Hi everyone,
Here's an update on how Levi's appointment at Riley went yesterday.
In short, the little guy had a pretty rough morning...
Steph and her mom took Levi in to Riley around 10:30 am, and after checking into the doctor's office, headed over to the PICU for his bone marrow test. The plan was to try to get the bone marrow sample while he was under conscious sedation without having him taken to the OR and put under general anesthesia. However, they couldn't get an IV started on him. Several nurses and doctors tried unsuccessfully for over three hours and 14 sticks to get one going. They ended up having to cancel the order and gave up. They also postponed his blood test. It was a rough time, and pretty much sapped his strength and energy He slept alot afterwards, but is ok today, and seems to be back to his normal self. In short, we really don't know anything new...
We are thankful that little kids don't remember things like this. (How traumatic would it be to remember all the details and procedures that happen as an infant?)
So, the plan going forward is that we will take Levi back down there next Wednesday. They will take him into the OR and put him under general anesthesia so they can more easily get an IV going and draw his bone marrow labs. Then its back to the waiting game for a few days until we get his results. Wednesday happens to be my birthday, and Thursday is Steph's, so good test results are topping both our wishlists for birthday presents!
Thank you to all for continued prayer and support. This was just one more chapter of Levi's battle, and we will get through it with God's strength and grace. A special thank you to his Grandma Linda who headed down to Indy with Stephanie and Levi, and to his Grandma Sharlene who came up to our house to watch Caylee while they were away.
Through all of this, remember that our God is stronger.
Michael and Stephanie
Friday, May 28, 2010
Tuesday, May 25, 2010
Thursday's upcoming test...
Just wanted to give you a quick update on Thursday's test. Stephanie and her mom will be taking Levi down to Riley Thursday morning. They will be giving him conscious sedation for the bone marrow biopsy. This test will be performed in the pediatrics ICU, which is great because that means he won't have to go under general anesthesia and have it performed in the OR. So hopefully it will be a quick trip. And we're praying and trusting God for awesome results!!
Also, all of you prayer warriors out there, I would like to ask you a favor. The next time you pray for Levi, please take a moment and pray for all the other children in these hospitals fighting their own personal battles. It is a sobering thing to walk into the waiting room or meet someone in the hallway and know that every person is engaged in a fight with cancer or some other childhood disease. Every parent has a heavy and anxious heart, whether their child is there for a routine checkup, another dose of chemo, or a more serious treatment. You can read it on their weary faces, although the bravery they display when smiling and hugging their kids will bring tears to your eyes. Some of these people know that our God is stronger, but sadly others are facing these troubles by themselves. Pray that God will heal their illnesses and that they will find Peace in Him.
Love you all,
Michael & Stephanie
Also, all of you prayer warriors out there, I would like to ask you a favor. The next time you pray for Levi, please take a moment and pray for all the other children in these hospitals fighting their own personal battles. It is a sobering thing to walk into the waiting room or meet someone in the hallway and know that every person is engaged in a fight with cancer or some other childhood disease. Every parent has a heavy and anxious heart, whether their child is there for a routine checkup, another dose of chemo, or a more serious treatment. You can read it on their weary faces, although the bravery they display when smiling and hugging their kids will bring tears to your eyes. Some of these people know that our God is stronger, but sadly others are facing these troubles by themselves. Pray that God will heal their illnesses and that they will find Peace in Him.
Love you all,
Michael & Stephanie
Enjoying the Fort Wayne Zoo...
We thought you might enjoy a couple of pictures from our excursion on Saturday to the Fort Wayne Zoo. We had a great time with the kids, and Caylee is still talking about the big lion, the silly monkeys, and the mommy and baby ducks. Enjoy!
Thursday, May 20, 2010
Wednesday's doctor appointment...
Hi everyone,
We wanted to give you all an update on Levi's appointment at Riley yesterday. The doctor agreed that the spots are going away. If someone didn't know what or where they were, they could probably hold Levi and not even notice them. He was encouraged by that. He took a look (feel) at Levi's kidneys, liver, spleen, and lymph nodes, and said they were fine and that he didn't feel any enlargement or masses. His blood tests came back fine too. The hemoglobin was a little lower than last time, but the doctor said that in infants that level goes up and down, and Levi's was ok. Our nurse was again excited that she may have a story like this to tell other families and inspire some hope. The doctor said we are keeping our fingers crossed and hoping this is a "miracle case". I am not much of a believer in crossing fingers, but I sure will keep praying...
