From good news to better news

We went to a doctor visit today in Dallas. Blood levels and bone marrow levels are stable, so we don't have to jump into a transplant immediately. He also let us know that a potentially perfect match will be available in Feb. (This person was not in the running before because they traveled to a country with malaria, but the waiting time is almost up.) Our current match is a 9/10, and the potential match is a 10/10. If this person passes the high-resolution testing, this could lessen the risks involved with the transplant. This all is very good news. If I'm not healed prior to the transplant, it looks like it would be scheduled for early March.

doctor visit

Tomorrow is our appt with the transplant doctor and another bone marrow bibopsy (anyone a Big Fat Greek Wedding fan?). Please pray for a normal biopsy. We'll get the results in a couple of weeks. Also pray that our spirits will stay happy. Doctor visits sometimes feel like a kick in the gut, and I don't want us to succumb to what we see or hear but to what is possible through His goodness.

Healing in progress...one way or another

A few significant things have happened.

Our sweet 4 lb. 11 oz. baby boy just turned 5-years-old on Nov. 8. I'm not sure how that happened so quickly. All of a sudden, we are preparing him for kindergarten and the big wide world. My favorite Cade quote is now, "What took you so fast?"

Last week Mom and Dad took care of the children for us while we attended a school of healing. This was outside of our church culture, but the knowledge and experience of the way that the Lord heals today has been something that we have been pursuing for maybe the last five years. With my health issues, it was crunch time! These four days were devoted to prayer, worship and the deepening of a relationship with Him. The people at the conference were just regular people from all types of backgrounds and all ages. During the day, people that were interested in acquiring knowledge and experience attended, and at night it was opened to the general public, many of whom were obviously in need of healing. We were amazed. I don't think that I will ever be able to look at the Bible (or the Lord Himself for that matter) in the same way. I feel that I need to re-read with my new perspective after the scriptures of healing came alive in flesh in our midst.

Well, was I healed? We are confident that this is probable. On Monday, I will have a blood draw. We took just about every opportunity for prayer available, and we saw the Lord in His compassion at work in other people. Truly amazing.

Also significant is the phone call that I received yesterday. A nearly perfect match was found. This person has made the final cut. All I know about them is that they are living in the United States. We are thankful. I'm a bit hesitant in jumping for joy. A bone marrow transplant is a wonderful thing, and again, I say we are thankful. At the same time, remember that this is very risky, uncomfortable (for the recipient) and a very long process. I'm not going to dwell on this, but please understand that I'm not giggly about it. Also, please take caution when around my children and speak wisely.

We have a doctor's appointment for the first week in December with yet another bone marrow biopsy the same day. It will take two weeks to read the biopsy.

Have I mentioned how grateful we are for all of you who pray and who check in on us? You guys are the bestest. Keep it up. Remember to pray for HEALING-- the contingency plans can wait!

Good thing

I just want to mention to all who have been able to join the Be the Match registry (and to those who wanted to but were not able) that at least two people that I know of have been contacted for other patients who need bone marrow transplants. Please pray that they will get the opportunity to help. Praise God for His provision.

Bad computers, Better platelets and Crawling Lobsters

We've had some trouble with our internet router lately, so between that and missing keys on our laptop, communication has been poor. In addition, we are in a waiting period that could change in a heartbeat with a telephone call from the bone marrow registry with a match or a simple healing touch from the Lord (or both).

We have some good news to report. My platelet count went up this month from the 40s to the 60s! Thank you, Lord! That is going in the right direction.

In other developments, the zebra chair is basted together and functioning well, the kiddos had a blast as a happy ghost(complete with a Sharpied smiley face), Scooby Doo (minus the irritating mask), and a very well adjusted lobster/crawdad that was adorable when her antennae wiggled as she crawled. My U.I.L. journalism coach/cousin would have had a field day with her red pen on that last sentence!

