Wake me up when September ends...

Hi everyone,

I can't believe September is almost over. The past few months have been a blur. It feels like it should still be mid-June, and we should be looking forward to a couple of hot months and a trip to the beach. But instead, it's in the mid-50's and low-60's, and the rainy wind is starting to cut through our sweatshirts. But, with the quick passing of days - rolling into weeks - rolling into months - rolling into seasons, also comes the small spark of excitement that is starting to take hold. It is still small, and at times indistinguishable, but it's there. It's the excitement that soon we'll see the finish line. It's still a ways off, but it's out there. Just over the horizon. We just have to stay strong, keep our heads down and our hearts faithful, and confront each day with a voracious desire to do whatever it takes to bring our little boy home, healthy and happy.

So - it's Wednesday... The mid-week slump, combined with the gray skies and persistent rain that's been hanging over our beautiful Hoosier state means that everyone is tired. But we're hanging in there. Steph and I enjoyed a nice date night on Saturday night - a big thank you to her parents who came down to sit with Levi while we were away. After getting our money's worth out of the "never ending pasta bowl" promotion at Olive Garden, we went to see Contagion. And yes, I do think it is sort of ironic that we picked a movie about a deadly disease, but oh well, it was the only thing that looked remotely interesting. I thought I was going through a lot of hand sanitizer (or as Caylee calls it - "hanitizer") before, but after seeing that movie I have doubled my hand sanitization habits. And I will never, ever touch the poles in a subway car or on a public bus again. Despite the OCD-inducing movie, we enjoyed the time together.

Our actual anniversary was yesterday, the 27th. I had decided on my way home on Sunday night that I was going to try to surprise Steph on our anniversary, so with the Bennetts watching Caylee for the evening, I headed down to see her after work. It was a lot of driving to fit in one evening, but it was worth it to see the surprise on her face when I walked in the hospital room. It was a short visit, but after a romantic meal of cafeteria cheeseburgers and Diet Dr. Pepper, we sat back and watched Levi buzz around the room playing basketball and chatting up a storm. He had a platelets transfusion earlier in the day, and was feeling great. It was cute to see him acting goofy, trying to make us laugh, and destroying Steph's collection of quilting magazines.

Caylee and I got home pretty late last night, so needless to say we were both wrecks this morning. But, somehow we drug ourselves out of our beds, and I think I even got her in matching clothes. She didn't last long tonight, and at this rate I don't think I will make it much longer either.

Levi's counts are still slowly coming down. He had an ANC count of around 40 this morning, so there are some neutrophils hanging in there. We think his counts will bottom out, but we're not for certain. You all know the drill by now - once they're down, we just have to wait until they build back up again. He still has his appetite, is very energetic, and seems to be feeling fine. For that, we give God praise, as we know He is answering our prayers and walking with Levi through this treatment every step of the way. I am heading to Los Angeles next week for a conference, so please keep us all in your prayers for that as well. I am looking forward to the trip, but it is tough to be away from home at a time like this.

In closing for tonight, Steph and I want to thank you all for the anniversary well-wishes. There are so many of you out there that we look up to as examples for our marriage. We once again thank you for prayerfully supporting our family, and thank God for the support that we have in this battle. Levi is a tough fighter, and I can't wait to see what God has in store for him.

We love you all,
Michael, Stephanie, Caylee, and little Levi

All you need is love...

Ahh, the weekend...

Hope everyone is doing ok - as I write this post, Levi is passed out in his crib and Steph is passed out on her daybed/loveseat/couch thing in the room. So, I've got my earphones in and ready to write you all a good ol' update...

We had a pretty good week, Levi is doing well. His counts are still up there - a couple of them are coming down a little, but his ANC is still above a thousand. The doctor told us today that it was unusual for the counts to stay high after a round of chemo, but since his MRD came back negative, they're all good cells, so nothing to worry about. I guess we're not sure if he's going to bottom out, and if he does, it may take a little while. Levi's fine with that, though, as he has been roaming the halls and hanging out with the nurses.

He really is something to see when he walks/runs down the halls. It's like he owns the place with his little chest stuck out. Every once in awhile I think I can even detect a slight swagger... Of course, the nurses all love him, so he's pretty much got the run of the place. He'll walk right behind their nursing station to hang out with them or see if there's anything he wants to play with. Somehow we have a calculator in the room right now that he swiped from their desk drawer. He even tried to sneak a kiss from one of the nurses last weekend. He flirted, waited for the right moment, then went for it all puckered up. It was pretty cute; I'm just hoping we don't get a hostile work environment report filed against him. They had a snowcone party in the play room this past week, here's a picture of him rocking his sunglasses and waiting patiently for his tutti frutti snowcone. It is so good to see him enjoying life, even if it is from a pediatric ward.


Caylee and I had the opportunity to walk in the Light the Night fundraiser walk in Warsaw on Thursday with the Bennetts. It was a pretty cool experience, and all the proceeds go to the Leukemia and Lymphoma Society. The walk raised over $30K. We carried a white survivor's balloon with Levi's name on it along with the red balloons for those supporting the sick.








Caylee rode with her buddy Cale in the wagon, and as soon as the walk started, Levi's white balloon, which had been flying high the whole time we were staging, sunk down a little and hovered right with Caylee for the whole walk. It was an emotional reminder of how close those two really are, and how much we long for them to be together soon.






Caylee and I came down to the hospital last night. We walked in the door of the peds unit, and there was Levi and mommy, roaming the halls. The kids sprinted towards each other and embraced, then got right down to playing and turning the normally peaceful 4th floor into a rowdy raceway. Caylee hopped in a wagon and Levi pushed her up and down the halls, both of them laughing and squealing with delight. I made a few feable attempts to keep them quiet, but realized pretty quickly that all attempts were futile and just let them be brother and sister for awhile.




Nate, Amy, Xavier, and Cyrus arrived at the hospital a little while later, and we enjoyed a nice visit with them in the playroom while the boys and Caylee deconstructed that room as well. Levi just soaks these moments up, playing hard with his sister and little cousin for a few minutes, then taking a couple of moments to sit on someone's lap for just a bit to get loved on. They took Caylee back down south for the weekend; we're very appreciative of their help. Steph's parents are coming sometime this afternoon, and we're going to try to sneak out for dinner and a movie. Not sure where we'll eat or what we'll see, but I honestly don't really care. I just want to spend some time with my sweetheart.

I wanted to thank you all again for the outpouring of love that you shown us. I know I've talked a lot about faith in the past couple of weeks, but love - unconditional, unending, unwavering love - is so important to us right now. Love that Stephanie and I have for each other, love that we have for our children, love that we get from our family and friends - all is essential. Without it, this journey would take a turn for the darker; we would feel isolated, demotivated, and worst of all, defeated. This would not be good for Levi or his recovery. Here's one of my favorite passages; it's familiar to most people, as a portion of it gets read at most weddings. But read it with a different context in mind; read it and apply it to your current situation. What are you doing right now - today - this weekend... Does any of it matter if you don't have love? Or do all of your actions become hollow because there is no love behind them? This passage tends to jolt me out of my daily routines, making me examine whether there really is any true meaning behind my routines and mindless activities.

1 Corinthians 13

1 If I speak in the tongues of men or of angels, but do not have love, I am only a resounding gong or a clanging cymbal. 2 If I have the gift of prophecy and can fathom all mysteries and all knowledge, and if I have a faith that can move mountains, but do not have love, I am nothing. 3 If I give all I possess to the poor and give over my body to hardship that I may boast, but do not have love, I gain nothing.