This makes three weeks in a row where we've had encouraging doctors visits. Next week is pretty important, as Levi will undergo his second bone marrow biopsy. The results of that will be a key determining factor in how we move forward. With his spots going away, his blood tests coming back ok, and the fact that he's eating/sleeping/pooping/growing/smiling like a normal baby, we are hopeful to hear more good news from this upcoming test. It seems a little odd to be excited about next week's test, but that's what we are. Excited to see that God is continuing to work in his life. What a story he'll have to tell!
Love you all,
Michael & Stephanie
We wanted to give you all an update on Levi's appointment at Riley yesterday. The doctor agreed that the spots are going away. If someone didn't know what or where they were, they could probably hold Levi and not even notice them. He was encouraged by that. He took a look (feel) at Levi's kidneys, liver, spleen, and lymph nodes, and said they were fine and that he didn't feel any enlargement or masses. His blood tests came back fine too. The hemoglobin was a little lower than last time, but the doctor said that in infants that level goes up and down, and Levi's was ok. Our nurse was again excited that she may have a story like this to tell other families and inspire some hope. The doctor said we are keeping our fingers crossed and hoping this is a "miracle case". I am not much of a believer in crossing fingers, but I sure will keep praying...
This makes three weeks in a row where we've had encouraging doctors visits. Next week is pretty important, as Levi will undergo his second bone marrow biopsy. The results of that will be a key determining factor in how we move forward. With his spots going away, his blood tests coming back ok, and the fact that he's eating/sleeping/pooping/growing/smiling like a normal baby, we are hopeful to hear more good news from this upcoming test. It seems a little odd to be excited about next week's test, but that's what we are. Excited to see that God is continuing to work in his life. What a story he'll have to tell!
Love you all,
Michael & Stephanie
Tuesday, May 18, 2010
Tomorrow's test and your support...
Hi everyone,
I hope you have had a great week. I wanted to post a note asking for special prayer for Levi. Tomorrow morning he is headed back down to Indy for another blood test and examination. The last two weeks worth of tests have been very encouraging, and I would like for you to pray for a continuation of these results. I am in Orlando at a conference, so Steph will be making the trek south with her mom (thanks Linda!). In talking to Steph last night, it sounds like many of Levi's little "spots" (we've struggled as to what to call them, so we'll stick with "spots") have pretty much dissapeared. We know that can't be a bad thing. We believe God is healing our little guy, and know that this is directly related to your prayer and support.
Speaking of your prayer and support, I wanted to just again say "thank you". I wish that there were other words that we could use besides "thank you" to show our gratitude, because those words just seem too common to accurately express our gratitude and appreciation.
Let me paint a picture of how your love and support manifests itself to us... We have had family spend time with us and take trips with us. We have had people bring us dinners. We have had people bring us desserts. We have had people give us money for gas and food. We have had people bring us prayer cloths and pray over Levi. We have had people circle up and pray for Levi in many locations. We have had family and friends go forward during church to pray for Levi. We have had people call us, comment on our blog posts, and write notes on our Facebook pages. Last weekend, our CMA chapter came and spent 7 hours helping us out with landscaping and outside chores that we haven't been able to attend to. We have been put on so many church prayer chains that I can't even count. Since we kicked off this blog, the site has had around 1,500 visits. And most importantly, we have had people keep Levi in their prayers regularly. Some of the most touching stories of prayer have been friends telling us that their little children are praying for Levi (for some reason I believe the faith of a child is a sweet and meaningful thing).
Although we try, it is impossible to keep on top of all these selfless gestures. There aren't enough Thank You cards in this world. So please know that we are forever grateful to you. And please, please, please keep praying that God continues to work in little Levi's body to rid him of his illness.
