Monday, December 26, 2011

The most wonderful time of the year...

I hope everyone had a great Christmas! A couple of months ago I made the statement that all I wanted for Christmas this year was to have my little boy home and my family all together. And I’m happy to report that I got exactly what I wanted. The chrome for my Harley and all the great food we enjoyed were just icing on the cake.

What an awesome Christmas celebration we’ve had this year. On Friday evening we headed out for another visit with Santa in Pierceton with the Bennetts. We stood in line for about an hour to submit our Christmas requests to him and Mrs. Claus, but once our time in queue was finally up and it was our kids’ turn to sit on his lap, Caylee immediately turned ultra-shy and hid behind me, and Levi stared at him with a steely look of disdain. Needless to say, we didn’t talk to him much, and slinked out of the building after grabbing our juice and coloring books with our heads down, once again the proud parents of the kids who hate Santa.

Fortunately, the conversation they had with Santa down in Indy a couple weeks ago (not to mention the peanut butter chocolate chip cookies and vanilla soy milk the kids left out for him on Christmas Eve) must have done the trick, because he sure left them quite a payload of Christmas presents. Caylee got her blue dolphin and Jessie doll (from Toy Story), as well as several other presents including puzzles, dolls, and a few dozen tubes of chapstick. Levi also made out like a bandit with his haul including, among other things, a fire truck, Black & Decker toy tool kit and workbench, and a couple good movies. Both of our kids got more presents than what they needed, and a special thanks goes out to all of those who helped make our Christmas an abundant one.

We didn’t do a whole lot yesterday, and we loved every minute of it. Caylee woke us up around 8:30, and we all had to go in and rouse Levi around 9 so the morning madness could begin. We read the Christmas story out of Caylee’s children’s Bible, then opened our gifts. After a big brunch of Mickey Mouse and smiley-face pancakes, we tried to take naps, but the kids must have been too amped up on Christmas candy and gift-induced hysteria to sleep much longer than 20 minutes each. All in all it was a great day of playing with and loving on our precious little ones; the time together as a family was very special.

We were able to head down to Steph’s parents’ house today to celebrate Christmas with her side of the family. We had a special time there. All the kids played very well together, and it was even nice enough outside that we got a little sunshine and fresh air, not to mention a wide open space for the kids to release some pent-up energy. We had a great lunch and dinner, although the two meals really weren’t discernible from each other, as it felt like we ate pretty much the whole time we were there. Everything was great, and the kids loved playing with their toys once we got home.

We are looking forward to the rest of the week together. I don’t have to work this week, so we have some fun little events planned, including a trip to a Fort Wayne Komets game and maybe even some ice skating (which means that I very well may be writing my next post with a cast on). We are heading down to southern Indiana later this week to celebrate Christmas with my family later this week; looking forward to hanging out with them for a couple of days.

As for an update on Levi… Well, we haven’t heard the final results from his MRD test that they ran on the bone marrow they took last week, but we did get the preliminary results late last week, and they came back clean. We are taking our encouragement in that, and trusting that the MRD test will also come back negative. We are not sure at this point when we will need to take him back down to the hospital to start Round V, but I am guessing that we will hear something this week. I promise to let you know as soon as, or at least pretty soon after, we find something out.

Well, the kids are in bed, so it’s time to find a movie on Netflix and hang out with my beautiful wife for a little while. I hope you all enjoyed your Christmas with your families, I know we did. Something that has been weighing heavy on my mind lately - please keep the families in your prayers who weren’t able to wake to a warm house on Christmas morning or a tree full of presents. Many families out there have to forego the exchanging of gifts to make sure there is enough food on the table. There are so many families in need around us; as we move toward the New Year, please pray and be thinking about the ways you can reach out to those who are less fortunate. God has blessed us with so much abundance, more than we will ever need. I pray that He breaks my heart for what breaks His this next year.

Finally, I just wanted to say thanks for all the comments we get on our blog. They are very special to us, and we read them all at least a few times. We don't always get a chance to respond, but we do want you to know that they mean a lot. You have no idea how much the encouragement you provide fuels our motivation and increases our energy to keep fighting this fight.

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

Tuesday, December 20, 2011

A little more direction...

Hi everybody,

I am having trouble believing that there are only 5 more days until Christmas. I think we have a pretty good handle on our Christmas shopping; only a few more little items to pick up and we should be done. For the first time since Steph and I have been married, we are celebrating at home just with our little family. After all the craziness this year, we decided it would be a good time to hole up in our house, enjoy our little ones, and have our own Christmas celebration. We’re still planning on traveling to see family, but are looking forward to Caylee and Levi helping us start our own little traditions. This last week has been a good one. The kids are doing very well, although the colder weather and rain we’ve had lately tends to make us all a little stir-crazy from time to time. I was able to head south for a weekend hunting trip with Steph’s dad and brother-in-law last weekend; it was a great break and time out in the woods. Steph’s mom came up to spend some time with her and the kids.

As you know, the home healthcare nurse came out yesterday to draw Levi’s labs. We got the results yesterday afternoon, and everything looked good. His ANC had come up quite a bit. It wasn’t up to the four or five thousand that the doctor originally wanted to reach before performing a bone marrow biopsy, but we talked to his office yesterday and they informed us that it had come up enough and we had waited long enough to go ahead and perform the test. So, this morning we loaded up the van and the two kids and headed south to Indianapolis.

After we got there, everything went pretty smooth (thankfully). But the trip down was rough. The kids were good as gold as they snuggled in their car seats and watched a movie. Steph and I, however, each reached our breaking points somewhere south of Kokomo. There are the obvious hard moments in the fight against cancer, the ones that come to mind whenever you start to reflect on what you’ve endured so far in the journey include learning the diagnosis, relying on family and friends to make ends meet, logging thousands of miles on the road… But sometimes the little things that get overlooked can be just as damaging, including the eroding effect that the constant stress and strain can have on relationships. Stephanie is the best friend and closest ally I have, and I am for her as well. For any of you out there, who may be starting a journey like ours, make sure you guard your relationships. Diseases like this don’t just attack physically, they attack emotionally as well. We are both looking for a chance to get away together at some point; just hope that opportunity can come soon.

