Wednesday, September 28, 2011

Wake me up when September ends...

Hi everyone,

I can't believe September is almost over. The past few months have been a blur. It feels like it should still be mid-June, and we should be looking forward to a couple of hot months and a trip to the beach. But instead, it's in the mid-50's and low-60's, and the rainy wind is starting to cut through our sweatshirts. But, with the quick passing of days - rolling into weeks - rolling into months - rolling into seasons, also comes the small spark of excitement that is starting to take hold. It is still small, and at times indistinguishable, but it's there. It's the excitement that soon we'll see the finish line. It's still a ways off, but it's out there. Just over the horizon. We just have to stay strong, keep our heads down and our hearts faithful, and confront each day with a voracious desire to do whatever it takes to bring our little boy home, healthy and happy.

So - it's Wednesday... The mid-week slump, combined with the gray skies and persistent rain that's been hanging over our beautiful Hoosier state means that everyone is tired. But we're hanging in there. Steph and I enjoyed a nice date night on Saturday night - a big thank you to her parents who came down to sit with Levi while we were away. After getting our money's worth out of the "never ending pasta bowl" promotion at Olive Garden, we went to see Contagion. And yes, I do think it is sort of ironic that we picked a movie about a deadly disease, but oh well, it was the only thing that looked remotely interesting. I thought I was going through a lot of hand sanitizer (or as Caylee calls it - "hanitizer") before, but after seeing that movie I have doubled my hand sanitization habits. And I will never, ever touch the poles in a subway car or on a public bus again. Despite the OCD-inducing movie, we enjoyed the time together.

Our actual anniversary was yesterday, the 27th. I had decided on my way home on Sunday night that I was going to try to surprise Steph on our anniversary, so with the Bennetts watching Caylee for the evening, I headed down to see her after work. It was a lot of driving to fit in one evening, but it was worth it to see the surprise on her face when I walked in the hospital room. It was a short visit, but after a romantic meal of cafeteria cheeseburgers and Diet Dr. Pepper, we sat back and watched Levi buzz around the room playing basketball and chatting up a storm. He had a platelets transfusion earlier in the day, and was feeling great. It was cute to see him acting goofy, trying to make us laugh, and destroying Steph's collection of quilting magazines.

Caylee and I got home pretty late last night, so needless to say we were both wrecks this morning. But, somehow we drug ourselves out of our beds, and I think I even got her in matching clothes. She didn't last long tonight, and at this rate I don't think I will make it much longer either.

Levi's counts are still slowly coming down. He had an ANC count of around 40 this morning, so there are some neutrophils hanging in there. We think his counts will bottom out, but we're not for certain. You all know the drill by now - once they're down, we just have to wait until they build back up again. He still has his appetite, is very energetic, and seems to be feeling fine. For that, we give God praise, as we know He is answering our prayers and walking with Levi through this treatment every step of the way. I am heading to Los Angeles next week for a conference, so please keep us all in your prayers for that as well. I am looking forward to the trip, but it is tough to be away from home at a time like this.

In closing for tonight, Steph and I want to thank you all for the anniversary well-wishes. There are so many of you out there that we look up to as examples for our marriage. We once again thank you for prayerfully supporting our family, and thank God for the support that we have in this battle. Levi is a tough fighter, and I can't wait to see what God has in store for him.

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

Saturday, September 24, 2011

All you need is love...

Ahh, the weekend...

Hope everyone is doing ok - as I write this post, Levi is passed out in his crib and Steph is passed out on her daybed/loveseat/couch thing in the room. So, I've got my earphones in and ready to write you all a good ol' update...

We had a pretty good week, Levi is doing well. His counts are still up there - a couple of them are coming down a little, but his ANC is still above a thousand. The doctor told us today that it was unusual for the counts to stay high after a round of chemo, but since his MRD came back negative, they're all good cells, so nothing to worry about. I guess we're not sure if he's going to bottom out, and if he does, it may take a little while. Levi's fine with that, though, as he has been roaming the halls and hanging out with the nurses.