4 Love is patient, love is kind. It does not envy, it does not boast, it is not proud. 5 It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. 6 Love does not delight in evil but rejoices with the truth. 7 It always protects, always trusts, always hopes, always perseveres.

8 Love never fails. But where there are prophecies, they will cease; where there are tongues, they will be stilled; where there is knowledge, it will pass away. 9 For we know in part and we prophesy in part, 10 but when completeness comes, what is in part disappears. 11 When I was a child, I talked like a child, I thought like a child, I reasoned like a child. When I became a man, I put the ways of childhood behind me. 12 For now we see only a reflection as in a mirror; then we shall see face to face. Now I know in part; then I shall know fully, even as I am fully known.

13 And now these three remain: faith, hope and love. But the greatest of these is love.

We love you all. I hope you have a great weekend loving on your families. That's all that really matters.

Michael, Stephanie, Caylee, and little Levi

Round 3 is over, now we wait...

Hey everyone,


Round III is officially over... Levi had his last chemo treatment yesterday morning at 2am. That's good news for a lot of reasons. He is now officially done with his eye drops for awhile (it's amazing how strong he is when you're trying to wrestle him down and put drops in his eyes!). It also means that they were able to unhook him from his IV during the day, which made him AND Steph very happy. He's not a big fan of all that tubing. So, he's back to his normal mobile self for awhile. They still have him hooked up to get fluids at night, but that doesn't seem to bother him while he's asleep. Here's a picture of him trying to help change his dressing this weekend - it was pretty cute. He didn't cry or anything, just grabbed the little wrappers and acted like he was doing it himself. He's a pro at this stuff; it really is amazing how well he's adapted to the treatments, routines, and tests he gets everyday.

I just talked to Steph a few minutes ago, and he's doing fine. He was a little cranky today, but can't really blame him for that. He is a little busy-body in that room, and enjoys his visits from the therapy dogs and keeping his room clean (a habit I hope he keeps as he grows older). He will probably get blood tomorrow, as his hemoglobin is starting to dip - a sign that his counts are starting to drop. So, we are now officially on fever watch; the doctors and nurses were amazed that he stayed fever-free and healthy after the last round, but we're expecting the same this round! Please keep praying that he will stay away from sicknesses and infections; as I've mentioned before, these can really be nasty while his immune system is virtually non-existent.

Stephanie and I are doing pretty well right now. It seemed like the 5-day treatment he just went through really moved pretty quickly. Of course, we are starting to look forward to his next visit home... Caylee and I are planning on heading down there again this weekend, and I think Steph's parents are going to sit with Levi for a little while on Saturday night so Steph and I can sneak out for a nice meal to celebrate our anniversary (which technically isn't until next Tuesday).

Caylee is also doing well. She is talking about Bubby a lot this round. I think the further we get into this treatment marathon, the more she is realizing what is actually happening. She used to just ask where Bubby and Mommy were, but she doesn't do that anymore. Instead, she will see something on TV or think of something that reminds her of him, then talk about how Bubby likes this or says that. She is concerned, but she always makes sure we pray about Bubby getting better when we give thanks before our meals or during our bedtime prayers. She is doing very well in preschool; it is amazing the progress she is making. I just had to include this picture of her this evening - riding her bike around the neighborhood with her helmet and motorcycle glasses.

Thank you all for your continued love and support. We continue to get cards and gifts in the mail - they are such a source of encouragement for us. Also - we have had many ask us if they could bring us meals while Steph and Levi are in the hospital, so I wanted to let you know that we got hooked up with a website that helps with the coordination of that. It feels strange to be posting this, but I know that many of you are wanting to help and continue to ask, so I thought I would share it with you. Here's the link - I think you can just sign up for meals if you would like. Also - if you know of any other families facing tough situations, you can sign them up on this website too; it's a pretty neat system.

http://www.TakeThemAMeal.com/meals.php?t=AIUG6346

Alright, that's enough for tonight... Time to go pass out in bed. We love you all, and thank you again for all that you do for us. God is good.

Michael, Stephanie, Caylee, and little Levi

Round II test results...

Hi everyone,

Just wanted to give you a quick update on Levi's Round II test results...

The bone marrow aspiration came back clear, and the MRD came back negative! Once again, God has answered our prayers, and we give Him the glory for Levi's progress.

I just talked to the doctor, and he told me that the children with negative MRD results typically have better outcomes and greater chances for a cure. We take great encouragement in this. He also told me that out of his 30 years of practicing, Levi's last round was the easiest and smoothest he had seen.

Once again, I praise God for these great results, and thank you for continuing to lift up our little fighter in your prayers.

Love you all,
Michael, Stephanie, Caylee, and little Levi

It is well...

So, Round III has officially started. We arrived at the hospital yesterday morning (and for future reference, don’t believe me when I say that I have a new way from Warsaw to the hospital that is more fun and just as fast). Once we arrived, things started rolling pretty quickly. We took Levi to the clinic, where they performed their barrage of measurements, questions, and blood draws.

Levi decided he was big enough to do some of this on his own, so he donned a mask and rubber gloves and helped as much as he could. He is getting so used to this by now – he helps push the syringes when they flush his lines, knows how to operate their thermometers and stethoscopes, and sometimes even takes the oral meds by himself. I figure when gets older he will either despise doctors or want to become one. Everything looked good (he had even put on a little more weight), so we headed to his hospital room. He’s in the same room again – 410 – so he still gets an outside view and can see down the hall to wave at the nurses and other patients as they walk through the ward.

My mom came up to help us out – it was great having her there, both for moral and emotional support as well as an extra hand to corral Levi as we unloaded and unpacked his things. We’re getting pretty good at this now; we learned that it is much easier if you just leave everything packed in totes and stored in the van instead of getting everything back out after you get home. Just promise me, dear readers, that if you ever see a tired looking couple pulling wagons through the hospital loaded with totes, luggage, and little toddler toys, that you will never make comments like “Wow, moving in huh!” or “Did you bring enough stuff?” Chances are, they’re not there for a vacation, and would give just about anything to not have to be hauling in those loads in preparation for a long stay. Instead, just offer a smile or open the door for them. It goes over a lot better…

They performed the bone marrow biopsy and the spinal tap in his room, then fired up the chemo around 2 pm. This round will last five days, so he will finish up next Monday. Stephanie is already pretty worn out from the “chasing a toddler with an IV pole” routine, so we are glad these rounds are getting shorter, not longer. He’s not a big fan of the eye drops he gets every six hours; the nurses told us that they burn a little bit, so it also makes it tough for him to go back to sleep when they give him the drops at 2 am.

Things are going ok so far. He’s hanging in there, and proving once again that he’s a tough little dude. We are praying for good results from the tests they performed yesterday, and that he can stay away from some of the nasty side effects that can come from the stronger dose of chemo drugs that he’s getting. I am heading down there tomorrow afternoon, and will get him all to myself tomorrow night and most of the day on Saturday, as Steph and Caylee head down to Seymour for my little sister’s bridal shower.