Once we got there and spent the obligatory ten minutes staring at the aquarium in the waiting room and going through the weighing and measurement motions, we took Levi back to the treatment room where they put him under conscious sedation to perform the bone marrow biopsy. He fought it a little going to sleep, but they were able to get everything they needed and he slept soundly for a half hour or so after the procedure was finished. Caylee was great – she hung out in the playroom and painted a couple of birdhouse Christmas tree ornaments. After everything was all done, the kids walked out of the clinic with a few toys, some crackers and cookies, and a whole lot of energy. We stopped at Red Robin to grab something to eat on the way home, and let’s just say I tipped the waitress pretty well for all the hassle and launched kiddie cups she endured during our meal.

Before Levi’s bone marrow biopsy was started, the doctor informed us that he had decided that Levi should undergo the fifth round of chemo. Despite the fact that we knew this was an option all along, it did bring to an abrupt end the “everything is normal” game we had been playing for the past several weeks. We weren’t excited to hear this news, but we’ll accept it as the direction we need to continue to move towards the victory in Levi’s battle. We are hoping to hear back some preliminary results from Levi’s tests tomorrow, and potentially we could hear the results from the MRD test by the end of the week. We shouldn’t have to start the fifth round until after the New Year, which means that we’ll get to spend Christmas and my week off of work next week as a family.

I have to admit, getting the troops all in line to start this again right now is overwhelming. Over the course of this journey, I have had several friends remind me that God will not give us more than we can handle. But, to be honest, I have yet to find that promise in the Bible. In 1 Corinthians we are told that God will not let us be tempted beyond what we can bear, but that's a different topic. Now, I am not going to say that it’s not in there; usually, once I make a declarative statement like that, I am shown my error rather quickly. But if you think about it, if we never have more than we can handle, then why do we need God? What I have found is this; that often we often face more than we can handle - on our own. This requires us to rely on God to get us through whatever it is we’re facing. I found this in 2 Corinthians 1:8-11, where Paul talks about enduring hardships and pressure far beyond what they were able to bear. But in verse 9, he says that “this happened that we might not rely on ourselves, but on God.” Then, the reassurance that “on Him we have set our hope that He will continue to deliver us, as you help us by your prayers.” So, with this next portion of Levi’s battle, we will set our hope on Him, and continue to rely on you for the help you provide with your prayers. Thank you for continuing to lift our little one up and for your support for our family.

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

Sunday, December 11, 2011

Catching up...

Ok, so when my grandma sends me an email and lets me know it’s time for an update, I figure I should probably get my act together and let you all know what’s going on…

It has been a pretty busy last couple of weeks. Let’s start with Thanksgiving first. We had an awesome time with family – on Thanksgiving day we headed down to Kokomo to celebrate with Steph’s family. After consuming way too much turkey, sweet potatoes, and oyster dressing (I did anyway, Steph chose the pan without oysters), we headed down to my parent’s house for the weekend. I was able to squeeze in a little deer hunting with my brothers, and our family’s first experiment with smoking a turkey was a huge success. The time together with our families was much needed; Levi soaked up the attention, and the kids logged plenty of cousin-roughhousing time.

The following Monday I headed down to Austin, TX for a week and a half business trip. It was a busy trip, I tried to squeeze in about 3 weeks of work while I was there. Steph had her hands full here at home, and was appreciative of the help she received from her mom and dad, who stepped up and filled the role of co-kid wranglers while I was away. While down there, I managed to miss the first significant snow fall of the year, a sure sign that winter is right around the corner. It is hard to believe that the year is almost over.

On Friday, we all headed to Indy to attend Gary Brackett’s Christmas party. Gary Brackett, a linebacker for the Colts, has personal experience with leukemia, as he lost a younger brother to the disease a few years ago. There were a lot of kids there – we guesstimated over a hundred. Levi and Caylee queued up to talk to Santa (although Levi wasn’t a huge fan), get an autographed football, then grab some pizza. We met some friends there we hadn’t seen in years – someone that Steph used to work with when we lived in Greencastle. It was great to see them, and congratulations to their little boy who just finished his last infusion after three years of chemo treatments. All the kids there received a very generous amount of Christmas presents – a big thank you goes out to Gary and all the volunteers that put on the event for families like us. It was a moving experience to see all the little ones playing and having fun together despite the struggles they were facing.

So – you’re probably wondering what the latest is on little Levi’s treatment… Well, he has had a couple of scheduled bone marrow tests, but they keep getting postponed due to his ANC count. The doctor wants his levels to be back up to normal before they test his bone marrow in order for the results to be as accurate as possible. And it’s not uncommon for it to take a while for the ANC count to completely rebuild. It has actually gone down in the past couple of weeks, but the doctor is not concerned and said the count can fluctuate for quite some time before everything returns to normal. His other counts are fine. As of right now, we home healthcare will come out on the 19th to draw blood and check where things are, and then we’ll see if the counts are up to where they need to be to schedule his bone marrow test. If not, we’ll continue to wait. It’s a little unnerving to keep waiting while not knowing what the next steps will be, but we just continue to trust God; He’s brought us this far, and we know that He’ll see us through whatever comes next. The doctor is still considering the option of cancelling Levi’s 5th round, but that will of course depend on what his tests show.

We are guessing that nothing will really happen until after Christmas. So we are looking forward to hanging out as a family over the next couple of weeks. It has been a joy to be whole again; the kids are growing up so fast, and Levi is even starting to sprout a little hair fuzz on the top of his head. He is doing so well here at home – laughing, playing, eating, and sleeping just like a healthy little child should be. We thank you for your continued prayers for him and for our family; please remember the families of sick children this Christmas season. It can be a tough time of year to balance the stress of a little one fighting an illness, the travel and expectations that come along with the season’s traditions, and the financial hardships that can strain relationships and mar family time together. May the Peace that only God can give keep these families together.

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

Tuesday, November 22, 2011

Giving thanks...

Time slips by so quickly as things seem normal.