He really is something to see when he walks/runs down the halls. It's like he owns the place with his little chest stuck out. Every once in awhile I think I can even detect a slight swagger... Of course, the nurses all love him, so he's pretty much got the run of the place. He'll walk right behind their nursing station to hang out with them or see if there's anything he wants to play with. Somehow we have a calculator in the room right now that he swiped from their desk drawer. He even tried to sneak a kiss from one of the nurses last weekend. He flirted, waited for the right moment, then went for it all puckered up. It was pretty cute; I'm just hoping we don't get a hostile work environment report filed against him. They had a snowcone party in the play room this past week, here's a picture of him rocking his sunglasses and waiting patiently for his tutti frutti snowcone. It is so good to see him enjoying life, even if it is from a pediatric ward.

Caylee and I had the opportunity to walk in the Light the Night fundraiser walk in Warsaw on Thursday with the Bennetts. It was a pretty cool experience, and all the proceeds go to the Leukemia and Lymphoma Society. The walk raised over $30K. We carried a white survivor's balloon with Levi's name on it along with the red balloons for those supporting the sick.

Caylee rode with her buddy Cale in the wagon, and as soon as the walk started, Levi's white balloon, which had been flying high the whole time we were staging, sunk down a little and hovered right with Caylee for the whole walk. It was an emotional reminder of how close those two really are, and how much we long for them to be together soon.

Caylee and I came down to the hospital last night. We walked in the door of the peds unit, and there was Levi and mommy, roaming the halls. The kids sprinted towards each other and embraced, then got right down to playing and turning the normally peaceful 4th floor into a rowdy raceway. Caylee hopped in a wagon and Levi pushed her up and down the halls, both of them laughing and squealing with delight. I made a few feable attempts to keep them quiet, but realized pretty quickly that all attempts were futile and just let them be brother and sister for awhile.

Nate, Amy, Xavier, and Cyrus arrived at the hospital a little while later, and we enjoyed a nice visit with them in the playroom while the boys and Caylee deconstructed that room as well. Levi just soaks these moments up, playing hard with his sister and little cousin for a few minutes, then taking a couple of moments to sit on someone's lap for just a bit to get loved on. They took Caylee back down south for the weekend; we're very appreciative of their help. Steph's parents are coming sometime this afternoon, and we're going to try to sneak out for dinner and a movie. Not sure where we'll eat or what we'll see, but I honestly don't really care. I just want to spend some time with my sweetheart.

I wanted to thank you all again for the outpouring of love that you shown us. I know I've talked a lot about faith in the past couple of weeks, but love - unconditional, unending, unwavering love - is so important to us right now. Love that Stephanie and I have for each other, love that we have for our children, love that we get from our family and friends - all is essential. Without it, this journey would take a turn for the darker; we would feel isolated, demotivated, and worst of all, defeated. This would not be good for Levi or his recovery. Here's one of my favorite passages; it's familiar to most people, as a portion of it gets read at most weddings. But read it with a different context in mind; read it and apply it to your current situation. What are you doing right now - today - this weekend... Does any of it matter if you don't have love? Or do all of your actions become hollow because there is no love behind them? This passage tends to jolt me out of my daily routines, making me examine whether there really is any true meaning behind my routines and mindless activities.

1 Corinthians 13

1 If I speak in the tongues of men or of angels, but do not have love, I am only a resounding gong or a clanging cymbal. 2 If I have the gift of prophecy and can fathom all mysteries and all knowledge, and if I have a faith that can move mountains, but do not have love, I am nothing. 3 If I give all I possess to the poor and give over my body to hardship that I may boast, but do not have love, I gain nothing.

4 Love is patient, love is kind. It does not envy, it does not boast, it is not proud. 5 It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. 6 Love does not delight in evil but rejoices with the truth. 7 It always protects, always trusts, always hopes, always perseveres.

8 Love never fails. But where there are prophecies, they will cease; where there are tongues, they will be stilled; where there is knowledge, it will pass away. 9 For we know in part and we prophesy in part, 10 but when completeness comes, what is in part disappears. 11 When I was a child, I talked like a child, I thought like a child, I reasoned like a child. When I became a man, I put the ways of childhood behind me. 12 For now we see only a reflection as in a mirror; then we shall see face to face. Now I know in part; then I shall know fully, even as I am fully known.

