to a misunderstanding in-between the office folk (oh, yeah, and because I need the drug to be healthy-still working on that perspective…). Van quickly checked out a new baby at the hospital and we picked up ice cream just so I could watch Zane eat it—that boy loves chocolate. Van and I were able to wait until Cade was out of school so that we could say goodbye to him, and we left my parents yet again with all three children, one wailing. We did have a few minutes for Van to swing by Taco Bell (never, ever...ever again) while I grabbed the fussiest little fur clearance vests from the outlet mall (matching!) for my nieces. That took the edge off for some stupid reason, and then my frustration was mostly at Taco Bell.

We arrived in Dallas. A courier from Walgreens arrived at the apartment with a giant box of medical supplies and the IV drug, and about 8:00pm, a home health nurse arrived. We endured a grueling process of paperwork and instructions about hand washing(!). I can out-handwash her any day. She was incredibly nice, but it was very humbling. I think the hard part was that she didn't know my history, my abilities, and was not familiar with my treatments or drugs--very, very few people are. Van was so patient, and we got through it. So now I have my very own personal IV pole that I will use for the next 2.5 weeks, and I get to do medical stuff which I just LOVE. Fun…..oh, where is that whatever is true, whatever is noble….

Saturday was actually quite enjoyable. Van and I went to the Dallas Farmers’ Market and bought beautiful produce from vendors. Little cucumbers, pineapple, red peppers…just gorgeous. I’ve been buying from Target, so it was divine. Van went into a neat little fly fishing store and bought a little 4 piece fly rod for backpacking that was made locally. It is so cute. I can’t tell you how excited that I am that it will fit in a suitcase on an airplane! Yee-haw! Van ate Julie’s enchiladas for breakfast, lunch and snacks with fresh avocado from the farmer’s market and was in heaven. He was an addict. Saturday was a good day.

Mom and Dad are amazing with the kids and are exploring every inch in Waco. Mom got very excited about the water spray parks, and when they took the kids to ride bikes on Saturday and saw that one was working, they let them get in with their clothes on. It made a big impression on Avi. “I got wet!!!!!” Good stuff. I bugged my parents to death about watching the shuttle launch with Zane and Avi. I was so excited. Zane’s only comment, “It fell apart.” Great. The kiddos are getting some really neat time with their grandparents. Oh, and they did get to go to the new property and hang out! I can’t thank God enough for the beautiful relationship that he has formed in my family. Very thankful. I loved growing up with my grandmother.

Zane and Avi told me about the hot air balloon that went over the house. Zane was impressed with the loud noise that it can make with the fire, and Avi said, “It was wight dere! It was wight dere! It was so pwetty!” Cade informed me that he, "ate cow... a brisket... It is called BBQ," for supper. Oh, and that he, "will be the caboose, not the line leader tomorrow." Very important job. I'm thankful for friends that shared photos and video from the Parent's Day Out program! An unexpected blessing for the day!

We’re attempting to make the shift towards more time with the kiddos on the weekend and more independence for me. This sounds crazy given that I’m booked with so many appointments during the week—especially after the developments of late, but with my energy, it makes sense to start a bigger transition. It just is time. Also, the new treatments seem to be the plan of action going into the summer, so we feel confident that I’m on the road to healing and that there shouldn’t be any more big surprises. It seems like we are less day-by-day and more able to plan for the somewhat-tough-but-oh-so-much-better couple of months ahead.

Tomorrow holds hanging out with Renee with an attempt at Martha Stewart's chocolate creme brulee, learning how to broil steak and sewing projects. We're being domestic. Hopefully a new-and-improved photo treatment machine will make its debut in the afternoon. Not too bad!

The ebb and flow of life really makes me think about where I put my trust. A new friend asked me what she can specifically pray for. Today, I think I would ask to be off of steroids quicker than projected. I'm blowing up like a Willy Wonka movie, and I know that they are healing in some ways but holding me back from healing in other ways.

Another goody from Philippians:

23 The grace of our Lord Jesus Christ be with you all. Amen.

A complete night's sleep! It has been weeks, and I am SO thankful. I feel caught up from the crazy wonderful weekend with the children now. As I cared for them, added a new cacophony of medicines and steriod injections, then added a too-long walk that left me with new skin issues I crashed for a couple of days. My friend Carrie and I laid low except to go see the matinee African Cats by Disney and had a nice work out that afternoon (that aggravated the skin issues a little more--hard to know what to do). The movie was amazing. I really enjoyed viewing the gorgeous Maasi Mara on the big screen. The footage of the animals was incredible. I was really impressed with the quality of the film, and it was great to share that time with Carrie.

