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.

Volume II

This is it. Today is the day. Michael's second volume of Tough Sayings of Jesus is available for purchase right now. It is set up for group study with questions that actually help a small group discuss more than the "Jesus" answers alone. Just as Michael does in conversation, he asks questions that make you think about how you relate to God, how you relate to others, and how God uses others to help you relate to Him. Even if you aren't in a group study, it is a book you can read on your own. Although, you will have to find a friend to talk about it with you, because it is just that thought provoking.

You can read a sample chapter from Tough Sayings of Jesus here. 

Then, you can buy Tough Sayings of Jesus Volume II here.

Back to School

Good news - Joshua's counts have rebounded, so tomorrow he goes back to school. He also got a treatment today to boost his immunoglobin, a part of his immune system.  Dr. Zeiber informed us that Joshua is OK to continue taking the same chemotherpy (6-MP). She will, however, try to be much more cautious about increasing his dosage due to his history of infection. So, by God's grace maybe we can continue our 2-month string of no hospital stays.

Also a cool moment today, since last night Joshua and I prayed specifically that Dr. Zeiber would tell him that he could go back to school. That's sort of big because, other than the fact that Joshua gets to see that prayer is effective, he is also realizing for the first time that something isn't right with his health. Up until now I'm pretty sure he thought that everybody went to the hospital, had a magic button, had to wash their hands incessantly. But now he's getting that the doctor tells us what we can do. So this is a new wrinkle in leukemia parenting that we will feel our way through.

Thanks for praying him back into real life.

More

I am an advocate for teaching sign language to children. I'm not sure that it helps with language development or any of the other things that experts say. What I do believe is that it keeps me me from going crazy at mealtime. I started teaching Joshua and Andi to use signs at around 6 months. Whenever they would make that sound that all babies make when you aren't getting the food to their mouth fast enough (Uuhh. Uuhh. Uuhh.), I would just gently put their hands together like the graphic and say, "more." With both kids I thought that my efforts were futile. I didn't see any results for at least 2 months.

But, we are so proud of Andi because she has just started using the sign for "more." She uses it when Michael is throwing her up in the air and she wants to do it again, or when I am feeding her peas and carrots and she needs another bite. It has relieved a lot of tension at the dinner table. Also, because Joshua still remembers his signs, he is very proud of her, too. Of course, Joshua thinks Andi should automatically be able to communicate all sorts of things. For now, "more" will be enough.

--We are also happy to report that Joshua is feeling really well considering his low blood counts and the isolation seems to be doing its job. No fever. No hospital. 

Tough To Explain

We had a strange appointment at the clinic today. We were told to come in and have Joshua's blood counts checked today. This a common practice when Joshua's dosage of chemo gets to a high percentage (based on weight and blood count tolerance). Two weeks ago Joshua was at 100%. The goal being to take as much chemo as is possible for his little body. 

Today we went in thinking it would be counts and home. Joshua bravely got accessed (blood drawn through needle in his port). He didn't whimper or cry and finished by saying, "That wasn't so bad." The nurses thought we were going straight home also because they took out his needle. 

Early this week, Joshua complained that his ears were hurting so I asked Dr. Zieber to take a look. She obliged, and said there wasn't an infection, but to use a decongestant at home. Sounds great, we were heading home.

As we were turning for the door, Dr. Zieber asked us to stick around and look at blood counts together. Yikes! They were bad. After looking at our records, they haven't been this bad since September. WBC (white) was 1.6 and ANC (neutrophil) 0.41. Normally, WBC is above 4.0 and ANC is over 2.0. At least, that is what we like to see.

Because the counts are so low, Dr. Zieber wants to figure out the problem. In order to do some more tests, Joshua had to be accessed again (still not a grimace). They are testing to see if Joshua's body is just not genetically made up for the kind or amount of chemo he is on. My question: Is anyone's body really made up for hazardous drugs like chemo? Joshua is also going to receive more IGG (immunoglobulin)  to help boost his immune system.

