Circus Day

Thursday was Circus Day at Joshua's Mother Day Out. Andi and I had a great day watching Joshua perform as a lion in the 3 ring circus. Because this was the first performance of its kind for us I had no idea what to expect. Joshua is always singing and doing "tricks" at home, but I wasn't sure how he would do in front of his peers and their parents. 

Needless to say, he had no stage fright at all. In fact, he ran to the front of the line so that he could be the very first. He stood up on the chair, roared a ferocious roar and jumped through the firery hoop (a hula hoop with orange felt triangles taped around it). After talking with several mothers I learned that the kids had been practicing all week. I think our one day a week worked out for us this time. Most of the other children wouldn't wear their mask or perform the feats of doom, but Joshua didn't have any time to get nervous about it. 

The performance was followed by games, balloon animals, bubbles, popcorn, and lemonade. Basically, all the things that Joshua loves. Good day at school this week.

Eastery Photos

Even though we weren't able to get out, we created some fun in the backyard with an egg hunt and a cookout.

Andi was on the prowl for Easter Eggs.

Joshua chose a Nascar racing Easter basket when we bought it at the store last week. Not the most stylish of Easter baskets, but he is obviously proud of it.

Michael has already declared 2008 as the year of the grill!

Easter at Home

This is the first Easter that Jana and I haven't been to church, and that's okay. We're reasonably sure God still likes us.

We find ourselves at home on this Resurrection Day because our doctors sent us home on Friday from the hospital although Joshua's blood counts hadn't gone up. Because they hadn't gone up, they sent us with specific instructions to for seclusion: no egg hunts, no church, no restaurants. So we have been hiding in our house and yard for the past couple of days.

Tomorrow (Monday) we go back to the clinic to check Joshua's blood counts and hopefully rejoin the world.

Tonight as I put Joshua down for the night we read the resurrection story. We have been talking about it alot recently, reading the Last Supper a couple of nights ago, then the crucifixion, and saving the Easter story for tonight. So there's the scene, as depicted in Joshua's children's Bible: the soldiers cowering in fear, the stone rolled away, the angel declaring that Jesus has risen, and then there's picture of the women when Jesus appears to them on the road as they're leaving.

Then there's Joshua's expressing himself: "He's back! Woo-hoo! They thought he was gone, but now He's back! And He is alive!"

Yes He is, son. Both then, and now.

In Case You're Curious...

We are still here in the hospital. Joshua's blood counts have only improved a little, but the good news is, they have improved. The doctors would like to see them get a bit higher before we head out into the world. It looks like we will have a chance to go home tomorrow. Maybe we will be home in time to rest up for a big Easter Egg Hunt.

Tucson: 1 of 2

Tuscon 1: The Cousin Fun

Michael's brother moved to Arizona about 2 years ago, but this weekend was the first time we have been able to visit. Eric and Jenni were wonderful hosts and their children were excellent playmates for Joshua and Andi. We were able to visit University of Arizona, where Eric works, hike around Palamino Mountain, eat at some amazing restaurants, and even go out on a double date while the kids hung out with a baby-sitter. These portions of our trip were fun and we look forward to visiting again someday to catch the sites we had to miss.

Tucson: 2 of 2

Tucson: Emergency Happenings

It makes me terribly sad that our very fun trip included two trips to the Emergency Room. The first came Saturday morning when Joshua woke up in a very crummy mood with continous chills. It was not his normal demeanor so I called to doctor to just ask a few questions and the response was find an ER in Tucson. We were sent home hours later with fluids and good blood counts.

Our fun resumed the next day, but at midnight on Sunday, the fever hit. Michael drove him back to the ER, where we learned that Joshua's ANC had dropped from 2400 to 800 (500 is an automatic admission to the hospital) Michael called to tell me the doctors in Tucson and Nashville were giving us the choice to be admitted there or come home to be admitted. As much as we love the warm weather in Tucson, we wanted Joshua to be treated by the doctors that know him best.