13 And now these three remain: faith, hope and love. But the greatest of these is love.

We love you all. I hope you have a great weekend loving on your families. That's all that really matters.

Michael, Stephanie, Caylee, and little Levi

Tuesday, September 20, 2011

Round 3 is over, now we wait...

Hey everyone,

Round III is officially over... Levi had his last chemo treatment yesterday morning at 2am. That's good news for a lot of reasons. He is now officially done with his eye drops for awhile (it's amazing how strong he is when you're trying to wrestle him down and put drops in his eyes!). It also means that they were able to unhook him from his IV during the day, which made him AND Steph very happy. He's not a big fan of all that tubing. So, he's back to his normal mobile self for awhile. They still have him hooked up to get fluids at night, but that doesn't seem to bother him while he's asleep. Here's a picture of him trying to help change his dressing this weekend - it was pretty cute. He didn't cry or anything, just grabbed the little wrappers and acted like he was doing it himself. He's a pro at this stuff; it really is amazing how well he's adapted to the treatments, routines, and tests he gets everyday.

I just talked to Steph a few minutes ago, and he's doing fine. He was a little cranky today, but can't really blame him for that. He is a little busy-body in that room, and enjoys his visits from the therapy dogs and keeping his room clean (a habit I hope he keeps as he grows older). He will probably get blood tomorrow, as his hemoglobin is starting to dip - a sign that his counts are starting to drop. So, we are now officially on fever watch; the doctors and nurses were amazed that he stayed fever-free and healthy after the last round, but we're expecting the same this round! Please keep praying that he will stay away from sicknesses and infections; as I've mentioned before, these can really be nasty while his immune system is virtually non-existent.

Stephanie and I are doing pretty well right now. It seemed like the 5-day treatment he just went through really moved pretty quickly. Of course, we are starting to look forward to his next visit home... Caylee and I are planning on heading down there again this weekend, and I think Steph's parents are going to sit with Levi for a little while on Saturday night so Steph and I can sneak out for a nice meal to celebrate our anniversary (which technically isn't until next Tuesday).

Caylee is also doing well. She is talking about Bubby a lot this round. I think the further we get into this treatment marathon, the more she is realizing what is actually happening. She used to just ask where Bubby and Mommy were, but she doesn't do that anymore. Instead, she will see something on TV or think of something that reminds her of him, then talk about how Bubby likes this or says that. She is concerned, but she always makes sure we pray about Bubby getting better when we give thanks before our meals or during our bedtime prayers. She is doing very well in preschool; it is amazing the progress she is making. I just had to include this picture of her this evening - riding her bike around the neighborhood with her helmet and motorcycle glasses.

Thank you all for your continued love and support. We continue to get cards and gifts in the mail - they are such a source of encouragement for us. Also - we have had many ask us if they could bring us meals while Steph and Levi are in the hospital, so I wanted to let you know that we got hooked up with a website that helps with the coordination of that. It feels strange to be posting this, but I know that many of you are wanting to help and continue to ask, so I thought I would share it with you. Here's the link - I think you can just sign up for meals if you would like. Also - if you know of any other families facing tough situations, you can sign them up on this website too; it's a pretty neat system.

Alright, that's enough for tonight... Time to go pass out in bed. We love you all, and thank you again for all that you do for us. God is good.

Michael, Stephanie, Caylee, and little Levi

Saturday, September 17, 2011

Round II test results...

Hi everyone,

Just wanted to give you a quick update on Levi's Round II test results...

The bone marrow aspiration came back clear, and the MRD came back negative! Once again, God has answered our prayers, and we give Him the glory for Levi's progress.

I just talked to the doctor, and he told me that the children with negative MRD results typically have better outcomes and greater chances for a cure. We take great encouragement in this. He also told me that out of his 30 years of practicing, Levi's last round was the easiest and smoothest he had seen.

Once again, I praise God for these great results, and thank you for continuing to lift up our little fighter in your prayers.

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

Thursday, September 15, 2011

It is well...