What does all of this mean? Well, a few things. First, it means we are homebound for a while. No school. No church. No Bible study. No restaurants. (Sad. Sad. Sad. Sad.) Second, it means antibiotics at home to avoid an infection and in turn, a hospital stay. Third, no at-home chemo all week to help his counts recover. Fourth, we return to the clinic next Wednesday for the IGG, the results of the testing, more blood counts, and a general regrouping to resume treatment.

Another thing that this means is that reality strikes our family again.

I say "reality" because it's funny how you can almost forget everything that has happened over the last year, that Joshua has cancer, in the normalcy of life. Then you have an appointment like today and the harsh truth of reality comes back - leukemia still rules the day. So today, and days like this, are in some ways a grieving process at least for mommy and daddy. We grieve about little things - that we can't play on the playland at Chick-Filet; that Joshua has some minor social awkwardness around kids because he hasn't been around alot of them; that we can't make real plans with friends without saying, "If everything is okay." And frankly, grieving isn't fun. It is, however, good.

Not to compare our struggles to that of Job, but it is interesting that for 7 days Job's friends came to him and sat in silence to grieve with him. That became a lasting tradition throughout Judaism, and is known as sitting shi'vah (from "shi'vah" meaning "seven.") It's a period when people come and visit with the person that is grieving but don't say anything (maybe God knows that we have the propensity to say stupid things during times of loss). I think that's a little comforting today because I believe God likes the mourning process. I think he likes it for many reasons such as:

Mourning is the way we reconcile the fact that our dreams for our lives may not square with God's dream for our lives.

Mourning is the process of coming to grips with God's sovereignty in the universe.

Mourning is a reminder of hope, even in the midst of loss.

But I like this one best today: Mourning is perhaps the truest expression of authenticity. And I think God values authenticity more than He values right answers, screwed on smiles, and perfectly Christian people.

It Was a Success!

In case you were curious, Joshua's first day back was a major hit. When I dropped him off, he ran in and didn't look back. I, in turn, walked away and didn't even cry (a major accomplishment). About an hour later, while shopping in Target with Andi, I got a call from King's Kids. My heart skipped a few beats, but I was relieved to know they were calling to tell me that Joshua was having a great time, but that his nose was running. They just wanted me to know. It felt strange to get the call and somehow, in the end, feel completely relieved. They weren't calling about a fever or about his leg pain, just about a runny nose. Now, a runny nose I can handle. Especially since Joshua has had a runny nose since he was 6 months old. 

When I picked him up, he was still playing hard and full of energy. The next 2 hours were spent recapping all of the days events from exercise class to honey pots to being the lunch helper (a task he was hoping for on the way to MDO -- great memory, little man). A big thank you to Ms. Christie and Ms. Sky for being Joshua's heroes and for making his first day back a huge success for all of us.

Our Blog World

I know that most people with a blog choose to have links to other blogs on their site. We have done the same. I encourage you to take at peek at them all because each of them touch our lives in some way, but there are two that I want to make sure you read.

James Gregory Ryan

Gage Holmes

We have never met either of them or their families, but we share a common bond. Both of these boys have the same diagnosis as Joshua. They are a few months behind him in treatment and are showing a lot bravery just as Joshua did and does. Please pray for each of their families as they complete Delayed Intensification and begin Maintenance. Pray that they will be able to balance the freedom of being out and about in a "normal" life and the fear of being out and about in a germ filled world. Also pray that the people around them would be sensitive to their fears and will continue to help to meet their needs even though the "tough" part is seemingly over. 

We celebrate with you and your families and hope that the days to come will be refreshing and side effect free!

Another Shot

Tomorrow Joshua starts Mother's Day Out again. If you remember, we started him in MDO back in September. We were so excited then, but unfortunately, the fall cold season brought on several hospitals stays and we needed to take him out of the King's Kids program. Now that we have been 8 weeks without a fever or hospital stay, Joshua's teachers are excited to have him back and Joshua is more than excited to be going back. 

Our doctor has been very encouraging that this is a good choice for Joshua. She wants for him to experience life as normal as much as possible. But normal is a bit scary, at least for mom and dad. For us, it feels like him going back is deciding it is OK to spend more time in the hospital. Even though all signs point to Joshua being a healthier boy than he was 5 months ago, it is still an anxious time for us. So, please pray for the anxiety to diminish with Joshua's excitement and anticipation and that Joshua would continue to be in good health.