Freedom for captives

I had a wonderfully strange dream last night. The symbolism is obvious, so I'll spare you the commentary. I was buff and stocky and walking around in very dreary gray 5-6 story building. In walked four people of graduated sizes, and they were shackled. They were buff and stocky, too--even the one that was 2 feet high. Fear came over me, and I somehow obtained an automatic weapon and found a hiding spot. I was cornered, and I knew that at any time I could be shot, and I didn't have any way to help the others. All of the sudden, the building opened up from the walls in a lot of places, and people started streaming out, including the four who were shackled. I knew that I didn't need the weapon any more. I woke up, and realized that Zane had found his way into our bed, and we were "spooning". I picked him up and took him back to his room, very thankful that I didn't wake before the end of the dream. I had an incredible peaceful feeling come over me.

Our help

We wait in hope for the Lord;
He is our help and our shield.
Psalm 33:20

We have received so much encouragement today. So many have responded to the call for the bone marrow registry (www.marrow.org), and I am confident that this is a good thing. In all of this, we realize the importance of looking at a bigger picture that just us and our family. I don't mind at all asking the Lord for help for me, but at the same time, it is wonderful to see something good come out of all of this junk for others as well. This registry drive has the potential to help hundreds of other people in my situation over the course of years. May His name be glorified. May He be called good.

We wait, but we're not exactly sitting by the phone. Zane is getting quicker and savvier. A can opener and a can of Spaghetti-Os...coffee grounds in various containers....a package of hot dogs and kitchen shears. That was all just today. Maybe he will be a chef one day. A very quick chef.

Cade loved his new karate class. "I got all sweaty!", he said, beaming.

Avi is taking full advantage of Zane's generous spirit. She can fuss and look at him, and he will give her a bite of whatever he is chomping on. After I picked them up at Mother's Day Out today, he shared a bite of his banana with her in the car. It was quite messy, so I had to grit my teeth to commend him.

We've started the medical path, so I keep forgetting to ask the Lord to just simply heal me. I know He can, so I'm asking that He will. I am so thankful for all of you who are asking with me. I picture myself as the woman who touched Jesus' garment in anticipation of a miracle. He's that good.

That's what I'm talkin' 'bout.

From Psalm 18:

In my distress I called upon the Lord,
And cried to my God for help;
He heard my voice out of His temple,
And my cry for help before Him came into His ears.
Then the earth shook and quaked;
And the foundations of the mountains were trembling
And were shaken, because He was angry.
Smoke went up out of His nostrils,
And fire from His mouth devoured;
Coals were kindled by it.
He bowed the heavens also, and came down
With thick darkness under His feet.
He rode upon a cherub and flew;
And He sped upon the wings of the wind.
He sent out His arrows, and scattered them,
And lightning flashes in abundance, and routed them.
Then the channels of water appeared,
And the foundations of the world were laid bare
At your rebuke, O Lord,
At the blast of the breath of Your nostrils.
He sent from on high, He took me;
He drew me out of many waters.
He delivered me from my strong enemy,
And from those who hated me, for they were too mighty for me.
They confronted me in the day of my calamity,
But the Lord was my stay.
He brought me forth also into a broad place;
He rescued me, because He delighted in me.

Hope on the Horizon

We have a possible kinda-maybe-okay match! I'm not at all sure what this means at all, except that it is the first pleasant news about my health that we've heard in several months. I'll take it! We are still praying for a simple touch from the Lord, or a perfect match or anything that can heal me, but this is definitely encouragement that puts a little spring in our step. This person still may not be the best direction to head. This is step five in a process of 3,156, so we still have a long way to go. We are thankful.

(I will probably never know who matches with me, but it is hilarious to think about a twin sitting off the coast of Spain, or the Alps, or North Africa, or Germany, or England...probably not China... speaking a language that I can't speak. Do they have freckles, too? Do they crave chocolate at 3pm or resist the football season? How in the world can a person that has different parents be closer to my DNA than my own family? I told you that I wasn't interested in the genetics and that it was depressing to think about, but the hope of a real person out there is actually quite amusing. I suppose it is amusing because what can be more interesting that a person just like me? Har, har, har!)

Van wisely kicked me out of the house today for a bit of a walk. The sun was setting, and I actually saw a silver lining on a cloud. It was the shape of a George Washington wig and then morphed into a duck with three lips, but nevertheless was gorgeous.

