Thursday, July 5, 2012

One year ago today...

One year ago today, our world became much clearer and much, much more frightening. [blog post from July 5, 2011] One year ago today, we learned how sick Little Levi really was. One year ago today, we faced a choice; we could turn away, focus on ourselves, and begin sinking in a dangerous trap of self-pity, bitterness, and defeat. Or, we could open our hearts, ask for help from our family and friends, and rely on God to see us through what we knew were going to be several dark coming months. You see, there really is no in-between. You can't do both. Thankfully, because of the immense and immediate support structure and outpouring of love that overwhelmingly flowed into our lives, we chose the latter. And what an experience it has been.
So - on to the important stuff. The question that we get asked almost daily. How is Little Levi? Well, I wish you could all see him, just spend five minutes or so watching the little blonde-headed streak of energy scream through the living room, the little personality that makes you turn your head to hide your smile and laugh no matter how frustrated you are with him, the little excited fan filled with excitement as he claps and cheers at baseball and hockey games, the little one that squirms in your arms as you take the occasional moment to wrap him in a loving embrace and thank God that he's still with you. You would know then, that our Little Levi is healthy, thriving, and enjoying the wide and wonderful world of a two year old boy.

A lot has happened since our last update. I know it's been a few months since I have written about our Little Levi, but I have to be honest; part of that was purposeful. The decompression that we experienced (and continue to experience) was at times something that needed to be done in private. After spending months completely open for all to see, it was necessary to regroup as a family in order to regain some sort of balance. The last couple of months have been whirlwind, and have included birthday celebrations, family trips, doctor's checkups, a case of the chickenpox, and countless hours on the swingset.

Yes - checkups. We've had a few checkups, including weekly blood tests for awhile and one last MRD test to confirm that Levi's leukemia was eradicated. The short answer is - yes. All tests have come back clear and clean. In the word's of the doctor, all tests have returned as good as they can get. He will continue to have checkups every month until next year, then they'll start spreading out again. In December, he'll go back to the hospital for a battery of tests (including an EKG and other organ function tests) to see if there has been any damage from the strong chemo he received this past year. We will deal with that when we get there. We know that Levi is healthy, and from a distance you could never tell how sick he once was. But if you get him to sit still long enough, the signs are there. The scars on his back, knee, chest, neck, arm, and head illustrate the battle he endured, each one linked with a different test, procedure, poke, or line. But, if you do indeed get him to sit still long enough, you'll also see that spark in his eye, the one that catches me off guard, the one that proclaims that this little two year old fighter cheated death. Really, though, that's not entirely accurate; he didn't cheat it, he and his God beat it.

We have been enjoying our summer, and grow more in love with our little boy every day. But there are struggles - emotional, physical and spiritual. The post-treatment phase is an odd time. You want to return to normal, but you realize that there's no such thing. Normal now seems to be a misconception, a naive assumption that there is a level state of being in which the majority of people live, all sharing some form of general contentedness. But there is no normal now. There are things that feel routine, things that seem familiar - things that you knew or felt before your world was turned on its head, but nothing is, or was, or ever will be really normal.

At times you look back and your emotions flash red; you fall into anger, wondering why your child had to go through this. This can easily happen when browsing through old pictures or reading old cards and letters of encouragement. These red feelings boil down to one key theme; it's not fair. But what a dangerous, slippery slope that is. I’ve struggled with the idea of “fairness,” and have personally come to the conclusion that it is a standard determined by man based on our limited view and experience that has no place being used as a measurement for God’s will, which we can’t possibly fathom or understand in full. Instead of looking for things to be “fair,” I should strive to just be in God’s will.

At other times you look back and your emotions flash yellow; you realize that many who travel this road do so more than once. You know how quickly a little one can turn for the worse when a disease as frightening and evil as cancer picks up speed and begins to consume a young life. You know what it's like to experience true fear, and the sad news of other little fighters losing their hard-fought battles is crushing. But God's promises outlive these fears. Relying on Him got us through Levi's battle, and we continue to rely on them daily. I don't know what's in store, but my God has and continues to move mountains.