So, we drove to Pheonix to catch the most direct flight. Joshua did a great job wearing a mask throughout the airport for his protection. (He gets to choose a new toy as soon as we go to Target next!--A good time for bribery, I'd say) He slept the entire 3 1/2 hour flight. He woke up saying, "We forgot to watch a movie." We quickly went home, to repack for the ER here in Nashville. Within about an hour of being off the plane and waiting for a room at Vanderbilt, Joshua's fever had climbed to 103.

We are now back on the 6th floor again waiting for Joshua's counts to start on the upswing. (ANC is about 400 today) Every nurse of doctor that has come in wants to hear a little of our big adventure to Arizona. Joshua just tells them that the prickly pear cactus hurts, but that he told it to leave him alone.

You've Never Heard Anything Like It

My friend and mentor, Dr. Robert Smith, Jr, recently preached at a church in our area, and I've sat weeping in my office for the last 2 hours. That's right, 2 hours. Here's what the big bad preaching professor did - First Baptist Church of Hendersonville has 3 morning services. Dr. Smith refused to repeat his talk. He preached 3 different sermons. The first one was a modest 31 minutes for the early crowd; the second was an hour and 15; the third was a strong hour and a half, and it goes by in a second.

I've been in church my whole life, studied preaching, and heard my share of great communicators. Dr. Smith is the best I've ever heard. It will be worth the time investment for you to listen.

A Toothy Grin

Solacious Appetite

I have heard this phrase used many times and never really knew its exact meaning. Today, I took the time to look it up on dictionary.com . Solacious - affording solace. Solace - comfort in sorrow, misfortune, or trouble; alleviation of distress or discomfort. I can now say that I have seen a solacious appetite first hand. As we've said before, Joshua has to take steroids for 5 days in conjunction with his monthly large chemo treatments. Among the worst side effects of the steroids are huge mood swings and a enormous appetite. I am unsure about the reason for Joshua's need to eat, but I think it mostly comes from a need to comfort himself. My prayer for him is that this appetite can one day be exchanged for a hunger and thirst for Christ himself. For now, it makes for some very interesting days.

Joshua woke up today in a great mood; laughing, giggling, making jokes, and singing songs. Then, the hunger that comes with steroids hit. Today's menu is as follows:

 6:45 - 2 frozen waffles with syrup

 7:00 - fruit cup

 7:10 - corn Chex with blueberries and milk

8:30 - Chik-fil-A drive thru

    We "shared" chicken minis, hashbrowns, and fruit

9:45 - crackers at CBS

11:30 - walks out of CBS talking about plans for lunch

11:35 - falls asleep in the car

12:05 - wakes up as we drive by McAlister's Deli

     (This becomes the new plan)

12:15 - entire Spud Max (pictured above)

 2:30 - bag of popcorn

 3:30 - applesauce

Questions about dinner started immediately after the last snack.

If you are wondering how we let him have this much food, know that for every item eaten, there are requests that are nonstop for even more. Tonight our sweet friend, Sarah is coming to babysit. I hope she is prepared for the mayhem of 'roid rage!

Certainty?

Maybe you’ve had a similar experience to this—you stand at a crossroads in life, and you want to make the wisest choice. So you go out to the woods, or wherever you go to think, and you say to God, “I have two choices here. And I’m not coming out of these trees until you tell me which way to go.” So you sit. As the sun goes down, you hear nothing.

What are you supposed to do with that?

I am beginning to believe that there are very few things in life that we can be absolutely certain of; that at best, most of our decisions have to have the honest tagline associated with them: “I’m pretty sure this is what God wants me to do.” And to take it a step further, I believe God wants it to be that way.

Now I think it should be said that in these decisions, the two options ahead of you aren’t things like, “Should I go pray for an hour or should I rob the local bank?” I’m certain there is certainty in that decision, and I think I can say with confidence that God doesn’t want you to become a career criminal. But what about the choice between 2 jobs, to take a promotion or not, to move to this city or that, or to choose one college over the other? Those decisions aren’t so cut and dry.

