Saturday, July 30, 2011

Sleepy Saturday night...

Hi everyone,

I hope you are all enjoying your weekends. Stephanie and I got back a little while ago from a mini-date, and Levi just went to bed. Time now to pick something out on Netflix and see if we can make it through a whole movie without passing out.

But first, I wanted to give you all an update on Levi. Yesterday was interesting, he had some very high fevers off and on throughout the day. At one point in time it was 104.9, which is the highest I have ever seen. He was not doing well at that point, and was very shaky and out of it.

Later, however, the combination of your prayers and a dose of Motrin had him back down to 98.3 and feeling good. He stood on his own (while holding on to the window ledge) for quite awhile, and was back to playing, talking, and being just a little ornery. It was great to see him feeling better. He slept very well last night with only one little stretch of crankiness from about 3:30am - 4:30 am. His fever went up a few times during the night, but never to the level it was earlier in the day.

He had a pretty good day today. He ate like a champ, and played hard. We had a lot of good hang-out time. He had some fevers off and on throughout the day, but again, nothing near as high as yesterday's. We had a different doctor rounding today from Riley downtown, and she seems to think that the fevers may be related to the rapid regeneration of his bone marrow, which can cause fever and flu-like symptoms. His counts improved quite a bit today (although ANC is still 0), and all signs are good that it will start going up soon. All of his viral and infection tests and panels have come back clear. She said that, while she is treating the fevers seriously, there is nothing to be alarmed about or that is making her believe that the leukemia is returning. She was still hopeful that maybe Levi could come home at some point this next week. It was encouraging to hear her perspective, and we are praying that his fevers subside and that she's right.

Thank you all for your prayers. They are working, and it is clear that God is continuing to work in Levi's little body. We are loving the happy playful times with him, and are "cautiously excited" that maybe we'll all get to be back home together as a family for a few days very soon before he starts his second round of chemo.

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

Friday, July 29, 2011

Grow as the waves may...

Hi everyone,

Sorry it's been a few days... What a week - hectic, to say the least. I was in Chicago for most of the week on a business trip. I've always liked going to Chicago, but it just didn't seem as fun as usual. It was pretty tough being away from my family this time.

If you've been following Levi's story for awhile, you know that things can seem like a rollercoaster. Lots of highs, lots of lows, and a few dark tunnels here and there that can seem long and intimidating. This last week has been no different for Levi. On Monday, the doctors decided that Levi could come off of the IV morphine and transition to oral doses. He had been doing better, and they were even talking about when they might be able to send him home. They had cut his drip down to one-fifth of what he was getting when he came in, so it didn't seem like much of a stretch to take him off the IV. However, Levi had a little tougher time with the transition that we thought he might. He started getting really fussy, and couldn't relax or rest very well. He wanted to be held all the time, which made for some long, sleepless nights. Steph's mom was able to come down and spend the night on Wednesday, which helped Steph get some much needed rest. He seemed to be happy and playing while being held, though, and continued to eat more and more each day.

Yesterday afternoon he started spiking fevers. As you know, this isn't what you want to see when a little one has no immune system. His fever has gone up and down over the past day with the help of Tylenol and ice packs. Stephanie called me this morning at work and asked me to come down because things were getting stressful again, so we are both in the hospital with him now. He's not acting like he's feeling very well, and his fever continues to be pretty high.

We're not really sure what is causing this. The doctor doesn't think it is bacterial - he said Levi would be much sicker if it was. He ordered an abdominal ultrasound around lunch time, which would be able to identify fungal infections. He had a chest x-ray yesterday to check for respiratory infections, which came clear. He's had some nasal swabs and blood cultures, but we don't have any results back yet from those. We're still trying to rule things out - it could be something viral, a side effect of medication, or a return of his leukemia. We just don't know.

The doctors say we just need to wait and watch what happens. Bone marrow tests and additional x-rays really won't tell us much at this point. Open bone biopsies are out of the question due to his low immune system and the risk of infection. He does have signs that his counts are getting ready to start rebounding, but his white blood cell counts and ANC levels are still at zero.

So, we watch, and we wait. Something we're used to by now. On my way down this morning, I was pleading with God to touch little Levi and take these fevers away. He was making such good progress, but we had been fearing any sort of setback. While praying, God brought to my mind the story of Jesus walking on the water in Matthew 14. On His way out to the boat, Peter calls out and asks to walk out to Jesus. Jesus tells him to hop on out. When Peter started walking towards Jesus, he took his eyes off Jesus and started focusing on the wind and growing waves. He became frightened, and began to sink. Jesus immediately reached out and told him "You of little faith, why did you doubt?"

Right now, in our lives, the wind seems to be picking up, and the waves around us seem to be growing. But we are trying to keep our eyes fixed on Jesus, because while our eyes are fixed on Him we will not sink. I am not sure what's happening in Levi's little body right now, but I pray for Him to make our faith stronger and for help to keep our eyes fixed on Him.

Please Levi in your prayers. We are concerned, but trusting that God is in control.

God bless,
Michael, Stephanie, Caylee, and Levi

Matthew 14:22-33
22 Immediately Jesus made the disciples get into the boat and go on ahead of him to the other side, while he dismissed the crowd. 23 After he had dismissed them, he went up on a mountainside by himself to pray. Later that night, he was there alone, 24 and the boat was already a considerable distance from land, buffeted by the waves because the wind was against it.
25 Shortly before dawn Jesus went out to them, walking on the lake. 26 When the disciples saw him walking on the lake, they were terrified. “It’s a ghost,” they said, and cried out in fear.

27 But Jesus immediately said to them: “Take courage! It is I. Don’t be afraid.”

28 “Lord, if it’s you,” Peter replied, “tell me to come to you on the water.”