We love you all,
Michael and Stephanie
I hope you have had a great week. I wanted to post a note asking for special prayer for Levi. Tomorrow morning he is headed back down to Indy for another blood test and examination. The last two weeks worth of tests have been very encouraging, and I would like for you to pray for a continuation of these results. I am in Orlando at a conference, so Steph will be making the trek south with her mom (thanks Linda!). In talking to Steph last night, it sounds like many of Levi's little "spots" (we've struggled as to what to call them, so we'll stick with "spots") have pretty much dissapeared. We know that can't be a bad thing. We believe God is healing our little guy, and know that this is directly related to your prayer and support.
Speaking of your prayer and support, I wanted to just again say "thank you". I wish that there were other words that we could use besides "thank you" to show our gratitude, because those words just seem too common to accurately express our gratitude and appreciation.
Let me paint a picture of how your love and support manifests itself to us... We have had family spend time with us and take trips with us. We have had people bring us dinners. We have had people bring us desserts. We have had people give us money for gas and food. We have had people bring us prayer cloths and pray over Levi. We have had people circle up and pray for Levi in many locations. We have had family and friends go forward during church to pray for Levi. We have had people call us, comment on our blog posts, and write notes on our Facebook pages. Last weekend, our CMA chapter came and spent 7 hours helping us out with landscaping and outside chores that we haven't been able to attend to. We have been put on so many church prayer chains that I can't even count. Since we kicked off this blog, the site has had around 1,500 visits. And most importantly, we have had people keep Levi in their prayers regularly. Some of the most touching stories of prayer have been friends telling us that their little children are praying for Levi (for some reason I believe the faith of a child is a sweet and meaningful thing).
Although we try, it is impossible to keep on top of all these selfless gestures. There aren't enough Thank You cards in this world. So please know that we are forever grateful to you. And please, please, please keep praying that God continues to work in little Levi's body to rid him of his illness.
We love you all,
Michael and Stephanie
Tuesday, May 11, 2010
A good doctor's visit...
Stephanie and I headed down to Indy today for the first of Levi's weekly blood test / checkups.
When we got there, the doctor told us that Levi's spinal fluid biopsy came back negative and that his cytogenetics test (don't ask me to explain that one) came back ok. This was awesome news.
They took Levi's blood and everything came back normal, including his white blood cell, red blood cell, hemoglobin, and platelet count. Additionally, the doctor confirmed our belief that the spots on his skin were getting lighter and smaller. The doctor is encouraged by his progress, and is hoping that Levi's case turns out to be one of those "miracle cases" (his words) where he beats it on his own. He says that no one knows why some kids can kick it on their own. I told him there were tons of people praying for him. The nurse told us that she hopes he does it on his own, since she wants to experience one story like this so she can tell people about it. The doctor wants us to keep taking pictures of his spots so that he can use them to teach residents. He also wants a full genetic array performed after Levi's next bone marrow test so he can write up a case study on Levi.
It sounds like so much of his future treatment plans and scheduling will depend on the results of his bone marrow test, which will be in a couple of weeks. If it comes back showing a very low or 0% leukemia level, then this will confirm that the disease is going into remission without treatment and we can start scaling back on the frequency of his blood tests and checkups.
We are feeling very encouraged by the news today. While the doctors may not know why this is happening, we can sum it up in three words - God answers prayers. So all of you out there praying for our precious little boy, please keep it up, and thank you from the bottom of our hearts!
Michael and Stephanie
When we got there, the doctor told us that Levi's spinal fluid biopsy came back negative and that his cytogenetics test (don't ask me to explain that one) came back ok. This was awesome news.
They took Levi's blood and everything came back normal, including his white blood cell, red blood cell, hemoglobin, and platelet count. Additionally, the doctor confirmed our belief that the spots on his skin were getting lighter and smaller. The doctor is encouraged by his progress, and is hoping that Levi's case turns out to be one of those "miracle cases" (his words) where he beats it on his own. He says that no one knows why some kids can kick it on their own. I told him there were tons of people praying for him. The nurse told us that she hopes he does it on his own, since she wants to experience one story like this so she can tell people about it. The doctor wants us to keep taking pictures of his spots so that he can use them to teach residents. He also wants a full genetic array performed after Levi's next bone marrow test so he can write up a case study on Levi.
It sounds like so much of his future treatment plans and scheduling will depend on the results of his bone marrow test, which will be in a couple of weeks. If it comes back showing a very low or 0% leukemia level, then this will confirm that the disease is going into remission without treatment and we can start scaling back on the frequency of his blood tests and checkups.
