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.