29 “Come,” he said.

Then Peter got down out of the boat, walked on the water and came toward Jesus. 30 But when he saw the wind, he was afraid and, beginning to sink, cried out, “Lord, save me!”

31 Immediately Jesus reached out his hand and caught him. “You of little faith,” he said, “why did you doubt?”

32 And when they climbed into the boat, the wind died down. 33 Then those who were in the boat worshiped him, saying, “Truly you are the Son of God.”

Sunday, July 24, 2011

Slow and steady...

Good morning! I hope all of you are enjoying a bright (albeit steamy) Sunday morning. We have had a nice morning so far, Levi's enjoying his bouncy seat that I brought from home and I am enjoying the pot of coffee that room service sent up with his breakfast tray. Steph is enjoying - well, of course the pleasure of my company... :)

One of the things that I have enjoyed about coming down on weekends is that each time I have been surprised and excited about the progress Levi is making. This weekend has been no exception. He was super-pumped that I brought his bouncy seat down, and is making his physical therapist's job easy by diligently bouncing away in it. He continues to eat better - yesterday's fare included a cheese quesadilla, a cheese omelet, and apple juice, along with his typical servings of goldfish crackers, chips, and cookies.

He is now sitting up by himself and we even caught him on his hands and knees this morning crawling in his crib. He is talking again, and resumed his normal practice of pointing at and asking about everything in his room and within eyeshot of our 4th floor window. It has been a very enjoyable weekend; it will be hard to leave later today, but the encouragement we get from his progress should carry us through the week.

His ANC counts are still down at 0, but his white blood cell count is slowly starting to creep up. Slow, steady progress; that's the name of the game right now. We are praying that he continues to stay away from any sort of infection or sickness, and that the chemo treatments he is receiving are doing the trick.

Caylee Grace is down with my parents this weekend and all next week, as I have to leave tomorrow for a business trip to Chicago. And no, to answer your next question, the Cubbies are not playing at home next week. From what it sounds like, she is keeping them pretty busy. Steph's parents came down to visit last night and sat with Levi while we went out on a little date (thanks guys!). We had a great meal at Longhorn Steakhouse, and the steaks were topped only by the joy of having some one-on-one time with my beautiful wife. She is doing such an incredible job; I thank God every day for her strength and perseverance as she puts her son's needs before her own and faithfully ministers to him as he progresses through this treatment.

Steph and I had a great visit yesterday with Rich and Maggie McClory, the founders of Gift of Hope Inc., a grassroots charity in Kokomo. They answered God's call to minister directly to the needs of families going through trials with critically ill children, and their charity directs 100% of all donations to families undergoing financial difficulties due to these illnesses. They provide gas and grocery gift cards, assistance with utility bills, and most importantly, prayer and face-to-face encouragement to their families. It was a blessing to speak with them, and their help throughout this journey will be invaluable. I thank God for people like Rich and Maggie, who serve as willing instruments to spread His love to those who are hurting. Check out their website when you get a chance - I will also put a permanent link to their charity on the top of our page in the next day or so. If you are looking for a way to financially help other families in situations similar to ours in the central Indiana area, I recommend you check them out.

Finally, I want so share a couple of verses with you. They center around something that is very important to our family right now: hope. The first reference was on a card that Levi's Great Grandma Gale sent, the second reference was one that jumped out at us during our devotions.

Romans 12:12
Be joyful in hope, patient in affliction, faithful in prayer.

1 Peter 3:15-16
But in your hearts revere Christ as Lord. Always be prepared to give an answer to everyone who asks you to give the reason for the hope that you have. But do this with gentleness and respect...

Clearly, we thrive on hope. It gives us a reason to get up and tackle this thing each morning. But, not only is it important to just have hope, we are told to be prepared to give an answer to those who ask us why we have hope. So, this is a challenge to you, our dear family and friends. Practice what you would say when people ask you why you aren't angry, why you aren't in despair, why you aren't depressed, why you HOPE in your times of trial. We are told that we need to be prepared to give these answers! Go ahead; ask us the next time you see us - we are practicing too!

We love you all, and hope you have the opportunity to love on your families this weekend.

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

Friday, July 22, 2011

In awe...

Hi everyone,

Tomorrow morning will be one week since Levi completed his first round of chemo! His counts are still down (which is expected), so we’re still limited on visitors actually being able to come into his room. However, he is doing very well. He is eating more – Steph was able to get him to eat waffle fries and macaroni and cheese the other night, and I know he has been enjoying the oatmeal cream pies that his Grandma Linda brought him. It is such a huge step for him to be eating better, this means that we can start weaning him off of his TPN (IV nutrition).

Steph has had him on the floor quite a bit playing on a play mat with toys from the toy room. I think she has gone through her fair share of Clorox wipes cleaning and re-cleaning the toys that Levi tosses around the room. He is sitting up very well by himself, and I was actually able to hear him talking while on the phone with Steph. That may sound like a small thing, but that’s the first time I have heard him really talk in probably 5 weeks. Caylee and I are headed down there this afternoon after I get off work. I can’t wait to see him and Steph. I think Steph and I may have a little in-room hospital date night again this weekend, although it will be hard to beat the carry out B-Dubs and Netflix movie from last weekend... ;)

These little improvements he makes daily refresh our hope and encourage us tremendously. He can beat this thing; I firmly believe that with all my heart. He is a tough little guy, and he's surrounded by an incredible and loving support network of family and friends.

There’s a worship song that many of you probably know that states, as its title and main line, “I stand in awe of You.” That phrase really does depict how I feel about God right now. I am standing in awe of the way He is walking through this journey so closely to my family. His footsteps are clearly visible in the actions we are seeing daily from you, our family and friends.

