Tuesday, November 22, 2011

Giving thanks...

Time slips by so quickly as things seem normal.

We have loved being home. I know I say this every time Levi has a visit home, but it’s true. Our joy is complete when we are together as a family. There’s not really a whole lot of “new” news to report on, other than the fact that our little Levi loves to be home and is playing as hard as he can. He’s enjoying being able to get out of the house every once in awhile, and was even able to cheer on his Fort Wayne Komets last Friday night during an evening out with our great friends the Bennetts. We don't really know yet what the plan moving forward will be; as of right now, we are still planning on taking Levi down to Riley next Tuesday for his bone marrow tests. From there, the doctor should be able to advise us on how we proceed.

On Sunday, we were able to head south to Kokomo to visit Steph’s grandma and celebrate Thanksgiving with her. We had a good meal and a great time seeing her; it has been awhile since she’s been able to see Levi in person, but she’s been one of his strongest supporters since day one. We love you grandma, and it was so nice to spend the day with you. We are happy that it’s a short work week; later this week we will head down to celebrate Thanksgiving with Steph’s family, then down to my family after that. We are all looking forward to the Thanksgiving holiday. It has always been my favorite. In my mind, it seems to be the last pure holiday. I know the crazy shopping commences the day after, and some families seem to jump right over it to get to the craziness of Christmas quicker, but maybe that’s why I like it so much. The day is what it needs to be. It’s a day set aside to give thanks for who you are, who you’re with, what you have, and where you’re going. It’s about family, community, and reflection. Add in a great meal and spice it with a little football, and there you have it. The perfect holiday. And I thank God that I can spend it with my family complete.

I have so much to be thankful for. I am blessed beyond all measure. Most of all, I am thankful for the people in my life.

I am thankful for my daughter. She is the strongest preschooler I have ever known. She meets every day head on with a tenacity and love for life that I wish I could share some days. She will often ask in the mornings what we are going to do with her that day. Sometimes, I have to tell her that she is going to stay with someone that day, and she steels herself for a flurry of packing and traveling. Other times I get to tell her that she can stay home with mommy and daddy that day. This always brings a welcome smile to her face. I love her sincere concern for her brother, and her prayers in which he is always mentioned. I am thankful for the innocent sunshine she pours into my life.

I am thankful for my little hero. The battle he is waging is a fight for his young life, yet he is concerned only with playing with his sister and trying to make mommy and daddy smile. He has taught me what it means to be a father and fight from my knees. He has taught me that if I truly love something, I have to let go of it and give it to God. He has taught me to never take anything for granted and to soak in every moment, every smile, every laugh, every tear, because you can never go back. Levi has pointed my life back in a direction that matters, and I am thankful for the opportunity to be his father and to help him fight his battle.

I am thankful for my beautiful bride. There were over a hundred mornings this year where she woke from fitful sleep to a dark hospital room lit only by the strange glow of IV lights and monitors instead of to the comfort of her own bed. On most of these mornings, she woke up without me there. Each time, she met the day with determination, because her sole focus for that day lay in a crib a few feet from where she slept. She has been a relentless ally in Levi’s battle, providing him the tender love, nurturing, and a caring mommy shoulder on the days when he didn’t feel well enough to even lift his head. I love my wife, and I love her love for my children. I am thankful to have her on the front lines in the trenches to fight alongside my son.

I am thankful for my family. Stephanie and I are very blessed in that both sets of parents are still with us, and that both families are complete. The marriages of our parents light our paths and show us what it means to love each other regardless of the circumstances we find ourselves in. They have offered tearful encouragement when I’ve been so weak and overcome that I can’t pick myself up off the floor, and they shared the joy and praised God alongside us when we experience victories. Our siblings are never further than a phone call away, and have been our emotional stronghold through the past several months. Levi’s network of grandparents, aunts, uncles, and cousins love him like their own, and are some of the fiercest prayer warriors I have ever met.

Finally, I am thankful for you, our friends. The ranks of troops in Levi’s battles are filled with people from our past, present, and future. Some we’ve known for years, others we may never meet. But we count all who have offered our son up in prayer as dear friends, and I hope that here in this life or someday in heaven to be able to greet each of you face to face and thank you. You have provided us with food, money, fuel cards, help at home, cards, encouraging notes, and so much more. Thank you for continuing to fight alongside us in Levi’s battle.