We are feeling very encouraged by the news today. While the doctors may not know why this is happening, we can sum it up in three words - God answers prayers. So all of you out there praying for our precious little boy, please keep it up, and thank you from the bottom of our hearts!
Michael and Stephanie
Monday, May 10, 2010
Some new pics of Levi...
Here are a couple of pictures that Hannah took of Levi this weekend. He's a happy little boy!
Sunday, May 9, 2010
Happy Mother's Day!! (and the latest on Levi...)
Hi everyone,
It's been a few days (sorry about that), so I want to start out by saying HAPPY MOTHER'S DAY to all you moms, grandmas, and expectant moms!
Stephanie and I thank God everyday for our families, and love our moms. They diligently provide daily support and prayers for their children and children's children, and are great examples of how to raise their children.
I also thank God for my beautiful wife; she has been so strong throughout this trial, and loves her children more than anything else in this world. I am truly blessed to have her as a wife and a mommy to my little kids!
So, now for an update on our little guy...
The doctor called last Thursday and said that they changed the diagnosis of the subtype of AML from M5 to M4. It really doesn't change anything, and from what I understand it is pretty much the same. He also said that the prelim genetics test came back good, and didn't indicate that Levi is a carrier of MLL gene, which can cause the leukemia to be more aggressive and more complicated. That was great news, and provided another little win for Levi. He is doing so well, he's starting to smile, talk a little, and loves to be wide awake and look out the windows. We are so thankful that this disease is not causing him pain or discomfort.
The doctor also said that he would rather have Levi come down to Riley for his weekly blood tests rather than having them performed in Warsaw. This means a trip to Indy every week, but Stephanie and I are actually much more comfortable with this arrangement, since the same doctor will be examining him every week and will be able to check him over. We are headed down there on Tuesday for the first of these visits, and are praying that his results continue to come back ok. We are continuing to pray expectantly for his healing.
In closing, I wanted to offer a couple verses that Stephanie and I have found comfort in over the past week; it helps when those emotional moments sneak up on you...
Psalm 34:17-19
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 A righteous man may have many troubles,
but the LORD delivers him from them all;
Love you all, and thank you for your continued prayers!
Michael and Stephanie
It's been a few days (sorry about that), so I want to start out by saying HAPPY MOTHER'S DAY to all you moms, grandmas, and expectant moms!
Stephanie and I thank God everyday for our families, and love our moms. They diligently provide daily support and prayers for their children and children's children, and are great examples of how to raise their children.
I also thank God for my beautiful wife; she has been so strong throughout this trial, and loves her children more than anything else in this world. I am truly blessed to have her as a wife and a mommy to my little kids!
So, now for an update on our little guy...
The doctor called last Thursday and said that they changed the diagnosis of the subtype of AML from M5 to M4. It really doesn't change anything, and from what I understand it is pretty much the same. He also said that the prelim genetics test came back good, and didn't indicate that Levi is a carrier of MLL gene, which can cause the leukemia to be more aggressive and more complicated. That was great news, and provided another little win for Levi. He is doing so well, he's starting to smile, talk a little, and loves to be wide awake and look out the windows. We are so thankful that this disease is not causing him pain or discomfort.
The doctor also said that he would rather have Levi come down to Riley for his weekly blood tests rather than having them performed in Warsaw. This means a trip to Indy every week, but Stephanie and I are actually much more comfortable with this arrangement, since the same doctor will be examining him every week and will be able to check him over. We are headed down there on Tuesday for the first of these visits, and are praying that his results continue to come back ok. We are continuing to pray expectantly for his healing.
In closing, I wanted to offer a couple verses that Stephanie and I have found comfort in over the past week; it helps when those emotional moments sneak up on you...
Psalm 34:17-19
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 A righteous man may have many troubles,
but the LORD delivers him from them all;
Love you all, and thank you for your continued prayers!
Michael and Stephanie
Wednesday, May 5, 2010
Test results and moving forward...
So, our phone finally rang, and it was actually the doctor's office!
Levi's bone marrow test came back showing a leukemia level of 30%. I asked the doctor if this was concerningly high, and he said that 100% was high, and this was in the "ok" range. It is obviously higher than what we wanted to hear, but I will trust his judgement.
