Monday, February 13, 2012

Freedom + 9...

What a week. We’ve been huddled up at home, braving the ever-changing Indiana weather, and loving being complete.

Levi is doing very well. He’s eating like a champ, playing extremely hard with his sister, and sleeping around 12 hours each night. He has also apparently become a little chatter-box, and although we can’t always tell exactly what he’s saying, he’s pretty adept at getting his point across. If he becomes a little talker like our Caylee Grace, we might as well kiss goodbye any hope of a quiet car ride ever again. She’s been on quite the “question” kick lately – her most recent inquiry (and point of debate with dad) being “Why don’t monkeys wear shirts?” But we’re not complaining; our children have beautiful personalities, and there’s never a dull moment when they’re around. Levi is giving us a lesson in loving the little things in life. The pure elation over small things like taking a bath or wrestling with his sister without worrying about messing up a central line in his chest is heartwarming and humbling. How did I ever let myself get used to and take for granted the little things? God please teach me to appreciate all that you give me and to open my eyes and take in the moments and experiences that should bring me joy…

Levi had his labs drawn on Wednesday last week. They all came back good, although his ANC had dropped a little. This isn’t really that surprising or concerning; his ANC has bounced around a little at the conclusion of his last couple of rounds of chemo, and it is common for the ‘recovery’ phase to take longer each time. We are just hoping and praying that his ANC begins to grow steadily so that we can resume some of the normal trips and tasks outside the house. He has another blood test this Wednesday, so we’ll see what it does. For right now the plan is that we will let him recover all the way then take him back to the hospital for a bone marrow test to make sure everything’s still clean and clear. On another note, Steph is starting back to work tonight; she plans to head back on a couple evenings a week after I get home from work, since we can’t take Levi to daycare for awhile. It will be good to get her back on the path of normalcy and out of the house for a little while, not to mention the financial relief it will bring.

We’ve been asked many times how it feels to be done with treatment and to have everyone back together. Of course, we’re filled with joy and thank God every day for seeing us through this trial. But, to be honest, it really hasn’t completely sunk in with me yet. Maybe I’m just used to having them come home then packing up again to head back to the hospital. Not to say that I’m not happy, but more that I think I have yet to let down my guard enough to be overwhelmed like I thought I would be. It’s like over the past eight months I constructed some sort of coping mechanism, a quick switch I could use to detach emotionally when I needed to in order to stay strong and keep fighting. I am sure there are both positives and negatives to this acquired skill. It did help me get through some situations, including tests, waiting games, and medical procedures on my little boy, that a few months earlier would have devastated me. The downside, though, is that it is easier for me to shut people out or to experience things without becoming “emotionally involved.” This all probably sounds bizarre, and my Intro to Psych class in college sure didn’t mention anything like this, so I’m probably nuts. All this to say, though, that God is helping me break down these barriers I’ve built, and my joy is increasing every day.

This battle has produced questions by the thousands. “When will we know the results?” “What are the side effects?” “Is this normal in chemo treatments?” “Should we be concerned?” “What is the success rate?” And on and on… But there’s been one question that has been ever-present in our hearts and minds. “Why do these things happen and what are the outcomes of us going through this?” Honestly, I never directly asked the question. I made a conscious effort to omit it from my prayers. Sometimes it was because I was afraid of what the answer would be. Other times it was because I felt it led down a path of distraction and frustration. I prayed, instead, hoping some good would come out of the battle we were fighting. But to say that it was not in my heart and mind would be simply false. Of course we wanted to know “Why us?” Of course we wanted to know why we were fighting this fight; that's human nature. I think now, especially at the end of Levi’s treatments, we are even more prone to looking back and asking “Why did we just go through that?”

On Friday afternoon, I received a devotional email at work that sat me back in my chair and sent chills up my spine. It was a devotional I receive on a daily basis from Zondervan, and the title was “When an answer to prayer is bigger than our brains.” It highlights Daniel, in the Old Testament, who had been experiencing God in a very real way through visions and prophecies. At one point he asks in Daniel 12:8 “what will the outcome of all this be?” The response he received?

Daniel 12:9 “Go your way, Daniel, because the words are closed up and sealed until the time of the end.”

That was the verse that came screaming out at me. It’s not that there isn’t an answer to my question, or that the answer is in some way disappointing. Nor is it that God is being dishonest or doesn’t know the outcome. Quite the contrary – the answer to my questions of “Why?” and “What are the outcomes?” do exist and will be revealed at the designated time. God is never early and never late. This verse was such a clear message to me to stop struggling with the answer to “Why” and instead trust Him and His perfect timing and perfect will. Instead of looking at God and shrugging my shoulders as if to say “What was that all about?” I should thank Him for allowing me to be part of something bigger than myself and trust that in His plan, something good did and will continue to come out of Levi’s battle. Whether I ever see it or fully understand it is of no significance.

Romans 8:28 “And we know that in all things God works for the good of those who love him, who have been called according to his purpose.”

Here's a link to the devotional I mentioned. Thank you all for your continued prayers. God is good.

Michael, Stephanie, Caylee, and Little Levi

Monday, February 6, 2012


There’s something special about a homecoming. In high school we marked the event by voting for a king and queen (I’ve always been amused at the irony of monarchical elections). We distinctly remember the first time crossing the threshold of our homes after getting married, which usually involves the husband making some sort of gallant attempt at romantically carrying his new bride, something that really only works well in the movies. I can distinctly remember bringing home my daughter and son from the hospital a couple days after they were born, worn out but so excited to introduce the newest member of the family to their freshly decorated room and surroundings soon to become familiar. Yesterday, around 1pm, we had a different kind of homecoming - one that I will never forget; that was the time that I pulled into the garage with Levi in the backseat of the van, just waking up from a nap – a little groggy but anxiously looking out the window.

