Tuesday, August 30, 2011

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

Friday, August 26, 2011

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

Tuesday, August 23, 2011

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

Sunday, August 21, 2011

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

Thursday, August 18, 2011

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

Tuesday, August 16, 2011


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

Sunday, August 14, 2011

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

Tuesday, August 9, 2011

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

Saturday, August 6, 2011

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

Wednesday, August 3, 2011

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

Monday, August 1, 2011

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