The concept of “faith” has been on my mind a lot lately. This round is going to require a lot of it, as the adrenaline for the Levi’s first two rounds of chemo has waned, and the thought that we’re not yet halfway through his treatment weighs heavy on our minds. The Bible tells us in Hebrews 11:1-2 “Now faith is confidence in what we hope for and assurance about what we do not see. This is what the ancients were commended for.” I have confidence in what I hope for, and I am assured by what I do not see. I pray that we can achieve the type of faith that is considered commendable for those that come behind us as well. That chapter in Hebrews is awesome – it goes on to talk about the models of faith that we see throughout the Old Testament. But I want to share with you one of the models of my faith.

Last year, when Levi was first diagnosed with AML Leukemia, I found myself struggling with anger and bitterness. I would like to tell you that I was not angry with God, but that wouldn’t be true. It was one of the many forms my strong reaction to his diagnosis took. One afternoon, I knew that my heart was not right, and I prayed that God would give me a song to sing. Now, many of you know that while I have very little musical talent myself, I love music. I would rather listen to music than watch TV or read books, and usually my taste and opinion on music is the harder and louder – the better. So I halfway expected to have a fast-paced worship song come to mind that we hear in church or on contemporary Christian radio, but instead the song I was given was much simpler – and much more blunt. Here are the words – many of you know it well…

When peace like a river, attendeth my way,
When sorrows like sea billows roll;
Whatever my lot, Thou has taught me to say,
It is well, it is well with my soul.

My sin, oh the bliss, of this glorious thought!
My sin, not in part, but the whole,
Is nailed to the cross and I bear it no more,
Praise the Lord, praise the Lord, O my soul!

And Lord, haste the day when my faith shall be sight,
The clouds be rolled back as a scroll;
The trump shall resound, and the Lord shall descend,
Even so, it is well with my soul.

Of course, the song is “It Is Well With My Soul,” by Horatio Spafford, and there are more verses than what I’ve written above. In the 1870’s, this guy’s life took a turn toward the tragic. He lost his only son, lost everything in the Chicago Fire, and then lost all four of his daughters after sending them, along with his wife, on a ship to Europe for a family trip. After being devastated by the news, he set sail to Europe to be with his distraught wife and wrote the words above while passing the place where his daughters perished. My reaction to this story, after first reading about Horatio, was “are you kidding me?” He lost everything. Most would have nodded their heads in understanding and sympathy if he turned bitter and rejected his faith. But he didn’t. Instead, he poured it out in his words, and I can picture him on the deck of the ship with tears running down his face looking up towards the heavens and telling God – “you know what, I’ve seen tragedy, but I continue to place my faith in You and all this stuff that’s going on – it’s all well with my soul.” He knew he had victory, and his faith in the God’s sovereignty and master plan continues to amaze me.

So – I know I am rambling, but this is a song that I have sung, prayed, and recited countless times. I even have it written on note cards where I can see it daily. It continues to bring tears to my eyes when I hear it in church, and when my time on earth is through, it will be played at my funeral. It snuck its way back into my head yesterday on the drive down to hospital. I pray that I can have faith like Horatio, and I trust that God is in control, and will strive to consider it joy when we face trials of many kinds, because the testing of our faith produces perseverance, and when perseverance finishes its work we will be complete (James 1:2-4).

Thanks for your continued love, prayers, and support, and may your faith be strong when you pray for our little Levi.

Love you all,
Michael, Stephanie, Caylee, and little Levi

Fun time's over, back to business...

Hey everyone,


I hope all of your weeks are off to a good start. We are coming off of a great weekend - we had a blast with Nate, Amy, and Xavier. Little Levi and Xavier enjoyed having someone to rough house with, and if their rough-housing at this young of an age is a sign of things to come, it will be fun to watch them grow up together. Nate and I were able to escape a couple of times for a little H-D two-wheel therapy, and even had a chance to do a little shooting. Amy and Steph snuck out to do some fabric shopping, so Steph should be stocked up for this next hospital stay.

The home healthcare nurse came out yesterday and drew Levi's labs. We got the results back today, and all his blood counts are fine. His ANC was over 900, higher than the 750 mark he needed to start his next round. So -- it's off to Indy we go first thing in the morning to start the next round.


Steph went out with Briana Kessler tonight for a girl's coffee and pedicure, which she thoroughly enjoyed. I had a good time here at home, hanging with the kiddos. It was an absolutely perfect night outside, so we got some good swingset time in before tomorrow's trip. Round 3... The halfway point... Well, in case you are wondering, it's not getting any easier. I am not looking forward to getting Levi up in the morning, packing up the van, and taking Stephanie and him down to the hospital, knowing that it will be weeks before we can feel like a family again.


As I have mentioned before in my posts, there are moments we experience that I wish I could capture and burn into my memory, a welcome weapon to fight the tough times. Tonight, as Levi was at the top of the slide and I was waiting at the bottom, things felt normal. And as he launched himself downward, his face lit up in his goofy little toothy grin, squealing with delight in his beautiful little squeaky voice, he seemed as he should - a one and half year old boy playing outside as little boys do, caring only for how fast he could race down the slide to my waiting arms. But then, as I caught him, I could feel the tubing from his central line coiling and snaking across his chest under his tough guy t-shirt, and reality would come screaming back up to hit me in the chest. I could only bury my face in his little neck and tell him how much I loved him. As any little boy would, he tolerated my embrace for a few moments, then pushed away to point at the slide once again.

I love that little boy, with all my heart. I know that God has a plan for him, and I know that He is in control. I once again give it all to Him; Levi's health, life, and future is in His hands. I thank Him that He is in control, for once again I am empty, dreading the morning, and relying on Him to heal my little boy and to give me the strength to weather this next round.

God bless you all,
Michael, Stephanie, Caylee, and little Levi

Enjoying laying low...

Hey everybody,

Just wanted to give everyone a quick update on our week here at home. We've been enjoying our time together immensely. The kids are playing hard, although Levi has spouted a little tough-guy attitude with his big sister all of a sudden; now it seems like we are getting after him for picking on Caylee as much as we're after Caylee for picking on him. We love it though.

The home healthcare nurse came out yesterday to check Levi out and draw his labs. We got his results back today, and all his levels look good and are in the normal ranges. His ANC is still sub-500, so no playing outside or taking any trips yet. But that's ok; we've been having fun just hanging out here at home.

We talked to the doctor's office down at Riley, and they said that they will take a look at his blood test results that he'll have drawn on Monday to confirm whether or not he'll start chemo again on Wednesday. He has to have an ANC level of 750 before they start. If it's not up to that level yet, them may delay the start of the third round by a few days. My guess, though, is that his ANC will be high enough by Wednesday, especially if he rebounds similarly to the way he did after his first round.

I took the day off of work today, and enjoyed my time spent here at home. We got some house stuff done (always helps to have Steph here to motivate me), and logged several hours on the floor rough-housing with the kids. It is fun to see Levi jump right in to the mix. He is doing so well here at home, he's sleeping around 11 hours at night, eating more than Caylee is, and walking/running all over the place.

We are waiting on a visit from his Uncle Nate, Aunt Amy, and his little cousin Xavier. We're looking forward to a fun weekend with them. I hope you all have a great weekend, enjoy the time with your families, and as we hit the 10th anniversary of the September 11th tragedy, take some time to pray for peace and for the safety for our police and firemen, as well as all of our troops in uniform sacrificing so much for this country that we love.

Love you all,
Michael, Stephanie, Caylee, and little Levi

All present and accounted for...

