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