We have loved being home. I know I say this every time Levi has a visit home, but it’s true. Our joy is complete when we are together as a family. There’s not really a whole lot of “new” news to report on, other than the fact that our little Levi loves to be home and is playing as hard as he can. He’s enjoying being able to get out of the house every once in awhile, and was even able to cheer on his Fort Wayne Komets last Friday night during an evening out with our great friends the Bennetts. We don't really know yet what the plan moving forward will be; as of right now, we are still planning on taking Levi down to Riley next Tuesday for his bone marrow tests. From there, the doctor should be able to advise us on how we proceed.

On Sunday, we were able to head south to Kokomo to visit Steph’s grandma and celebrate Thanksgiving with her. We had a good meal and a great time seeing her; it has been awhile since she’s been able to see Levi in person, but she’s been one of his strongest supporters since day one. We love you grandma, and it was so nice to spend the day with you. We are happy that it’s a short work week; later this week we will head down to celebrate Thanksgiving with Steph’s family, then down to my family after that. We are all looking forward to the Thanksgiving holiday. It has always been my favorite. In my mind, it seems to be the last pure holiday. I know the crazy shopping commences the day after, and some families seem to jump right over it to get to the craziness of Christmas quicker, but maybe that’s why I like it so much. The day is what it needs to be. It’s a day set aside to give thanks for who you are, who you’re with, what you have, and where you’re going. It’s about family, community, and reflection. Add in a great meal and spice it with a little football, and there you have it. The perfect holiday. And I thank God that I can spend it with my family complete.

I have so much to be thankful for. I am blessed beyond all measure. Most of all, I am thankful for the people in my life.

I am thankful for my daughter. She is the strongest preschooler I have ever known. She meets every day head on with a tenacity and love for life that I wish I could share some days. She will often ask in the mornings what we are going to do with her that day. Sometimes, I have to tell her that she is going to stay with someone that day, and she steels herself for a flurry of packing and traveling. Other times I get to tell her that she can stay home with mommy and daddy that day. This always brings a welcome smile to her face. I love her sincere concern for her brother, and her prayers in which he is always mentioned. I am thankful for the innocent sunshine she pours into my life.

I am thankful for my little hero. The battle he is waging is a fight for his young life, yet he is concerned only with playing with his sister and trying to make mommy and daddy smile. He has taught me what it means to be a father and fight from my knees. He has taught me that if I truly love something, I have to let go of it and give it to God. He has taught me to never take anything for granted and to soak in every moment, every smile, every laugh, every tear, because you can never go back. Levi has pointed my life back in a direction that matters, and I am thankful for the opportunity to be his father and to help him fight his battle.

I am thankful for my beautiful bride. There were over a hundred mornings this year where she woke from fitful sleep to a dark hospital room lit only by the strange glow of IV lights and monitors instead of to the comfort of her own bed. On most of these mornings, she woke up without me there. Each time, she met the day with determination, because her sole focus for that day lay in a crib a few feet from where she slept. She has been a relentless ally in Levi’s battle, providing him the tender love, nurturing, and a caring mommy shoulder on the days when he didn’t feel well enough to even lift his head. I love my wife, and I love her love for my children. I am thankful to have her on the front lines in the trenches to fight alongside my son.

I am thankful for my family. Stephanie and I are very blessed in that both sets of parents are still with us, and that both families are complete. The marriages of our parents light our paths and show us what it means to love each other regardless of the circumstances we find ourselves in. They have offered tearful encouragement when I’ve been so weak and overcome that I can’t pick myself up off the floor, and they shared the joy and praised God alongside us when we experience victories. Our siblings are never further than a phone call away, and have been our emotional stronghold through the past several months. Levi’s network of grandparents, aunts, uncles, and cousins love him like their own, and are some of the fiercest prayer warriors I have ever met.

Finally, I am thankful for you, our friends. The ranks of troops in Levi’s battles are filled with people from our past, present, and future. Some we’ve known for years, others we may never meet. But we count all who have offered our son up in prayer as dear friends, and I hope that here in this life or someday in heaven to be able to greet each of you face to face and thank you. You have provided us with food, money, fuel cards, help at home, cards, encouraging notes, and so much more. Thank you for continuing to fight alongside us in Levi’s battle.

We love you all. Please pause a moment and reflect on Thursday; offer a prayer of thanks for where you are, and whether you’re in the midst of the flurry of meal preparation, the busy holiday roadways, or the excitement of the games on TV, it will become clear to you what really matters.

Happy Thanksgiving.

Michael, Stephanie, Caylee, and little Levi

Monday, November 14, 2011

What a weekend...

Wow, what a weekend. It’s kind of bad when you feel like you need the first couple of week nights to catch up on rest from the weekend.

As most of you know, we had a big weekend, as we packed up the minivan on Wednesday night with suitcases, pillows, dresses, and a little size 2T tuxedo to make the trek south to help my sister and her fiancĂ© set up for and celebrate their wedding. Also, as most of you know, Levi was able to join us for the event! Last Monday the home healthcare nurse came out to draw his labs, and his counts were on their way up. His ANC wasn’t quite up to the minimum 500 level yet, but it was going to make it by the time we left. We spent the night in Seymour on Wednesday night, then the girls headed down to Louisville on Thursday morning. Nate and I kept the boys with us, and headed that way later in the day. We spent the evening decorating the church and rehearsing for Friday’s big event. The kids did really well, and we had high hopes for their involvement in the wedding as little ring bearers and a flower girl.

On Friday the girls were busy all day with decorating the reception hall and running the gauntlet of girly wedding activities. The rest of us were able to meet up with all of our family who were able to make the trip from Kansas. We had a great time catching up with them – it had been far too long since we had seen them. They loved meeting little Levi, and he enjoyed the attention. Later that evening we all exchanged our comfortable street clothes for more wedding-appropriate attire and headed to the church. The wedding was beautiful, and the kids did pretty well. Levi sprinted down the aisle, Xavier headed down with his Uncle Cyrus, and my little Caylee Grace walked down with me holding her hand. I think she may have been just a little nervous with all the eyes on her. It was a late but fun evening, and the kids somehow found their second wind (or maybe it was their fourth or fifth wind) after we got back to the hotel around 12:30 am. After a breakfast and helping the new couple open their presents on Saturday morning, we all headed back and were more than a little envious of Hannah and Rob as they prepared to leave on their honeymoon to Puerto Rico.

