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.