There’s a verse in John that reads:

John 13:35 – “By this all men will know that you are my disciples, if you love one another.”

Your love is taking many shapes; it is evident in the meals you have brought to Stephanie and to me (which takes a strain off of both of us!), the hospital visits you make to Stephanie and Levi (which gives her moments of encouragement that help the tougher times pass), the donations, gifts, and gas cards that you have given us (which eases so much of our financial strain), the way you take care of our pets while we are gone (which saves us so much money on boarding fees), the iPod Touch that you bought me so Caylee and I could FaceTime with Steph and Levi (which is so important for a tired Daddy and concerned big sister to see Mommy and the little brother while we're apart), the swingset you gave our kids (which enabled me to keep a promise I didn’t think I was going to be able to keep this year), and most importantly, the heartfelt notes and hugs we receive and the prayers that go up daily for our little fighter.

My family is humbled and overwhelmed by your love. We thank God many times a day for you, and hope that someday we’ll be able to repay even a portion of it. This will be a long journey, but we know we can get through it one day at a time with your support and God walking alongside us. I count you all as friends, and pray that God blesses you for your love and generosity.

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

Tuesday, July 19, 2011

Waiting quietly...

Hi everyone,

It's been a couple of days since I've posted an update... Sorry about that, I have this bad habit of falling asleep at night way before I intend to. I usually have the best of intentions and get all excited for what I'm going to get done after Caylee finally goes to bed. But, just like clockwork, I end up passing out right along with her and wake up a couple hours later realizing that I have nothing done and the dog has been wanting outside to go to the bathroom for quite some time...

So... Updates... Levi is doing pretty well, I talked to Steph last night (before and after my narcoleptic episode), and he's been alert and playing. He's spent some time in his bouncy seat and high chair, is reaching for her to pick him up, is sitting up well by himself, and even tried to stand up in his crib. He's also getting up on his hands and knees in his crib, so we are hoping he's wanting to start crawling around soon.

Steph has been able to get him to eat and drink as well. Not a lot yet, but finally something. It seems like he has an affinity for homemade baked goods, so his meals yesterday consisted mostly of chocolate chip cookies (thanks Jen!) and zucchini bread (thanks Grandma Linda!). The doctors told us that whatever he feels like eating is totally fine - as long as he's eating something. I know Steph is looking forward to some out-of-the-hospital time with Amy and Xavier later today - some sunshine and suffocating heat/humidity should do her some good :).

We also learned yesterday that they have found two potential cord blood matches. This is great news. We are praying now that the matches are close enough to use and that the donors are still available when the time comes for us to use them. What an answer of prayer!

Caylee and I are doing pretty well. Some great friends of ours donated a swing-set for our kids, so tonight a crew from work are headed over to our house to help us put it up. Caylee finally realized last night what was in the boxes, so she is beside herself with excitement. Hopefully we don't all pass out from heat stroke while working on it...

Finally, before I sign off, I have to share some scripture with you. I say have to, because it's pretty obvious that I am meant to pay attention to it. It was on the back of a card that we received on Sunday, I read it last night during devotions, and it ended up being the daily passage delivered on the DailyBible app I have on my phone. And you know me, I don't believe in coincidences...

Lamentations 3:22-27

22 Because of the LORD’s great love we are not consumed,
for his compassions never fail.
23 They are new every morning;
great is your faithfulness.
24 I say to myself, “The LORD is my portion;
therefore I will wait for him.”

25 The LORD is good to those whose hope is in him,
to the one who seeks him;
26 it is good to wait quietly
for the salvation of the LORD.
27 It is good for a man to bear the yoke
while he is young.

The part about His compassions being renewed every morning is so true. We are still early on in this journey, but there have already been rough days (yesterday was one of them), and I know there are more to come. But each morning we can wake refreshed, knowing that He is good to those who hope in him and wait quietly on His timing.

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

Saturday, July 16, 2011

Almost Saturday night...

Hi everyone,

Levi and I had a good day. Actually, like I wondered in my post last night, he did perk up later in the evening, and we spent some time talking and reading books, and even video-chatted with the Whitesell gang down at my parents' house. It was cute to see him light up when he talked to Caylee and his cousin Xavier. He was awake and alert for most of the day today - I think it may be partly due to the doctor decreasing his morphine and partly because he just feels better. We had another video chat this morning, read some books, watched videos on the computer, and played with his play laptop. The doctor also wants him to get on his feet and start building his leg muscles back up, but I think that may take awhile. He hasn't really been on his feet much, let alone walked, for the past couple months, and has lost quite a bit of muscle mass. He'll get there, though, and we brought a bouncy seat into the room to see if that will help.

It really was a good day. Not only did he officially finish his first round of chemo at 4am this morning, but it was good for him to be so active and playful, and good for daddy to be able to hang out one-on-one with my little guy. Don't get me wrong, though, we both missed mommy and Caylee. It sounds like they had a pretty good time making flower arrangements and dress shopping with my sister and the bridal party; I can't wait to see my little Caylee Grace dressed up in her big poofy princess dress for the wedding.

Levi and I enjoyed a very nice surprise visit from the Albertsons - it was great to talk with them; the encouragement we get from our brothers and sisters in Christ is invaluable. We had a lazy afternoon, and my goal tonight is to get Levi to eat something. They also decreased his TPN (nutrition) today, so hopefully that will spark his appetite a little. Steph will be arriving here at the hospital in a little while, so I am looking forward to spending the evening with her.

Levi and I read quite a few Psalms earlier today (really I was reading, he mainly just wanted to turn pages). I have so many of them highlighted, but two passages stuck out again today. I know I have referenced them before, but they are worth referencing again.

Psalm 34:17-22
17 The righteous cry out, and the LORD hears them;
he delivers them from all their troubles.
18 The LORD is close to the brokenhearted
and saves those who are crushed in spirit.