It was a great weekend with the family. It was a much needed break, and things almost felt back to normal. We were able to soak in the moments, play with the kids, and catch up with family and friends. The little ones got enough outside playin', go-kart ridin', rough housin', and grandma snugglin' time in to last awhile. The weekend felt whole with our little Levi joining us. I honestly don’t know how I could have gotten through it all being apart from him; he completes our family, and things aren’t the same when he’s not with us. I thank God for His answer to our prayers, and count it a blessing to be able to have all of my family together. Many thanks to all of you as well who prayed fervently for this to be.

So… the plan moving forward…

The home healthcare nurse came out again today to draw Levi’s labs. We got his counts back late in the afternoon, and everything looked good. However, the doctor wants his ANC to be pretty much back to normal before he performs the bone marrow test to make sure the test is as accurate as possible. Levi’s ANC is coming up, but is not to the “normal” level yet. The doctor decided to delay the bone marrow test that was originally slated for tomorrow by a couple of weeks. Now, he won’t get another blood draw until the Monday after Thanksgiving and won’t have to travel down to Riley for his bone marrow test until the next day – which means that Steph and Levi get another couple of weeks at home and we get to all be together for Thanksgiving!

In my last post, I mentioned that there were some big decisions coming up. I didn’t want to share them just yet, since things were very much up in the air. But the decision is this – the doctor is considering possibly cancelling the fifth round of chemo, provided that the tests continue to come back clean. Of course we are very excited about this possibility – and that is what it is at this point, a possibility – but to be honest it does make us a little nervous. We want to make sure that the leukemia has been beaten completely, but on the other hand we don’t want Levi to go through an additional round of chemo (which happens to be the roughest one) if it’s not necessary. We’ve dwelled on this at length, but in the end we’ve come to the realization that it will do no good to worry about this; as with every stage of Levi’s battle, it is out of our hands. So we give this decision to God, and ask that you pray that He would give immense wisdom to the doctors as they examine Levi’s case and the existing research. We will trust Him that the decision they reach will be the right one, and we will support it and do whatever it takes to get Levi through this. We long for the day when Levi’s treatments will be done, and we can place him in bed at night without counting down until the morning when his next round will begin.

Thanks as always for all that you do for my family. We love you all,
Michael, Stephanie, Caylee, and little Levi

Saturday, November 5, 2011

Home again...

Let me paint a picture for you…

The house has been transformed. The remnants of breakfast strewn around the kitchen table resemble a junior high science experiment gone awry. The metallic mound of Hot Wheels in the middle of the living room floor would put any L.A. foggy-morning interstate pileup to shame. The handful of dirty dishes that populated the sink at this time yesterday has somehow multiplied exponentially overnight. And the fingerprint smudges on the bottom third of our television screen makes it feel like I’m watching ESPN through a stranger’s bifocals.

All of these signs point to only one thing… He’s back!!

Yup – you guessed it, Levi is home. Earlier this week, the doctor had hinted around that we may be able to bring Levi home sometime this week, as long as his counts were going up. As of yesterday morning, his ANC was still a fat goose egg, but his other counts were on the rise and were trending up enough that we got the green light to move Levi out of his apartment. I dropped Caylee off at daycare yesterday morning, then rocketed down to Indianapolis in a blue Honda minivan flash. Steph had most of his stuff already packed, so the moving out process was pretty easy. I was able to steer clear of most of the “wow – you have enough stuff?” comments, and besides the random guy in the elevator who kept touching Steph’s memory foam mattress pad in amazement (which he fondly referred to as “space foam”), the morning went pretty smoothly.

After a brief stop at Chick-Fil-A, the Harley-Davidson dealer, and the quilt shop to break up the trip, all of which are conveniently located along the way home, we arrived sometime mid-afternoon. Levi hit the ground running, running room to room exploring. He downed a couple mini-packages of Halloween Skittles from Caylee’s candy stash, planted himself in his bedroom for a while to cook on his little play grill, and chased the cat for good measure. Caylee came home about an hour later, and the two of them immediately started fighting over the John Deere ride-on tractor. What a great feeling to have them together again.

Last night he was acting a little grumpy, but we think it was because he was so exhausted. The past few nights in the hospital hadn’t afforded him much quality sleep, so we put him in bed around 7:30. He only woke up a couple of times for a few minutes each and slept almost 13 hours. The solid sleep must have done the trick, as he was bright-eyed this morning and ready to play hard. We all enjoyed our hectic morning together, but the house is quiet now; Steph headed down to Indianapolis for my little sister’s bachelorette party/shopping trip/overnight thing and took Caylee to her mom and dad’s house to spend the night, as I haven’t been feeling very well lately and wasn’t sure if I could handle both the little ones without some backup. Levi is down for his late-morning nap, and I am trying to decide which mess I am going to tackle first before my college football marathon commences.

I also wanted to let you know that the doctor has said that as long as Levi stays healthy over the next week, he doesn’t see why Levi couldn’t attend my sister’s wedding next weekend. As you know from my last post, this was something I was dearly hoping and praying for, and God once again has answered our prayers! We are very excited that he’ll be able to tag along, and Hannah was even able to find him a little tuxedo at the last minute so he could fill the ringbearer role with his cousin like we had originally planned. I am very thankful that God’s timing is perfect, and moments like this make me sit back and wonder why I ever try to drive things to my own timetable when I know things are out of my control yet under the control of the One in whom we trust. So thank you all for your prayers for this special request.

Please continue to lift little Levi up in your prayers; with his counts still low, he needs to stay away from fevers and sicknesses while here at home. He needs this time to rest in his own bed, eat normal food, and relax with his family. Please also pray for the plan going forward; the doctors are examining some options that we may have for the rest of his course of treatment since he’s doing well. I don’t feel like I should share them just yet, as things are very much up in the air, but just pray for wisdom and discernment for those examining his case and that Levi’s recovery from this last round will be swift and his tests will continue to come back clean.