We tend to believe that God wants us to be absolutely certain of His will, to charge headlong our decisions absolutely convinced this is the right thing to do. While that would be nice, it’s not real-life. And maybe, just maybe, it’s not even supposed to be.

Wait a minute. Doesn’t that contradict the words of Hebrews 11, the classic definition of faith that is “being sure of what we hope for and certain of what we do not see?” I don’t think so, mainly because all of the people the writer of Hebrews uses to illustrate his point are people that were convinced of some things and not the others. They were convinced God was with them. They were convinced they would have reward in heaven. They were convinced of the eternal reality of their Lord. In short, they were sure of God.

As Mark Batterson puts it in his Threads study, Chase the Lion, there needs to be both a degree of certainty and uncertainty in our spiritual lives. We can be convinced of the reality of Jesus Christ and yet be pretty sure about our career choice. We can be certain about the cross and be reasonable confident about our relationships. In fact, the sureness of God is what enables us to move forward, regardless of our degree of uncertainty.

That forward motion is a better picture of what biblical faith looks like. The word “believe” has a much different connotation in Hebrew than in Greek. In Greek and English, the word means intellectually assenting to a particular set of facts. But in Hebrew, the word can also be translated as “steadfastness.” It’s the same word used in Exodus 17 when Moses raised his hands all day long to enable the Israelites to win a key battle. From that we take that in Hebrew, believing is more about moving forward, action, than it is about an intellectual assent or knowledge.

What does all this mean? To me, it means that because I am sure of God, I have the ability to make decisions. I can move forward steadfastly because I am trusting in God more than in my ability to be sure. It means I can take risks. It means I can trust the wisdom of God more than my own wisdom to choose rightly. It means, I guess, that I can have faith.

And maybe that’s why God doesn’t want certainty in our lives. If we were completely certain about everything, doesn’t that eliminate the need for faith at all? Doesn’t it remove the need for us to be in constant, intimate communication with God? Doesn’t it decrease our dependence on Him? I think it does.

So I’m tired of second-guessing my decisions, worrying about whether I’ve missed the plan of God. I think maybe God is tired of it, too. And maybe, just maybe, what He still wants from me, and from you, as always, is not certainty—it’s faith.

Latest Update

The plan today was for Joshua's monthly check-up, Vincristin, and spinal tap. Because Joshua's spinal tap requires sedation, he has to go to clinic without food or drink. Today Joshua woke up with a stomach ache. I assumed it was either because he was really hungry or there were more issues with his liver. On the drive to the hospital, Joshua continued to complain about his tummy and began to dry heave. I was concerned.

When we arrived at the clinic, Ms. Emily, our nurse, was very kind to us both. She quickly accessed his port and started him on intraveneous fluids. It turns out he was just dehydrated. Dr. Zeiber checked him from head to toe, including all of his numbers, and said she thought he was doing great. She also gave me several suggestions about how to avoid the dehydration on Joshua's next sedation visit. Strangely, she thought it was very likely that this was due to his rapid growth (another quarter of an inch and one pound lost). I guess he just has a very active metabolism right now!

The spinal tap went well, with no complications. By the end of the day, Joshua was eating popcorn and hanging out like any other day.

Enzymes Down

Quick report from the clinc - enzymes are indeed down. Everything looks good, tracking as it should be. Joshua's enzymes were down today, and they actually increased his chemo. The increase happens over the course of treatment as a kid grows to be equivalent to his or her body weight, height, etc.

By the way, last month Joshua grew a full inch; he has grown half an inch in the last four weeks. He's a weed.

Thanks for praying the enzymes down and continuing to read our ramblings.

