Monday, December 26, 2011

The most wonderful time of the year...

I hope everyone had a great Christmas! A couple of months ago I made the statement that all I wanted for Christmas this year was to have my little boy home and my family all together. And I’m happy to report that I got exactly what I wanted. The chrome for my Harley and all the great food we enjoyed were just icing on the cake.

What an awesome Christmas celebration we’ve had this year. On Friday evening we headed out for another visit with Santa in Pierceton with the Bennetts. We stood in line for about an hour to submit our Christmas requests to him and Mrs. Claus, but once our time in queue was finally up and it was our kids’ turn to sit on his lap, Caylee immediately turned ultra-shy and hid behind me, and Levi stared at him with a steely look of disdain. Needless to say, we didn’t talk to him much, and slinked out of the building after grabbing our juice and coloring books with our heads down, once again the proud parents of the kids who hate Santa.

Fortunately, the conversation they had with Santa down in Indy a couple weeks ago (not to mention the peanut butter chocolate chip cookies and vanilla soy milk the kids left out for him on Christmas Eve) must have done the trick, because he sure left them quite a payload of Christmas presents. Caylee got her blue dolphin and Jessie doll (from Toy Story), as well as several other presents including puzzles, dolls, and a few dozen tubes of chapstick. Levi also made out like a bandit with his haul including, among other things, a fire truck, Black & Decker toy tool kit and workbench, and a couple good movies. Both of our kids got more presents than what they needed, and a special thanks goes out to all of those who helped make our Christmas an abundant one.

We didn’t do a whole lot yesterday, and we loved every minute of it. Caylee woke us up around 8:30, and we all had to go in and rouse Levi around 9 so the morning madness could begin. We read the Christmas story out of Caylee’s children’s Bible, then opened our gifts. After a big brunch of Mickey Mouse and smiley-face pancakes, we tried to take naps, but the kids must have been too amped up on Christmas candy and gift-induced hysteria to sleep much longer than 20 minutes each. All in all it was a great day of playing with and loving on our precious little ones; the time together as a family was very special.

We were able to head down to Steph’s parents’ house today to celebrate Christmas with her side of the family. We had a special time there. All the kids played very well together, and it was even nice enough outside that we got a little sunshine and fresh air, not to mention a wide open space for the kids to release some pent-up energy. We had a great lunch and dinner, although the two meals really weren’t discernible from each other, as it felt like we ate pretty much the whole time we were there. Everything was great, and the kids loved playing with their toys once we got home.

We are looking forward to the rest of the week together. I don’t have to work this week, so we have some fun little events planned, including a trip to a Fort Wayne Komets game and maybe even some ice skating (which means that I very well may be writing my next post with a cast on). We are heading down to southern Indiana later this week to celebrate Christmas with my family later this week; looking forward to hanging out with them for a couple of days.

As for an update on Levi… Well, we haven’t heard the final results from his MRD test that they ran on the bone marrow they took last week, but we did get the preliminary results late last week, and they came back clean. We are taking our encouragement in that, and trusting that the MRD test will also come back negative. We are not sure at this point when we will need to take him back down to the hospital to start Round V, but I am guessing that we will hear something this week. I promise to let you know as soon as, or at least pretty soon after, we find something out.

Well, the kids are in bed, so it’s time to find a movie on Netflix and hang out with my beautiful wife for a little while. I hope you all enjoyed your Christmas with your families, I know we did. Something that has been weighing heavy on my mind lately - please keep the families in your prayers who weren’t able to wake to a warm house on Christmas morning or a tree full of presents. Many families out there have to forego the exchanging of gifts to make sure there is enough food on the table. There are so many families in need around us; as we move toward the New Year, please pray and be thinking about the ways you can reach out to those who are less fortunate. God has blessed us with so much abundance, more than we will ever need. I pray that He breaks my heart for what breaks His this next year.

Finally, I just wanted to say thanks for all the comments we get on our blog. They are very special to us, and we read them all at least a few times. We don't always get a chance to respond, but we do want you to know that they mean a lot. You have no idea how much the encouragement you provide fuels our motivation and increases our energy to keep fighting this fight.