We love you all, and couldn’t do this without you. Thank you for role you’re playing in Levi’s battle.

Michael, Stephanie, Caylee, and little Levi

Monday, October 31, 2011

Trick or treat...

Happy Halloween!

I have to admit, I was never a huge fan of Halloween until I had kids. Now I love it. It’s fun to see how excited they get over dressing up in their costumes, grabbing their little plastic pumpkin pails, and shamelessly begging candy off of strangers who were kind enough to leave their outdoor lights on. Then, once you’re at the farthest point from home, your little one decides she is too tired to walk, so you lug her on your shoulders, along with her pirate sword, hook, and pumpkin while she taps you persistently on the head to let you know you just passed a house with its lights on too. Once you finally make it back into the relative safety of home, while blatantly ignoring the little ghosts and vampires on the street waiting impatiently to see if you turn your lights on, the battle begins to convince your preschooler that she needs to wait until AFTER dinner to dig into her goodies.

All that being said, I really do like Halloween. Caylee, as you can see from the picture above, was a pirate. She has been telling us for months that she wanted to be a “bad pirate;” I kept telling her that all pirates by definition were inherently bad, but to satisfy her we bought her a hook and eye-patch to complete the outfit. Thankfully tonight she decided as we walked out the door that she was a “nice pirate” and told me that the sword was for hitting the bad ones. I was relieved by her change of heart, but a little worried that we would happen across a helpless toddler dressed as a bad pirate who would be taught the err of his ways by the blade of my daughter’s plastic cutlass. Levi had a little Halloween celebration at the hospital today too, although it was really reverse trick-or-treating. He, along with most of the other little ones on the floor, was confined to his room, so the nurses and techs came to him to give him candy and treats. Now that’s the way to do it, stay in your own place and let the candy come to you! I am sure, though, that he would have loved to stroll up and down the hall in his frog costume and score candy from the nurses and doctors. I kept thinking to myself tonight that next year will be so much fun with both of our little ones trick-or-treating together again. Maybe I will be able to convince them to dress up as the Legions of Doom or some other awesome old school WWF tag team.

Levi is doing well. Late last week he started to run little fevers. Nothing super high, just 99’s, 100’s, and a couple 101’s. But they were enough to convince the doctor that he needed to go on an antibiotic. So, back on the IV he went. He’s been getting doses of antibiotics every eight hours, and the fevers seem to be steadily diminishing. He’s had a couple 99’s over the last day or so, but is down in the 98 range most of the time. We are just praying that he stays healthy and the fevers don’t come back. He received a blood and platelet transfusion last week, and his counts are still bottomed out. We did notice today that his platelets seem to be going up on their own, so that’s a good sign. Usually once that happens, his counts start to recover. We are hoping that maybe, just maybe, his counts will come up a little this week and we can bring him home for another rest.

Steph and Caylee were able to get away on a little mini-vacation this weekend. They headed down to Brown County with Steph’s mom, sister, and little nephew and niece. It sounds like everyone had a good time; there was lots of crafting, trail-walking, and a little shopping thrown in for good measure. My mom stayed with Levi on Friday and Saturday night, which meant that I had a couple of days here at the house by myself. It was very, very quiet here, but I was able to get a lot done. I still have a project list longer than I care to think about, but I got the important things checked off, like clean the house in case Steph and Levi are able to come home and get the bikes ready for the winter (after a little riding on Saturday of course). Levi had a good time with his grandma, and as you can see from the picture apparently thought he needed her glasses to properly watch the cars outside his window. It was a very restful weekend, and I am appreciative of the effort by both of our moms to get us away from the hospital for a little break.

I headed down to the hospital on Sunday to relieve mom and suffer through the Colts game with my little buddy. We had a fun visit together, and later in the afternoon Steph and Caylee came back. We enjoyed a couple hours as a family, dining on cafeteria pizza and pudding and watching the kids chase each other around Levi’s room. We have learned to grasp the opportunities to be together as a family when they come, even if it is just to hang out for a little while in the hospital.

Finally, before I close, I wanted to share two somewhat selfish prayer requests with you. The first is for my little sister’s wedding, which is on the 11th. I am praying and hoping that maybe, just maybe, Levi’s counts will be high enough that he can join us. We haven’t talked to the doctors about it yet, and of course it will depend on how quickly his ANC recovers, but we have a lot of family traveling out for the wedding who haven’t met Levi yet, and I would love to be able to introduce them to our little warrior. Not to mention that it would be great to have Levi there with us as we celebrate Hannah and Rob’s big day. The second is Christmas. I would love, absolutely love, to have all of us together at home for Christmas. I know this is really pushing it, and I am trying to not get my hopes up, but all I want for Christmas this year is to have my family together outside the hospital. My God moves mountains, and I am asking Him to make this a reality. So, along with asking for your continued prayers for Levi’s complete recovery, I ask you to join us in prayer for these two items as well. I know they’re a little selfish, but they really would mean a lot.

Well, that’s it for now. We love you all, and will continue to keep you posted on his Round IV recovery.

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

Tuesday, October 25, 2011

An overdue update...

Wow. A week since I posted last. Guess I have some catching up to do. I do have to admit – I had good intentions of posting the past few days, but each time my plans were thwarted… by sleep. On Sunday, I had every intention to post something while at the hospital, but Levi went down for a nap, so I promptly passed out on the couch/daybed thing. Then Sunday night I wanted to post something, but the demise of my Colts in the Sunday night football debacle must have worn me out, and I passed out on the couch here at home before the end of the game, which wasn’t necessarily a bad thing. Same thing last night too – the football game and the comfort of my own couch got me again. So tonight I determined to give you all an update…

So, to start with the events of last week; on Wednesday night, Levi got his last dose of his fourth round of chemo. We had been told that the “blue juice” (aptly named due to its Smurf blue color and tendency to turn urine and the whites of your eyes a shade of blue) he was getting at the end was notorious for knocking patients down, so we were very thankful that he seemed to emerge from the round with only a case of diaper rash. I had originally planned to leave on Sunday for a business trip to Austin, so I dropped Caylee off with my parents on Wednesday night in preparation for a week away from home. I found out Friday morning that I needed to cancel my trip plans due to some work priorities, so that meant I was able to head down to the hospital Friday night to spend the weekend with Steph and my little buddy.