Waiting

Here I sit, early on Wednesday, waiting for a hectic day to begin. This morning Jana will take Joshua and Andi to the clinic to do follow-up blood work to check on Joshua's liver enzymes. Andi has been running a fever, so I will meet them at the hospital so that we don't take a sick kid (Andi) up to the clinic. Hopefully, prayerfully, Joshua's liver enzymes will have dropped and we will continue without incident with his treatments.

I don't know why my night was filled with restlessness or why I'm so nervous this morning, but I am. Jana has a much better approach to this stuff - she seems to be better than me at trusting, praying, and hoping in general. Not that she's fake about it in anyway; it's very real. Me, I brood.

But what's really amazing is that Joshua doesn't give it a second thought either. Last night as we were going to bed, Joshua said, "Daddy, I'm very lucky to go to the clinic tomorrow and the hospital." And he really thinks that. It's not because he has the ability to process that he's lucky we live in a city with a children's hospital, or that he's lucky we have such good doctors, or that he's lucky he was an early responder to chemotherapy. In his mind, he's lucky because he gets to watch a video, play with toys, and drink grape juice.

I still remember the day he was diagnoses. I did not feel lucky. I sat in a room with our peditrician and he told me Joshua had leukemia. Joshua sat on the floor and played with trucks. And now I think there is a huge burden with knowledge. I knew things my child didn't know. And I can't help but wonder if God is burdened with knowledge.

I use the word "burdened" becuase my language fails me here. It's not the right word, but it's the best one I have. Not that God wrings His hands in frustration, or sits up late nights thinking about the uncertain future. But it does seem to me that the Lord must carry, in some mysterious way, the burdens of His children. People all over the world casting their burdens on Him, because He cares for them. People hurting everywhere, and all turning to Him for help. It must be very heavy.

In His infinite wisdom, God will choose rightly. But in my darker moments, I can't help but think: What if I don't like or agree with God's decision, even though at some level I recognize its rightness?

That's something to struggle through. Something to wrestle with. Something that I think all of us wrestle with, because at some level, we all have the moment where we wake up and realize that God's plan for our lives is different than the one we had formulated.

I think the comfort doesn't come in the confidence that God is always going to agree with me. He's not; and He shouldn't. I think and hope in the end, I'm grateful God didn't agree with my plans, especially when I see the goodness in His own. But in the moment, that's not very comforting. I think what is comforting, however, is knowing that God knows what it's like to carry a burden. He knows better than me. So maybe there is some sort of kinship we have with God when we choose, or are forced to, carry the burden of another.

I'm doing my best today to trust a Jesus who carries heavy burdens, a Jesus with broad shoulders, a Jesus who knows pain that I never will. He knows the feelilng.

First Steps

She did it! At 9 months and 4 weeks, our little Andi has taken her first steps. She is not yet jumping and skipping across the living room, but my guess is that it will not be long from now.

Another Hiccup

This morning Joshua woke up at 6 am complaining that his stomach was hurting.  I quickly realized that his pain was more intense than I first suspected. He seemed to be showing signs of an oncoming virus, so we called the clinic to find out what our next step should be.

Even without a fever, they wanted to see Joshua. Apparently, stomach pain can be the sign of several different things that leukemia patients have to face. (Thinking back, this is a question they ask often during routine visits.) At the clinic, he started to feel better, eating crackers, drinking Sprite (lots of Sprite) and stuff. His blood tests showed a couple of things - first that his white cell count was pretty high, and second that his liver enzymes were a little higher than they were the last time they checked them. The doctors seemed to think that these things are all linked together, along with the nausea and stomach pain.

We've been reading this afternoon a little about liver stuff online (which is never an advisable thing to do when you have a kid with leukemia), but we did anyway. It seems that chemo drugs can cause liver problems. We know this also because a few of our friends from blog world seem to have had liver enzyme issues due to the medication. This may be happening in Joshua's case as well.

So they sent us home, nothing to do but wait. We'll go back on Wednesday to have another round of blood tests and see if the enzyme level has returned to normal. I assume that if it hasn't, we might have to adjust medication once again. We'll see what happens. So for now, the battle cry is: "Enzymes down, God."