Hi everyone,

I hope you all had a great long weekend! We enjoyed ours, and had a great time helping my little nephew Xavier celebrate his first birthday. A big thanks again to Steph's mom and dad for sitting with Levi while Caylee, Steph, and I headed south for the big party. It was hard not having Levi there, but like I mentioned in our last post, we know this is temporary, and soon we'll be able to enjoy special occasions like birthdays as a complete family.


Ok - now I have to jump straight to my favorite part -- Levi was able to come home today! Yup! Steph called me this morning at work and said those four words I was waiting to hear (no, not "Cubs win the pennant")- "come get us now!" So, I wasted no time in jumping in the car, heading home for a five minute pick-up just to make sure things weren't bad enough that she'd leave me once she walked in the door, and I was on my way down to Indy. She and Levi were happy to see me, and it only took four wagon loads this time to get everything loaded in the van. He was all smiles and talked most of the way home. The relief is so evident in his actions, even at his young age.


I was going to try to get a picture of Caylee and Levi playing together, but it would have just been a blur. She and Levi chased each other all over the house, had screaming contests in the living room, argued over the kickball, and chatted away like siblings, making up for lost time. Just like on our last break, Steph and I just sat on the couch and watched them play. Needless to say, they were both absolutely wiped out when we stuck them in bed a few minutes ago. You could tell, as Levi layed right down without a peep and Caylee put up a good 15 minute screaming fit before she finally gave in. Ahh, things are normal and it feels good.

Levi is still technically under nutropenic precaution, as his counts are still pretty low. But, the doctor wanted to get him home, as it is actually much easier for little ones to stay away from germs and infection at home than it is in the hospital. All sort of nasty bugs lurking there I guess. We are monitoring his temperature and watching for signs of coughs, but praying and trusting God that he will have a solid rest and recovery time like he did after his first round.

We'll take him back next Wednesday to kick off his third round of chemo. We talked to the specialist today before we left, and it sounds like the third, fourth, and fifth rounds are challenging, but for different reasons. They aren't as long and they don't involve as many drugs, but the chemo dosages are higher, which increases the chance for some nasty side effects. He will have to get eye drops every three to four hours around the clock to keep from having eye issues due to the chemo being secreted from his tear ducts. And, as always, we'll have to watch for mouth sores, increased fevers, and severe diaper rash. We can handle this, though, knowing that he is getting better and that the chemo definitely appears to be working. If his tests continue to come back clear, then he will not have to undergo a bone marrow transplant!

But, we'll deal with all of that next week. For this week, we are going to lay low, love on our kids, and enjoy the peace and comfort that comes with all four of us being together again under one roof. God knows when we need a break, and we are thanking Him for this one.

I can't believe the house is quiet, both kids are in bed, and we have the windows open enjoying the cool night breeze. Life is good, and I am thankful for the unmeasurable blessings that we continue to receive. I'm just waiting for Steph to get back from a quick grocery run (I have a bad habit of letting the grocery supply dwindle to near nothingness when she's not here), then it's time to enjoy a night together. We will probably try to enjoy a movie or something, but typically we both end up passing out well before make it through one. The sleepless nights catch up with us pretty quickly these days.

Thank you again for your love, support, and prayers. God continues to walk with us through this battle, and if He is with us, who can be against us?

We love you all,
Michael, Stephanie, Caylee, and little Levi

Awaiting the rebound...

Ahh, a nice long weekend ahead of us. I wish you all a very happy Labor Day weekend, whether you're heading out or staying in. Take the chances you get to love on your families, and stay cool! (temperature-wise, not cool as in awesome...)


Levi has continued to do well this week. His counts were completely bottomed out for a few days, but are now starting to show slight little hints that they might be getting ready to come back up. His platelets doubled since yesterday, and he had a good number of monocytes in his counts this morning. His ANC showed 18 yesterday, but today was back at 0, so still no immune system. Once it starts to get in the hundreds, then we'll start to be a little less paranoid.

When Steph talked to the doctor this morning, he mentioned that if his counts start to go up this weekend, he may get to go home! Wow. That would be awesome. But, we're not going to get our hopes up, we've been down that road before. We'll just take our encouragement from the fact that he seems to be bouncing back rather nicely this round and that each day he does better. And, we'll continue to pray that he stays healthy and steers clear of infections and fevers, both of which could derail things pretty quickly. Of course, we would love him to come home this weekend. But we're not getting our hopes up... Have to keep telling myself that... :)


Stephanie is doing well, she has been cranking out sewing projects at a feverish pace. I am impressed with what she can do with limited space and the one or two hours a day that she can work on her projects while Levi naps. I think she really perked up when the doctor said something about coming home. Oh yeah, we're not supposed to get our hopes up...

Caylee is doing well, she had another good week at preschool. I am glad that they send her schoolwork home with her everyday, it proves to me that she is actually being productive there. According to her, apparently all she does is sing songs and eat snacks. It's good to have objective evidence otherwise. I took her down to Steph's parents' last night, where we enjoyed a great meal and Caylee ate her own body weight in sweet corn.


I came down to the hospital this afternoon. I brought Levi some Hot Wheels - he thought they were just about the coolest thing ever. I am going to have to make it a practice to bring him a couple each visit. Pretty soon, he'll have a collection that rivals his daddy's, although I am actually letting him take his out of the packages (as much as that kills me). He showed off his hoops skills - apparently he's been practicing this week. I think another few weeks and he'll be able to take me in a game of horse. Maybe we'll even get to practice at home soon! (oh yeah, not supposed to get our hopes up...)

We have a pretty busy weekend ahead of us. Steph's parents are bringing Caylee down to the hospital tomorrow morning, and she, Stephanie, and I will head down to Seymour to help my little nephew Xavier celebrate his first birthday. Steph's parents will hang out here with Levi while we're gone. Then Steph and I will head back up here tomorrow night while Caylee stays with my parents down there. Gonna be a lot of miles on the road, but looking forward to seeing everyone. It will be tough to be without Levi for the birthday party, but it's just a temporary thing - soon he'll be done with treatments and get back to being a healthy little boy and we can resume some semblance of a normal life.

That's it for now - we'll keep you posted on whether or not we get to go home in the next couple of days. Of course, we're not getting our hopes up. Maybe if I keep telling myself that it will actually work...

Thanks for all your prayers and support. Please pray specifically that Levi can stay away from sickness and fevers right now, it's such a vulnerable state to be without an immune system. We love you all dearly, and thank God daily for our family and friends.

Have a great weekend,
Michael, Stephanie, Caylee, and little Levi

Keep fighting...

Hi everyone!

[placeholder for ubiquitous apology for it being a few days since I've posted]

I hope your weeks are going well so far. So, lots of stuff to catch up on here... Last time I posted, I had made it down to Riley, so you know that I was visiting Steph and Levi. We had a pretty good weekend together, Levi was all over the place. I took his basketball goal down to see if he would be interested in some hoops, and it was a huge hit. We figured that since he was staying in an IU hospital, he might as well be working on his baller skills. He wore us out shooting the ball and chasing it under the crib, behind the chairs, and pretty much every other inconvenient place a mini-basketball can fit. He was in good spirits all weekend, and it was very encouraging to see him so active. He is walking so well now, I would say he's pretty close to being back at full speed now.