19 The righteous person may have many troubles,
but the LORD delivers him from them all;
20 he protects all his bones,
not one of them will be broken.

21 Evil will slay the wicked;
the foes of the righteous will be condemned.
22 The LORD will rescue his servants;
no one who takes refuge in him will be condemned.

Psalm 86:6-7

6 Hear my prayer, LORD;
listen to my cry for mercy.
7 When I am in distress, I call to you,
because you answer me.

The thing that sticks out is that we are not promised a life without trouble; we are, though, promised that God will hear us when we cry out to Him in our times of trouble. I am thankful that this is true, and am taking comfort in the fact that He is true to His word.

I wish you all a blessed weekend; enjoy the summer sunshine, and love on your families!
Michael, Stephanie, Caylee, and little Levi

Friday, July 15, 2011

Just the two of us...

So, I wish I could give you an awesome account of how Levi and I spent our day. My list would have probably included activities related to motorcycles, baseball, and hunting (three of my favorites). But instead, our afternoon and evening (to this point) were filled with what he needed, not what I needed. And that is - rest. He has been sleeping soundly most of the day, and after I get past the unrealistic things I had in mind, that really does add up to a pretty good day for the little guy.

We did get some hang out time early this afternoon - we talked about the cars outside and read some books, and I got quite a few laughs and smiles. I love those; I wish there was a way I could bottle them up and take them home to enjoy on some of the tougher nights. And who knows; the night is young, it's hard telling how the rest of the evening will go!

As you probably guessed, Caylee and I made it down here just fine. I'd like to give a special thanks to Jenny and Brian, who sponsored this trip with the gas card they gave us. Steph even talked me into bringing her sewing machine down, so before too long the peaceful pediatrics wing will be humming with the sounds of fervent sewing as Steph cranks out project after project... Ok, maybe that's a little exaggerated, but probably not by much...

Steph and Caylee headed down to my parents' house around lunchtime, and it sounds like things are going pretty well there. I hope they have a great time there, Steph sure deserves a night away from the hospital.

Levi's white blood cell and ANC counts are down to zero, or close to it anyway. The doctors confirmed that he is right on schedule, and for the time being he doesn't need any adjustment on his central line. I always make them sum things up for me, and the summary I got was "so far so good." I'll take that. We are being ultra-careful with the prevention of infections and sicknesses; barring any setbacks, his counts should start to build back up after 7 - 10 days (or so). The doctor also told us that we should see him continue to feel better after these counts rebound.

We also found out today that none of us are matches for bone marrow. Steph and I didn't like that news very much, but the specialist reassured us that things were ok and that we would just look to the bone marrow and cord blood bank for potential matches. I have seen several of our friends join the list and encourage others to do so as well; so, from a daddy whose little boy will need it - thank you. Please keep up the good work!

Finally, I realized this evening, as I watched Levi sleeping peacefully, sitting next to a window looking out on a perfect day, that I have been asking for a lot of things lately. Tonight, instead of writing down a laundry list of things I want or need, I am asking you to praise God with us for what He has done and continues to do.

So taking the place of specific prayer requests, I am instead sharing my list of specific praises. And as I begin to write, I am tearfully overwhelmed with the fact that I have so, so much more to be thankful for than I have actual needs.

- I thank God that He postponed this battle for us last year and gave us another year for Levi to be stronger and more capable of fighting this disease.

- I thank God for the knowledge that He is in control of Levi’s health, well-being, and future.

- I thank God for the incredible staff of doctors and nurses in this hospital that are doing everything in their power to make sure that Levi is receiving the best care possible and that we are comfortable.

- I thank God that He has provided the resources needed so that my family can stay in frequent communication and continue to drive back and forth between home and the hospital to spend time together.

- I thank God for the family and friends that he has placed around us to lift us up in prayer, meet our needs, and support my family in this trying time.

- And finally, I thank God for each and every member of my family; my beautiful wife, who is my source of peace and calm and who loves me unconditionally, my incredible daughter who breathes life and sunshine into my dark times, and my little Levi, who has shown me more of who God is than any book or sermon could ever provide.

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

Thursday, July 14, 2011

Heading south in the morning...

Hi everyone,

I am pleased to tell you that Levi continues to get better. Caylee and I video-chatted with Steph and Levi last night on Skype, and he was reaching for us through the computer and was playing with Steph. He was supporting himself very well on Steph's lap, and seemed to really enjoy talking to his big sister. It was great to see him so alert and active. I talked to Steph a little while ago, and she said he is wanting to be held again and was waving and smiling at his reflection in the window. She snapped a couple of pictures of him sitting up in bed, and he even ate most of a cookie and some goldfish (the cracker-kind, for those of you without kids...). He finally realized he can take the oxygen sensor (which glows red) off his toe and play with it, so I am sure the nurses are loving that. These are all very encouraging signs, and it is great to see him feeling better.

The chemo is working right on schedule - his white blood cell counts and ANC (immune system level) have bottomed out, which was expected. He received a platelet transfusion yesterday to keep that count up. This means we are nearing the end of the first round of chemo (which will be done on Saturday), but it also means that we have to be extremely careful about preventing him from catching any bugs or sicknesses. Part of this prevention is limiting visitors. So, just be warned that if you stop by the hospital, you may not be able to see him (don't take it personal!).

Steph has had several Indy-area CMA members stop by to visit and pray with her (thanks guys!). She and Levi are also enjoying the cards and encouragement you are sending. Kind words go along way when you're cooped up in a hospital room. She is excited to take a couple of days off this weekend to go flower and dress shopping with my little sister and the rest of her bridesmaids to prepare for her wedding later this year. I will be taking the hospital shift for most of the weekend - Caylee and I are headed down in the morning and Steph will take Caylee on down to my parents' house. This will be the first time I have been in the hospital by myself with Bub, so hopefully it goes well and the nurses don't get too fed up with my barrage of questions and sarcasm... I am not sure what we will do - I think Levi needs some quality guy time though, so I may take down some hunting videos and Harley catalogs for him to enjoy.