Any trip backwards through memories will trigger heavy emotions. Some are happier, others more emotional or dark. But we continue to rely on God for protection for our son, and for the strength, courage, and patience it takes to keep on. We ask for your payers of praise for our son's health and life, and also for prayers of healing for all other small precious ones who are engaged in a battle with an enemy unlike any other they've faced. Fight for and with these little warriors and their families; support them in prayer, support them financially, take them meals, hug them and let them cry on your shoulders, forgive them of their little slips and outbursts, and register to be a bone marrow donor. We have, and continue to thank God for all of you. As I've said before, I long to thank you all in person for the role you've played in Little Levi's battle, but if I can't here on earth, I will when we're called home and are standing safely on the other side.

We love you all, and will continue to keep you updated. -Michael, Stephanie, Caylee, Little Levi

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

Sunday, January 29, 2012

Already over...

Ahh, a peaceful Sunday morning with my wife and little buddy. Just forced down my third cup of hospital coffee, plugged in my headphones to drown out SpongeBob, and sat down on the bed to send an update your way…

In short, Levi is doing great. Besides sporting a couple sizeable bruises on his head from unfortunate tangles with his crib, the floor, and other obstacles lurking in room B410 (amplified by low platelet levels), he is looking and feeling very well. His appetite has returned en force; he enjoys walking around the room with his bag of popcorn, a box of Triscuits, or a handful of pretzel sticks while he plays basketball or sweeps the floor with his toy sweeper. He’s been hooked up to an IV since his central line was removed last week, but the IV site on his hand went bad, so he’s down to just the site on his right arm. They were able to downsize his cuff, so he does have use of his arm, albeit restricted. Steph’s mom was able to spend a couple nights here in the hospital with them this week, which really helped Steph out. Having someone else to aid in the rocking and IV pole chasing make a big difference.

The doctor thankfully decided that he does not need blood draws every morning, since his the two blood cultures they took last week after his line came out returned NEGATIVE! That was the news we were praying for, and it means that we can start talking expectantly about when he might come home. The doctor felt pretty comfortable with the negative cultures and the little flickers of recovering counts we were starting to see in his blood tests, so he stretched out the blood draws to every 48 hours instead of every morning at 5am. That, as I am sure you’ve guessed, is a rough way for a little guy to wake up in the morning.

We’ve had a pretty good weekend together, although we’re hoping it’s one of the last that we have to spend like this. Our little Caylee Grace is hanging out at my parents’ house, but she did get a chance to see her Bubby for a little while on Friday night when I brought her down to the hospital. They, as always, didn’t miss a beat and after sharing a brief hug and scream of joy, ran to the bed to climb up and start wrestling. We had to dial that down a notch due to Levi’s IV lines, but they still managed to get a healthy dose of rough-housing in before she had to leave with my dad. I spent most of the day yesterday in officer’s training for the Indiana CMA chapters – a great time of worship and instruction with great friends that I don’t get to see very often. Just made me look forward to sunshine, warmer weather and some bike riding time with my wife later this year that much more.

After a couple of conversations with the doctor this weekend, we think that we may be able to bring Levi home this week; we’re thinking Friday, but there is a slight chance it may be a little earlier if they can figure out a way for him to continue his antibiotics through IV at home for a few days. We’re trying to not get our hopes up, but the fact that we’re talking about the light at the end of the tunnel now is immensely encouraging to our tired family. We just need to keep Levi fever-free, eating well, and pumped full of antibiotics for just a few more days.

As is evident, this last round has been quite the roller coaster ride, with highs, lows, and scream-inducing dark tunnels. But, as we’re nearing the end of the ride, it becomes more apparent that we never have been and never will be alone in this battle. There’s a verse – Deuteronomy 31:8 – that puts it so succinctly.

The LORD himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged.”

God has not and will not leave our side, but even more importantly, He has gone before us to face the enemy before we even begin fighting. That is perhaps even more comforting. I have a small piece of paper at my desk at work with four simple words: “It’s already over now.” It was a note I wrote to myself some time back, during one of my tougher days, to remind myself that the battle had already been won; we were already victorious because we were relying on a God that has already gone before us. Looking back, there was not once that we were on our own, and I continue to thank Him that despite our fears, our doubts, and our failures, His love for us is greater and He will never break His promises.