Please and Thank You

We are constantly teaching Joshua to say these words when making requests and when help is given to him. We are also trying desperately to see that Andi begins to use these signs so that when her words finally come, she will have a head start on her manners.

Because we are constantly aware of our children's manners, I thought I should do my best to use my manners as well. So.....

THANK YOU to the many people who have already contributed to my Team in Training fundraising. You have raised an astounding $1275. I am blessed and so are the many patients that will benefit from your giving.

PLEASE to any others that have thought about contributing to this wonderful cause. Now is the time. I still need to raise $525 to reach my final goal. You can make your donation here.

***Last week I ran 8.5 miles in 1 hour and 20 minutes. On Saturday I will run 9.5 miles. This is the farthest have run to date. I have met some great girls that challenge me and keep me accountable to show up every Saturday. Surprisingly, I am having a great time!

Happy Valentine's Day

Thank you Nana, Aunt Amy, and Aunt Kim for the sweet care package.

Joshua's blood counts were great yesterday. We will be at school and church this week!

Jana's Stones

Recently, my beautiful and articulate wife had the opportunity to share a little bit about our journey with leukemia at the Bible study she attends on Fridays. She based her talk on the idea that God expects us to set up "stones" in our lives, just as the Israelites did, as reminders of the faithfulness of the Lord. I want to encourage you to follow this link and take a listen.

Bring a tissue.

A Day in the Life

This is a pictorial account of a day at the clinic. Our day starts at about 6 am, getting everyone ready and ends at about 1 pm, just in time for a good afternoon nap. I guess this is just one more way to invite you on our journey. 

Michael works from home on our monthly clinic visits to take care of Andi. When it is a short visit just for counts, Andi comes to the clinic with Joshua and me.

Before we leave the house, Joshua gets numbing cream for his magic button.

On days that we don't have a spinal tap scheduled Joshua can eat before clinic. Joshua and I have started a tradition of Starbucks on the way. While I did influence his choice at first, he is a clear fan all by himself now.

Joshua loves to play this game in the waiting room.

1. 2. 3. Poke.

"That wasn't so bad."

"Hands on your belly. How much do you weigh, sweet pea?" (That's Mandy's favorite name for her little ones.)

"Arm or leg? Let's do your blood pressure."

Joshua grew another half inch this month. He is now in the 82%. Remember back in the day of 12%. Wow, he's grown.

While waiting for Dr. Zeiber, we read a few books and drink some more chocolate milk. 

Dr. Zeiber checks him over and let's us know how much chemo to do at home this week. She and I also talk about food, TV shows, and family. We really like her.

Finally, we wait for the Vincristin to be push through Joshua's port (I forgot to get a picture of this part.) Here, Joshua is playing with alphabet cards and watching Cinderella. (I tell myself he needs to learn to be a Prince Charming so it is OK ;)

We usually grab some lunch in the food court downstairs and head home. Michael heads back into work and we get that great nap I was talking about. It's not too bad when there is nothing bad to report. Happy to say that is the case this week.

What to do?

My friend, Holly, recently asked me, "what do you do when you can't get out?" She was, of course, referring to the times when the doctor gives us the homebound word and tells us to stay clear of restaurants, Sunday school, and other children in general. So, here are a few of the pictures that I collected from the last week we were secluded from the world. Now, keep in mind that there are many videos, TV shows, computer games, and drive-thru eateries that happen in between all of this. I'm not claiming to be super mom, I'm just sharing my ideas.

Moon Sand is very fun, but very messy. You have been warned.

He asked to help. I promise. No child labor laws broken here.

We do get the wonderful privilege of being outside when it is warm enough. This is our favorite activity.

Again, finger paints are messy, but oh so much fun!

Now, please share any ideas that you moms have for fun activities with your kiddos. I'd love to have some tricks up my sleeve for another day.