Zane is a wild man. He is climbing across the stove to the canisters to mix the sugar to the flour and the flour to the sugar. He is finding candy that I didn't even know we had, and he is learning the art of "Tade it me." (Cade hit me.) Lip out. I, in return, am a wild woman. I can drop a stack of laundry in a flash just in time to grab the child on the third bookshelf. I can hear the sound of mischievous silence. I am tired at the end of the day, but that kid is just plain funny. The house is a wreck, but he is funny.

Cade is progressing to a new martial arts class because his teacher wants him to be challenged. I'm very proud that he is showing such an interest and such a maturity. I'm on a high this afternoon because the precious angel child told me, "You're the best Mom I never knew in the whole world."

Avi spent her day putting things into laundry baskets and then trying to figure how to get them back out. I am so glad, because I really needed her to be happy and occupied so I could watch the other two climb the curtains! She is taking about 3 bottles a day now, and gets all excited and impatient when I'm making them! I am so thankful. This is a huge burden off of our shoulders knowing that others can care for her.

Van says he has no update.

I am expecting a call from the transplant doc tomorrow to discuss the potential kinda-sorta match. Please continue to pray.

No news is... well....no news.

The answer to the ever-popular question, "What's the update?" is "Nothing." We simply have not heard back about a match, so we wait. Usually, after a person hears that I have no news, I am asked a bunch of questions based in genetics, and I just don't know the answers to these questions, either. In fact, although they are terribly interesting things to ponder, it is a scary time of life to take much time to think about how truly unique a person's DNA is, so I would prefer to talk about wallpaper or Jimmy Dean sausage or just about anything. Just keep praying, please. I know He listens.

But, because you love us and care about us, I'll assume that you want to hear our funny of the day. Zane escaped his car seat on the way to Mother's Day Out. I told Cade that the next time they got in the car I would need him to switch car seats with Zane because his is harder to unbuckle. Cade responded, "NO! Zane's car seat is stinky!!!" Zane (who talks very little) said, "I no stinky--YOU stinky!" I have been laughing all day about it.

Avi is waving and clapping and is thoroughly entertained by her big brothers.

Our church, Crestview Church of Christ, is having a national bone marrow donor drive on Sept 30 from 5:30-9:30. Anyone interested may have their cheeks swabbed (sounds fun?) to be entered into a drawing....not really...to be entered into the national registry for people like me who need to borrow very specific healthy blood. If you are ever matched, you will have the option of saving someone's life by a non-taxing IV procedure. If you are not from Waco, you may check out www.marrow.org to learn more. I suppose if you are from Waco, you can do the same. We Wacoans like to use the internet, too.

Drawing Board...

My sister is not a match. This one caught us both by surprise, I think. This means that it will take 3-4 months to search through the bone marrow donor registry for a match. (Thanks to all of you who have offered to be tested. I need to google for the website for you to register to be a national donor to be eligible for me or if someone else has the need.) So...we have gone from crisis/hurry up/make preparations mode to wait patiently mode. I guess in the meantime we just go along with life as normal and keep praying.

Avi is saying "Ma-ma-ma" and "Da!" and even a sweet little "nigh-nigh" with a wave. She is a joy. Zane is just plain funny. When I went out to the car to get my purse yesterday, he managed to find the 24 pack of Dr. Peppers, rip it open, pop the top and pour himself a drink in a cup. When he saw me come back in, he panicked and dropped the can, setting it to spewing all of the kitchen. "Sowwey."

Cade had his first show and tell at Mother's Day Out, and you would have thought that he was preparing for the boards. He took Crabby, the hermit crab. He was so excited, that I was wondering if the event could live up to his expectations. Thankfully, he had great things to report, and Crabby had his moment in the limelight.

Van has been working his cute tail off, leaving before 7, coming home about 6, and bringing a stack of papers with him. Most days, he works through lunch. The responsibility of his decisions, plus our sleep deprivation make for a tired man. He has several days off, so we're going to Utopia for a break. I'm taking the zebra fabric.

We appreciate your prayers. We appreciate a God who listens and loves. May He be glorified.

