an open letter

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an open letter

Dear Donor,

We have sat down more than once and tried to write this letter. At Thanksgiving, it seemed fitting because we are so grateful to you, but the words wouldn’t come out right. At Christmas, we acknowledged the gift you gave to us, but again, trying to process what to say has been challenging. But now…today seems fitting because we got notice that C can go home soon. We are no longer looking back. Rather, we look forward to a new year and a new life in 2016.

We look forward to:

  • Seeing C come home from the city our hospital is in and we can all be together again. It’s been over 6 months since we have all 4 lived in one place.
  • Our children playing and just being together like normal siblings, for the very first time.
  • Watching C’s immune system start to function on it’s own
  • Gradually taking away more and more meds as C recovers
  • A year where we get to celebrate each holiday out of a hospital with our family and friends
  • Family cook outs on the driveway and watching both our kids ride their bikes
  • A family vacation to the mountains, in the fall. We want to camp, climb, explore, collect rocks and go fishing.
  • Seeing C start preschool in the fall and get to socialize. He loves people and always longs to play with other children he sees from a distance.
  • Having a “Be the Match” drive on C’s one-year anniversary to find more donor’s for those who need BMT.
  • Teaching C how to hit a t-ball

Beyond this year, there are so many things C will get to do in life because you so selflessly gave. Because of you, we have a new, fully energetic son. He is %100 boy! He loves knocking over towers, throwing balls, growling like a tiger and wrestling. He also has a tender side. He loves to give fist bumps to everyone. He likes to sing, play the piano (or bang on it J) and dance. His favorite things are Elmo, whom he calls “La La,” Minnie Mouse, the slide in our backyard, and of course, his iPad. It’s been pure joy, watching him discover the world around him and develop a great personality. None of this would be possible without you. We know that you had to take time to get blood test, fill out paper work and to have your bone marrow removed. Thank you. I’m sure it was painful too and you did it anyway. Thank you. Who knows when you registered to be a donor or why…maybe you even forgot about it until you got the call. I know that you acted quickly, because C needed a donor fast after his first transplant failed. Thank you.

When 2015 began, C was in the hospital where he had been for just under four weeks. The doctors had no idea what was wrong with him. Little did we know that the entire year would be spent on a journey to save our son. He is special. In fact, we lost a baby just five months prior to getting pregnant with C. That taught us that sometimes you have to experience great loss before a great gain. We believe this to be true about this past year. We have felt so much grief, but we have also felt much comfort from our community, doctors, nurses and strangers. We have lost what feels like a lot of precious time, yet we have gained a lifetime for our son and hopefully a new friend in you.

We would love to know more about you if you would like to respond. Please feel free to ask any questions, about anything. We are an “open book” per say and would love to share this story together!

Peace,

Kenny and Ashlee Osborn

 

 

 

 

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Lots to Share!!

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Lots to Share!!

It's been a while since we posted on the blog. So much has been happening it's been hard to find a spare moment to sit down and write. Charlie is doing so well! In fact, this past week they released him from the hospital. His engraftment study revealed that he is at 84% donor cells. The highest he can be is at %100. They took his blood a few days ago and we are opening the next results come back even higher. Even though he's out.. he has to be within 20 minutes of CCH for up to 100 days for clinic visits, medicine management and in case of any complications, which are most common in the first three months. We are staying with some great friends, who have become our family through this journey. 

Kenny is with C now and I am with Lucy. We are switching back and forth about every 2 weeks so that we can both work and see both children. Plus-now that C is home from the hospital, there is a lot to do for him. We give him all his meds, food, and laundry. These are things the nurses did in the hospital. He gets 12 meds in the morning, an afternoon pump medicine and 8 meds at night. He gets food on a pump overnight but the food can't sit longer than 4 hours so we have to change it twice through the night. Kenny said it takes 30 minutes to prep his medicines and then about the same amount of time to give them to him bc if we go to fast it makes him sick to his stomach. He's still having lots of overflow diapers so that's an additional task, multiple times through out the day. It's a LOT of work having him home but it's better than being in the hospital. C is loving life. He plays inside, outside, goes on walks and car rides. He can't be around large groups of people so public places are off limits for probably a year. 

As for me, it's been a great week. I got to go to church on Sunday and then work through the week, which always gives me a boost! Lucy begged to sleep in my bed with me when I got home so I caved. She started out sleeping so sweetly and before I knew it, her feet were in my face....I regret my, "yes." This weekend, we came to Kansas City for a girls weekend of shopping, eating and theater. We are going to see Wicked tonight and I'm super excited to experience this with her. She's never been to a high quality show like this, and I'm pretty sure it's going to change her life. At the very least, we'll be belting out the songs together on the drive home. 