We love you all. Please pause a moment and reflect on Thursday; offer a prayer of thanks for where you are, and whether you’re in the midst of the flurry of meal preparation, the busy holiday roadways, or the excitement of the games on TV, it will become clear to you what really matters.

Happy Thanksgiving.

Michael, Stephanie, Caylee, and little Levi

Monday, November 14, 2011

What a weekend...

Wow, what a weekend. It’s kind of bad when you feel like you need the first couple of week nights to catch up on rest from the weekend.

As most of you know, we had a big weekend, as we packed up the minivan on Wednesday night with suitcases, pillows, dresses, and a little size 2T tuxedo to make the trek south to help my sister and her fiancĂ© set up for and celebrate their wedding. Also, as most of you know, Levi was able to join us for the event! Last Monday the home healthcare nurse came out to draw his labs, and his counts were on their way up. His ANC wasn’t quite up to the minimum 500 level yet, but it was going to make it by the time we left. We spent the night in Seymour on Wednesday night, then the girls headed down to Louisville on Thursday morning. Nate and I kept the boys with us, and headed that way later in the day. We spent the evening decorating the church and rehearsing for Friday’s big event. The kids did really well, and we had high hopes for their involvement in the wedding as little ring bearers and a flower girl.

On Friday the girls were busy all day with decorating the reception hall and running the gauntlet of girly wedding activities. The rest of us were able to meet up with all of our family who were able to make the trip from Kansas. We had a great time catching up with them – it had been far too long since we had seen them. They loved meeting little Levi, and he enjoyed the attention. Later that evening we all exchanged our comfortable street clothes for more wedding-appropriate attire and headed to the church. The wedding was beautiful, and the kids did pretty well. Levi sprinted down the aisle, Xavier headed down with his Uncle Cyrus, and my little Caylee Grace walked down with me holding her hand. I think she may have been just a little nervous with all the eyes on her. It was a late but fun evening, and the kids somehow found their second wind (or maybe it was their fourth or fifth wind) after we got back to the hotel around 12:30 am. After a breakfast and helping the new couple open their presents on Saturday morning, we all headed back and were more than a little envious of Hannah and Rob as they prepared to leave on their honeymoon to Puerto Rico.

It was a great weekend with the family. It was a much needed break, and things almost felt back to normal. We were able to soak in the moments, play with the kids, and catch up with family and friends. The little ones got enough outside playin', go-kart ridin', rough housin', and grandma snugglin' time in to last awhile. The weekend felt whole with our little Levi joining us. I honestly don’t know how I could have gotten through it all being apart from him; he completes our family, and things aren’t the same when he’s not with us. I thank God for His answer to our prayers, and count it a blessing to be able to have all of my family together. Many thanks to all of you as well who prayed fervently for this to be.

So… the plan moving forward…

The home healthcare nurse came out again today to draw Levi’s labs. We got his counts back late in the afternoon, and everything looked good. However, the doctor wants his ANC to be pretty much back to normal before he performs the bone marrow test to make sure the test is as accurate as possible. Levi’s ANC is coming up, but is not to the “normal” level yet. The doctor decided to delay the bone marrow test that was originally slated for tomorrow by a couple of weeks. Now, he won’t get another blood draw until the Monday after Thanksgiving and won’t have to travel down to Riley for his bone marrow test until the next day – which means that Steph and Levi get another couple of weeks at home and we get to all be together for Thanksgiving!

In my last post, I mentioned that there were some big decisions coming up. I didn’t want to share them just yet, since things were very much up in the air. But the decision is this – the doctor is considering possibly cancelling the fifth round of chemo, provided that the tests continue to come back clean. Of course we are very excited about this possibility – and that is what it is at this point, a possibility – but to be honest it does make us a little nervous. We want to make sure that the leukemia has been beaten completely, but on the other hand we don’t want Levi to go through an additional round of chemo (which happens to be the roughest one) if it’s not necessary. We’ve dwelled on this at length, but in the end we’ve come to the realization that it will do no good to worry about this; as with every stage of Levi’s battle, it is out of our hands. So we give this decision to God, and ask that you pray that He would give immense wisdom to the doctors as they examine Levi’s case and the existing research. We will trust Him that the decision they reach will be the right one, and we will support it and do whatever it takes to get Levi through this. We long for the day when Levi’s treatments will be done, and we can place him in bed at night without counting down until the morning when his next round will begin.