The doctors are pleased with his progress, it seems that everything is pretty much right on schedule. His counts are bottomed out and his ANC is at 0, so we are on the "anti-infection", "anti-sickness", "anti-everything from the outside world" kick again. But so far so good, no fevers yet and his appetite is maintaining at a voracious level. The doctors did tell us that fevers and sickness are pretty much inevitable at some point, so we are going to try not to freak out if they do pop up. They did decide to hook him back up to the IV in order to give him fluids at night, since he's not drinking as much as he probably should be. This is common though for little ones going through chemo. The doctor commented that he was making "remarkable" progress on his weight. They re-weighed him today, and he has gained around two pounds since his treatments first started. You can mainly tell it in his face and in his legs; he's never beeen a chunky kid, so a little weight here and there is pretty noticeable. He's finally back up to over 20 lbs, which is an encouraging milestone for us.

Caylee and I are doing pretty well. We were able to sneak off to a baseball game in Fort Wayne last night with Wally and Cale Bennett, a much needed escape with great friends. Caylee is doing well in school, it's amazing how quickly she is learning and flourishing with her friends. She has some big events coming up next week - her first show and tell and her first class field trip! They'll be making the trek down the street to the bakery in Winona Lake - I am sure she'll come back fired up to do some baking. Despite a minor panic trying to dig a popcorn seed out of her nose a little while ago, it's been a pretty quiet and relaxing night tonight.

Stephanie is holding up pretty well, although I know she's tired. It's a lot of work chasing a toddler around, especially when they have to hook him back up to the IV to give him fluids or platelets (which he had yesterday). She's doing such a good job, though, it takes a special amount of mommy strength and patience to sacrifice one's own needs for the needs of your little one. Her level of dedication to Levi's care is admirable. God continues to provide the grace needed to keep fighting.

As you know, last week was rough for us. The burdens of this battle weighed heavy on both of us. However, we know we serve the One that gives us peace that passes understanding. In closing, I wanted to share a verse with you that reinforces the peace we have in Christ.

John 14:27
27 Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid.

We are taking a stand against the fear that so easily takes hold, and are trying not to let our hearts be troubled. Some days are harder than others, but we thank God for the continued peace He gives us if we will just turn our faces upward and receive it.

Love you all,
Michael, Stephanie, Caylee, and little Levi

Finally, it's Friday...

Finally, it's the weekend...

Hi everyone. I hope you all had a good week. I know we were all living for the weekend this week - it seemed like quite a long one. Levi's counts are on the way down (as expected), but he is holding up very well. He still has just a trace of an ANC, it was 56 this morning. This means that tomorrow it will likely be zero. He did have a blood transfusion this week, and will probably need platelets soon. He and Steph have been logging the miles and wearing paths around this hospital room. He is very active, and getting into everything he can think of. At one point Steph was working on cleaning some of his sippy cups, and when she turned around to check on him he had climbed up on one of the chairs and was having a good ol' time just bouncing away. Needless to say, Steph has had a busy week, but enjoyed a visit from her dad on Wednesday and a dinner from her aunt and uncle on Wednesday night.

My dad was up around Warsaw yesterday for some meetings, so he was able to swing by after work and pick up Caylee to take her down to their house. She was ultra-excited to see him and thought she was pretty big stuff leaving with Grandpa in his truck by herself. She did well on the way down, and after a Happy Meal and a nap she decided that he was going the wrong direction for Grandma's house and gave him quite the earful the rest of the way there. Nothing like a 3 year old backseat driver!


I came down to Indy this afternoon, and it was great to see my wife and little guy. I couldn't believe how much better he was getting around. He also looks like he is putting on some weight again; Steph said he has gained 1.5 pounds since July. We enjoyed some daddy/son rough-housing and conversations about the trucks outside. His little ornery streak is definitely back, which is heartening to see. It is good to spend time with him and Steph, and I am looking forward to the weekend with them both.

I am not sure why this past week was so tough. I had to get talked off the ledge a few times - it seemed that the separation and stress just kept adding up on me until I felt like breaking. It seems like my hardest times always come after I allow myself to start focusing inward; it's easy to fall into the trap of self-pity, and I start stuffing all my struggles and worries into a jar labeled "hopeless". But who am I to complain? As soon as I start letting go of me and begin to shift my focus back to God, the clouds start to clear and I can get back to doing what I'm supposed to do; be a loving husband and a strong daddy. After all, this battle has already been fought and won, we're just waiting to realize the end.

There's a passage in Matthew that I love that talks about this worry and how futile it really is.

Matthew 6:25-27
25 “Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more than food, and the body more than clothes? 26 Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? 27 Can any one of you by worrying add a single hour to your life?"

As usual, I had my music cranked in my truck on the way down, and a song by came on by Red titled "It's Already Over". The chorus brought tears to my eyes, because it seemed to describe the point I had reached over the past few days:

Give it all to you
Letting go of me
Reaching as I fall
I know it's already over now
Nothing left to lose
Loving you again!
I know it's already over now!

In closing, I want to thank you all for your prayers and encouragement this week; they were needed and appreciated. We serve a God who continues to move mountains in our lives, and once again I give it all to Him.

We love you all,
-Michael, Stephanie, Caylee, and little Levi

Round 2 in the books...

Hi everyone,

I hope your week is off to a good start. Things are going ok for us. This morning, at 2am, Levi had the last of his second round chemo treatments. That meant that they were able to disconnect him from his IV for a little while, and hopefully the nights will be a little less interrupted and a little more restful. This also means that his counts will bottom out very soon. We are guessing they will go down tomorrow. When they do go down, he will be back in neutropenic precaution, which means no more fun trips up and down the hall on foot or in the little red car. This makes things tougher for Steph, as the four walls of the hospital room start to close in when he gets frustrated and stir-crazy. Not that we can blame him though, the little guy finally feels well enough to be active and can't quite understand why he's cooped up.

Caylee is hanging in there. She started her second week of preschool today, and seems to be loving it. I also, for the first time ever, got to yell "Caylee - sit down and do your homework!" tonight. But I seriously doubt it will be the last... She is settling into our new routine without too much difficulty, and I am proud of her enthusiasm and coloring capability.

As for mommy and daddy, well, we're tired... Today was kind of rough on Steph, as Levi was pretty ouchy and didn't give her many chances to sit down and rest. As for me (I'll be a little vulnerable here), having my family split in half was really weighing on me today. As I've mentioned before, some days are rougher than others, and today was one of those days.

There seems to be this nagging feeling that makes it's presence known on days like this; it is not easily suppressed, and tends to spin out of control when left unchecked. I had a good talk with a friend of ours at work yesterday, who has been through the exact same situation as the one in which we find ourselves. He labeled this feeling for me ... guilt. I feel as if others who have gone through battles like this will know what I'm referring to. I feel guilty when I'm up here with Caylee because I can't be down there with them. I feel guilty when I'm in the hospital visiting Steph and Levi because I am not with my little girl. I feel guilty when I call Steph and hear Levi crying in the background, the weariness evident in her voice. I feel guilty when I'm staring into space, lost in my thoughts, and Caylee taps me and asks "What's wrong Daddy? Are you ok?" I feel guilty that I can't be with all who need me at the same time, stetched too thin to meet everyone's needs. That's a tough feeling for me.