Caylee and I are still hanging in there; we went to the fair last night and ate dinner. The original plan included a walk through the animal barns, but she stopped me at the entrance to each animal barn and wouldn't let me go in because they were too stinky. So, that shortened our fair visit tremendously (I am not much for fair rides). Instead, we got some ice cream and played in the park for awhile. Tonight we headed up to the lake with the Bennetts to grill out, swim, and go for a boat ride. We had a good time, but sure missed Steph and Levi. I can't wait until we're all back together as a family again. One of our doctors keeps mentioning that maybe Levi will get to come home in between the 1st and 2nd rounds of chemo, but the other doctor and the nurses are saying that rarely happens, so we are being "cautiously optimistic" and hoping that it comes true.

Thank you all for your continued prayers and support. I will try to give you all another update tomorrow night to let you know how Levi and I are doing during our guy time.

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

Tuesday, July 12, 2011

Tuesday's gone with the wind...

Hi everyone,

Week one of Levi's chemo is officially done. Only three more days of this round, and I am happy to report that he still has his hair and seems to be getting a little stronger and more attentive. Yesterday after work I went down to see him with Wally and Megan Bennett, and we were able to take Steph some dinner and have a good visit with her and Levi. He was doing pretty well; tired, but we were able to coax some smiles out of him before we left. It was a pretty late night coming home, (made more interesting by driving through an awesome storm), but it was a much needed time with great friends. Special thanks to Cale, who picked out Levi's Chicago Cubs Pillow Pet. Steph also enjoyed a visit from a sweet couple in our CMA chapter earlier in the day, which really brightened her afternoon.

She and Levi had a good day today, although I think both of us were struggling a bit this evening being away from each other. It sounds like his little attitude may be coming back again, he even tried to throw his binky on the floor as a sign of protest when Steph tried to brush his teeth. As strange as it may sound, Steph loved to see that. She also got a visit from Phil and Marlene, our CMA Area Reps, who stopped by to say hi and pray with them (thanks guys!). Things are ok here on the home front, Caylee and I went and terrorized the public library for awhile tonight, and will probably head to the fair tomorrow night to sweat and look at the animals.

I do have some specific prayer requests for all of you to pray over...
1) Levi seems to be having some trouble with his central line. Not sure if they are going to try to redo it or not, surgery is not always a good thing when your immune system is suppressed. Please pray that the problems clear up and that they won't have to mess with it - it's how he is getting his chemo, nutrition, pain meds, antibiotics, and his blood drawn for tests... Basically, it's the key to his treatment.

2) Pray that Steph and I can stay healthy. It seems like we are always more prone to getting colds or worse when we're tired, and right now we're exhausted. I am super-paranoid that I am going to come down with something and not be able to visit him; I am normally not a germaphobe or a clean freak, but I have invested in large quantities of Germ-X hand sanitizer and am probably close to OD'ing on vitamin C.

3) Pray that they find a bone marrow match. It is kind of unnerving waiting to hear, so we are just trusting that God is in control of this and that the bone marrow transplant will be possible. As bad as I am with needles and medical stuff, I selfishly really hope it's me. Then I will feel like I am doing something to help. But if not, I just pray that someone is close enough to be a donor.

Thanks everyone. Your prayers and support give us the strength we need to take this one day at a time. Love you all,
Michael, Stephanie, Caylee, and little Levi

Sunday, July 10, 2011

There will be good days...

Hi everyone.

So, Levi is now officially halfway through his first round of chemo. Today was day 5 of the 10 day course. They told us when we started that he would have good and bad days. I am very thankful that today was a good day for him...

Steph, Levi, and I all slept pretty well last night. We rolled out of our respective day bed, hospital crib, and chair bed fold out thingy around 9 am this morning. Levi slept pretty well - I think they finally got his morphine dose correct; he seems to be much more comfortable. Jenny came down to visit us later in the morning, and Steph stepped out with her to take a walk outside and eat lunch out on the patio. I got to hang out with my little dude, he actually reached for me from the crib and wanted me to pick him up. We walked around the room a little, and had fun watching the cars drive by on the highway outside our window. He was supporting himself in my arms, which is much better than the past couple of weeks. We talked about the trees, cars, and massive heating/cooling unit on the roof. He talked and smiled and even laughed a little, then gave us all kisses. It was awesome - like having our boy back for a little while. A smile goes a long ways these days.

Steph's parents came down after lunch, and brought our little whirlwind Caylee. She loved on Levi for a little while - it is so sweet to see him light up when she's around. They have such a strong connection, and whenever she's in the room she has his undivided attention. We had a great visit with her parents, and Levi was alert and attentive the whole time and was happy to be held. They left Caylee with us, and for a brief period of time we were all four together as a family. That doesn't happen very often, so this tired mommy and daddy tried to soak up the moments as best we could.

Caylee and I left around 5:45 or so, and stopped in Kokomo at McDonald's to eat and let her play in the playplace, which she thoroughly enjoyed. We made it home around 9 (I think) and it didn't take long for her to pass out in bed. I just talked to Steph on the phone, and she said they were getting ready to give Levi some more blood to get his hemoglobin back up a little. That always helps perk him up. Steph's cousin Tiffany brought her dinner tonight, which she greatly appreciated (thanks Tiffany!).