My Kids

I was tagged by Amanda to write 8 things about Joshua and Andi. I will just do 4 for each one. So, here goes:

JOSHUA

1. He is very affectionate. Joshua is constantly saying, "I love you," giving hugs and kisses, and asking if we can snuggle under a blankie.

2. His imagination is nonstop. Joshua is always thinking up a new game, a new song, or my favorite, a new script. If you stay and play long enough, he will give you lines to say as you play. For example: "Mommy say, 'Try hard, little (insert animal name here). You can do it.'" or "Andi said, 'That's OK. You can take my toy.'"

3. Nothing gets by Joshua. Somehow is able to sense everyone's emotions and then he always chooses to respond to them. If I sigh, he asks why I am upset. If I am crying, even a little, he tells me, "It'll be OK, mommy." If Andi is angry, he does a monkey dance to make her happy again. 

4. He likes little moments. For Joshua, it doesn't take an elaborate production to get him excited. He is happy with a trip to Toys R Us to just look at toys or a drive to Sonic if we can all go together.

ANDI

1. She has an innate ability to find the one thing in the room that you don't want her to play with and go straight for it at lighting crawl speed.

2. She lays her head on your shoulder after you have been holding her for a while. Not because she is tired, but because she is glad you are holding her (at least that's what I think).

3. Now that we have started letting her feed herself with small pieces of table food, she wants to  do all of the feeding by herself. Can you say independent?

4. Some babies Andi's age have seperation anxiety from their parents, but Andi is just fine with us leaving her to stay with a babysitter. Andi does however, have separation anxiety from people in general. She is only happy if she is surrounded by people that love her.

Now I tag Jenni, Noelle, Carrie, Rhondi and Melissa.

1,918 Miles Later

Some people might call us crazy for even attempting such a feat with a 3 year old and an 8 month old. Even more might call us crazy for actually enjoying it. Go ahead and start calling us names because we had a blast! With snacks, tiny surprises, DVDs, bottles, and teething toys we had a fantastic trip.

The time with both our families (which almost all live within 2 miles of each other now) was great. We had lots of great food and conversation. Joshua was surrounded by cousins to play with and Andi was cuddled by anyone that could catch her.

Thank you to our very giving families for helping make our trip comfortable, infection-free, and lucrative (great gifts everyone!)

Joshua had a great time in the car, but became giddy when we told him about he hotel we were staying in the first night. Yippee for indoor swimming pools.

Happy trails, little lady!

Joshua and Andi had plenty of cousins to play with. 8 under the age of 6 at Michael's house and 7 under the age of 10 at my house. Fun times!

You will all be happy to know that Joshua did get the trumpet he asked for. Thankfully, he did not get the drum set and trombone...at least not yet.

Andi loves her Papa!

What could be better for the boys than football in the snow?

Maybe next year, Andi.

It is always good to be together.

On the way home, Joshua kept saying, "I don't want to go home. Let's stay at the hotel a little longer." This may have been code for, "I don't want to get back in the car."

That is one tired little girl. Andi slept 4 of the last 6 hours of our drive. You can't ask for a better traveler than that.

We hope you all had a great Christmas. This one was indeed a blessing for us. Joshua has now been 6 weeks without a hospital stay. It couldn't have come at a better time.

Road Trip

After a 18 month hiatus, we set out on a long trip to Texas for Christmas. We have had every combination possible except all of us together: Michael and Andi; Joshua, Andi and I; Michael and I; Michael alone; me alone; Andi and I. Our adventure has been great with lots of smiles and happy times with family. I am excited to share photos and stories when we return, but for now....Merry Christmas and Happy New Year.

Jana in Training

As Jana whittles the seconds off her mile time and I grow lazier on the couch, I wanted to remind you about the great organization that Jana is running the half-marathon for. Team in Training is comitted to raising money to find a cure for cancer and to help those whose lives have been effected by it. So if you're looking for some "end-of-the-year" charities or know someone who is, I'd love for you to consider supporting my beautiful wife in her efforts.

Just so you know she's serious, she's running close to 20 miles a week and has even started a scheduled detox of her precious Dr. Peppers. Chick means business.