This is not the first time I have struggled with guilt. When Levi got sick this year, I was struck hard with it. Plaguing questions raced around in my head. Was I not thankful enough that Levi got better last year? Did I not tell enough people about how God took away his sickness? Did I mess up somehow that this is some sort of punishment? These doubts and questions were devastating. Thankfully, I received some much needed counsel from some strong men of faith, who explained that we live in a broken world that is reeling from the effects of man's fall, which won't be healed until Christ's return. In that I put my faith and find relief from these guilty feelings. Additionally, there are a couple of passages of scripture that have helped me deal with these thoughts.

Romans 8:1-3
1 Therefore, there is now no condemnation for those who are in Christ Jesus, 2 because through Christ Jesus the law of the Spirit who gives life has set you[a] free from the law of sin and death. 3 For what the law was powerless to do because it was weakened by the flesh, God did by sending his own Son in the likeness of sinful flesh to be a sin offering.

Additionally, a story from John helped me put things in perspective.

John 9:1-3
1 As he went along, he saw a man blind from birth. 2 His disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?” 3 “Neither this man nor his parents sinned,” said Jesus, “but this happened so that the works of God might be displayed in him.

I pray that through Levi's battle, the works of God might be displayed. I am trusting Him to guide us down the path that will bring Him the most glory. In closing, I wanted to say that I realize I may have gotten a little deep there for some of you; not all of my posts end up quite like this. However, I feel like there may be some out there who needed to read this.

Thank you for your continued prayer and support. We love you all. Your encouragement means so much to us, and help give us that lift needed to get through the tough times.
Michael, Stephanie, Caylee, and little Levi

Continued progress...

Hi everyone,

I hope you all had a great weekend. Ours was busy, but fun. I took Caylee down to Steph's parents' house on Thursday night, then came back up here and frantically packed for the weekend. On Friday, I rode the bike down to Indy, and after a minor spark plug issue and a stop at Kokomo Harley-Davidson, I made it down to the hospital to see Steph and Levi. And I was in for a surprise - Levi was WALKING on his own! Not just in the room, but up and down the hallways. He had taken a few steps for Steph on Thursday, but on Friday everything must have clicked for him again and he was all over the place. He knew he was being a big guy, and was pretty proud of himself as he cruised up and down the halls. He even made a stop in the toy room to play with another little patient. It was great to spend the night with him; he was in a very playful and happy mood, and enjoyed the attention Steph and I showered on him.


On Saturday, my mom came up to the hospital to watch Levi so that Steph and I could escape... We hopped on the bike and rode to Marion to join our chapter (and all the other Indiana chapters) at our CMA Indiana State Rally. We had an awesome ride, and the rally was incredible as usual. We met several new people and got to hang out with some great friends that we don't get to see very often. Everyone we talked to asked about Levi, and we loved filling them in on how well he was doing with his treatments. We enjoyed the much-needed fun, fellowship, and night away; it was hard to leave this morning after our church service.

Levi and his grandma were doing well when we got back to the hospital. I think Levi kept her busy, but I know mom loved her time with him. She perfected the intricate art of chasing a toddler with an IV pole; it sounds easy, but it doesn't take much for little legs to get tangled in the IV tubing! I rode back up here to Warsaw this afternoon, and Steph's parents met me here with Caylee. She was very happy to see me, and after a quiet dinner and a Tom & Jerry DVD, I think bedtime will be arriving shortly.

The doctors are pleased at Levi's progress, and we love having our little boy back. He will be finished with his second round of chemo early Tuesday morning; then it's back to the "lets watch his counts drop then wait for them to come back up" game. However, we are still riding high and praising God for Levi's test results from last week. I think we will be a little less apprehensive this recovery phase because we know he is responding to treatment. It will be harder to keep him in the room now that he's mobile, but we will take an energetic, cooped-up, stir-crazy toddler over a sick little boy who couldn't even lift his head up any day.

Thank you all for your continued love, support, prayer, and encouragement. For all of you CMA readers out there, it was great to see you all this weekend. We love you all.

Michael, Stephanie, Caylee, and little Levi

Round 1 test results...

Hi everyone,

I don't have much time for a lengthy update here, but I did want to pass along some results from Levi's test results...

Steph talked to the doctor yesterday, and he said that Levi's bone marrow and spinal fluid both came back CLEAR! They did not find any leukemia in the samples. Additionally, they performed an "MDR" test (I honestly have no idea what that stands for) which is a much more detailed and precise test. It too came back NEGATIVE! This test really is the important one, as they will repeat it after each round. The results from this test will determine the action plan throughout his remaining course of treatment.

This very welcome news means that the chemo treatments Levi is undergoing appear to be doing the trick! It looks like the leukemia he has is chemo-sensitive; if future tests are similar, he may not need a bone marrow transplant, which is a huge praise!

So, since we always make the doctors sum things up for us, the statement we got is that this is the best news we could get right now. We are thanking you for your persistent and faithful prayer, and we are thanking God for His faithfulness in answering our prayer. We are giving Him the glory for the way Levi's treatments are going and his visible improvement over the past several weeks.

We love you all,
Michael, Stephanie, Caylee, and little Levi

Underway...

Hi everyone,

As I am sure you've already guessed, Steph and Levi have now moved out and have found a nice place on their own in Carmel. It's in a nice neighborhood, but it's a little small and the rent is outrageous. The picture above is from Levi's moving-in day...

Actually, yesterday was pretty tough for Stephanie and me, but Levi, as usual, did very well. We got to the hospital around 10am, and they got him right in. After some consults and initial exams from the doctor, we got our old room (410) back. Stephanie was relieved that she got a room with an outside view; I think there may have been some interesting conversations if they put her in another room. But, they're pretty good to us there, so we didn't have too much to worry about. It helps to have an incredibly adorable little boy that the nurses fight over...

Levi had his bone marrow test and spinal tap around lunch time. I went out during the procedure and got some groceries and take-out Chinese for lunch, for which Levi was very appreciative after he woke up, as he hadn't eaten since 8pm Sunday night. He was a little cranky when he woke up, but it didn't take long for him to want to be up and active. We had a good afternoon together and were even able to take a little nap before I had to leave a little later on.

Caylee and I made it home early enough to get in some swingset time before bed. Today was a big day for her - it was her first day of preschool! She didn't wake up too thrilled about it, but her demeanor changed once she got in her classroom and saw all of her new friends. She was pretty excited when I picked her up, so I am hoping that we won't have much of an issue with her not wanting to go. I think she'll really do well there.

Steph realized pretty quickly today that it is much different being cooped up in a hospital with a little guy who feels good and is mobile again. She sent me these pictures of him walking around his hospital room with his IV pole while he's getting his chemo treatments. It was heartwarming to see his smile and efforts to figure out the hospital room door, but I have to admit that these pictures brought tears for me pretty quickly. I am not really sure why, but I think they were partly because I hate to see him hooked up like that while I know how much he'd love to be playing outside and enjoying the summer days. And partly, or perhaps mostly, they were tears of pride for my little tough guy. There's been many times in my life when I've felt tough; like when I got my first car (and subsequent speeding ticket), shot my first deer, got my motorcycle endorsement and first bike - you know, the times when we as guys feel tough and just a little bit invincible. But my son has redefined for me what a tough guy is. It's not about image, looking cool, or impressing others. It's about rising above the situation you find yourself in and being extra-ordinary. He's a true tough guy when I see him curled up in his crib in the glow of his monitor lights, ignoring the IV cables draped over the crib rails and snaking under his shirt while sleeping peacefully without complaining; or when he tries to help the nurses flush his central line and draw labs in the morning; or when he tries everything he can think of to make you smile and laugh while he's playing on the hospital day bed with you; and when he laughs and reaches for you when you walk in his room even though the treatment he's undergoing would floor many adults. My son is a true tough guy, and I am a very proud daddy.