Today will be the first day of the blood cleaning treatment. My friend Julie brought me some extra books and snacks enjoy the 4+ hour procedure. I think I'll just be sitting/laying down, so it shouldn't be any big deal, and I have a bag of small projects to work with. Today it will be attaching the elastic to batman masks. Very important in a 6-year-old's world! I'm most nervous about what the nurses will do with my central line site, and I pray that the nurses are wise can think of an alternate solution to applying the standard cleaners and scrubbing. The bandages are not behaving, and my skin is very sensitive, so we've got to find a solution to that or they may not be able to peel me out of the seat when finished. Feet are better, and I'm not itchy. Tomorrow, I will have a doctor's appointment followed by another blood cleaning treatment. Regardlless of the agenda for the day, my appointments have been hours and hours long. I feel for the nurses, and it must get quicker soon or there will be a revolution in the waiting room. Some of these people did not bring their batman masks, and they really feel lousy.

All of these appointments are interrupting my sewing projects, but that did not stop me from exchanging my dead sewing machine for an upgrade within a few hours. As I was ordering it from Amazon.com (beat all deals in town), the computer started to encourage me to order within 20 minutes and get $10 same day shipping! What in the world! I nervously chose the option, and a courier from Ft. Worth showed up in a PT Cruiser with my giant package that afternoon. That sure beat driving all over town or waiting for 5-8 days for the free shipping, not knowing when Van would be at the house or I would be at the apartment. Too cool. Now it is time for me to read the instruction booklet, watch the DVD and go to town on my neglected projects. This should be fun.

We close on our 2 acre lot on Friday! Mom and Dad will be staying the weekend to visit and continue their help with kiddos. I am very excited and am starting to dream about the home we will build soon. Currently, our three children happily share a tiny room, but we think that as they grow, our set up will not be practical much longer. Exciting. I also intend on taking Van somewhere after the kids are asleep one night. It has been awhile since we have been a couple of cool cats on a date.

Flex-i-bil-i-ty

Thursday my doctor decided that it is time to take care of the rash and "open a can of whoop--- on it." This was especially amusing coming from my introspective Christian doctor. So, I had a few more drug infusions over this weekend, picked up some more drugs at Walgreens, and I have an additional treatment plan for the next several weeks tapering into months (outpatient).

This treatment is still mysterious to me. Basically, the T-cells in my blood are cleaned out so that they don't produce a rash or incite more dangerous things like gut problems in the future. It is supposed to be a no big deal kind of treatment, but it takes several hours a couple of times a week in the beginning, so it gets tedious. The blood is taken out via my central line, treated with light, and put right back in. Voila. There shouldn't be any side effects from it. ("Van, I can't remember what a T-cell is." Explanation. More questions. "Susan, they didn't teach you this in biology. They don't teach this in medical school." Evidently there is much to be thankful for out-of-network specialty specialists who specialize in such matters.) I begin Tuesday.

The rash itself is much improved, even in this short amount of time. The bottoms are my feet are painful when I walk, but with shoes, it is very tolerable on an outing, and I don't think about it. I haven't pushed cardio exercise. Swelling, swelling and my cute new jeans are looking doubtful. Little, almost no sleep for days and days. (I finally figured out how to fix the clock on this blog--currently 3:03 am, and this is typical of most nights.) All temporary, all fixable by the grace of God and his mercy. I'm reading a children's biography of the missionary Amy Carmichael, and have been inspired by her tenacity in the midst of illness and her faith. Good stuff.

Van and I took care of our very own children on Friday. It was challenging and wonderful. We tag-teamed a bit and got down to some nitty-gritty with household managing and disciplining. Our eldest is close by with lots of ideas how to love on him, and at the same time has been quite argumentative. I'm re-learning what battles to pick, and how to best serve his needs without catering. Aside from being ultra sneaky (with toilet brushes, purse contents, etc.), Zane has been pretty low-key. Avi has had her emotional moments, but is fairing well for such a transition. They are hanging out at the apartment with us, and we enjoyed an outing to a park directly beside Love Field with the jets passing right over us, complete with mama and baby ducks. They all loved it, although Avi decided that they were "too yowed" and "Plug your ears!" She is talking like a little lady. She cracked us up on one of our outings when Van and I were trying to lay out a plan, and she came up with, "No. Daddy goes and gets coffee by himself. I go in with Mama and Zane." And, that's what we did. E-gads. At almost 2.5 years, I'll take it over tantrums.

We hope to get together with Van's side tomorrow at the local air museum to check out planes close up and celebrate Mother's Day with Van's mom. We'll see how it all plays out. We've just been planning a couple hours in advance the last couple of days, so it has been tricky. It is definitely a more "normal", though, and I again nominate Van for Husband of the Year. Honestly, he's been a Wife, too, but I don't think he would appreciate the title. I think I'll nominate the little ones for Kids of the Year, too. They have been troopers and been the most flexible of all as we change up plans on them.

I feel like I'm finally getting the lay of the land around the apartment, so it feels more comfortable and I can help my people find Target and all its wonderful contents a little better. Independence with cooking and cleaning is to the point of where I feel bad that people are supposed to stay with me, but I suppose that it is the safest way.