Thanks for your continued prayers. We can’t wait to bring our little one home. We want so badly to have the walls of our home echo with the sounds of both kids playing, to hear both little voices chiming in during our dinner time prayers, to tuck them both in bed at night and know that the morning will bring a new day we will face as a complete family.

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

Wednesday, January 25, 2012

Further developments...

Hi everyone,

As many of you know already, Levi’s blood cultures have continued to come back “positive” since late last week, which means that he is still fighting a bacterial infection. Right before I left the hospital on Sunday to travel home, the nurse told us that they had finally identified the specific bacterial strain he was battling. I don’t know how to spell it, but the good news was that it was listed as susceptible to antibiotics. They adjusted the type of antibiotics he was prescribed based on this discovery that evening.

Yesterday, after another culture had come back positive (which would have been drawn after his antibiotics had been changed), the doctor decided that Levi’s central line needed to come out. Steph and I had been wondering about that, since his fevers had disappeared, his blood pressure was stable, and his appetite and energy levels had returned. This led us to believe that maybe the bacteria that was causing positive cultures was harboring in his line. The decision to take his central line out was a quick one and kind of caught us off guard, as we originally thought they were just going to add another antibiotic to see if that helped. The doctor also wanted a PICC line put in to facilitate the remaining antibiotic doses and blood tests over the next couple of weeks. They had a little trouble finding a PICC team on such short notice, but after a good deal of work and a lot of phone calls they were able to get a team lined up from Methodist Hospital. I wasn’t able to take off and head down for the surgery, but a special thanks goes out to my mom and Steph’s dad who both traveled to the hospital to be with her while Levi was in the OR.

They took him back for surgery around 5pm, and were able to remove the central line with no issues. The PICC team, however, had some trouble. They tried three times to get a PICC line put in his arm, but every time they weren’t able to get it past his shoulder. Steph asked if perhaps the difficulty was caused by him being double-jointed (sorry dude, you get that from me), and they seemed to think that could have been the issue. So, after quite a bit longer in the OR than what we were expecting, he emerged with two IV’s (one in each arm), giant cuffs on each arm, and a dozen or so little spots on his arms, hands, and feet where he was poked. I am glad he was out for the procedure.

He was literally irate after waking up from surgery. He did not have use of either of his arms due to the cuffs they had placed over his IV sites. They had to give him some medicine to calm him down, which helped. Steph mentioned that she couldn’t even keep him on her lap, and I am pretty sure he may have even taken a couple cuff-padded swings at her. Poor guy, he has never had an easy go of it waking up from procedures like this. After they got him back up to the room, he ate a big dinner and was a different kid after that. I could hear him over the phone chatting away and playing with the TV. He even “mooed” at a kid crying down the hallway who apparently sounded like a cow.

Clearly, the surgery did not go quite as we hoped. The cuffs and IV sites are annoying him (although he stared at his chest for quite some time wondering where his lines went). He now has to get his blood drawn the old fashioned way – with a good ol’ needle poke. As for me - I was not impressed. My first reaction, honestly, was anger over the apparent fact that the surgery team apparently rested their starters and gave their JV squad a chance to play. I was not a happy dad last night. But I know they gave it their best shot and did what they could, so this morning I am consciously choosing thankfulness over bitterness, something that is not easy for me. So – here goes… I am thankful that Levi made it through surgery ok and there were no complications with his anesthesia. I am thankful that he no longer has a central line in his chest. I am thankful that whatever his current IV set up is we know that it is temporary and that he will be home soon without it. I am thankful that his little good-natured attitude and the joy he takes at the small things in life serve as an example for me. I heard from Steph this morning that his ANC is now officially zero, which means his immune system is non-existent. Now we wait for little flickers in his blood counts that signal a rebound. We are praying that his blood cultures start to come back negative now that his central line is gone so that we can really start looking forward to bringing him home.

