Thursday, June 30, 2011

What's getting me through today...

Today I am relying on the words of Psalm 62 to get me through the day. My family is physically and emotionally weary, but we can find rest in God alone.

Psalm 62

1 My soul finds rest in God alone;
my salvation comes from him.
2 He alone is my rock and my salvation;
he is my fortress, I will never be shaken.

3 How long will you assault a man?
Would all of you throw him down—
this leaning wall, this tottering fence?
4 They fully intend to topple him
from his lofty place;
they take delight in lies.
With their mouths they bless,
but in their hearts they curse.

5 Find rest, O my soul, in God alone;
my hope comes from him.
6 He alone is my rock and my salvation;
he is my fortress, I will not be shaken.
7 My salvation and my honor depend on God[a];
he is my mighty rock, my refuge.
8 Trust in him at all times, O people;
pour out your hearts to him,
for God is our refuge.

9 Lowborn men are but a breath,
the highborn are but a lie;
if weighed on a balance, they are nothing;
together they are only a breath.
10 Do not trust in extortion
or take pride in stolen goods;
though your riches increase,
do not set your heart on them.

11 One thing God has spoken,
two things have I heard:
that you, O God, are strong,
12 and that you, O Lord, are loving.
Surely you will reward each person
according to what he has done.

Wednesday, June 29, 2011

Well, that one's done...

Hey everyone,

This will probably be a shorter post - I am struggling to keep my eyes open on my couch here at home. Levi had a long day, but we got through it. We headed down to Indy around 8:15 am and dropped Caylee off at Steph's parent's house for the day (thanks guys!). We made it to Riley around 11:30, and got Levi all checked in to the day surgery center. My mom was able to come up to be with us, which was helpful. Levi did really well, especially considering that he hadn't had anything to eat since about 9:00pm last night. They finally took him back for his biopsy around 2:30. He was back there for about an hour. The doctor came out and talked to us afterwards - he told us that Levi did well and came through the procedure just fine. They feel that they got enough material to make a diagnosis. However, they weren't able to give us any prelim results. He said we likely won't hear anything back from the tests until the end of the week or early next week. So, we'll continue to wait patiently...

Levi did pretty well in recovery. He was a little groggy and ouchy, but was very happy to get something to eat and and drink (even if it was just apple juice and crackers). We left the hospital around 5:30, and after getting something to eat in Carmel (yay Chipotle) and picking up Caylee, we made it home around 9:45 or so. I think we're all worn out.

A quick cool story for you - we were hanging out in the waiting room while Levi was back in surgery, and a lady sitting near us came up and said that Levi was on her prayer chain. Turns out that she and her husband are CMA members from the Noblesville chapter, and had been receiving updates on Levi and had been praying for him. It was great to meet them, and very encouraging (and humbling) to be reminded how people all over are keeping our little guy in their prayers.

Thank you once again. We'll continue to keep you updated. And now, I think it's time for bed.....

Tuesday, June 28, 2011

Game plan for tomorrow...

Hey everybody,

I hope you all had a great weekend. It was such a welcome break for us to all be home, and it was obvious that Levi enjoyed it too. He is doing much better, and is laughing, playing, and talking like a little 15 month old boy should. He also has his appetite back, which is great to see as he has lost some weight in the last few weeks. Here's a picture Steph snapped yesterday while he was out on one of his wagon rides. He still isn't interested in walking or crawling though, and either wants to be held or hang out in his bouncy seat or high chair.

Today we took him down to Indianapolis again for a consultation with the doctor that will be performing his open biopsy. We had to go down to IU Health main campus, which made us very thankful that up until this point we've been able to stay on the north side at the Riley in Carmel. We didn't realize Meridian was all torn up (or that it would take an old Indian guide to find the right building once we were there).

The doctor seemed to think that LCH was the most likely diagnosis at this point, but obviously we need the biopsy before we can confirm anything. He originally wanted to perform the biopsy next Friday, but our reactions must have made it evident that we thought this was too long to wait. So, they performed some sort of scheduling magic and got us in tomorrow.