 Prayer Requests:

  • Pray that Kenny and I can keep our sanity when we are alone in Cincy. We won't have each other to help take care of all Cs needs and that an be a bit overwhelming. 
  • Pray that engraftment goes up to %100 and stays there
  • Pray that C doesn't have any complications and that we can come home before Christmas day.
  • Pray for Tate Tucker and his family. They are from Tulsa, and see the same pediatrician as us. Tate is 2-yrs-old and having a BMT at Texas Children's for an immunodeficiency.

This is the Tucker family. Please save this pic and pray!! 


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Miracles still happen today!

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Miracles still happen today!

As I posted earlier today on FB, Charlie's ANC was 540. This is the first of many achievements he needs to make on his journey to being healed. There were a few moments throughout the day, when I would catch myself thinking," what if his numbers are down tomorrow? what if he grafts and then looses it? what if he gets chronic GVHD?" But then very quickly I would just whisper, "No." I'm not going to let the "what if's" ruin the joy of TODAY!! Today, I saw a glimmer of hope that this will all be worth it, that Charlie could go to preschool next fall, that our family could be back together and I WILL allow those thoughts to linger. . . . 

You know what...God still performs miracles today. I was reminded of this as I took my evening walk back from the hospital cafeteria tonight. Right outside of the exit, there is a little shrine to a doctor named Albert Sabin. He is one of the earliest HEROs to come out of Cincinnati Children's Hospital. Sabin is best known for his development of the polio vaccine. By the late 1950s, children all over the world were receiving the vaccine. My father was one of those children. In fact, two out of the three doses were recommended for complete protection against the crippling disease. Unfortunately, my dad had only taken two of the three before he was stricken with polio. 

I knew my dad had polio when he was around 5 years old but it was a long time before I knew the full scale of what he went through. My dad walked with what I thought was a "strut" like John Travolta on Saturday Night Fever, but it never occurred to me that it was really a bit of a limp. Either way...I've always thought he was cool so the strut made sense. Anyway---as I grew up my granny would share bits and pieces of dads story with me. When he first got sick they put him isolation, like the bubble boy. My granny said she could only talk to and see him through the plastic. She told me of how she longed to hold on to him when he was in there. She was scared because they really didn't know much about polio still and what they DID know wasn't good. The polio stuck my dad's foot and lower leg. The doctors told Granny that he would never walk again. Dad was her youngest child, the baby of three boys. This was especially painful for her because she had already lost two other children...one through miscarriage and the other died just a few days after birth. She was heartbroken to hear that daddy would be crippled. Although there was pain, there was also faith. If you were to meet my Granny, you would know that there is something very special about her. She has an incredible faith in God. I have to admit that I used to think she was a little too charismatic about God's power. (Now, in my defense, you must understand that my generation grew up watching televangelists slap people on the head in the name of Jesus and telling it's viewers that for a $10 donation you could help them continue the healing ministry. I digress.) BUT as I'm writing this...I'm realizing all Granny went through, all she's seen and her unwavering faith makes a ton of sense. She wasn't crazy...she was and still is right about the power that comes from Jesus Christ. She's pushing 90 years old and if there is anyone who I KNOW is "on her knees" for Charlie...it's Granny. Because of who she is, my dad is the man he is today.

Meaningful talks with dad were not unusual. We just clicked like that. He always had good advice and he was patient enough to listen to my long detailed stories. One night, when I was much older, like 18 or something, my dad and I were chatting it up and we got on the subject of miracles. And he said, "You know that God performed a miracle in my life don't you?" I was confused. He said, "My polio... God healed me." As I mentioned earlier, I never spent a lot of time thinking about dad's polio. I new he had it, but it didn't really effect his life now so we never talked beyond the fact that he had it as a boy. It was in that conversation that dad shared one of the most beautiful testimonies I ever heard. He reminded me that the doctors said he would never be able to walk on his foot again. He used crutches or my Papa would carry him when he needed to go from one place to the next. One day, my Granny was cooking dinner and my dad was sitting over by the window while he watched his two older brothers play outside. He told me that he was so jealous watching them play and run. His heart was in so much pain because he longed to be normal, he longed to play with his brothers but he couldn't even put pressure on his foot without being in excruciating pain. In that moment, he remembered the stories from church about God's ability to heal the sick. God had even healed a lame boy just like him. Dad remembered the verse in Mark that says, "I tell you the truth, you can say to this mountain, "Be lifted up and thrown into the sea ,and it will happen. But you must really believe it will happen and have no doubt in your heart."  So-he spoke to God and he said, "God, I know you have healed people....would you heal me? If you heal me and let me walk again, I will give back to you my whole life."  Then, with what they call "faith like a child," my dad stood up and put pressure on his foot. The pain was gone. He took one step and then another and another until he was standing in the door way to the kitchen. He called to my Granny and when she turned around, she dropped the frying pan. It had been so long since she had seen my daddy walk. She was witnessing a miracle. From that moment on, my dad has walked with no complications. 