I have been humbled by the sheer number of people who, in talking with us about Levi’s battle, shared their own war stories of illnesses, accidents, and scary experiences they have encountered with their children. It’s interesting, though, that many times these parents feel the need to qualify their stories when they share what they’ve been through just because they feel the severity of their experiences is not as great as Levi’s. We’ve had moms and dads tell us about all kinds of things, from surgeries to an experience with the flu to broken bones to a child knocked down from a bout with pneumonia or a viral infection. Then, after they share their experience in a moment of vulnerability, follows a statement like “I know it’s nothing like what you’re going through” or “Not like I’m pretending to know what it’s like for you guys.” I know these little qualifying statements are meant with good intentions, but let me be as clear as possible…

Do not, ever, feel like you need to qualify any experience you’ve had with your child.

Any parent who has held their child in their arms while he drifts into unconsciousness before a procedure, who has watched as their child stares backwards over a nurse’s shoulder as he’s carried off for surgery, who’s woke up in the middle of the night to stare over a hospital crib rail to make sure the rising and falling of your little one’s chest continues, who has committed the most precious and protected thing in their life to the care of a complete stranger in scrubs or a lab coat knows the pain, anxiety, and fear that we feel. I don’t care what the circumstance was; you were not alone in your struggle then and neither are we now. All of us, when our little one was born, were granted the title of “parent”. Your battle stripes and the right to cry at your kid’s wedding, though, were earned in the trenches of hospitals, doctor’s offices, waiting rooms, and church altars. You know what it’s like to fight the good fight while on your knees in silent prayer or screaming up at the skies or patching up fist-shaped holes in a wall. You, as a parent so madly in love with your child, bear these burdens in silence so your child sees only a strong comforting mommy or daddy who won’t leave their side.

So please; never feel like the battles you’ve fought for your children are insignificant, secondary, or not worth the time to share. Your badge as a parent should be worn with pride, and anyone who thinks otherwise better hope they don’t run into us in a dark alley or parking lot on one of our tough days. You parents know what I’m talking about.

There, got that one off my chest…

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

Saturday, January 21, 2012

Well, that was fun...

Hey everybody,

Time for an update on how our little Levi is doing. As you know from my last post, Thursday was a rough day for him. His blood pressure was bottoming out, and his fevers were spiking – some of the highest fevers we’ve seen yet. They did end up admitting him to the PICU, although they were able to keep him in his normal room (the PICU rooms start two doors down from his, so it didn’t make much sense to physically move him). They were finally able to get his blood pressure up a little with some medicine, and his fevers started to edge down a little. It was a little scary there for a while, but he stabilized later in the afternoon. I had a CMA chapter meeting after work, so Caylee and I headed down after that. It was a late night, but I am glad I was able to come down a day earlier than originally planned. A big thanks to the Bennett’s for watching Caylee and Steph’s mom and dad for coming down to the hospital to stay with Steph and during the day. I have to admit, it was a little unnerving to see a crash cart in the hallway outside of his room when I got here. We definitely had a sick little boy on our hands.

Yesterday things really started to improve. His fevers were still there, but were low-grade. He started perking up a little, and while he wanted to nap or snuggle most of the day, he did get a little of his ornery personality back and started flirting with the nurses again. It’s pretty cute to watch him blow kisses to them and wave goodbye when they head out of the room. We all caught up on some much-needed napping throughout the day. He did eat a little bit of cheese and some popcorn, and drank some of my Diet Coke and some yogurt juice. His appetite wasn’t all the way back, but it was encouraging to see him eat and drink a little. We had a pretty slow day around here; I ventured from the hospital only to find food later in the evening, which probably wasn’t worth it considering the roads were solid ice. But my stir-craziness and craving for wings fueled the adventure.

Levi continues to improve today. He is pretty cranky, but I think he is starting to feel well enough to realize he doesn’t feel good, if that makes any sense. He walked around the room a little bit, jumped all over us in bed trying to wake us up after some early morning cuddling, and managed to completely deconstruct a small tub of toys. He hasn’t eaten anything yet today, but I am hoping to get some food down him for lunch after he wakes up from his nap (he and Steph are both passed out on the bed right now). They have given him plasma, platelets, and blood, the combination of which have helped him bounce back. They are continuing to take blood cultures, but we don’t have any results back from yesterday’s. We hope that they start coming back negative soon, which would mean that we could plan on weaning him off his antibiotics within 10 – 14 days. He did not have any fevers throughout the night, and his blood pressure has been stable. The plan for today is just to get him to eat and drink a little and make sure he catches up on sleep. His counts are going down, but haven’t bottomed out yet. Once they bottom out, then it’s the familiar drill of waiting for them to start climbing back up.