So the game plan for now is that we will head back down to Indy tomorrow morning. We should be at the downtown Riley Hospital around noon, and the surgery is scheduled for 1:30pm. This one will be a little different than the ones in the past, since they will actually make an incision and remove a piece of bone. They are planning on doing this in his right arm. It is scheduled as an outpatient procedure, so we are hopeful that we will be able to come home after he is out of recovery. He will be sore, but I know he will rest and recover better at home than in a hospital room. But, we will probably take overnight clothes just in case, as we've been down that road before (hopefully if we take them we won't need them)... We were told today that we should know some prelim results tomorrow. I hope they were serious about that part.

Thank you for your continued prayers, love, and support. Thanks to those who have brought us meals, helped pay for gas, and even mowed our lawn (I have the best neighbors ever). We are humbled by your faithfulness and generosity. Please pray expectantly for good results from the biopsy, strength for our little Levi (he won't be able to eat after midnight tonight), wisdom and guided hands for the doctors and nurses, and peace, patience, and the strength to overcome doubt and unbelief for this tired mommy and daddy.

We love you all, and will keep you updated as soon as we know anything.

Michael, Stephanie, Caylee, and little Levi

Friday, June 24, 2011

Back home again in (northern) Indiana...

Home sweet home...

We checked out of our resort (hospital) yesterday around lunch time. Levi immediately acted better once outside. My mom and Amy brought Caylee up, and we all went out to lunch to celebrate. It was great holding little Levi without any IV tubes or monitor cables. We got home around 4:30 pm, and were pleasantly surprised that our house was still standing and in decent order.

Levi did pretty well last night. He was in a great mood, and seemed to be happier overall. He slept really well last night, I think he enjoyed being back in his own bed in familiar surroundings. Of course, mommy and daddy slept much, much better as well.

Nate, Amy, and Xavier came up this morning to visit and help out around the house. It was great to have some family time. Levi did pretty well and played while being held - it is kind of sad to see him not want to crawl or walk on his own. I think he just hurts too much to want to be very active.

When we left yesterday, we talked with the orthopedic surgeon who will perform his open biopsy. We will go down to Indy to his office for a consult next Tuesday. Not sure why we need to do this beforehand, I figured he could get the info he needed from our doctor. But whatever I guess. We should know next Tuesday when the biopsy will be scheduled. Hopefully it's soon, we're anxious to get the diagnosis confirmed and start treatments. We just want out active, happy little boy back as soon as we can.

He had a home healthcare nurse stop by this morning to do training for us on flushing and cleaning Levi's PICC line. I'll just say that I'm glad Steph's a nurse... I'm not cut out for that stuff.

Thanks everyone for your continued prayers and support. We love you all, and will continue to keep you all updated on our little Levi.

Michael, Stephanie, Caylee, and little Levi

Wednesday, June 22, 2011

We're going home... eventually...

...just not today.

Originally, we thought we would be heading home today. But, due to his tiny guy stature, they decided they would need to use sedation on him to perform the bone scan tomorrow morning, which bumped the start time of the scan from 10am back to 8am. Then, they told us we would need to be here 2-3 hours before the scan started to inject him with the dye they use. So, once you factor in that it takes us about 2.5 hours to get here, the choice to stay here another night was pretty easy.

The Dr reiterated this morning that this does not look like AML (praise God!). They are leaning more towards LCH, which we still need to get educated about. The severity and aggressiveness of LCH is much less than AML. To confirm this though, they will likely do an open biopsy after the bone scan at some point in the future. Of course we have no idea when that will be scheduled.

It's going to be another slow day, just waiting for tests tomorrow morning. However, we are looking forward to my parent bringing Caylee up for a visit in a little while. Plus, my dad's riding his new Harley up, so maybe, just maybe, I wil get some two-wheel therapy... :)

Oh yeah, did I mention - we're going home tomorrow!

Tuesday, June 21, 2011

And the verdict is...

...still waiting.

The results of Levi's bone marrow biopsy in his right humerus didn't give us any answers. The good news is that they did not find any AML cells. Apparently, though, they do not feel that they can rule out leukemia yet. They are still considering a couple of other options to explain the spots they saw in his bones, including bone infections, LCH (which is apparently a different type of cancer that is much less in severity than AML), and scar
tissue that may have been left behind from his bout with leukemia last year.