If you're interested in supporting Jana, here's the link where you can do it:

http://www.active.com/donate/tnttn/kelleyfamily

Is It Just My Imagination...

We don't write about it often because it isn't fun and we are so busy while it is happening, but usually this week every month is terrible. We start steroids that last for five days after getting Vincristin (chemo) through his port, and sometimes Methotrexate (also chemo) in Joshua's spine. The appointment is usually long and arduous. The Vincristin almost immediately causes joint pain for Joshua. The steroids cause crazy mood swings, food cravings, and overall neediness. All of this together can make for 5 tough days for all of us.

The strange part began yesterday. The appointment went much faster than usual (thanks to a new system -- way to go clinic!). Joshua and I actually had a lot of fun. We played a Dora game, watched a National Geographic video and ate lunch with our sweet friend, Allison. To top all of this off, trombones played Christmas music on the Children's Hospital stage (if you aren't aware, Joshua is asking for band instruments for Christmas -- who knows?!) It was seemingly a great morning. The strangeness continued when we were told that Joshua has both an ear infection and strep throat. Mind you, he has not had any fever and has been playing and eating like a champ. 

Usually, Joshua wakes up the morning after this monthly appointment in tears, begging for food and wanting only to sit with mommy and watch a show. So, as I usually do on this kind of week, I woke up early, got Joshua's breakfast ready, pillows in place, and fed Andi her bottle so I would be ready. Instead, Joshua woke up laughing, ran into our room and said, "I think I might wait for breakfast." What? Are you seeing the strangeness with me?

This day continues to be weird. He played for 30 minutes straight with his trains, did puzzles, and then we spent time pretending with water to bake and cook with measuring cups and spoons. When Andi woke up from her nap he played pots and pans with her. Usually, during this week we avoid the kitchen altogether because of the massive cravings. Strange!

Joshua and Andi are both asleep right now and he may wake up as his normal steroid self. Either way, I am proud of how brave, strong, and kind Joshua always works hard to be during these weeks, or anytime for that matter. And, even if it is just my imagination, it was a very fun morning!

"Look at! She standing!"

Joshua's grammar is usually impeccable, but when he gets excited the words just start flying. So, when Andi pulled up on the couch and let go, Joshua let us all know about it. Of course, he said it so loudly, Andi got scared and fell hard, but it was still big news at our house.

Andi is 7 months and 10 days old. 2 weeks ago she started crawling. 1 week ago she was pulling up. This weeks she is pulling up, playing with toys while standing next to the couch, and letting go for seconds before she falls back on her bottom. It is so cute and we are all very proud and excited for her.

Life List

I think that most people have one. A list of things they hope to accomplish in a lifetime. Some of them may be written down and put in a safe place. Others only mental reminders. For me, the mental list reads closer to 1. Don't faint when speaking in public 2. Remember the correct birth date of your spouse (yes, I have gotten it wrong before) What I am saying is that none of my purposed accomplishments are monumental.

In light of my list, my husband's latest achievement is that much better. As you know from reading our blog, Michael is a fantastic writer. About a year ago, LifeWay published Michael's first book, a bible study titled The Tough Sayings of Jesus. The second volume is due to come out early next year. Well, on Michael's Life List, he has 1. Publish a good book (check) 2. Have that book appear on Amazon.com (check). That's right everyone....here it is. 

I am so proud of Michael for so many things. He's a great daddy, a thoughtful husband, a faithful provider, an excellent listener, a generous giver, and  so many more. He didn't need to be on Amazon to make me proud, but it is really fun to see him be proud of something he did. It looks really good on him.

Our Shield Delivers

Well, you guys, the Lord, and the doctors are fast today.

The doctor just called Jana - they tested the differential of Joshua's blood... nothing to be concerned about. He just needs an increase in chemo (that's nothing to worry about either).

It's not often that a victory is won so quickly; you're our fighters, and God is our rear guard.

Elevated Counts

I never wanted to write this, but here goes.

Jana and Joshua went to a regular appointment at the clinic today just to check his blood counts. The counts came back very elevated. Just a refresher on the human immune system as I understand it, here - your white blood cells fight disease and infection. So an elevated count indicates that the body is trying to fight something abnormal inside itself. This high count was one of the indicators when Joshua was first diagnosed with leukemia, and one of the things they look for every time they check his blood now. Since it is elevated, it is a possible indicator that he may be relapsing.