When Steph talked to the nurse on Thursday night, she mentioned that this is what they expect every round for AML patients. Additionally, they were surprised that Levi had been able to keep his central line in since last July 5th without having an infection. This really helped put things in perspective for us – at least we know that Levi’s little scare wasn’t something out of the blue. It also made us that much more thankful that Levi hasn’t encountered some of the nasty side effects that are so common with this difficult course of treatment. We’re also thankful that the problems he is having with his central line are occurring during this fifth and final round, not during one of his earlier rounds. If it occurred earlier, they would have likely had to replace the line; now, however, they will just wait and take it out after the round is over.

Steph and I want to thank you all of your persistent and faithful prayers, especially during the last 72 hours. It was scary, but our God is stronger and continues to answer prayers. Please keep little Levi in your prayers as he battles this infection, and pray that he regains his appetite so they don’t have to put him on TPN for nutrition. Also, please keep our little Caylee Grace in your prayers, as she apparently caught the nasty stomach bug that is going around and is hunkered down with Steph’s parents and a trashcan trying to feel better. A special thanks to Linda and Larry – we really appreciate you taking care of her and loving on her as she doesn’t feel good.

Oh yeah… One final note… Did I happen to mention that as of yesterday around 9am, Levi is DONE WITH CHEMO?!?!?! It hasn’t sunk in all the way yet, but it does bring tears to my eyes as I type it…

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

Thursday, January 19, 2012

Buckle up...

Hey everyone,

Don't have much time for a lengthy update right now - things are pretty hectic. As you know, we took Levi and Steph down to the hospital yesterday to continue his fifth round of chemo. It was a rough morning - I won't bore you with the details, but one of the mornings where everything you try to do right and all the plans you've made don't amount to anything; you realize pretty quickly on mornings like that it doesn't really matter what you try to do in your own strength.

We got down to the hospital and got Levi checked up and checked in. He kind of acted like he was feeling a little crummy, but we figured that his counts were dropping and he might be feeling some of the effects of the chemo he received last week. Earlier yesterday, while we were in the van, he did throw up his breakast, but we figured it was probably something that didn't agree with him - possibly the bizarre new flavor of Dannon yogurt juice I had picked out. He started to run little fevers, then as the day progressed the fevers intensified. Throughout the night he was in the 102 - 103 range.

As is common practice, they ran blood cultures last night to see if perhaps he caught some sort of bug and was fighting something. Fevers at this point can be caused by just about anything, including the chemo or even the antibiotics he's receiving. We got the results back a little while ago, and it did show that he had picked up something. So, here's the current status...

He hasn't eaten anything today, has no energy, and is not talking (which is not his norm). He is drinking, though, which is good. He started to have issues with his blood pressure a few hours ago, and they are trying to get it to come back up. It also looks like both of his lines in his central line might be infected, as the cultures from each came back positive. The doctors have put him on some pretty tough antibiotics and have hooked him up to all the monitors (respiratory, oxygen sat, heartrate, etc...). They talked about transferring him to the PICU, but the issue there is that the PICU is not set up to give chemo, and he still has two doses left (one at 3pm, one at 3am tomorrow morning). So instead of transferring him, they have the PICU doctor and the PICU nurses keeping an eye on his monitors. It seems that Tylenol is helping a little with his fevers, and the bolus he received might be edging his blood pressure up a little.

He could be having blood pressure issues like this as a side effect from the chemo, or because he is septic and fighting an infection. If it's from chemo, then hopefully tomorrow it will subside. If it is from an infection, and the antibiotics do their thing, then we should see improvement in about 72 hours. Obviously, this is a double-whammy for him right now, with his chemo knocking out his immune system and the infection making him sick. Both his mommy and I are concerned for him; the doctors and nurses seem like they are used to seeing things like this with AML patients, but this is really the first time Levi has been hit this hard.