Thanks as always for all that you do for my family. We love you all,
Michael, Stephanie, Caylee, and little Levi

Saturday, November 5, 2011

Home again...

Let me paint a picture for you…

The house has been transformed. The remnants of breakfast strewn around the kitchen table resemble a junior high science experiment gone awry. The metallic mound of Hot Wheels in the middle of the living room floor would put any L.A. foggy-morning interstate pileup to shame. The handful of dirty dishes that populated the sink at this time yesterday has somehow multiplied exponentially overnight. And the fingerprint smudges on the bottom third of our television screen makes it feel like I’m watching ESPN through a stranger’s bifocals.

All of these signs point to only one thing… He’s back!!

Yup – you guessed it, Levi is home. Earlier this week, the doctor had hinted around that we may be able to bring Levi home sometime this week, as long as his counts were going up. As of yesterday morning, his ANC was still a fat goose egg, but his other counts were on the rise and were trending up enough that we got the green light to move Levi out of his apartment. I dropped Caylee off at daycare yesterday morning, then rocketed down to Indianapolis in a blue Honda minivan flash. Steph had most of his stuff already packed, so the moving out process was pretty easy. I was able to steer clear of most of the “wow – you have enough stuff?” comments, and besides the random guy in the elevator who kept touching Steph’s memory foam mattress pad in amazement (which he fondly referred to as “space foam”), the morning went pretty smoothly.

After a brief stop at Chick-Fil-A, the Harley-Davidson dealer, and the quilt shop to break up the trip, all of which are conveniently located along the way home, we arrived sometime mid-afternoon. Levi hit the ground running, running room to room exploring. He downed a couple mini-packages of Halloween Skittles from Caylee’s candy stash, planted himself in his bedroom for a while to cook on his little play grill, and chased the cat for good measure. Caylee came home about an hour later, and the two of them immediately started fighting over the John Deere ride-on tractor. What a great feeling to have them together again.

Last night he was acting a little grumpy, but we think it was because he was so exhausted. The past few nights in the hospital hadn’t afforded him much quality sleep, so we put him in bed around 7:30. He only woke up a couple of times for a few minutes each and slept almost 13 hours. The solid sleep must have done the trick, as he was bright-eyed this morning and ready to play hard. We all enjoyed our hectic morning together, but the house is quiet now; Steph headed down to Indianapolis for my little sister’s bachelorette party/shopping trip/overnight thing and took Caylee to her mom and dad’s house to spend the night, as I haven’t been feeling very well lately and wasn’t sure if I could handle both the little ones without some backup. Levi is down for his late-morning nap, and I am trying to decide which mess I am going to tackle first before my college football marathon commences.

I also wanted to let you know that the doctor has said that as long as Levi stays healthy over the next week, he doesn’t see why Levi couldn’t attend my sister’s wedding next weekend. As you know from my last post, this was something I was dearly hoping and praying for, and God once again has answered our prayers! We are very excited that he’ll be able to tag along, and Hannah was even able to find him a little tuxedo at the last minute so he could fill the ringbearer role with his cousin like we had originally planned. I am very thankful that God’s timing is perfect, and moments like this make me sit back and wonder why I ever try to drive things to my own timetable when I know things are out of my control yet under the control of the One in whom we trust. So thank you all for your prayers for this special request.

Please continue to lift little Levi up in your prayers; with his counts still low, he needs to stay away from fevers and sicknesses while here at home. He needs this time to rest in his own bed, eat normal food, and relax with his family. Please also pray for the plan going forward; the doctors are examining some options that we may have for the rest of his course of treatment since he’s doing well. I don’t feel like I should share them just yet, as things are very much up in the air, but just pray for wisdom and discernment for those examining his case and that Levi’s recovery from this last round will be swift and his tests will continue to come back clean.

We love you all, and couldn’t do this without you. Thank you for role you’re playing in Levi’s battle.

Michael, Stephanie, Caylee, and little Levi