Backing up just a little… Friday, as you know, was a little disappointing for us. I had driven down to Indy on Thursday night to help Steph get things rounded up for Levi’s departure, fully expecting that we’d be heading home in the morning. But, the next morning’s blood draws brought a letdown, as his ANC calculated at zero. The doctor told us that he wouldn’t be going home that day, but on Saturday, if Levi showed any positive numbers, he’d let him go home. It was a long day in the hospital. A day may not seem that long in most situations, but when you have your heart set on something like bringing your son and wife home, any amount of unexpected time can feel like an eternity.

We had Levi's little congratulations party, complete with a sign on his door, donuts, and a little sentimental red wagon full of rice krispie treats. Steph had a shopping trip with her mom and sister planned for early Saturday morning, so she headed home on Friday night, leaving bubby and I to have a guy’s night at the hospital. We had a good time together, until around midnight, when Levi woke up and decided he wasn’t happy with the plan to go back to sleep. We had a pretty rough stretch from midnight to about 3am. I talked the nurses into delaying his blood draw in the morning until 6:30 so we could at least get a couple of hours of sleep.

The next morning, Marty, Levi’s favorite nurse, came in to check on us and told me with a smile – “Levi has counts!” His ANC had come back up to 140, which meant that we could head home! Levi and I wolfed down some breakfast, then heard the knock on the door followed by the doctor asking us if there was any reason we could think of why we shouldn’t go home. We, of course, didn’t think about it too long before starting to pack. It was interesting trying to pack up the room by myself with Levi doing more unpacking than packing, but he did manage to empty his clothes drawer into the tote by himself. Marty came back in to watch him as I took a couple wagon trips down to the van, then we were off! Everyone wished us good luck, and I am pretty sure there may have been a few sniffles, then we were headed north in the van. It was really pretty low-key, just the way I preferred it.

Levi passed out on the way home – we were both pretty tired from the night before. When we got home, Steph, her mom, and her sister had just got back from their shopping trip. My dad was here as well, along with Cyrus and his girlfriend, Katie. Levi and Caylee shared a lot of hugs, a couple kisses, and then started chasing each other around the house. It felt great to be home.

The day went by quickly. Everyone tried to snag a nap, or at least a piece of a nap, in the afternoon. My dad, Cyrus, Katie, Caylee, and I headed into Ft. Wayne in the evening for a Komets game with the Bennett’s. We had a great time hanging out. Today was pretty relaxing – slept in a little, had a big brunch, then watched the Giants beat the Pats with the Bennett’s this evening as the kids wore themselves out playing together. Levi kept right up with the pack, and thankfully he and Caylee both went to sleep pretty easily tonight. Things feel complete tonight, having both of our little ones sound asleep under the same roof.

Things really haven’t sunk in yet, that Levi is finished with his treatments and is home with no central line, no IV’s, and no prescriptions other than his weekend doses of antibiotics. There’ve been a few emotional moments as I allow my mind to reflect over where we’ve been and where we are right now, but there will be plenty of time for reflection in the coming weeks. We’re keeping ourselves busy right now with all the activities that come with reentry: unpacking, cleaning, planning, and catching up on all the “to do” items that have taken a back seat since last summer. Levi has an appointment here in town next week to check his counts, and we’ll take him back down to the hospital on the 15th for a checkup.

Thank you for your prayers. Thank you to those who have followed his story so closely. When his battle first started, back when he was only six weeks old, we had to make a choice. We could bottle things up inside, keep things quiet and out of the spotlight, and build up walls in our own private emotional shelter to weather the storm. But the walls would have been constructed out of that which would fail when the wind really picked up; pride, denial, anger, and fear. So instead, we decided to open up, ask for help, and invite you alongside; not just as passive observers, but fellow fighters in Levi’s battle. It’s not over, but we’ve just accomplished a major victory, and are home thanking God for bringing us through this.

1 Corinthians 15:55
“Where, O death, is your victory?
Where, O death, is your sting?"

We’ll keep you posted on how things are going…

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

Friday, February 3, 2012

Just not today...

Well, we thought today was going to be the big day. But it's not...

Levi has been doing very well this week, no fevers, high energy, good appetite, etc... All the signs of a recovery. Earlier in the week, after his blood tests on Monday, the doctor indicated that, based on what he was seeing, Friday should be the day when Levi could come home. So, we started making plans. The nurses worked on a little going-away party to throw today, and last night I dropped Caylee off at Steph's parents' house and headed on down to the hospital.

The doctor mentioned yesterday that he wanted to see Levi's ANC at around 150 or 200 before he let him go home today. Since he was at 112 yesterday morning, we weren't too concerned about it. They drew his labs this morning at 4am, but after falling back asleep and waking up a little later to find his lab printout sitting on the bedside table, we were dissapointed to see that he had dropped back down to zero. We're used to seeing his counts bounce up and down a little when recovery begins, but we were hoping it wouldn't bounce today.

I have to admit, we were disheartened this morning. But it's nothing we can't overcome, and we are making the choice to be thankful that our little Levi is doing so well. God has brought us this far, He won't let us fall so close to the end. The doctor said that if there is any positive count increases tomorrow, we can take him home. There are a lot of plans being reshuffled today to make sure we have things lined up this weekend, but hopefully tomorrow at this time I'll be writing you an update at this time from my couch while Levi runs laps around the living room around with his big sister.

Thanks for your continued prayers. We're so close...

Michael, Stephanie, Caylee, and Little Levi