Thank you for all the prayers that have gone up already for him today, and please keep them coming. Pray for Steph too, she is an amazing woman, an incredible example of how to stand up strong and protect the little one she loves with all her heart. God will see us through this storm too; in a couple short weeks, we hope to have our little buddy back home where he belongs.

1 Peter 5:7 "Cast all your anxiety on Him because He cares for you."

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

Thursday, January 12, 2012

Set the pace again...

Hey everybody,

On days like today, I can’t stop looking at pictures. Just one of those days. Good thing there’s no shortage of them, I have a couple hundred of them on my computer at work and a couple thousand of them on my phone. It just seems to help, on days like today…

Well, Round V is officially underway. We rounded up the essential gear for hospital stays (although this load was much lighter since this first part is only a two night stay) and headed down to Riley Hospital yesterday morning, arriving around 10am. We headed up to the clinic, where Levi went through the motions of his checkup and Steph and I answered the barrage of questions. Yes, he’s eating well. Yes, he has high energy. No, he doesn’t seem to be in any sort of pain. No, he is not bruising. So on and so on. I can’t complain, though, as eight months ago our answers were all opposite of what they are now. His progress since starting treatments last year really has been amazing; according to the weight Steph got yesterday as Levi was playing on the scale in the hallway, he’s gained around seven pounds since the time he started treatments on July 5th last year.

After his checkup we headed up to the 4th floor and dropped off his stuff in the room. We are back in room 409 again, which is good; it’s a corner room, so it is a little quieter, and it does have a window that looks outside (although the gray and rainy January days we’ve been having lately aren’t that appealing). My mom and dad came up to the hospital to spend the day with us and provide some moral support, which helped immensely. We all headed down to the cafeteria to get some lunch, and then let Levi run around the hospital atrium for a much needed release of pent-up energy. Steph and I made the obligatory shopping run to Meijer to get some snacks and healthier food options for the stay while Mom and Dad watched Levi. When we made it back, Levi had found a comfortable napping spot on Grandma’s lap in the rocking chair where he spent a couple hours all snuggled up.

They came in to start chemo around 3pm. Thankfully, they agreed to write an order that he could be unhooked from the IV when he is not getting chemo during the day. His chemo consists of a three-hour infusion every 12 hours for a total of four infusions. After the fourth infusion, he will be getting a deep-tissue shot with a different drug. He’ll stay in the hospital for an hour or so after the shot, as the drug can potentially cause an allergic reaction. All said and done, he and Steph should be heading back home tomorrow around 10am. Hopefully they will both be able to get some rest in the afternoon with me at work and Caylee at daycare.

I just got off the phone with Steph a little while ago. It sounds like things are going pretty well. Both she and Levi were able to get a couple good naps in today, which helps make up for the interrupted sleep they got last night. He’s been a little busy body, checking up on the nursing staff out at the nurses’ station and seeing what trouble he can dig up. He’s eating like a champ, which is a good sign that he is coping with the chemo pretty well. Just one more big dose for now, which he’ll get at 3am. Then they get to head home. Can’t wait to see them.

Thank you all for your kind words of encouragement. It means a lot to know that little Levi’s story is touching your lives as well. I know that, even though it is not yet over, it has changed my life forever. We love you all, and continue to push towards a successful completion with God’s grace and your prayers. We love you all.

Michael, Stephanie, Caylee, and little Levi

Friday, January 6, 2012

Snap back to reality...

2012. Can’t believe it. I have to admit that I welcome this New Year, as 2011 was a little crazy. I am hoping for a little calmer 2012...

We had a great Christmas and New Year’s break. We enjoyed a fun week together, and were able to head to a hockey game with the Bennett’s before making the trek south to see my family. We had a great time with them, as the whole Whitesell gang was together for a few days. The kids ate well, got way more presents than what they needed, and played hard. We were able to ring in the New Year together, something I had been hoping for. After some late nights, great meals, and enough Xbox to last for quite some time, we headed back home on Sunday night. I had to go back to work this week, which is always a little bit of an adjustment after a week and a half off. Caylee headed back to preschool as well, and we were relieved that she seemed to remember most of the stuff she’d learned in the fall semester. Once again, I am very thankful that we were able to spend the holidays together as a family. It meant the world to us to be able to hang out together and enjoy being whole.