He told us that this test result does not change his plan of attack, which is to monitor this very closely to see what it does. He mentioned that maybe this will be one of those "miracle" cases where it goes away on its own. Good thing we are trusting a God that is known for His miracles! He wants to give Levi a chance to beat this on his own, and doesn't want to subject him to chemo if we don't have to just yet. He says the older Levi gets, the better he will be able to cope with the chemo (if its needed). If he underwent chemo right now, he would likely have to have an NG tube for nourishment and would be more prone to infections.
So, going forward, we will take him in for weekly blood tests (which thankfully can be done here in Warsaw) and plan on taking him back down to Riley Hospital in a month or so for another bone marrow test. I have to admit, it feels a little strange to know that Levi has this disease but to not be acting on it. I guess that monitoring it is a form of "acting", but it doesn't necessarily satisfy mom and dad's desire to fight this thing with all we have and to not just beat it, but destroy it... It is reassuring, though, that our doctor is consulting with the 4 or 5 top AML leukemia experts in North America, and they are confirming this plan.
We are praying that God will help Levi beat this on his own, and that our little guy will be one of those handful of "miracle" cases!
Love you all,
Michael & Stephanie
Levi's bone marrow test came back showing a leukemia level of 30%. I asked the doctor if this was concerningly high, and he said that 100% was high, and this was in the "ok" range. It is obviously higher than what we wanted to hear, but I will trust his judgement.
He told us that this test result does not change his plan of attack, which is to monitor this very closely to see what it does. He mentioned that maybe this will be one of those "miracle" cases where it goes away on its own. Good thing we are trusting a God that is known for His miracles! He wants to give Levi a chance to beat this on his own, and doesn't want to subject him to chemo if we don't have to just yet. He says the older Levi gets, the better he will be able to cope with the chemo (if its needed). If he underwent chemo right now, he would likely have to have an NG tube for nourishment and would be more prone to infections.
So, going forward, we will take him in for weekly blood tests (which thankfully can be done here in Warsaw) and plan on taking him back down to Riley Hospital in a month or so for another bone marrow test. I have to admit, it feels a little strange to know that Levi has this disease but to not be acting on it. I guess that monitoring it is a form of "acting", but it doesn't necessarily satisfy mom and dad's desire to fight this thing with all we have and to not just beat it, but destroy it... It is reassuring, though, that our doctor is consulting with the 4 or 5 top AML leukemia experts in North America, and they are confirming this plan.
We are praying that God will help Levi beat this on his own, and that our little guy will be one of those handful of "miracle" cases!
Love you all,
Michael & Stephanie
Our beautiful children...
Thought you might enjoy a new picture as well, here's one of Caylee and Levi this morning hanging out on the couch watching cartoons.
Waiting for news in peace...
We are waiting for the phone to ring. Seems like we've done a lot of that lately. You've never experienced true rage at telemarketers until you are waiting to hear news from the doctor's office and jump up when the phone rings only to be asked if you own your own home or if you have ten minutes for a survey...
We are, however, in peace. It's not easy to wait for news in peace, but it is possible. Let me show you how.
Isaiah 40:31
but those who hope in the LORD
will renew their strength.
They will soar on wings like eagles;
they will run and not grow weary,
they will walk and not be faint.
Isaiah 41:10
So do not fear, for I am with you;
do not be dismayed, for I am your God.
I will strengthen you and help you;
I will uphold you with my righteous right hand.
Jeramiah 29:13
You will seek me and find me when you seek me with all your heart.
Proverbs 4:20-22
My son, pay attention to what I say;
listen closely to my words.
Do not let them out of your sight,
keep them within your heart;
for they are life to those who find them
and health to a man's whole body.
Philippians 4:6-7
Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.
Mark 11:24
Therefore I tell you, whatever you ask for in prayer, believe that you have received it, and it will be yours.
Hebrews 10:35-36
So do not throw away your confidence; it will be richly rewarded. You need to persevere so that when you have done the will of God, you will receive what he has promised.
These are just a few of the passages that we have been reading daily. We believe that God is granting us the "peace which transcends all understanding". I encourage you to read these passages as you join us in praying not only for our little Levi, but others who are suffering as well.