So, Round III has officially started. We arrived at the hospital yesterday morning (and for future reference, don’t believe me when I say that I have a new way from Warsaw to the hospital that is more fun and just as fast). Once we arrived, things started rolling pretty quickly. We took Levi to the clinic, where they performed their barrage of measurements, questions, and blood draws.

Levi decided he was big enough to do some of this on his own, so he donned a mask and rubber gloves and helped as much as he could. He is getting so used to this by now – he helps push the syringes when they flush his lines, knows how to operate their thermometers and stethoscopes, and sometimes even takes the oral meds by himself. I figure when gets older he will either despise doctors or want to become one. Everything looked good (he had even put on a little more weight), so we headed to his hospital room. He’s in the same room again – 410 – so he still gets an outside view and can see down the hall to wave at the nurses and other patients as they walk through the ward.

My mom came up to help us out – it was great having her there, both for moral and emotional support as well as an extra hand to corral Levi as we unloaded and unpacked his things. We’re getting pretty good at this now; we learned that it is much easier if you just leave everything packed in totes and stored in the van instead of getting everything back out after you get home. Just promise me, dear readers, that if you ever see a tired looking couple pulling wagons through the hospital loaded with totes, luggage, and little toddler toys, that you will never make comments like “Wow, moving in huh!” or “Did you bring enough stuff?” Chances are, they’re not there for a vacation, and would give just about anything to not have to be hauling in those loads in preparation for a long stay. Instead, just offer a smile or open the door for them. It goes over a lot better…

They performed the bone marrow biopsy and the spinal tap in his room, then fired up the chemo around 2 pm. This round will last five days, so he will finish up next Monday. Stephanie is already pretty worn out from the “chasing a toddler with an IV pole” routine, so we are glad these rounds are getting shorter, not longer. He’s not a big fan of the eye drops he gets every six hours; the nurses told us that they burn a little bit, so it also makes it tough for him to go back to sleep when they give him the drops at 2 am.

Things are going ok so far. He’s hanging in there, and proving once again that he’s a tough little dude. We are praying for good results from the tests they performed yesterday, and that he can stay away from some of the nasty side effects that can come from the stronger dose of chemo drugs that he’s getting. I am heading down there tomorrow afternoon, and will get him all to myself tomorrow night and most of the day on Saturday, as Steph and Caylee head down to Seymour for my little sister’s bridal shower.

The concept of “faith” has been on my mind a lot lately. This round is going to require a lot of it, as the adrenaline for the Levi’s first two rounds of chemo has waned, and the thought that we’re not yet halfway through his treatment weighs heavy on our minds. The Bible tells us in Hebrews 11:1-2 “Now faith is confidence in what we hope for and assurance about what we do not see. This is what the ancients were commended for.” I have confidence in what I hope for, and I am assured by what I do not see. I pray that we can achieve the type of faith that is considered commendable for those that come behind us as well. That chapter in Hebrews is awesome – it goes on to talk about the models of faith that we see throughout the Old Testament. But I want to share with you one of the models of my faith.

Last year, when Levi was first diagnosed with AML Leukemia, I found myself struggling with anger and bitterness. I would like to tell you that I was not angry with God, but that wouldn’t be true. It was one of the many forms my strong reaction to his diagnosis took. One afternoon, I knew that my heart was not right, and I prayed that God would give me a song to sing. Now, many of you know that while I have very little musical talent myself, I love music. I would rather listen to music than watch TV or read books, and usually my taste and opinion on music is the harder and louder – the better. So I halfway expected to have a fast-paced worship song come to mind that we hear in church or on contemporary Christian radio, but instead the song I was given was much simpler – and much more blunt. Here are the words – many of you know it well…

When peace like a river, attendeth my way,
When sorrows like sea billows roll;
Whatever my lot, Thou has taught me to say,
It is well, it is well with my soul.

My sin, oh the bliss, of this glorious thought!
My sin, not in part, but the whole,
Is nailed to the cross and I bear it no more,
Praise the Lord, praise the Lord, O my soul!

And Lord, haste the day when my faith shall be sight,
The clouds be rolled back as a scroll;
The trump shall resound, and the Lord shall descend,
Even so, it is well with my soul.