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

Tuesday, December 20, 2011

A little more direction...

Hi everybody,

I am having trouble believing that there are only 5 more days until Christmas. I think we have a pretty good handle on our Christmas shopping; only a few more little items to pick up and we should be done. For the first time since Steph and I have been married, we are celebrating at home just with our little family. After all the craziness this year, we decided it would be a good time to hole up in our house, enjoy our little ones, and have our own Christmas celebration. We’re still planning on traveling to see family, but are looking forward to Caylee and Levi helping us start our own little traditions. This last week has been a good one. The kids are doing very well, although the colder weather and rain we’ve had lately tends to make us all a little stir-crazy from time to time. I was able to head south for a weekend hunting trip with Steph’s dad and brother-in-law last weekend; it was a great break and time out in the woods. Steph’s mom came up to spend some time with her and the kids.

As you know, the home healthcare nurse came out yesterday to draw Levi’s labs. We got the results yesterday afternoon, and everything looked good. His ANC had come up quite a bit. It wasn’t up to the four or five thousand that the doctor originally wanted to reach before performing a bone marrow biopsy, but we talked to his office yesterday and they informed us that it had come up enough and we had waited long enough to go ahead and perform the test. So, this morning we loaded up the van and the two kids and headed south to Indianapolis.

After we got there, everything went pretty smooth (thankfully). But the trip down was rough. The kids were good as gold as they snuggled in their car seats and watched a movie. Steph and I, however, each reached our breaking points somewhere south of Kokomo. There are the obvious hard moments in the fight against cancer, the ones that come to mind whenever you start to reflect on what you’ve endured so far in the journey include learning the diagnosis, relying on family and friends to make ends meet, logging thousands of miles on the road… But sometimes the little things that get overlooked can be just as damaging, including the eroding effect that the constant stress and strain can have on relationships. Stephanie is the best friend and closest ally I have, and I am for her as well. For any of you out there, who may be starting a journey like ours, make sure you guard your relationships. Diseases like this don’t just attack physically, they attack emotionally as well. We are both looking for a chance to get away together at some point; just hope that opportunity can come soon.

Once we got there and spent the obligatory ten minutes staring at the aquarium in the waiting room and going through the weighing and measurement motions, we took Levi back to the treatment room where they put him under conscious sedation to perform the bone marrow biopsy. He fought it a little going to sleep, but they were able to get everything they needed and he slept soundly for a half hour or so after the procedure was finished. Caylee was great – she hung out in the playroom and painted a couple of birdhouse Christmas tree ornaments. After everything was all done, the kids walked out of the clinic with a few toys, some crackers and cookies, and a whole lot of energy. We stopped at Red Robin to grab something to eat on the way home, and let’s just say I tipped the waitress pretty well for all the hassle and launched kiddie cups she endured during our meal.

Before Levi’s bone marrow biopsy was started, the doctor informed us that he had decided that Levi should undergo the fifth round of chemo. Despite the fact that we knew this was an option all along, it did bring to an abrupt end the “everything is normal” game we had been playing for the past several weeks. We weren’t excited to hear this news, but we’ll accept it as the direction we need to continue to move towards the victory in Levi’s battle. We are hoping to hear back some preliminary results from Levi’s tests tomorrow, and potentially we could hear the results from the MRD test by the end of the week. We shouldn’t have to start the fifth round until after the New Year, which means that we’ll get to spend Christmas and my week off of work next week as a family.

I have to admit, getting the troops all in line to start this again right now is overwhelming. Over the course of this journey, I have had several friends remind me that God will not give us more than we can handle. But, to be honest, I have yet to find that promise in the Bible. In 1 Corinthians we are told that God will not let us be tempted beyond what we can bear, but that's a different topic. Now, I am not going to say that it’s not in there; usually, once I make a declarative statement like that, I am shown my error rather quickly. But if you think about it, if we never have more than we can handle, then why do we need God? What I have found is this; that often we often face more than we can handle - on our own. This requires us to rely on God to get us through whatever it is we’re facing. I found this in 2 Corinthians 1:8-11, where Paul talks about enduring hardships and pressure far beyond what they were able to bear. But in verse 9, he says that “this happened that we might not rely on ourselves, but on God.” Then, the reassurance that “on Him we have set our hope that He will continue to deliver us, as you help us by your prayers.” So, with this next portion of Levi’s battle, we will set our hope on Him, and continue to rely on you for the help you provide with your prayers. Thank you for continuing to lift our little one up and for your support for our family.