As you know, we’ve been waiting this whole time, since before Christmas, to hear the final results from the MRD test. Our doctor has emailed the testing center in Seattle several times to check on the status, but wasn’t making any headway. Finally, today, they tell him they can’t find it. My “daddy” reaction to that… What? Are you kidding me? You LOST it? You don’t LOSE something like that, my friend. You lose your car keys, you lose your wallet, you lose your garage door opener or your glasses. You don’t LOSE my son’s bone marrow sample, the one that he had to put under to get, the one that leaves him with a little scar on his lower back each time it’s taken, the one that we have been waiting patiently (well, almost patiently) to get back for over three weeks now. Sorry, LOSING it is not acceptable.

The good side to that, I guess, is that the doctor is confident that Levi is doing well. All of his tests have come back clear throughout this process and the prelims and “backup” results they got from this last test were negative. When you add to that the fact that we’re going ahead with the fifth round of chemo, he feels good about Levi’s case. So the plan going forward is that we will take Levi back down to Indy next Wednesday to start chemo. He will be down there for two days and two nights to get his infusions then will be able to come home on Friday to stay for a couple of days. We’ll take him back down on Day 8, which will be the following Wednesday, for the remainder of his chemo. He and Steph will spend the two or three weeks following in the hospital much like his previous rounds. The doctor did tell us that this last round is the roughest; he will be receiving very high doses of chemo, increasing the chance of nasty side effects and necessitating eye drops around the clock to prevent potential eye problems.

I’ll be honest, I don’t want to take him back to the hospital. Not for one more round, not for tests, not for anything. I want to keep him home and let him play with his fire truck and play tool set that mommy and daddy got him for Christmas. I want him to race to the door smiling ear-to-ear when I come home from work. I want to hear him singing and chatting to no one in particular over the baby monitor in the morning. I don’t want a nurse to be the first one to greet him in the morning; that’s my job.

Oh yeah, there’s that familiar feeling in the pit of my stomach. The one that I was able to ignore for a little while. The feeling that’s one part guilt, two parts anger, and three parts emptiness. So how do you kiss a 21 month old little boy goodbye and tell him that he needs to stay in the hospital with mommy as you leave? How do you pick up your three and half old girl from daycare on your way back and tell her mommy and bubby are back in the hospital? How do you tell your wife to “hang in there” and “be tough” when you know she’s not going to get any sleep in the coming weeks while you’ll be sleeping in your own bed without the piercing beeps of an IV or the growl of a blood pressure cuff to serenade when your eyes close? How do you do these things? The same way you have been; you clench your jaw, bury your emotions, glance prayerfully upward, and put one foot in front of the other. You hold back the tears until you get home, knowing the darkness of your bedroom won’t betray you and will mask all evidence of your breakdown. You secretly wish that cancer was a thing, an entity, a person, something you could beat into submission with your fists and choke the life out of for messing with your little one.

So there you have it, you know what’s racing through my mind and weighing on my heart right now. There’s your dose of vulnerability and honesty on how this stuff feels. We’ll get through this, not on our own, but by the grace of God, the fervent prayers offered for Levi, and the strength garnered from the support and encouragement from all of you. We have believed from the beginning of this battle that we serve a God who moves mountains in our lives, a God that is bigger than the circumstances we find ourselves in, a God that is more powerful than heartache, disease, and death.

“I pray that the eyes of your heart may be enlightened in order that you may know the hope to which he has called you, the riches of his glorious inheritance in his holy people, and his incomparably great power for us who believe. That power is the same as the mighty strength he exerted when he raised Christ from the dead and seated him at his right hand in the heavenly realms, far above all rule and authority, power and dominion, and every name that is invoked, not only in the present age but also in the one to come.” - Ephesians 1:18-21

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