God Bless,
Michael and Stephanie
We are, however, in peace. It's not easy to wait for news in peace, but it is possible. Let me show you how.
Isaiah 40:31
but those who hope in the LORD
will renew their strength.
They will soar on wings like eagles;
they will run and not grow weary,
they will walk and not be faint.
Isaiah 41:10
So do not fear, for I am with you;
do not be dismayed, for I am your God.
I will strengthen you and help you;
I will uphold you with my righteous right hand.
Jeramiah 29:13
You will seek me and find me when you seek me with all your heart.
Proverbs 4:20-22
My son, pay attention to what I say;
listen closely to my words.
Do not let them out of your sight,
keep them within your heart;
for they are life to those who find them
and health to a man's whole body.
Philippians 4:6-7
Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.
Mark 11:24
Therefore I tell you, whatever you ask for in prayer, believe that you have received it, and it will be yours.
Hebrews 10:35-36
So do not throw away your confidence; it will be richly rewarded. You need to persevere so that when you have done the will of God, you will receive what he has promised.
These are just a few of the passages that we have been reading daily. We believe that God is granting us the "peace which transcends all understanding". I encourage you to read these passages as you join us in praying not only for our little Levi, but others who are suffering as well.
God Bless,
Michael and Stephanie
Monday, May 3, 2010
Update on our Monday...
Here's a little about our day at the hospital...
Steph, Levi, and I arrived at Riley this morning around 8:30. There was some confusion on where we were actually supposed to be (we found out later that there was a surgery team waiting for us to show up at the downtown Riley campus at 10:30 am even though we were really supposed to be at the North campus at 1:30 for the surgery).
After arriving, we talked to the doctor and found out that he had done some more research over the weekend to find out what type of leukemia Levi has. When he called last Friday, he was pretty concerned about the preliminary diagnosis. After more tests were completed, he thinks now that Levi has a subtype of AML leukemia that is not as aggressive as originally thought. They performed some more blood tests, and found that his red blood cell count, white blood cell count, hemoglobin, and other blood levels were normalizing. There was a big change for the better over last week's test results. This was great news.
Because the doctor had adjusted what he thinks Levi has, and because his blood tests were much improved, they decided that they did not want to put a central line in Levi. Instead, they decided to just do a bone marrow test, an additional skin biopsy, and a test on his spinal fluid for the sake of being thorough. The doctor says that the type of leukemia that Levi has will sometimes go away on its own. Although this is rare, we are praying for this outcome. He says that if the bone marrow and biopsy tests come back ok, he is not planning on starting chemo. Instead, he wants to watch the leukemia by performing regular blood tests and periodic bone marrow tests to see what it does. In short, there is no harm in waiting to see what happens.
Levi came through surgery just fine. He was a little ouchy after coming out of general anesthesia, but what can you expect - it is a lot for a little guy to go through two of these procedures in one week! He again went several hours (10 to be exact) without being able to nurse. He did so well, we are so proud of him. He just snuggled up and slept through most of the day. He is a tough little guy. Since they didn't put the central line in, we were able to come home tonight. It was so nice to be heading home to see our little girl rather than getting admitted and preparing for a long stay in the hospital! We should know more about the bone marrow biopsy results and additional genetic testing later this week.
We appreciate all of your prayers and support. We have received so many messages, emails, and texts that it is becoming impossible to answer all of them individually. God is teaching us a lot through this experience, especially to persevere, to be bold, to be thankful, and to consider all things joy. We need to remember that it is a privilege to be a part of His bigger plan. We are praying expecting Levi to be healed, and ask that you do the same.
Now, time to get some sleep...
Michael & Stephanie
Steph, Levi, and I arrived at Riley this morning around 8:30. There was some confusion on where we were actually supposed to be (we found out later that there was a surgery team waiting for us to show up at the downtown Riley campus at 10:30 am even though we were really supposed to be at the North campus at 1:30 for the surgery).
After arriving, we talked to the doctor and found out that he had done some more research over the weekend to find out what type of leukemia Levi has. When he called last Friday, he was pretty concerned about the preliminary diagnosis. After more tests were completed, he thinks now that Levi has a subtype of AML leukemia that is not as aggressive as originally thought. They performed some more blood tests, and found that his red blood cell count, white blood cell count, hemoglobin, and other blood levels were normalizing. There was a big change for the better over last week's test results. This was great news.