To keep moving things forward, the Dr ordered a skeletal survey (basically a ton of xrays of the whole body) and a bone scan. We completed the xrays tonight, and the earliest they can get us in for a bone scan was Thursday morning. That being the case, they are talking about letting us go home tomorrow and having us come back down for the bone scan the next day. That, of course, is welcome news, as tomorrow will be one week since we were admitted. They are setting up home healthcare to help us maintain Levi's IV and PICC line, so we should know more about that tomorrow morning.

Other than being cooped up in the room with his pacing parents, Levi had a pretty good day. He was singing and playing this morning, and was almost back to his normal ornery self (although he wasn't too interested in moving around). His appetite improved considerably, and he didn't seem to be as feverish as he was the past couple of days. A friend of ours brought us a great home cooked meal tonight (Thanks Jen!), which was a welcome break from hospital and restaurant food.

We're doing ok, just worn out. I originally thought about posting my frustrated daddy response when we found out that we didn't have any real answers after all these tests, but just when I was thinking about what to write we got a text from Amy, my sister-in-law. The text simply quoted a well-known verse:

Isaiah 40:31
But those who wait on the LORD
Shall renew their strength;
They shall mount up with wings like eagles,
They shall run and not be weary,
They shall walk and not faint.

So, instead of ranting, I am praying tonight that God gives me the patience to wait for His will to be done in accordance with His perfect timing. He has a plan for Levi, a plan to prosper him and not to harm him, plans to give him hope and a future (Jeremiah 29:11).

Thank you once again for the outpouring of love and support. We love you all, and will continue to keep you posted. Please keep us in your prayers. Also, please pray for the other little ones here in the hospital. I was outside taking a walk with my daughter Caylee yesterday evening, enjoying the sunshine and her company. We saw a little girl laying in one of the Riley Hospital wagons along the walkway with her mom. They were taking a break on their short excursion, the IV with her chemo treatment right beside her, that familiar cuff around her arm. I looked at my beautiful healthy daughter, and tears immediately flooded my eyes. I was reminded that no matter how bad we think we have it, there is always someone who is in a worse spot than us. It is up to us to find ways to minister to those who are hurting.

God bless you all, have a great night.
Michael, Stephanie, Caylee, and little Levi

Tests, tests, and more tests...

Hello family and friends...

Today was a long day, but God brought us through it. Levi, Steph, and I actually got some decent sleep last night, close to 8 hours worth. That made a huge difference. We finally rolled out of bed (or our respective crib, day bed, and weird chair bed fold out thingy) close to 10 am. Levi couldn't have anything to eat or drink after midnight, which made things interesting. He actually was asking for something to eat and drink, which was a good sign, but we had to distract him so he wouldn't get too upset. He was pretty happy this morning, and played, talked, and smiled quite a bit more than he had the past few days. That was a huge encouragement to mommy and daddy.

Our family started showing up around 11 am, which helped the day move quickly. The nurses took him back for the biopsy around 3:30 pm. He was back there for about an hour, then the nurse and doctor came to talk to us and told us the biopsy and the placement of the PICC line went great. Steph and I went back to the post-op area, where we found an enraged little 15 month old beautiful boy wanting his mom and dad. He calmed down pretty quickly once we snuggled a little bit and gave him something to drink.

He started to have PVCs with a few runs of V-tach not long after we got back there. The nurse was pretty concerned, so she brought a few more nurses to help watch him and got in touch with the PICC line team. They suspected that the PICC line was too far in (although we had been told it was "perfect placement"), and brought in the portable x-ray machine to do a chest x-ray. They were thinking that the PICC line was irritating Levi's heart. After the x-ray, they pulled the line out a centimeter or so, then followed up with a second x-ray to confirm placement. That must have done the trick, as his PVCs stopped once the PICC line was adjusted and he was back in the room.

We had a great evening with Levi and our family. Steph's parents were here, as were Nate, Amy, and little Xavier. My parents and Cyrus brought Caylee towards the end of Levi's procedure. It was very calming to have everyone here. Levi was very excited that they allowed him to have food again, and ate like a champ (including an entire cheese quesadilla from Chipotle that his Grandpa Richard bought for him). He played with everyone tonight, and gladly shared a cup of ice cream with his big sister. It was a blessing and an encouragement to have him engaged and happy again. He went right to sleep tonight, and we are very relieved that they will be able to do his 4am blood draw through the PICC line instead of poking him again. I am not sure how many more sticks his poor little bruised arms could take (or his frustrated and anxious mommy and daddy could tolerate).