Well, time to head to bed; it's been a long last couple of days. We should know the results of his bone marrow tests tomorrow sometime. We are really hoping and praying that it comes back clean. The results will give us some insight into what the rest of his treatment may look like, including whether or not we will be pursuing a bone marrow or cord blood transplant. So, of course, we will be letting you know what we hear.

Thank you all for your continued prayer; we are glad this second round is underway, and are trusting God to guide us through the next few weeks of treatment and recovery.

-Michael, Stephanie, Caylee, and little Levi

Bittersweet Sunday night...

Sorry - it's been a few days since our last post. Things have been a blur here, but a happy, joyful blur. We have thoroughly enjoyed our week together as a family, and God truly blessed us with some awesome weather, some fun playtime, and a couple of great visits from family. Steph's parents were able to come up last weekend and see Levi, and my parents, sister, and little brother were able to come up this weekend to see him. And, to top it all off, Steph and I were able to sneak out of the house for a date night each time!


I think it was good for everyone to see Levi doing so well. He loved the visits, and just soaked up all the love and attention. Of course, Caylee enjoyed it too; she had a good week, we were able to finish her swingset and she got her first bicycle! Levi loved the swingset, and spent his days cruising around the house, terrorizing the cat, and picking on his big sister. We had our family pictures taken on Saturday (thanks Cliff!), so I will try to post a few of them on here for you later this week. I know I've already said this, but what a great week!

I also wanted to give you an update on Levi's counts. The home healthcare nurse came out on Thursday to draw blood, and the doctor called us Friday with the results. His white blood cell, platelets, and hemoglobin counts had all risen and were in the normal range. The big jump was his ANC - it went from 836 on Monday to over 3000! His little body must have been hard at work; I am convinced that long restful nights at home in his own bed just did wonders for him. Not to mention that he was so happy and active during the days!

As I am sure you can guess, we are sad to see the week wrap up. It is bittersweet; on one hand, we are not looking forward to splitting up again for another month. It's such a long time to be apart, and it does place a strain on our family. But the good side of it is that Levi has successfully come through his first round of chemo, and is getting ready to launch into the next one. One down, a few more to go; let's get started... God got us through the first one, so I know that He will be there walking with us through this one.

The gameplan for tomorrow is that Stephanie, Levi, and I are heading down to Riley first thing in the morning to move Levi back into his "apartment". They will perform a bone marrow test and a spinal tap around lunchtime, then he will likely start his chemo tomorrow night. There are some nerves in this for us; we are praying that his bone marrow comes back clean. That would be a great sign - it would indicate that his leukemia seems to be chemo-sensitive and that the first round was effective.

Please be in prayer for little Levi and Steph as they re-adjust to life in the hospital after a week at home. Steph is not looking forward to the stay, and with Levi feeling so much better and with him being considerable more active than when his treatments first started, it is going to be significantly harder to keep him entertained and happy in the room. Finally, please pray for good test results.

It is hard, at the outset of this next round, not to feel a little like this thing is going to last forever. We know we have several months to go on this journey, and it can be a little daunting looking at it from this end. Of course, we know that this is not true - just a feeling brought about by a little anxiety, a dash of occasional doubt, and a reluctance to realize the end of our break together. We can be encouraged, though, in knowing that everything in life has its season, and this too will pass. I love the passage in Ecclesiastes that talks about the seasons of life. Everything has its time, and Levi's battle is no exception.


Ecclesiastes 3:1-12
1 There is a time for everything,
and a season for every activity under the heavens:
2 a time to be born and a time to die,
a time to plant and a time to uproot,
3 a time to kill and a time to heal,
a time to tear down and a time to build,
4 a time to weep and a time to laugh,
a time to mourn and a time to dance,
5 a time to scatter stones and a time to gather them,
a time to embrace and a time to refrain from embracing,
6 a time to search and a time to give up,
a time to keep and a time to throw away,
7 a time to tear and a time to mend,
a time to be silent and a time to speak,
8 a time to love and a time to hate,
a time for war and a time for peace.

9 What do workers gain from their toil? 10 I have seen the burden God has laid on the human race. 11 He has made everything beautiful in its time. He has also set eternity in the human heart; yet no one can fathom what God has done from beginning to end. 12 I know that there is nothing better for people than to be happy and to do good while they live.

We love you all. Thank you for your continued prayers, support, and encouragement. I will keep you updated on how things go tomorrow!

Michael, Stephanie, Caylee, and little Levi

Almost feels normal...

Well, tonight we have some good news and some good news.


The first good news is about Levi's counts. We got a call from the doctor this morning with the results from Levi's blood test yesterday. He is maintaining his platelets and hemoglobin levels, which is pretty good considering many patients need blood or platelet transfusions while they're on their "breaks" in between rounds. His white blood cell count is continuing to rise, and it is getting pretty close to the normal range. Finally, his ANC finally hit the jump we were waiting for. When he left the hospital last Friday, his count was 136. His ANC count yesterday was 836. That's a huge improvement, and actually takes him out of the neutropenic precaution range. We are still going to avoid public places and try to keep him from playing in the mud, but I think I can probably stop freaking out so much every time someone sniffles. The faint aroma of Germ-X hand sanitizer will continue to linger around this house for quite a while.

The next piece of good news is that we get to keep him here until Monday. Originally, there was a chance that we would have to take him back to Riley tomorrow to start his second round, but the doctor wants to do a bone marrow test before his second round starts, and he feels that giving him time to fully recover will give us more accurate results. Sounds great to us - this means that we get to spend the rest of the week AND the weekend together! The home healthcare nurse is coming back out on Thursday to do another blood draw, but other than that he's pretty much just living the normal little boy life for now. So, we have big plans to do - well, nothing really, just love on our kids and try to rest up before kicking off Act II. I do think I am on the hook to finish the kids' swing set, and I probably should mow sometime, but other than that it is going to be a nice time together.

Levi is doing very well here at home. His appetite is continuing to grow, and he's now eating more than Caylee. He's playing hard, and even took a few steps for us tonight. He seemed excited at his accomplishment, so I expect many more to follow. His smile is infectious, his demeanor uplifted, and his level of comfort palpable. Caylee is enjoying having her bubby home; everything seems almost normal at times while they are chatting back and forth in that language only they know and arguing over who gets to play with what toys.

Well, they are both sound asleep in bed now, so time to pick out a movie and enjoy some quiet time with my beautiful wife. As always, thank you for your prayers, support, and encouragement. They are felt and very much appreciated. Thank you also for the meals that have been brought by, it is amazing how much easier that makes our evenings. We are surrounded by a great group of family and friends, and you'll never know how much we truly love and appreciate you all. We will continue to keep you posted on our little buddy!

God bless,
Michael, Stephanie, Caylee, and little Levi

A welcome intermission...

I have come to realize, as have all parents with sick children, that the long periods of gray on these journeys can be completely eclipsed by brief moments of brilliance. The past two days have been brilliant.


