Monday, October 31, 2011

Trick or treat...

Happy Halloween!

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

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

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

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

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

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

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

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

Tuesday, October 25, 2011

An overdue update...

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

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

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

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

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

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

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

Monday, October 17, 2011

A few more things...

Hi everyone,

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

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

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

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

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

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

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

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

Hebrews 10:35-39

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

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

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

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

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

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

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

Saturday, October 15, 2011

And so begins Round IV...

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

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

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

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

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

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

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

Michael, Stephanie, Caylee, and Little Levi

Wednesday, October 12, 2011

Preparations for Round IV...

Hi everyone,

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

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

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

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

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

Whispered Prayers

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

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

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

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

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

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

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

Friday, October 7, 2011

On a jet plane...

Hey everyone,

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

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

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

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

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

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

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

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

Saturday, October 1, 2011

Some thoughts from way back...

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

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

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

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

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

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

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

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

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

--Michael Whitesell