Of course, the song is “It Is Well With My Soul,” by Horatio Spafford, and there are more verses than what I’ve written above. In the 1870’s, this guy’s life took a turn toward the tragic. He lost his only son, lost everything in the Chicago Fire, and then lost all four of his daughters after sending them, along with his wife, on a ship to Europe for a family trip. After being devastated by the news, he set sail to Europe to be with his distraught wife and wrote the words above while passing the place where his daughters perished. My reaction to this story, after first reading about Horatio, was “are you kidding me?” He lost everything. Most would have nodded their heads in understanding and sympathy if he turned bitter and rejected his faith. But he didn’t. Instead, he poured it out in his words, and I can picture him on the deck of the ship with tears running down his face looking up towards the heavens and telling God – “you know what, I’ve seen tragedy, but I continue to place my faith in You and all this stuff that’s going on – it’s all well with my soul.” He knew he had victory, and his faith in the God’s sovereignty and master plan continues to amaze me.

So – I know I am rambling, but this is a song that I have sung, prayed, and recited countless times. I even have it written on note cards where I can see it daily. It continues to bring tears to my eyes when I hear it in church, and when my time on earth is through, it will be played at my funeral. It snuck its way back into my head yesterday on the drive down to hospital. I pray that I can have faith like Horatio, and I trust that God is in control, and will strive to consider it joy when we face trials of many kinds, because the testing of our faith produces perseverance, and when perseverance finishes its work we will be complete (James 1:2-4).

Thanks for your continued love, prayers, and support, and may your faith be strong when you pray for our little Levi.

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

Tuesday, September 13, 2011

Fun time's over, back to business...

Hey everyone,

I hope all of your weeks are off to a good start. We are coming off of a great weekend - we had a blast with Nate, Amy, and Xavier. Little Levi and Xavier enjoyed having someone to rough house with, and if their rough-housing at this young of an age is a sign of things to come, it will be fun to watch them grow up together. Nate and I were able to escape a couple of times for a little H-D two-wheel therapy, and even had a chance to do a little shooting. Amy and Steph snuck out to do some fabric shopping, so Steph should be stocked up for this next hospital stay.

The home healthcare nurse came out yesterday and drew Levi's labs. We got the results back today, and all his blood counts are fine. His ANC was over 900, higher than the 750 mark he needed to start his next round. So -- it's off to Indy we go first thing in the morning to start the next round.

Steph went out with Briana Kessler tonight for a girl's coffee and pedicure, which she thoroughly enjoyed. I had a good time here at home, hanging with the kiddos. It was an absolutely perfect night outside, so we got some good swingset time in before tomorrow's trip. Round 3... The halfway point... Well, in case you are wondering, it's not getting any easier. I am not looking forward to getting Levi up in the morning, packing up the van, and taking Stephanie and him down to the hospital, knowing that it will be weeks before we can feel like a family again.

As I have mentioned before in my posts, there are moments we experience that I wish I could capture and burn into my memory, a welcome weapon to fight the tough times. Tonight, as Levi was at the top of the slide and I was waiting at the bottom, things felt normal. And as he launched himself downward, his face lit up in his goofy little toothy grin, squealing with delight in his beautiful little squeaky voice, he seemed as he should - a one and half year old boy playing outside as little boys do, caring only for how fast he could race down the slide to my waiting arms. But then, as I caught him, I could feel the tubing from his central line coiling and snaking across his chest under his tough guy t-shirt, and reality would come screaming back up to hit me in the chest. I could only bury my face in his little neck and tell him how much I loved him. As any little boy would, he tolerated my embrace for a few moments, then pushed away to point at the slide once again.

I love that little boy, with all my heart. I know that God has a plan for him, and I know that He is in control. I once again give it all to Him; Levi's health, life, and future is in His hands. I thank Him that He is in control, for once again I am empty, dreading the morning, and relying on Him to heal my little boy and to give me the strength to weather this next round.

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

Friday, September 9, 2011

Enjoying laying low...