We both want to thank you all for your generosity. We are so blessed to have family and friends who support us and pray for us so faithfully. Your gifts are so very appreciated, and the gas cards and money you have given are going directly to our expenses for travel, meals, and bills. Thank you for your encouragement too, the kind words warm our hearts and remind us that we're not alone in this battle.

Finally, here's a verse that has given me strength today.

Deuteronomy 31:8

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."

Like the doctor told us today, this is a marathon, not a sprint. We have to pace ourselves and take this day by day.

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

Saturday, July 9, 2011

Act I, Scene IV...

Hi everyone,

Today was day four of Levi's first round of chemo. Levi is doing ok, but still seems like he is in a lot of pain. They have upped his morphine dose, and I think it may be helping. We were worried that he might be getting too much, but the doctors reassured us that the doses they were giving him were fine and that the priority was getting him comfortable. Seems like the chances of any sort of addiction are very slim. The staff here is great, and they're monitoring him closely to make sure all the medicines and nutrients he is getting are doing the trick. His blood counts are still up in the normal ranges now, but they are starting to drop, and we should see them dip pretty low around days 7-10 of his treatment.

I came down to spend the night with Steph and Levi today around lunch time. It was great to see them both, and after Levi woke up a little he wanted me to hold him, which made me feel good. No matter how sick or weak he is, those little blue eyes of his are powerful, and he gets me every time. We also had a visit from Nate, Amy, and Cyrus. They spent most of the afternoon and evening with us, and Steph was even able to get out a little and do some shopping at the local Target. I think the fresh air and sunshine did her some good. Steph's Uncle Jeff and Aunt Sharon brought in donuts and coffee this morning for Steph, and brought us some awesome lasagna and garlic bread for dinner (thanks guys!).

Steph is a trooper - she is diligently staying by Levi's side making sure he is comfy and comforted. She was able to finish up some craft projects she had going, and is now working on a massive quilt project that consists of a whole lot of needlepoint. She also acquired a Kindle from her Aunt Sharon, which should help pass the time.

Caylee and I are doing pretty well at home. As you know, we got home Thursday night, and things were in good order thanks to our awesome neighbors Ken and Sharon. Several members from our CMA chapter came over to pray with us that evening, and it was good to see them all and give them updates. Last night Caylee and I went to the lake with the Bennetts, and enjoyed a cookout, swim, and boat ride. Made things feel pretty normal again, although we missed Steph and Levi like crazy. They also took Caylee to Indiana Beach today for the company picnic, and from how it sounds she had a great time with them and her buddy Cale.

Steph's parents are bringing Caylee down tomorrow, and that will really brighten Steph's day. Being apart as a family is already hard, so we are treasuring the moments we have together, even if our surroundings or situations aren't ideal. I look forward longingly to the time we can all be back home together, just the four of us, hanging out and playing, laughing, and loving one another.

Many of you have asked what our accomodations are like here at Resort Riley. Here are a couple of pictures, one of the hospital from the outside, one of our room (please don't mind the mess), and one of the view out of our window (looking north towards US 31). It really is a nice hospital, it was built new in 2005, and looks more like a hotel inside than a hospital. We are thankful to be at the north location and not downtown; it makes things so much easier and shaves at least a half hour off the drive from Warsaw.

Some of you have also asked about sending cards and letters. This is welcomed and greatly appreciated. You can send them directly to Levi and Steph here at the hospital - I have posted the mailing address on the right side of this web page, but here it is again...

Indiana University Health North Hospital
Attn: Levi Whitesell, Room B410
11700 North Meridian Street
Carmel, IN 46032

Please refrain from sending fresh flowers, fresh fruits, and fresh vegetables (not sure who really sends veggies - nothing says "thinking of you" like a head of lettuce, but it must happen :). These items tend to harbor bacteria and other bugs that won't be good for our little guy once his immune system is suppressed.

Thank you for continued prayers. Please pray specifically that we can find a bone marrow match for Levi, that Steph and I can stay healthy so that we can stay with Levi, and that God grants us safety and traveling mercies while we are on the road. We are doing pretty well so far, and are relying on Him for continued peace, strength, and wisdom. In closing, I would like to leave you with a couple of passages that give me context for what we are going through and hope for the future.

Romans 5:1-5
1 Therefore, since we have been justified through faith, we have peace with God through our Lord Jesus Christ, 2 through whom we have gained access by faith into this grace in which we now stand. And we rejoice in the hope of the glory of God. 3 Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; 4 perseverance, character; and character, hope. 5 And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us.

Romans 8: 18-19
18 For I consider that the sufferings of this present time are not worthy to be compared with the glory which shall be revealed in us. 19 For the earnest expectation of the creation eagerly waits for the revealing of the sons of God.

We are reminded that no matter how difficult the times are that we are experiencing, it cannot compare to what lies ahead. We always have hope. I continue to thank God for His evident hand in all of this, and rest in the knowledge that He is in control of little Levi's battle.

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

Friday, July 8, 2011

More info on bone marrow testing and donations...

We have been overwhelmed with people offering to be screened to see if they were a match for Levi's bone marrow transplant. First of all, thank you for your selfless willingness to help out our little boy. I have tried to get a little smarter about the bone marrow testing and donation process, and here is some information.

So far, Stephanie, Caylee, and I have been tested. That's where they draw the line for testing for specific patients. They do not test grandparents, aunts, uncles, or even half-siblings simply because the odds of finding a specific match for that patient are pretty low. They instead will go to the bone marrow donor registry to look for a match if one is not found in the immediate family.

HOWEVER... This does not mean that your bone marrow is not needed or that you shouldn't be tested. Quite to the contrary - if you want to help Levi and patients like him, we strongly urge to you to prayerfully consider being added to the bone marrow registry. It is a great way to save lives. Here's some additional info...