Because the doctor had adjusted what he thinks Levi has, and because his blood tests were much improved, they decided that they did not want to put a central line in Levi. Instead, they decided to just do a bone marrow test, an additional skin biopsy, and a test on his spinal fluid for the sake of being thorough. The doctor says that the type of leukemia that Levi has will sometimes go away on its own. Although this is rare, we are praying for this outcome. He says that if the bone marrow and biopsy tests come back ok, he is not planning on starting chemo. Instead, he wants to watch the leukemia by performing regular blood tests and periodic bone marrow tests to see what it does. In short, there is no harm in waiting to see what happens.
Levi came through surgery just fine. He was a little ouchy after coming out of general anesthesia, but what can you expect - it is a lot for a little guy to go through two of these procedures in one week! He again went several hours (10 to be exact) without being able to nurse. He did so well, we are so proud of him. He just snuggled up and slept through most of the day. He is a tough little guy. Since they didn't put the central line in, we were able to come home tonight. It was so nice to be heading home to see our little girl rather than getting admitted and preparing for a long stay in the hospital! We should know more about the bone marrow biopsy results and additional genetic testing later this week.
We appreciate all of your prayers and support. We have received so many messages, emails, and texts that it is becoming impossible to answer all of them individually. God is teaching us a lot through this experience, especially to persevere, to be bold, to be thankful, and to consider all things joy. We need to remember that it is a privilege to be a part of His bigger plan. We are praying expecting Levi to be healed, and ask that you do the same.
Now, time to get some sleep...
Michael & Stephanie
God is working...
I just wanted to let you all know that we have had a good day today at the hospital. I will try to post a much more detailed story tonight, but have to go now, we are going to go see Levi and GET READY TO GO HOME TONIGHT!!!
Sunday, May 2, 2010
A Prayer for Levi...
This is a prayer that my sister Hannah Whitesell wrote for Levi. Thanks Hannah, it is beautiful and sums up so much.
...
Far be it from me Father,
That I should question Your will.
Practicing this faith is now harder,
With my heart in anguish still.
Life it is no longer,
What You designed it to be,
Our need for You is so much stronger
Your plan we cannot see.
Please be over this little child
Hold him ever closer in Your hand.
Give him strength for this trial.
He fights what he can't understand.
Precious little one so dear
It just cannot seem fair.
The fruition of our fears
Remind us You're still there.
Make of Him an example Lord
Of Your loving might.
For Your help we implored
Please hold him through the night.
From his very beginning
May we see Your grace.
While our world keeps on spinning.
Help us look upon Your face.
...
Far be it from me Father,
That I should question Your will.
Practicing this faith is now harder,
With my heart in anguish still.
Life it is no longer,
What You designed it to be,
Our need for You is so much stronger
Your plan we cannot see.
Please be over this little child
Hold him ever closer in Your hand.
Give him strength for this trial.
He fights what he can't understand.
Precious little one so dear
It just cannot seem fair.
The fruition of our fears
Remind us You're still there.
Make of Him an example Lord
Of Your loving might.
For Your help we implored
Please hold him through the night.
From his very beginning
May we see Your grace.
While our world keeps on spinning.
Help us look upon Your face.
It's all starting to sink in...
Things are starting to sink in now. Stephanie and I are down to making a list of things to pack for our trip to Riley Hospital tomorrow morning. I wish it had been a little nicer outside so I could have spent some time with Caylee playing outside, but oh well. Her Grandma Sharlene is staying this next week at our house with her, and she always has fun with Grandma. My family was able to come up this weekend to spend time with us; it was great to see everyone, and Levi got plenty of attention. He, of course, soaked it all up.
Steph's parents are meeting us down at Riley in the morning to keep us company like they did last week, which is much appreciated. It's sure nice to have someone to talk to, especially when your little boy is back in the operating room. They are so good at keeping us calm.