We had a great weekend together. Levi was extremely active, and was busy taking over the 4th floor peds unit. The nurses pretty much give him the run of their nurse’s station, so he spend his time bumming Twizzlers off of the doctor, sitting on their desk eating popcorn, and making blank copies on their copy machine. It is cute to see him sprint down the hall and just head back there to hang out with them. He’s like their little mascot, and they love to spend time with him. Steph and I were able to sneak out of the hospital for a lunch date on Saturday as his nurse kept an eye on him. On Sunday, Steph’s parents came down to visit and watched him while we snuck out for another lunch date and a trip to the mall to walk around wide-eyed at the lights and sounds of the outside world. We were able to take him outside on a wagon ride a couple of times; he thoroughly enjoyed the sunshine and watching the geese swim around in the pond across the hospital parking lot.

Caylee spent the weekend with my family at Kings Island in Cincinnati. Apparently we have a thrill-seeker on our hands, as she rode every ride her three year old stature allowed. She had a great time, and is still talking about the roller coasters she rode. They brought her back to the hospital on Sunday night completely worn out, but she was still a little chatterbox the whole two hours home.

Levi’s counts stayed up all weekend, but I talked to Steph today and he finally dipped into the neutropenic range today, which means that he is confined once again to his room. He’s not very excited about that, as he’s gone from king of the peds ward to an inmate in room 409. But we are happy to see the drop, as it means that he is getting close to bottoming out. You all know the drill by now, once he’s bottomed out, we wait for the rebound. Once he rebounds, we hope for a break and a trip home for some R&R. Then, it’s time to kick off the fifth and final round!

We are encouraged and thank God for the way Levi is handling his treatment. God’s protection of our little one is apparent. We continue to pray that Levi can stay away from sickness, fevers, and setbacks during this fourth round of the waiting game. Please continue to keep us in your prayers, and thanks as always for the many ways you support our family. We love you all, and will keep you posted. I will make sure it’s not a week before my next update…

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

Monday, October 17, 2011

A few more things...

Hi everyone,

Just a quick update to pass along some info to you all. In my last post, I mentioned that they did a bone marrow aspiration on Levi along with the spinal tap... Apparently, in the controlled chaos of it all, I got my info mixed up. They actually did not perform a bone marrow test, so there are no results to wait for there. Since his last couple of tests came back clean, they did not find it necessary to continue the bone marrow tests before the start of the rounds.

They did perform a spinal tap, during which they drew a sample of his spinal fluid and directly administered a high dose of chemo to knock out any leukemia cells that may be hiding out there. We learned yesterday that his spinal fluid came back clean, so that again is a HUGE PRAISE!

Another thing I failed to mention - Levi has actually grown quite a bit through all of this. He's put on about three pounds since July and is now up to a little over 21.5 lbs. He's also shot up a few centimeters, which is evident in his ability to hang off the door handles in the hallway and open the bathroom door on us...

I talked Steph a little while ago, and the doctor said that Levi can be unhooked from the IV during the day when he's not getting chemo. And if you've ever seen how busy this little boy is, not to mention how fast he is, this is a huge improvement and makes Steph's job ten times easier during the day. So he's now free to run up and down the halls and make his routine flirtatious visits to the nurses station. He finished his high-dose chemo this morning at 2am, and is now on the second drug (the new one) for the next couple of days. He's getting it once a night, and will finish it up on Thursday night around 10pm.

Also, I wanted to let you know that Steph and Levi did move rooms yesterday, so they are in the room now that they will be in for the remainder of this round. This new room is B409. Here is their new mailing address:

Indiana University Health North Hospital
Attn: Levi Whitesell, Room B409
11700 North Meridian Street
Carmel, IN 46032

If you sent something to the old room (B410), don't sweat it. Levi's a pretty popular guy on the floor, and all the nurses know him. He'll get his mail... :)

Finally, I have had a lot of conversations about the "cocky" comment I talked about in my last post. Clearly it struck many of you in the same way it struck Steph and me. So, I wanted to share with you a few verses that jumped out at me on Saturday night as I was turning in my Bible to a bookmarked passage for my devotions. I had highlighted it a long time ago, but it was like God told me to hold on a second and read it again before I resumed flipping pages. I've always liked the passage, and I think I've posted it before, but I don't think I ever really fully appreciated its message until that night.

Hebrews 10:35-39

So do not throw away your confidence; it will be richly rewarded. You need to persevere so that when you have done the will of God, you will receive what he has promised.

“In just a little while,
he who is coming will come
and will not delay.”

“But my righteous one will live by faith.
And I take no pleasure
in the one who shrinks back.”

But we do not belong to those who shrink back and are destroyed, but to those who have faith and are saved.

So there you have it. We are not throwing away our confidence. If anything, it has become stronger. We will not shrink back, because we belong to those who have faith and are saved.

Thank you all for your encouragement and love for us. We couldn't do this without all of you.

Our God moves mountains.
Michael, Stephanie, Caylee, and little Levi

Saturday, October 15, 2011

And so begins Round IV...

The room is quiet, the shades are pulled, Levi's asleep in the crib, Steph just passed out on the daybed, and I have my headphones on... Perfect time for an update.

Round IV is officially underway. We arrived at the hospital yesterday right on time at 10am after dropping Caylee off at Steph's parents house. It was a pretty uneventful morning, both kids did great and we got everything and everyone loaded into the van like clockwork. But it was still pretty tough, and there were more than a few tears that fell between Warsaw and Indy. They got Levi right in to perform his little checkup and draw his labs in the clinic. Everything looked good, so we got ready to head up to the floor. Then we found out that the floor was full, so we had to wait a few minutes for them to get a room ready. Needless to say we didn't get room 410, our familiar stomping grounds. We are in room 412 right now, which is actually a PICU room. Hopefully tomorrow 409 (the much-coveted corner room) or 410 will clear out so we can move. At least this room has a view to the outside, and the trees across the parking lot are turning some beautiful shades of orange and red. Just another reminder of how fast this summer has slipped by.

