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.”


  1. Thinking of you all and hoping things turn around quickly for little dude. Please give him a big kiss and hug for me and tell him his Chris loves him very much. Do not hesitate if there is anything we can do to help.


  2. Our thoughts and prayers have been with little Levi throughout the day and into this evening. God is always faithful to bring His word to our hearts when we need it most. Know that He has placed hundreds of brothers and sisters in your lives to "share your burden" with you. As Chris said do not hesitate if there is anything we can do to help. God bless. Rich & Maggie