We're not sure how long we will be down in Indy; it may be at least 10 days if Levi has to get started on his first round of chemo. We will know much more tomorrow evening (at least that's what we've been told). Please pray for our little boy, he will be put under with general anesthesia again, and will have to go most of the day without eating. It's hard to convince a 6 week old boy that he needs to wait to eat, but he did so well last Monday that we're hoping he will manage just fine this time too. There are literally hundreds of people around the nation that are lifting him up in prayer, so we are confident that soon Levi's story will be yet another one of countless success stories of little ones beating cancer and leading happy and healthy lives.
We'll keep you posted...
Michael
Steph's parents are meeting us down at Riley in the morning to keep us company like they did last week, which is much appreciated. It's sure nice to have someone to talk to, especially when your little boy is back in the operating room. They are so good at keeping us calm.
We're not sure how long we will be down in Indy; it may be at least 10 days if Levi has to get started on his first round of chemo. We will know much more tomorrow evening (at least that's what we've been told). Please pray for our little boy, he will be put under with general anesthesia again, and will have to go most of the day without eating. It's hard to convince a 6 week old boy that he needs to wait to eat, but he did so well last Monday that we're hoping he will manage just fine this time too. There are literally hundreds of people around the nation that are lifting him up in prayer, so we are confident that soon Levi's story will be yet another one of countless success stories of little ones beating cancer and leading happy and healthy lives.
We'll keep you posted...
Michael
Saturday, May 1, 2010
A little history...
Levi Nathan Whitesell was born on March 17, 2010. He was actually scheduled to arrive a few days later, but he decided instead that he wanted to be a St. Patrick's Day baby. Stephanie was at work, started having pretty serious contractions every few minutes, and we ended up heading to the hospital that evening. They were able to get Stephanie in for a c-section a couple hours later, and he was born at 9:46 pm. He was 8 lbs 15 ozs, and 21.5 inches long. From day one, he was a beloved part of our family.
Levi has an older sister - Caylee Grace Whitesell. She is just over 2 years old, and loves her little "bubby". She is ultra-concerned when he cries, kisses him goodnight every night, and loves to hold him (even if it is only for a few seconds at a time). Caylee is our little sunshine, and she and Levi are on the fast-track to be lifelong best friends. We can't wait to watch them grow old together.
A couple of weeks ago, Stephanie noticed a spot behind Levi's ear. We didn't think too much of it, we thought it was a bruise or just one of those spots that babies get. He started to get more spots though, and the old ones weren't going away. She made the call to take him into the doctor's office to get them checked out. The doctor examined them, went back to read some literature, then came back into the office very concerned. He ordered stat chest and abdomen and chest x-rays, blood work, and urine tests. He wouldn't, however, tell Stephanie what he was checking for.
The next morning Stephanie and I went into his office to see what was going on. The tests came back ok, but he wanted us to head to Riley or St. Vincent's hospital to check for neuroblastoma, which is apparently the most common form of childhood cancer. We were pretty shook up, and immediately scheduled an appointment at Riley.
This past Monday, we took Levi to Riley for more tests and biopsies. They took three of his spots completely off, and performed an ultrasound of his abdomen. The ultrasound results came back ok, and they were able to preliminarily rule out neuroblastoma. We were relieved, but didn't realize that the finding gave way to some more formidable diagnoses.
We had to wait all week for the results, which we finally received yesterday afternoon. We found out that Levi has leukemia. We are supposed to head down to Riley again on Monday morning, and have to pack our bags for a long stay. They are planning on performing a biopsy of his bone marrow and genetic testing. There is a possibility that he will have to start chemo on Wednesday, and we may need to think about a bone marrow transplant. These are all very scary words for us.
There are many, many unknowns at this point. We are relying on God's strength and the prayers of literally hundreds of people around the country to get us through this. Levi Nathan is a tough little guy; he will beat this. It will be a long, hard road, but we know that God has bigger plans for him than what even we are able to see now. We appreciate your prayers, support, and thoughts.
Michael & Stephanie
Welcome
Hello dear family and friends. Stephanie and I have created this blog to provide you with updates on our little buddy Levi's fight with leukemia. We have only known that something was wrong for a little over a week now, but the outpouring of love, support, and prayers has been both overwhelming and humbling. We have a long road ahead of us, but we know, with God's help, that Levi can win this battle. He is a tough little guy fighting a tough disease, but our God is tougher. Please feel free to read our posts and comment as you feel led.
Love you all,
Michael and Stephanie
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