After we got to the room and got everything settled, they put Levi under conscious sedation and performed the bone marrow aspiration and the spinal tap with a dose of chemo straight into the spinal fluid. We've been through this a few times at this point, but it doesn't get easier. While he was still out, I slipped out and grabbed some lunch to bring back to the hospital. He was fully awake and bouncing around his crib when I got back and was very excited to eat. He did very well for not having anything to eat since dinner the night before. We enjoyed the rest of the day together, and thankfully we were all able to take a nap later in the afternoon.

Levi is doing well today, we've had a busy morning of wrestling on the bed, racing his Hot Wheels on the window sill, and destroying his cheese omelette and toast with a good portion of it ending up on the floor. He is in good spirits, and adapts so well to being back in the room. He remembers all his routines and games with the nurses. He does so much better with all of this than the rest of us. He has had a few low grade temps of 99 or 100, but we're not too concerned - they could be from the flu shot he received yesterday or the increased dose of chemo he is getting. We'll just keep an eye on them to make sure they don't spike. If they persist or go up, the doctor will administer an antibiotic just in case there is an infection.

We had an interesting comment yesterday. Steph mentioned to someone here at the hospital that we were looking forward to having only one more round of chemo after this one. She then was told that we had one more "planned" round, and that we shouldn't be cocky. I have to admit, that one set us back a little and made me think. What is the difference between being confident and cocky? I am confident - I will be the first to tell you that. Hebrews 11:1 tells us that faith is confidence in what we hope for, and that's exactly what we're hoping for. I posted something on Facebook about it, and got some great feedback from many of our friends. After reflecting on it a little more throughout the night, I have come to this conclusion. If I was placing confidence in my own abilities or boasting about what I had done under my own power, then absolutely I would be cocky. I would be attributing Levi's progress to something that I had done. But this couldn't be more contrary to how I feel. I learned very early on that this battle is out of my hands. There are no tools in my daddy's toolbox that can fix this thing for my son. I am empty, my human abilities to fight this are non-existent, and I cannot affect the outcome. However, I am placing my confidence in someone who can. And that someone tells me in His word that I should have faith and that He who began a good work in us will carry it on to completion (Philippians 1:6). Therefore, yes, I am confident. And I'm not going to give that up.

Please continue to pray for us. These times are tough. Unfortunately, the highs of being home and the joyous tranquility of having everyone under one roof dissipate too quickly when we bring our son back to the hospital, haul up his blankets and stuffed animals in a little red wagon, and hook those clear tubes back up to the lines under his t-shirt. Each round has brought about its own demon to face. The first round brought disbelief. The second brought fear. The third brought weariness. And this fourth round has brought anger. These emotions are not indicative of the tremendous progress Levi has made, and I know I won't make the honor roll in the School of Tough Situations with this list of struggles, but they are very real, and each needs to be dealt with head-on.

The start of this round has been emotional for all of us. I was on the phone with my beautiful little Caylee Grace a little while ago, and she asked me where I was. I told her I was at the hospital with bubby and explained that we had to keep giving him some more medicine so he would get all better. She then told me in an innocent, yet tired voice that she wanted to be a family. Her statement shot straight through me; I also want that, so badly. But to hear it coming from my daughter, who I fear is often the one who gets left out in this struggle, really hit home. I know we're doing the right thing, but I can never forget that all of us are impacted by this sickness. The weight of this burden is shared by all involved in different ways. This includes Levi, our little family of four, and all of you, our family and friends who pick up a piece of the burden each time you hit your knees and offer it up to God in prayer. You all mean so much to us, and I thank you from the bottom of my heart for helping us carry this. We love you all. Remember, our God is stronger.

Michael, Stephanie, Caylee, and Little Levi

Wednesday, October 12, 2011

Preparations for Round IV...

Hi everyone,

Time to give you all an update on our family time here at home. As I’ve written about these little respites before, we are loving it. Levi and Caylee are all over the place, spending their time together running breathlessly throughout the house, hanging out in their tent fort in Caylee’s room, and arguing over every toy in sight. Our children are making up for lost time and are wearing us out; but we love it. Levi is eating well, sleeping well (for the most part), and loves being home in his own domain.

The home healthcare nurse came out yesterday to draw Levi’s labs. We got a call from the doctor’s office after lunch, and all of his counts are looking good. His ANC is up over 1000, so we can breathe a little easier about having him play in the yard or head out on our trips escaping from the house. He has enjoyed hanging out with mommy in the mornings carting Caylee back and forth to preschool, small trips to the fabric store for supplies to fuel Steph’s craft project fury, playing outside on the swingset in the evenings, and gorging on popcorn while watching VeggieTales at night. We’ve been blessed the past two weeks with incredible weather; it’s hard to believe it’s in the mid-seventies and sunny in October, but we’ll take it!

Since all his labs came back looking good, it sounds like everything’s a go for this Friday. I am going to take the day off work to head down to the hospital to move him and Steph back into their apartment. It will be hard to take him back and hook him up, but we have to keep telling ourselves that we are over halfway now, and the finish line continues to creep closer on the horizon. It seems much easier to take a child to the hospital that is feeling bad and acting sick then it is to take your little one in when he’s feeling great and acting normal. But, we know it is all part of a proven protocol, so we’ll keep our eyes on the prize and press on.

Please keep us in your prayers. We believe that God is in control and that He continues to walk with Levi and our family through all of this, but your prayers firm up this belief and strengthen our resolve. Levi’s next round of chemo will be shorter, but it will also include some very high doses of medicine as well as a new medicine that he hasn’t had yet. Along with these changes come some unknowns, and with the unknowns come those familiar enemies - worry and doubt. But our weapon is prayer, our shield is faith, and our confidence is in the One who continues to answer our prayers for our little one.