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

Sunday, December 11, 2011

Catching up...

Ok, so when my grandma sends me an email and lets me know it’s time for an update, I figure I should probably get my act together and let you all know what’s going on…

It has been a pretty busy last couple of weeks. Let’s start with Thanksgiving first. We had an awesome time with family – on Thanksgiving day we headed down to Kokomo to celebrate with Steph’s family. After consuming way too much turkey, sweet potatoes, and oyster dressing (I did anyway, Steph chose the pan without oysters), we headed down to my parent’s house for the weekend. I was able to squeeze in a little deer hunting with my brothers, and our family’s first experiment with smoking a turkey was a huge success. The time together with our families was much needed; Levi soaked up the attention, and the kids logged plenty of cousin-roughhousing time.

The following Monday I headed down to Austin, TX for a week and a half business trip. It was a busy trip, I tried to squeeze in about 3 weeks of work while I was there. Steph had her hands full here at home, and was appreciative of the help she received from her mom and dad, who stepped up and filled the role of co-kid wranglers while I was away. While down there, I managed to miss the first significant snow fall of the year, a sure sign that winter is right around the corner. It is hard to believe that the year is almost over.

On Friday, we all headed to Indy to attend Gary Brackett’s Christmas party. Gary Brackett, a linebacker for the Colts, has personal experience with leukemia, as he lost a younger brother to the disease a few years ago. There were a lot of kids there – we guesstimated over a hundred. Levi and Caylee queued up to talk to Santa (although Levi wasn’t a huge fan), get an autographed football, then grab some pizza. We met some friends there we hadn’t seen in years – someone that Steph used to work with when we lived in Greencastle. It was great to see them, and congratulations to their little boy who just finished his last infusion after three years of chemo treatments. All the kids there received a very generous amount of Christmas presents – a big thank you goes out to Gary and all the volunteers that put on the event for families like us. It was a moving experience to see all the little ones playing and having fun together despite the struggles they were facing.

So – you’re probably wondering what the latest is on little Levi’s treatment… Well, he has had a couple of scheduled bone marrow tests, but they keep getting postponed due to his ANC count. The doctor wants his levels to be back up to normal before they test his bone marrow in order for the results to be as accurate as possible. And it’s not uncommon for it to take a while for the ANC count to completely rebuild. It has actually gone down in the past couple of weeks, but the doctor is not concerned and said the count can fluctuate for quite some time before everything returns to normal. His other counts are fine. As of right now, we home healthcare will come out on the 19th to draw blood and check where things are, and then we’ll see if the counts are up to where they need to be to schedule his bone marrow test. If not, we’ll continue to wait. It’s a little unnerving to keep waiting while not knowing what the next steps will be, but we just continue to trust God; He’s brought us this far, and we know that He’ll see us through whatever comes next. The doctor is still considering the option of cancelling Levi’s 5th round, but that will of course depend on what his tests show.

We are guessing that nothing will really happen until after Christmas. So we are looking forward to hanging out as a family over the next couple of weeks. It has been a joy to be whole again; the kids are growing up so fast, and Levi is even starting to sprout a little hair fuzz on the top of his head. He is doing so well here at home – laughing, playing, eating, and sleeping just like a healthy little child should be. We thank you for your continued prayers for him and for our family; please remember the families of sick children this Christmas season. It can be a tough time of year to balance the stress of a little one fighting an illness, the travel and expectations that come along with the season’s traditions, and the financial hardships that can strain relationships and mar family time together. May the Peace that only God can give keep these families together.

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