Thank you all again for your prayers and support. They were felt today, and we know that God was with us throughout all of this. We are relying on Him to get us through this. We should get some results back tomorrow, and hopefully know enough to start fighting whatever it is that's bringing our little bubby down. Please keep the prayers coming! Also, thank you so much for the comments, texts, emails, and messages. They provide so much encouragement for us. We try to reply to as many as we can, but it is simply not possible. Thank you again for the outpouring of love and support. We love you all,

Michael, Stephanie, Caylee, and little Levi

Sunday, June 19, 2011

And so begins the next chapter...

First off, for all you dads out there - Happy Father's Day. It's a big responsibility God has given us - to raise our little ones with love, patience, and grace. I'll never be able to fill my dad's shoes, but I thank God for the him and the lessons he has taught me throughout the past 31 years of my life. I pray that I can be half the man he is for my children. Here's a picture of my dad with little Levi.

I write this post from my laptop in a dimly lit hospital room while my little one sleeps in a crib a few feet from this couch. Seems like Levi's story isn't over...

For the past three or four weeks, Levi has been getting sick. He would be down for a few days, then be back to his normal self - running around the house and terrorizing his big sister. We (and our family doctor) attributed his little downturns to teething (he was getting six at one time), an ear infection, and something viral. But this last time he was sick it really wiped him out. He wasn't walking, and was losing his appetite. He only wanted to be held and snuggled (which is pretty unusual), and couldn't seem to shake his low-grade temp. We took him back into our doctor, who ordered some blood tests, and then suggested we bring him down to Riley Hospital to see our oncologist.

On Wednesday, Steph and her mom brought Levi down to get checked out. It was supposed to be a quick check to make sure everything was ok before we headed to Florida for vacation on Friday. The quick check however quickly turned into an overnight stay in the hospital to perform a bone marrow test in the morning. That then turned into a little longer stay so that they could run additional tests. Which, in turn, snowballed into an IV, chest x-ray, MRI, bone marrow biopsy, ultrasound, over 30 ml of blood in numerous draws, two TB skin tests (the first of which was botched), and a consult with the infectious disease doctor.

It has been quite the emotional rollercoaster over the past few days. Possible leads for the illusive cause of his sickness started with viral infections, anemia, iron deficiencies, milk allergies, pet-borne illnesses, and many more. Over the course of his tests, however, the leads have been reduced down to two; a bone infection or leukemia. Unfortunately, it sounds like the doctors are leaning towards the latter.

His bone marrow tests and blood tests had been coming back clean, so we weren't even thinking of leukemia as an option. But a chest x-ray performed to check for possible infections indicated a strange spot on his right arm. The MRI was performed to investigate this spot in more detail. It turns out that the spot is actually shading in his bone marrow, which is a sign of leukemia. There are a few other spots that they saw as well in his shoulder blade and ribs.

Levi goes in tomorrow at 3pm for a biopsy of that spot on his humerus. They are going to try to find exactly what that spot is, and if it is leukemia, try to find out exactly what kind so we can get a battle plan drawn up.

I'll be honest, this is not the post I originally wanted to make for Father's Day. But, this is the trial that we are facing, and we'll get through it. Philippians 4:6 says "Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God." We are trying not to be anxious about tomorrow's test. We know that God moves mountains - we have seen Him do it many times in our lives and the lives of some close friends this past year. So we are asking Him to deliver Levi once more from this and are trusting Him, because this is so out of our control.

Please pray for Levi and the doctors tomorrow. We are praying earnestly for a successful procedure and good results. Also, please keep Steph, Caylee, and me in your prayers as well. We were very much looking forward to vacation, but that has been abandoned. It's not that we are disappointed that we won't be going to Florida; Florida will be there next year. It's the extra strain of having to spend this time split apart that is really weighing heavy on us all. My little Caylee is very concerned about her bubby, and her being away from us and us being away from her is difficult. We are very thankful for our families, as they are stepping up big time to help us through this.

That's about all I can keep my eyes open for now... I will update you all tomorrow evening. We love you all, and thank you for your prayer and support. We'll beat this...