Then again, he may not. The cell count might also be high because Joshua has not had much chemo medicine recently (the chemo medicine suppresses the immune system and makes that number of disease fighters lower). It might also be higher because he has leftover white blood cells from when he was in the hospital a week ago fighting infection. There are a number of possibilities.

The doctor told us today that we shouldn't worry (like there's a chance in hell of that happening), that she would do a few more tests and if anything else abnormal shows up she would call us. At the very least Joshua is supposed to go in for chemo a week from today so they will check it again then.

So many of you have prayed so much for us over the past year; I'd love it if you could beat down the door with this one. We are asking God, who I have taken to calling our Shield, that this would be a false alarm. Please do the same with us, okay?

Maintenance Doesn't Mean "No Hospitals"

Hey, friends. Joshua had a fever last night and today we are once again at the Vandy Children's Hospital. Interestingly enough, Joshua couldn't wait to get here. He said he needed some more toys, so there you go - a product of our own creation. You tell him the hospital is a good place, and little by little he starts to believe you.

Maybe you're thinking to yourself, "For a kid in remission, Joshua sure spends alot of time in the hospital. So what's the deal with that?" Good question; sometimes it's easy for us to forget that even though he is very normal and seems to be very healthy, Joshua still takes chemo every single day and will do so for the next 2 years. So the immune system is still out of whack, even in this phase of treatment. I recently found a page that gives a really great description of the treatment phases of leukemia. If you're curious, you can get a 1-minute description of exactly what the treatment is, what the phases are, etc. Check it out below.

http://www.webmd.com/cancer/tc/leukemia-treatment-overview

Also, the doctors think that Joshua might need a boost to his immune system in a deeper way than he is currently getting. So they are doing a test to see if his immunoglobin has been compromised due to chemotherapy. If so, he will have blood transfusion soon. Maybe that will help with these nagging fevers he continues to have.

More later...

Team in Training

For 20 years, Team in Training has been raising money to support the care of leukemia and lymphoma patients and the research for a cure. A person can choose to run in all kinds of races on behalf of TNT. If they do, the individual takes on the responsibility to raise some money for the Leukemia and Lymphona Society, the society behind Team in Training. Joshua and our family have already been blessed by the work that TNT and the Leukemia and Lymphoma Society has done. They have helped develop many of the drugs that Joshua uses on a daily basis and that allow Joshua to function as normally as possible with a diagnosis of leukemia. Also, the society regularly reimburses us for our out-of-pocket perscription expenses.

Joshua, as you know, has responded wonderfully to almost all of the treatments he has received. Sadly, leukemia, is still the leading disease killer of children. My hope is that research can continue to combat this terrible disease. We've really started to believe and have certainly benefited from the work of this organization; this is just a little way for me to give back.

I plan to run the Country Music 1/2 Marathon on April 26th and have already, be it ever so slowly, begun my training. My goal is to raise $1800 before race day for the Leukemia and Lymphoma Society. This is totally low pressure, but I wanted to give you guys an opportunity to give just in case you wanted one. So you can click on the link to the right and check out my fundraising page. Thanks in advance! See you at the finish line. Hopefully.

Her First, His First

Yes, this was Andi's first Halloween. And, yes, she looked super cute, but it seemed like it was Joshua's first as well. For the past three years we have dressed Joshua up and given him a basket to fill with candy, but this is the year that he understood what saying, "trick or treat," could do for him. Once, we turned him loose, there was no turning back. He left the night saying, "Please have more candy. I love my candy." We all had great time.


Joshua made a great knight. Thanks to VeggieTales, he ran around the Platt's house saying, "The sword of the Lord and of Gideon!" Hail might man of valor.


Andi was happy and warm in her chicken costume. Don't think about the Chicken Song or it will be stuck in your head for days.

Needless to say, Joshua is feeling great. Poor Andi had her first ear infection last week, and handled it like a champ. Amazingly enough, Joshua has still not had a fever in 10 days. Our prayers are being answered.