One of the best places to start, especially for you Indiana residents, is This website has tons of information about donating blood, platelets, and bone marrow.

At the bottom of the page, there is a link titled "Be the Match". This page will provide you with all kinds of info on what it means to be added to the bone marrow registry.

There is a startling graphic on the page that shows the need for bone marrow donors, especially in minority patients. The likelihood of finding a match if you're caucasian is fairly high - 93%. But, the likelihood if you are African-American is scary low - only 66%. I strongly encourage any of you who meet some of these minority statuses to sign up to be a donor and be added to the bone marrow registry.

Further down on the page they list three ways to help. The first is to be added to the bone marrow registry, which is as easy as completing some paperwork and doing a cheek swab. Registration instructions are on the page. Next, you can donate financially. The process for adding someone to the registry costs about $100, which is prohibitive for many potential donors. Your financial donation could be the one that adds the right person to the registry, which in turn could help the right child win his or her battle with leukemia. The third way you can help is to host a bone marrow drive. There is contact info listed on the page if this sounds like something you may want to do.

I believe that there is a cost for some people to be added to the bone marrow registry. However, I did talk to a nurse who mentioned that if you donate platelets, you can ask to be added to the registry and they can add you for free. Not sure if this works, but definitely worth a shot!

If you do not join the bone marrow donor registry, please at least consider donating blood and/or platelets. These are just as crucial for cancer patients - Levi has had three transfusions so far and is only on day 3 of his chemo treatment. All patients, including cancer, trauma, or transplant patients, may need blood at some point. Please consider donating.

If you are outside of Indiana, a simple Google search can help you find the necessary steps for being added to the registry. Your willingness to help will save lives. If you can't find the info you need, please let me know. I would be more than happy to help you search.

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

Wednesday, July 6, 2011

Know your enemy...

So I have to admit that as I wrote the title to this post, I had the song playing in my head (probably a sign that I've listened to a little too much Rage Against The Machine in my lifetime - not a surprise to those who've known me for awhile). So if this post comes out sounding a little militant, that's probably why. But you know what, I think that's ok. Because I am viewing this as a fight. Something has attacked my little boy, and we're pulling out all stops to defeat it. Plus, this is the phase we find ourselves in at the moment... We're studying the enemy, learning as much as we can about it, figuring out its weak spots, and attacking. Our enemy today is leukemia, and our weapons are chemo, knowledge, and most importantly prayer.

Today our physical attack began. And to be honest, it felt good. Levi had surgery this morning to put in his central line, take another bone marrow biopsy, and perform a spinal tap and chemo injection into his spinal fluid. He came through just fine and recovered quickly. Mommy and Daddy were even able to enjoy a nice lunch outside in the sunshine while he was in surgery. Little quiet times together like that go a long way.

They started chemo this afternoon, and the specialist gave us a run-down of all the medications they were giving him. Some of the medicines actually make up the chemo treatment, while others seem more like support medications and do things like prevent mouth sores, nausea, and break down uric acid. Let's just say that between these meds, his TPN, and morphine, he has a lot of different drugs going through his IV. It must all be doing the trick though, as he is sleeping quite soundly now in his crib.

Steph's dad brought Caylee down this afternoon, and the three of us had our blood drawn to see if we were matches for Levi's bone marrow transplant. Steph did well with the blood draw, but Caylee and I didn't handle it so well. I guess she takes after her daddy in that neither of us are very fond of needles. We are praying that one of us is a match and that we can cross that concern off our list. Speaking of bone marrow transplants, I want to thank the overwhelming number of you who have contacted us asking if you could be tested to see if you were a match. Your willingness to help brought tears to our eyes. I am learning more about the bone marrow donor registry list and the testing/donation processes, so I will post what I find on a separate page on this blog very soon. I was originally planning on posting the info tonight, but not sure I will be able to keep my eyes open that long. It may have to wait until tomorrow.

We had a good evening, my parents and Cyrus came up to visit. They brought us some BBQ from Famous Dave's, which was a very welcome break from hospital food. We even have a few corn bread muffins left over, which should go well with waiting room coffee in the morning.

We're not sure how the rest of the week will pan out, but as of tonight I am planning on heading back up to Warsaw tomorrow during the day and picking up Caylee along the way. Steph will stay down here with Levi, but we will probably be heading back down during the weekend to spend time with them.

Again, I want to thank you all. We are receiving many notes of encouragement and offers to help, and we are not always able to respond to them all right away. But please do know that every time our phones buzz with a message, comment, email, or text, it uplifts our spirits and brings a smile to our faces. We do love you all.

In closing, I wanted to leave you with another passage from Psalms that we read last night. I am finding that there is at least one or two chapters (if not more) in that great book that seem to meet us exactly where we are physically, emotionally, or spiritually. These passages put into words those feelings that are so often difficult to express. We are drawing strength daily, so I hope these verses encourage you as well.

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

Psalm 25:16-21

16 Turn to me and be gracious to me,
for I am lonely and afflicted.
17 The troubles of my heart have multiplied;
free me from my anguish.
18 Look upon my affliction and my distress
and take away all my sins.
19 See how my enemies have increased
and how fiercely they hate me!
20 Guard my life and rescue me;
let me not be put to shame,
for I take refuge in you.
21 May integrity and uprightness protect me,
because my hope is in you.

Tuesday, July 5, 2011

Round 2.... Fight!!

Hi everyone,

We made it down to Riley this morning around 9:30. Thanks to Amy for dropping Caylee off at Steph's mom and dad's house, which made our morning much smoother. We were able to meet with the doctor right away, who wanted to talk to us before we did any tests or gave Levi IV fluid. That kind of tipped us off...