Hey everybody,

Just wanted to give everyone a quick update on our week here at home. We've been enjoying our time together immensely. The kids are playing hard, although Levi has spouted a little tough-guy attitude with his big sister all of a sudden; now it seems like we are getting after him for picking on Caylee as much as we're after Caylee for picking on him. We love it though.

The home healthcare nurse came out yesterday to check Levi out and draw his labs. We got his results back today, and all his levels look good and are in the normal ranges. His ANC is still sub-500, so no playing outside or taking any trips yet. But that's ok; we've been having fun just hanging out here at home.

We talked to the doctor's office down at Riley, and they said that they will take a look at his blood test results that he'll have drawn on Monday to confirm whether or not he'll start chemo again on Wednesday. He has to have an ANC level of 750 before they start. If it's not up to that level yet, them may delay the start of the third round by a few days. My guess, though, is that his ANC will be high enough by Wednesday, especially if he rebounds similarly to the way he did after his first round.

I took the day off of work today, and enjoyed my time spent here at home. We got some house stuff done (always helps to have Steph here to motivate me), and logged several hours on the floor rough-housing with the kids. It is fun to see Levi jump right in to the mix. He is doing so well here at home, he's sleeping around 11 hours at night, eating more than Caylee is, and walking/running all over the place.

We are waiting on a visit from his Uncle Nate, Aunt Amy, and his little cousin Xavier. We're looking forward to a fun weekend with them. I hope you all have a great weekend, enjoy the time with your families, and as we hit the 10th anniversary of the September 11th tragedy, take some time to pray for peace and for the safety for our police and firemen, as well as all of our troops in uniform sacrificing so much for this country that we love.

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

Tuesday, September 6, 2011

All present and accounted for...

Hi everyone,

I hope you all had a great long weekend! We enjoyed ours, and had a great time helping my little nephew Xavier celebrate his first birthday. A big thanks again to Steph's mom and dad for sitting with Levi while Caylee, Steph, and I headed south for the big party. It was hard not having Levi there, but like I mentioned in our last post, we know this is temporary, and soon we'll be able to enjoy special occasions like birthdays as a complete family.

Ok - now I have to jump straight to my favorite part -- Levi was able to come home today! Yup! Steph called me this morning at work and said those four words I was waiting to hear (no, not "Cubs win the pennant")- "come get us now!" So, I wasted no time in jumping in the car, heading home for a five minute pick-up just to make sure things weren't bad enough that she'd leave me once she walked in the door, and I was on my way down to Indy. She and Levi were happy to see me, and it only took four wagon loads this time to get everything loaded in the van. He was all smiles and talked most of the way home. The relief is so evident in his actions, even at his young age.

I was going to try to get a picture of Caylee and Levi playing together, but it would have just been a blur. She and Levi chased each other all over the house, had screaming contests in the living room, argued over the kickball, and chatted away like siblings, making up for lost time. Just like on our last break, Steph and I just sat on the couch and watched them play. Needless to say, they were both absolutely wiped out when we stuck them in bed a few minutes ago. You could tell, as Levi layed right down without a peep and Caylee put up a good 15 minute screaming fit before she finally gave in. Ahh, things are normal and it feels good.

Levi is still technically under nutropenic precaution, as his counts are still pretty low. But, the doctor wanted to get him home, as it is actually much easier for little ones to stay away from germs and infection at home than it is in the hospital. All sort of nasty bugs lurking there I guess. We are monitoring his temperature and watching for signs of coughs, but praying and trusting God that he will have a solid rest and recovery time like he did after his first round.

We'll take him back next Wednesday to kick off his third round of chemo. We talked to the specialist today before we left, and it sounds like the third, fourth, and fifth rounds are challenging, but for different reasons. They aren't as long and they don't involve as many drugs, but the chemo dosages are higher, which increases the chance for some nasty side effects. He will have to get eye drops every three to four hours around the clock to keep from having eye issues due to the chemo being secreted from his tear ducts. And, as always, we'll have to watch for mouth sores, increased fevers, and severe diaper rash. We can handle this, though, knowing that he is getting better and that the chemo definitely appears to be working. If his tests continue to come back clear, then he will not have to undergo a bone marrow transplant!