Encouraged

Avi took down 2+ ounces of formula! I stood to hold her and she drank it down like a little goat with her chin way up in the air. Then, Van sat her up on the couch, and she drank some more. She is also preferring to gum down solid green beans, bananas and muffins (!) rather than baby food mush. Go figure.

All of us are under one roof tonight. I don't think that any of us like to be apart for very long, although Cade asked me to go to a store tomorrow so that he can have special time with Daddy. I understand--I married a good man. I'm going to take the opportunity to buy some zebra fabric and re-cover a chair. The giraffe print is pretty cool and matches our decor a little better, but it is just hard to beat zebra.

We're taking little steps here and there to get ready for the transition, although we're still not sure what to expect. The speed at which this is happening is crazy fast. My sister has already Fed-Exed the goods back to UT Southwestern.

"Whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable-if anything is excellent or praiseworthy-think about such things." Phil 4:8 I've been trying to filter my thoughts through this. I'm trying to highlight the sweet part of the day instead of the difficult encounter or sadness. I never can remember quite how the verse goes, so I try to think about if my thoughts are helpful or harmful and if it is all about me and my little world or the Father. Our lesson on Sunday included the question, "If all your prayers were answered, would your world change, or would THE WORLD change?" Oooohhh, good one, Jim.

Van, Avi and I just returned from UT Southwestern in Dallas. (The boys are with my sister's family in Houston--I'll pick them up tomorrow.) We were pleased with the doctor and the staff at the bone marrow transplant center, and very thankful for Van's mom holding Avi for the 3-hour appointment. My sister is being sent a blood collection kit (I'm picturing a happy meal box with sharps in it.). She is to take it to an able body who puts the blood into viles and drops it back in the mail. We should know in about a week if she is a match to my bone marrow. She assures me that she is consuming enough chocolate and Dr. Pepper to be a perfect match. If she is, she watches Trading Spaces for 4 hours while IVs in her arms take out (and put back in) the pretty, pretty blood. We can then proceed with a bone marrow transplant (hereafter known as a BMT...not to be confused with a BLT) in about a month. The BMT requires chemo for a few days to wipe out my ever-lovin' bone marrow, followed by a 30 minute IV transfusion of the new- and- improved marrow. The doctor said that I can expect to be in the hospital for a few weeks with minimal interaction with humans and germs. If kiddos are healthy, I may be able to see them. After that, I may be able to stay in an apartment within walking distance from the hospital. After THAT (whew!), I can move to Van's mom's house in Duncanville, and then on to Waco. That totals maybe 4 months??? He said to expect some bumps in the road such as infections. Maybe 2 more months in Waco to completely be med-free, and I should have total strength by the time Cade has his first day of Kindergarten.

We've again feel like we've been kicked in the gut. Then, amazingly enough, the Lord gives us ample strength to take a deep breath and move forward.

We are praying for HEALING. Then, because we feel like we have to make some plans, we are praying for my sister to match, for Avi to take a bottle and for everyone to stay free of germs.

We feel very loved and supported. We're hoping to retain some sort of normalcy for Van and the kiddos, and feel that the Lord will help with that, too.

Antsies in our Pantsies

Somewhere in I Peter the Bible says, "Cast your anxiety on Him, because He cares for you." We did not receive the miracle of healing that we were asking for. The diagnosis of MDS sticks, confirmed by a second bone marrow biopsy. So, we are headed to UT Southwestern in Dallas to consult with a bone marrow transplant specialist (next week?). I told Van that it is hard to find the silver lining in this one, but he responded that this cruddy illness is completely curable with the tough treatment. Oh, goody. Really, though, I'm glad he can be positive and hopeful. That will help us all get through this. Now we are not only asking God for merciful healing but also to be with our family during what will certainly be a challenging time.

All the troops waiting for action can contact Carrie D. to sign up for babysitting. Thanks, y'all.

A bit of normal

The kids and I have been at the house a lot lately. Zane, Avi and I all managed to get a cold, but it isn't too bad. I have felt however, that I put down one child just to pick up another. Despite the cold, my blood counts are stable. We are thankful. We haven't been able to go to our usual places (YMCA, church, children's museum, etc.), but when we have gotten out for a drive, Zane (who does not speak much--at least not much that we can understand) yells, "OTHER WAY! OTHER WAY!" I'm not sure exactly where he is trying to go, but it is hilarious.