As I'm sure you've already guessed, we have Levi at home. He is currently sleeping soundly in his own bed, with his own sheets, his own blankets, in his own little room properly decorated as a young boy's should. Yesterday morning I headed down to Indianapolis to pick Levi and Stephanie up at the hospital. Levi's fevers had gone away, and his counts were up high enough that the doctor felt comfortable letting him go home to rest and recuperate. He didn't have to tell Stephanie twice; I am pretty sure she started packing as soon as he walked out the door.


I got there around 10 am, and Levi was very awake and very happy to see me. I gave him some love and we talked about the big trucks on the highway outside his window for a few minutes, then I tracked down a red Riley wagon and started making trips down to the van. It took four trips to get everything loaded; he had been in the hospital for exactly one month, and apparently that's long enough to accumulate quite a bit. I got a few odd looks from the people in the waiting room as I trecked through, but I think most people are smart enough to not ask too many questions in situations like that.


Levi was very excited to get out of the hospital. He wasn't sure that the car seat was the place he wanted to be, though, which made the drive back up to Warsaw a little more interesting. His happiness in being home was evident, and he immediately picked up where he left off - yelling at the cat as she ran by after we carried him in the front door. I brought Caylee home from daycare later in the afternoon. I hadn't told her that mommy and bubby were home; she wanted to go to the hospital to visit him, and I told her we would see him but had to go home first. She didn't like that, but her countenance immediately changed when she walked in the house and saw mommy and bubby relaxing in the recliner. It was heartwarming to hear her shout "Mommy's home! Bubby's home!" as she raced to hug them.

She and Levi have been making up for lost time. They are playing hard, and it didn't take long for them to start arguing just like any little sister / brother duo. There are times that Stephanie and I find ourselves just sitting back on the couch with a smile on our faces while we just watch, soaking in the moments. Levi is eating like a champ - he even polished off two pieces of pizza and some cheesy bread last night for dinner. He slept for almost 11 hours, waking for only a minute or two when we gave him his midnight meds. He is crawling everywhere, and is cruising effortlessly around the furniture. I predict he will start walking again in the next day or so.

We are not sure how long we'll have him at home. We have a home healthcare nurse coming to the house on Monday to do a blood draw. It really depends on what his counts are and if he's recovered enough to begin his second round. I think the earliest they may want him back is Wednesday, so we at least know we have a couple of days together. We aren't able to take him to church tomorrow, so we're just looking forward to another day of letting the kids play and being filled with the joy of being a complete family again.

Thank you all for your prayers; I know a great number of you were praying specifically that his fevers would go away and his counts would come up so he could come home. For that I thank you; God answers prayers, and He has given us a chance to relax, regroup, and refocus. It will be hard to take Stephanie and Levi back in a few days, but we're not concerning ourselves with that just yet.

We love you all, and hope you have a great weekend. Don't miss any opportunities to love on your kids - they truly are gifts from God!

- Michael, Stephanie, Caylee, and little Levi

Cautiously but anxiously anticipating...

Hi everybody,

Hope you were able to get outside today, it was the first day in a quite awhile that it was actually a little cooler and breezy. A very welcome break from the heat and humidity we've had lately. And how are Caylee and I celebrating the nice evening? Well - we're already in bed. Both of us are exhausted, so after enjoying dinner brought to us by some great friends and taking in a couple of episodes of Spongebob, we decided it was time to call it a day.

Steph and Levi are hanging in there. Yesterday, Levi's ANC count finally went from 0 to 44. Today it rose even higher to 96. This was awesome news. His other counts continue to rise, and he continues to regain strength. He is taking laps around his crib while holding on to the rail, and today took a couple of steps for Steph. I think Steph was finally able to convice the phyical therapists to quit coming by, as Levi does more when playing with her than he does when they try to mess with him. He did have one fever yesterday, which the doctor wasn't thrilled to see, but I think today he was keeping the temp down. I know the doctor wants to see the fevers go away before he lets Levi come home, so please be in prayer that they stay away.

The specialist did mention to Steph that she thought there may be a chance they could come home on Friday as long as Levi's counts continue to rise and he stops getting fevers. Of course, we know the dangers of getting our hopes up, but it is really, really hard not to at this point. Steph desperately needs a break, and it would do Levi wonders to get some good nights of uninterrupted sleep in his own bed. A chance to recharge as a family would go a long way in getting us ready to tackle round two. So, please also be in prayer that this visit home will be possible.

This last weekend we asked the doctor what the "rules" were if Levi was able to come home. It sounds like he will be under pretty much the same restrictions here at home as he is in the hospital. We will only be able to have a limited number of visitors, no playing outside in the dirt, no playgrounds, stores, church, or daycare, and stay away from anyone who is sick. So we probably won't be very social when they come home, but I'm sure you'll understand. I can't wait to tuck both of my kids in at night and sneak away for a date night with my beautiful wife. A gift given to us by a couple of our friends came with this condition, so I will make sure it happens. And maybe, just maybe, there will be a motorcycle ride involved. But we'll have to wait and see.

So that's the latest on this end. Like I mentioned above, please pray that Levi's fevers will dissapear entirely and that they will be able to come home soon.

In closing, I wanted to share a verse with you that one of our friends posted on Facebook as a prayer for all her friends; it really touched me, so tonight I pray this for all of you.

Romans 15:13
May the God of hope fill you with all joy and peace as you trust in Him, so that you may overflow with hope by the power of the Holy Spirit.

God bless,
Michael, Stephanie, Caylee, and little Levi

Happy August!

Or is it "Merry August"?? Guess I am not really sure what the appropriate salutation is for ushering in a new month. Regardless, I hope this new month brings you and your family joy.


I am also hoping, patiently (sort of), that we can usher in the new month with a trip home! We talked to the doctor this morning, and he was happy to hear that Levi's fevers had lessened in severity and frequency last night and today. His counts are coming up (although ANC is still 0); his platelets are up in the normal range, his white blood cell counts had a good jump, and his monocytes are going crazy. For those of you out there who have no idea what a monocyte is, don't be alarmed; they are good and signal recovery.



So the doctor is still hopeful that Levi will get to come home this week. He decreased his morphine dose a little more, and will probably take Levi off of more of his antibiotics tomorrow. Levi has been very active this weekend, and seems to be getting some strength back in his legs. He loves to stand on the day bed and watch out the window, and, as you can see in this picture, he likes to maintain a healthy level of mischievousness, which we love to see.

He is getting a little stir crazy in here, but who can blame him. He hasn't left the room in over four weeks now. He points at the door and wants us to open it, and I am pretty sure he even said "outside" yesterday. We are running out of entertainment options for him pretty quickly, so we are really hoping for that week break at home before his second round starts. I have no idea what we'll do once he is walking again. It has been a good weekend with him though, and I am glad I was able to work from here today and stretch my visit out a little.

So, we watch the numbers and wait. It's all about the numbers right now, and we're hoping to see that big goose egg in the ANC category start to rise soon. There are so many calculations and figures that they watch, and I do appreciate their attempts to explain them, but most of it is lost on me. As many of you know, I am not very good with details; too many details tend to stress me out. I get confused pretty quickly, especially when the numbers and figures are flying at me. There are a couple of verses in Proverbs that I really, really appreciate.


Proverbs 3:5-6

5 Trust in the LORD with all your heart
and lean not on your own understanding;
6 in all your ways submit to him,
and he will make your paths straight

I take encouragement in the fact that it is not up to me to understand all of this. I am just trusting that God is in control of even the smallest details, and He will guide our paths through this.

Love you all,
Michael, Stephanie, Caylee, and little Levi