But, we'll deal with all of that next week. For this week, we are going to lay low, love on our kids, and enjoy the peace and comfort that comes with all four of us being together again under one roof. God knows when we need a break, and we are thanking Him for this one.

I can't believe the house is quiet, both kids are in bed, and we have the windows open enjoying the cool night breeze. Life is good, and I am thankful for the unmeasurable blessings that we continue to receive. I'm just waiting for Steph to get back from a quick grocery run (I have a bad habit of letting the grocery supply dwindle to near nothingness when she's not here), then it's time to enjoy a night together. We will probably try to enjoy a movie or something, but typically we both end up passing out well before make it through one. The sleepless nights catch up with us pretty quickly these days.

Thank you again for your love, support, and prayers. God continues to walk with us through this battle, and if He is with us, who can be against us?

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

Friday, September 2, 2011

Awaiting the rebound...

Ahh, a nice long weekend ahead of us. I wish you all a very happy Labor Day weekend, whether you're heading out or staying in. Take the chances you get to love on your families, and stay cool! (temperature-wise, not cool as in awesome...)

Levi has continued to do well this week. His counts were completely bottomed out for a few days, but are now starting to show slight little hints that they might be getting ready to come back up. His platelets doubled since yesterday, and he had a good number of monocytes in his counts this morning. His ANC showed 18 yesterday, but today was back at 0, so still no immune system. Once it starts to get in the hundreds, then we'll start to be a little less paranoid.

When Steph talked to the doctor this morning, he mentioned that if his counts start to go up this weekend, he may get to go home! Wow. That would be awesome. But, we're not going to get our hopes up, we've been down that road before. We'll just take our encouragement from the fact that he seems to be bouncing back rather nicely this round and that each day he does better. And, we'll continue to pray that he stays healthy and steers clear of infections and fevers, both of which could derail things pretty quickly. Of course, we would love him to come home this weekend. But we're not getting our hopes up... Have to keep telling myself that... :)

Stephanie is doing well, she has been cranking out sewing projects at a feverish pace. I am impressed with what she can do with limited space and the one or two hours a day that she can work on her projects while Levi naps. I think she really perked up when the doctor said something about coming home. Oh yeah, we're not supposed to get our hopes up...

Caylee is doing well, she had another good week at preschool. I am glad that they send her schoolwork home with her everyday, it proves to me that she is actually being productive there. According to her, apparently all she does is sing songs and eat snacks. It's good to have objective evidence otherwise. I took her down to Steph's parents' last night, where we enjoyed a great meal and Caylee ate her own body weight in sweet corn.

I came down to the hospital this afternoon. I brought Levi some Hot Wheels - he thought they were just about the coolest thing ever. I am going to have to make it a practice to bring him a couple each visit. Pretty soon, he'll have a collection that rivals his daddy's, although I am actually letting him take his out of the packages (as much as that kills me). He showed off his hoops skills - apparently he's been practicing this week. I think another few weeks and he'll be able to take me in a game of horse. Maybe we'll even get to practice at home soon! (oh yeah, not supposed to get our hopes up...)

We have a pretty busy weekend ahead of us. Steph's parents are bringing Caylee down to the hospital tomorrow morning, and she, Stephanie, and I will head down to Seymour to help my little nephew Xavier celebrate his first birthday. Steph's parents will hang out here with Levi while we're gone. Then Steph and I will head back up here tomorrow night while Caylee stays with my parents down there. Gonna be a lot of miles on the road, but looking forward to seeing everyone. It will be tough to be without Levi for the birthday party, but it's just a temporary thing - soon he'll be done with treatments and get back to being a healthy little boy and we can resume some semblance of a normal life.

That's it for now - we'll keep you posted on whether or not we get to go home in the next couple of days. Of course, we're not getting our hopes up. Maybe if I keep telling myself that it will actually work...

Thanks for all your prayers and support. Please pray specifically that Levi can stay away from sickness and fevers right now, it's such a vulnerable state to be without an immune system. We love you all dearly, and thank God daily for our family and friends.

Have a great weekend,
Michael, Stephanie, Caylee, and little Levi