Avi is very proud of her crawling and can now get half of herself up onto a floor pillow or dig in her toy basket. She regularly checks under the kitchen table for stray Cheerios, and I'm afraid she finds more than that.

Cade, ah, sweet Cade...We are butting heads a lot. I tell myself each morning to just love on him, but it doesn't take long before we are at odds. He has so many great ideas that involve destruction or injury. The genius in him can design such wonderful gadgets, but the four-year-old in him cannot predict the outcome. This morning, he wanted to swing from his monkey tail (my velvet belt) that he had secured to the top of the bunk bed. I asked him not to, but when I was out of sight, he made his move. A piercing scream followed. He was devastated that his monkey tail broke. I was so relieved.

Although this week has been more normal than the past few weeks because we are simply praying for healing and waiting on the bone marrow biopsy results, I've been thinking a lot about a song that was stuck in my head during the 2004-2005 ordeal. We were given the opportunity to sing it the other night while we were gathered at a friend's house for prayer, so I have a copy of the song sheet in front of me thanks to my organized friends:

Blessed be your name
In the land that is plentiful
Where the streams of abundance flow
Blessed be your name

Blessed be your name
When I'm found in the desert place
Though I walk through the wilderness
Blessed be your name

Every blessing you pour out,
I turn back to praise
When the darkness closes in, Lord
Still I will say...
Blessed be the name of the Lord
Blessed be your name
Blessed be the name of the Lord
Blessed be your glorious name

Blessed be your name
When the sun's shining down on me
When the world's all as it should be
Blessed be your name

Blessed be your name
On the road marked with suffering
Though there's pain in the offering
Blessed be your name

You give and take away
You give and take away
My heart will choose to say
Lord blessed be Your name

Two Week Vacation

We have not gone to Dallas yet, nor do we have an appointment there.

Instead, I went back to Temple today to have another bone marrow biopsy. We were excited (mostly) to do this because it gave us another opportunity to pray for complete healing before undergoing a bone marrow transplant. (There is some confusion about the MDS diagnosis.) We are confident that the Lord is able to heal, and that He would delight in healing me. We are so thankful to all who have prayed for us, and are thankful to the One who hears.

Some have asked what exactly is involved in a biopsy. I can't be for certain because they take a sample from the hip bone above my bum. However, I'm pretty sure that it involves something like a dull corkscrew. I was complimented today that I have very hard bones. Well, thank you. It isn't too painful except for a few seconds of the process. They take the marrow and look at it from all angles for about two weeks. The pathologists are looking for chromosomal abnormalities. So, aside for a couple of easy-cheesy blood draws here in Waco, we have a two week vacation from doc appointments.

We are still simply praying for complete healing. The contingency prayers can wait. If the bone marrow biopsy shows abnormalities, we will then have to make an appointment in Dallas, if not, then, woo-hoo!

In other news, I fed Avi sweet potatoes for supper and realized that they are the exact same color as her hair! Pretty handy for a messy eater. She has discovered the joy of dragging a toy as she crawls, and really favored a Nerf ball today.

Zane and Cade are now in bunk beds. They feel very big. Our dear friends who are moving to England for tropical disease training and on to Uganda for mission work gave them to us for a sweet deal. Zane is loving being able to get in and out to choose his own books and toys. Tonight he went to sleep with a baby doll tucked beside him. Cade is working on the art of negotiation, and my patience is being tried. I can definitely understand how, "BECAUSE I SAID TO!" came about.

I35 (in the other direction)

We met with the myleodysplasia doc in Temple today. Very kind and capable. He instructed me to start exercising again and to not lose weight. Guess which one of these is the easiest. He also made a big deal about patient advocacy in working with insurance.

He is referring us to a bone marrow transplant specialist at UT Southwestern in Dallas who is his favorite in the country. We should have an appt next week. In the meantime, we are having weekly blood draws and lots of prayer.