The doctor confirmed that the diagnosis is AML Leukemia. Apparently the tests that had come back negative before were negative because the leukemia is appearing in the bone, not the bone marrow (we asked if this was good or bad, and the doctor told us it doesn't really make a difference - just makes it harder to diagnose). Since it wasn't in the bone marrow, the white blood cell counts and the bone marrow tests were coming back clean.

This of course wasn't the news we were looking for. But, honestly, we are relieved to finally have an answer, give this thing a name, and start fighting it. Steph and I are at peace this afternoon, because we finally know what's wrong with our little guy and we know that God will get us through it. We just want to get our little guy feeling better; he has lost so much weight, and has absolutely no energy, appetite, or desire to play. For those that know Levi, this is very unlike him.

So here is the plan as of this afternoon. Levi was admitted around lunch time, they gave him some morphine (which we were thankful for - he was in a lot of pain), and have done a few additional blood tests, an echocardiogram, and a kidney function test to get baseline data before they start treatment. Later this evening he will get an EKG, a blood transfusion and also TPN, which is a nutrient-rich IV supplement that will help with his nourishment. Then, tomorrow morning they will take him to surgery to put in a central line, take another bone marrow biopsy, and a spinal tap. Tomorrow night they will start chemo treatments. At some point (probably tomorrow) they will draw blood from from me, Steph, adn Caylee to see if any of us would be a match for future bone marrow transplant.

There will be multiple rounds of chemo to combat this disease. The first round will be ten days long, but he will need to stay in the hospital for approximately 30 days because his immune system will be suppressed. The entire course of treatment will probably last 6 - 8 months. This all sounds bad, but here's the good part... Levi should start feeling better within 3 or 4 days from ths start of his chemo. We can't wait to get our little guy back. Additionally, the success rate of this chemo treatment is very high, and the outlook is positive. What's more, Levi won't remember any of this when he gets older (although I am pretty sure it will be indelibly inked on mommy and daddy's memory). Finally, we are in a really good hospital and are being showered with attention and support from the nursing and child life staff. We have a great deal of confidence in our doctors, and know that Levi will receive highest level of treatment here.

We have alot of details, logistics, and planning to figure out in the next couple of days. As of right now, I think I will be heading back home with Caylee so that I can go back to work. Steph will then stay down here at the hospital with Levi. There will be lots of driving and late nights, but we'll figure it out. If any of you have experienced things like this and have any bits of wisdom or advice to share, we're all ears...

I know this news will hit many of you pretty hard. But be encouraged, because God has a plan for our little boy, and He alone holds Levi's body, health, and future in His hands. Please continue to pray for Levi, but do so with thanksgiving that we finally have an answer and that we can continue to share his story and God's love to those we will be in contact with here at the hospital. I have already had the opportunity to share his story with someone here today and encourage a sister in Christ. Please pray that God will be glorified through this trial in which we find ourselves. Please also pray that our little family will be able to withstand the difficulty of travel and time apart.

We will be updating this blog frequently. We thank you from the bottom of our hearts, and love you all. Remember, our God moves mountains.

Michael, Stephanie, Caylee, and little Levi

Monday, July 4, 2011

Back from the land of Goshen, onward to Indy in the morning...

Hi everyone,

First let me wish you all a happy 4th of July. I thank God for the opportunity to live in a free country, and hope that it stays that way for generations and generations to come. A special thank you to all our men and women in the armed forces who protect these freedoms from all enemies, foreign and domestic.

And now, a quick update on our weekend and the next steps for little Levi...

Nate and Amy came up this weekend, and Nate and I got to go work with our CMA chapter at Hawg Waller for the weekend. It was nice to do a little camping, a little riding, and a lot of talking and hanging out with the crowd out there. We had a lot of good conversations, and I know seeds were planted. Amy and Steph hung out here at home with the kids, although they were able to sneak in a trip to the quilt shop on Saturday.

Levi was pretty ouchy this weekend, and decided that he didn't want to eat. We thought at first that it was because of some of the pain medicine he was on, so we stopped giving him the medicine and switched back to Tylenol and Motrin. But unfortunately it really didn't seem to help much. Today he had no interest in eating anything - about all we could get down him was some yogurt juice smoothie stuff. We decided to call our doctor at Riley to see what he thought, and after some confusion on their part on who they were paging and a few hours of waiting on our part, we finally spoke to the doctor. He thought we should get some IV fluids in him to prevent dehydration, so we took him up to E.R. at Goshen Hospital. We were up there for several hours; they performed a chest x-ray, hooked him up to an IV, and did bloood and urine tests. Everything came back ok except that his hemoglobin was low again. They discharged us and we made it back home around 10pm.

So... it looks like we're heading back down to Riley tomorrow morning. They want to see us at 10am, which means another short night and early morning. It sounds like they may give him another blood transfusion if his tests show low hemoglobin again. We should also get his biopsy test results back tomorrow (finally!). My guess is that he will be admitted, so we are going to pack for a stay and pray that it's unecessary.

Please keep us in your prayers. We are very tired, and tomorrow has the potential to be a stressful day. We are trusting God, and know that He will see us through this. During our church service out at the rally this weekend, our chaplain reminded us that God doesn't promise to deliver us from the fire, but rather promises to walk through the fire with us. I am reminded of the story of Shadrack, Meshack, and Abednego in the book of Daniel in the Old Testament, and know that the fourth man in the fire is the same that will see us through this trial.

Thank you all for your prayers and support. A special thank you to our family - all of whom are making sacrifices to keep us company, calm our nerves, and watch our little Caylee Grace as we trek back and forth between hospitals and home. We love you all, and will keep you posted. Hopefully we can share results with you tomorrow.

Finally, the verse today that has given us comfort is this:

Psalm 46:10

He says, "Be still, and know that I am God;
I will be exalted among the nations,
I will be exalted in the earth."

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