In closing, I wanted to share a poem I wrote about prayer. Again, I am not a poet by a long shot, but it was just a way for me to put into words what we feel as parents who continue to pour our hearts out to God.

Whispered Prayers

Whispered prayers are often the loudest
Because whispered prayers are never uttered alone
Only with your eyes closed tightly
Are the true visions of your guardian shown

Whispered prayers are often most desperate
Because whispered prayers are screamed from the ledge
Not knowing if one step forward or backwards
Will save you or plummet you over the edge

Whispered prayers are often revealing
Because whispered prayers are always sincere
Praying for only that which matters
Words offered silently where no one can hear

Whispered prayers are a parent's weapon
Because whispered prayers are always kept near
Transformed by each prayer into a soldier
Diligently fighting the things that they fear

Whispered prayers are a fragrant offering
Because whispered prayers come from the soul
A sacrifice placed delicately upon the altar
A plea for shattered pieces to be made whole

Whispered prayers are always answered
Because whispered prayers come with a promise
Desperate cries for help will be heard
And the chaos of life will dissolve into focus

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

Friday, October 7, 2011

On a jet plane...

Hey everyone,

What a week. I am writing this post from an airplane on the way back from San Diego. As you know, I was in LA this past week for a conference, then headed down to Carlsbad for a few meetings. It's been a long and productive week, but I am glad to be heading home.

I haven't had much of a chance to update the blog the past several days, so we have some catching up to do. As some of you know, Steph and Levi were home this past week. I flew out early Sunday morning for my trip, then got word while I was in Minneapolis that the doctor had cleared Levi to come home! We knew he would likely be able to come home early in the week, but weren't expecting it to be Sunday. Thankfully, Steph's parents were able to head down to the hospital to help move them out.

From my many conversations with Steph this past week, it sounds like things are going very well. Levi and Caylee picked right back up where they left off, and apparently Levi is playing the role of antagonistic little brother with with enthusiasm and perfection. They're playing hard - Steph even caught the two of them jumping on Caylee's bed together. It was an emotional week for me at times, being away while they were home, but the fact that Steph's parents spent the week with her and the kids at home really helped out.

I have to share one cool story from this past week... The conference I went to threw a huge party for all the attendees. The highlight of the evening was a concert by Weezer, who has always been a band I've liked. So we headed to the stage early enough to get spots right along the rail in the front. They played a great set, and we had a blast. During one of their songs, Rivers Cuomo brought out a ukulele to play for their song "Island in the Sun." After the song was over, he broke it in classic rock star fashion, then their guitarist picked it up and walked to the edge of the stage and handed it right to me. Everyone around me was pretty jealous, but there was no way I was letting go of that thing. After the show, we hung around the security fence where we could see their dressing trailers. Their bassist was mulling around outside, so Bryan, one of my friends, got his attention ("hey bassman!") and he came over to talk to us. I asked him if he could sign it for my son, then quickly told him about Levi. He walked away with it, then after a few minutes brought it back with all the band members' autographs on it with a little note that said "To Levi with Love." What a cool souvenir! I'll have to figure out a way to hang that one in Levi's room.

So, back to the logistics and battle plan... The home healthcare nurse came out to draw Levi's labs on Tuesday. We got the results back on Wednesday - everything looked fine. Unfortunately, the hospital did not run the correct set of labs, though, so we are not sure what his ANC is. This means that we probably won't be doing much traveling this weekend with him, but that's ok.

The plan as of right now is that we will keep him home this week and most of next week and take him back to Riley next Friday to begin his fourth round of chemotherapy. It sounds odd to be talking about his fourth round... That means that he's over halfway through his treatment regimen, with only one more round to go after this one. I would love to have him home by Christmas, although I know that would be pushing it. I thank God for His protection of Levi through these first three rounds, and ask you to continue to pray for these next two.

So for now, I am going to try to get a little bit of sleep and wait anxiously for this plane to land, then jump on my next flight, then drive home from the airport, then walk up my sidewalk to hug and kiss my beautiful wife and sneak into the kids' rooms to quietly pat their backs and kiss their foreheads while they sleep. I can't wait. It will be such a blessing to come home to the three of them; that hasn't happened for awhile, and it sure beats coming home to an empty house.

Love you all, and thanks again for keeping my family and little boy with your prayers.
Michael, Stephanie, Caylee, and little Levi.

Saturday, October 1, 2011

Some thoughts from way back...

I just wanted to share a poem I wrote awhile back, during Levi's diagnosis stage. I am not a poet, but was just trying to put my thoughts down on paper. The poem's about looking forward to a time when we'll all be called home and live a life with no sickness or pain...

I told my little boy today
There’s no leukemia in heaven.

No sitting on the wrong side of the window looking out
No cold hands in gloves accompanying hushed whispers
No cringing when the room door swings open
No needles and medicines and bulletin board pictures
No, son, there’s no leukemia in heaven

I told his mommy today
There’s no leukemia in heaven.

No waiting room coffee with a side of reassurance
No crying in the shower so no one can tell
No late night staring as your little one sleeps
No well-wishing strangers trying to candy coat hell
No, sweetheart, there’s no leukemia in heaven

I told his big sister today
There’s no leukemia in heaven.

No sharing mommy and daddy with doctors and nurses
No wondering why bubby can’t get down to play
No vacations cut short or summertime dreams cancelled
No wondering where you’ll spend the night at the start of each day
No, princess, there’s no leukemia in heaven

I thanked God today
That there’s no leukemia in heaven.

Thanked Him for understanding when my words turn bitter
And thanked Him for listening to my cries of desperation
Thanked Him for His patience with repetitious prayers
And thanked Him for new life and the gift that’s been given
Thank you, my God, that there’s no leukemia in heaven

--Michael Whitesell

Wednesday, September 28, 2011

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

Saturday, September 24, 2011

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

Tuesday, September 20, 2011

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.

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

Saturday, September 17, 2011

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

Thursday, September 15, 2011

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