Prayer is the Plan

Tomorrow is our big day. At 2:00 we meet with the doc in Temple. Van wisely asked me what I am hoping to hear from him. This stumped me pretty well, because I am torn between knowing that God can heal me from the get-go, and having seen the photos of my damaged bone marrow. So, in shaky faith, I am hoping to hear, "There's nothing wrong with you. Get out of here and go home to chase some children."

We're asking everyone to pray tomorrow--big time. Remember the petitions that we send around asking for a speed bump on our street or something like that? I'm asking you to "sign" the petition to the Father asking for my healing knowing that He is a fixer of brokenness. At 6:30 we are gathering with a small group to ask again. And we are asking yet again with our church elders on Wednesday.

We have been trying to not get to much ahead of ourselves in planning for being hospitalized or whatever "ifs" arise. Prayer is our plan.

I 35

Well, I stand corrected. We will be having our first appointment at 2:00 on Tuesday, August 4 with an oncologist in Temple. He is highly recommended, AND our insurance would be happy with him. Scott and White has been doing successful bone marrow transplants for over 6 years now. Okey-dokey, then.

August 4th is also the day that we are asking our family and friends to pray for healing for me. Some are fasting that day (a little or a lot), too. We would love for our Lord to hear from a lot of hearts that day. At 6:30 a small group is gathering at my friends home to petition for healing. We would love for your family to pray in your homes at that time, too. Thanks, everyone.

August 4th is a big day-- Van's step-brother is finding out the sex of his baby that day, too!

Isaiah 40:11 "He tends his flock like a shepherd: He gathers the lambs in his arms and carries them close to his heart; he gently leads those that have young." Well, thank goodness! After a day of being pooped on (twice) and having my child climb onto the top of the cab of the truck stomping on it in the middle of the Wal-Mart parking lot, I certainly need some help today. Those same children also cuddled, gooed and even giggled today, and I am thankful for them, of course. My favorite quote was, "Mom, I am an EXPERT at time-out." Yes, you are, sweet boy.

The Insurance Saga continues.....

We have once again been "denied", but there are still some ways to appeal. Please pray. We are confident that we will covered eventually, but it is a frustrating process. We may need to be seen in Temple first. I have been thinking about Romans 8:18 "I consider that our present sufferings are not worth comparing with the glory that will be revealed in us."

Cade went to his martial arts class today. We learned that he will earn his yellow belt on Saturday and get to break his first board! For a four-year-old, this means that he has been able to follow directions and stay still until told to move, at least for the 30 minute class. I'll take it.

Avi took about 3 oz. by bottle at Mother's Day Out! We are thankful!

The kiddos all just finished up a fever. We are so thankful that Van and I were able to stay clear of it.

I'm totally enjoying y'all's comments. Thanks so much for the encouragement.

Blasted Insurance

We're frustrated with the insurance system today. We're trying to get coverage to be able to go to MD Anderson for the "world's authority" on myelodysplasia (MDA). We are trusting that our help does not just come from an insurance company or from a hospital, but through our Heavenly Father.

Today is the last day of Mother's Day Out for the summer. I'm going to miss you, MDO!

Probably Van's Favorite Psalm

Psalm 121
A song of ascents. 1 I lift up my eyes to the hills—
where does my help come from?
2 My help comes from the LORD,
the Maker of heaven and earth.
3 He will not let your foot slip—
he who watches over you will not slumber;
4 indeed, he who watches over Israel
will neither slumber nor sleep.
5 The LORD watches over you—
the LORD is your shade at your right hand;
6 the sun will not harm you by day,
nor the moon by night.
7 The LORD will keep you from all harm—
he will watch over your life;
8 the LORD will watch over your coming and going
both now and forevermore.

A Little History....

1999 Van and Susan Marry
2000-2004 Medical School and Pre-school teaching in Houston
May 2004-June 2007 Medical Residency in Waco
October 2004 Susan is diagnosed with Lymphoma
November 2004 Cade is born!
Susan begins chemotherapy
April 2005 Susan is unable to finish last dose of chemo
June 2005 Susan has 17 days of radiation
June 2007 Van begins work at S&W Fishpond Clinic
April 2007 Zane is born!
December 2008 Avi is born!
July 2009 Susan is diagnosed with myelodysplasia