I am tearing up as I write this, in the same way I did the night dad told me this story for the first time. Miracles still happen today. I know that not everyone's story turns out like this and I don't know for sure how Charlie's story will turn out. But I know that if God CAN perform a miracle in my dad's life, he CAN do it in mine and yours too. While I am thankful for modern medicine and doctors like Dr. Albert Sabin, it is Jesus Christ who has the power to heal us...of both our sorrows and our physical ailments. No matter what tomorrow holds, I will trust in the Great Physician. 


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Day +4

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Day +4

It's been four days since Charlie got his second transplant. He seems to have lots of energy..more than normal. He's been happy most of the time and very talkative.  Last night, during his sleep, the PCA came to change his diaper and he got very upset (I would too if I woke to someone cleaning my tush with a cold wipe). So he called out, "Mama, help me!" I woke up and went over to comfort him. It was sad and cute at the same time to hear his little voice say these words. I also noticed that he put three words together for the first time when he said, "Mama, help me!"  Our speech therapist feels like she is seeing improvement in him everyday. She said that once he is able to get out into the world and interact, he'll catch right up. This makes my heart happy. I don't want him to be behind or ever feel like any of this has to slow him down. I want him to walk away from this whole year knowing that he can do anything, overcome anything and that he is a tough little dude!! Charlie likes me to sing to him at bedtime. A few nights ago, I introduced a new song. I can't remember the exact title but the lyrics are:

"My God is so BIG, So strong and so mighty there's nothing my God can not do!

The Mountains are His, the rivers are His, the stars are His handiwork too

My God is so BIG, So strong and so mighty

there's nothing my God can not do

for YOU!"

I've also been teaching him "This Little Light of Mine." He loves to shout "NO," when I say,  "hide it under a bushel." I'll try and catch this one on video because it is super adorable. Speaking of adorable. Here is a video of him from today:

We want to say a big "thank you" to those of you who joined us for the live broadcast of Charlie's Second Transplant. We knew our family would want to see it but we never thought that so many of you would log in on a Friday Night to pray with us and send us encouraging messages. Click Here to watch if you missed it. 

Everyday I am blown away by the people who have come around us. In the midst of all that's going on, I sometimes find I'm feeling sorry for myself but then God reminds me of the many blessings we DO have like.... so many people walking with us. I can't emphasis enough how life giving YOU have been to us.

Here is how you an be praying with us:

  • Pray that Charlie's cells engraft and hold at 100%.
  • Pray against GVHD both acute and chronic
  • Pray I don't go too crazy while I'm here alone for a week, starting Thursday. 
  • Pray for my friend Fatima's son Eaid. He got his second transplant the same day as Charlie and they too are praying it works this time. 
  • Pray for my friend Anne and her son, Ben, who is having a tumor removed from his lymph nodes on Tuesday. They will do a biopsy and we are praying against cancer!!
  • Pray for my friend Meredith and her dad C.E. He has stage four cancer and just finished his third round of chemo. Pray for energy and complete healing!!

 

 

 

 

 

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Day 0 - Again

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Day 0 - Again

"The journey has been hard, but it's been sweet"

I wrote that sentence 38 days ago on our first Day 0 believing that we had entered another phase of this journey with our son.  The idea of graft failure hadn't even entered our mind as an actual possibility.  Ashlee and I had talked about it casually.  We had told people that it was a risk, a particular risk when cord blood is used.  As the days went on and we still didn't see any sign of engraftment for Charlie the conversation became more and more real with all the fears and anxieties associated with it.

On this new Day 0 here are three reflective thoughts:

_Our journey with Charlie over the last 12 - 15 months has been nothing short of hard.  It's dominated our thoughts, prayers and worries.  There is no explaining this journey succinctly because there is too much context to be given.  Too many emotions felt.  Too many fears realized.  It's been hard - very hard but it's not the hardest thing that Ashlee and I have ever walked through (We'll reserve that for another blog post).  God has been preparing us for this part of our journey for a long time.

_The journey has also been sweet.  How is that possible?  On the evening of December 14th 2014, our family was on the verge of losing Charlie.  The prayer at that point was that he would make it through the night.  Ashlee and I left our son's hospital room and went on a walk.  We stood in a private room down the hall and had to look at each other, with tears in our eyes, and we determined right there that no matter what happened to our son that we would be okay.  I wonder if that's the moment when the decision was made that this journey would be sweet.  I wonder if, more often than not, it really is up to us how our difficult circumstances affect our day to day.

_I'm sure as time goes on I'll be able to put into better perspective the idea that someone would step out of their normal routine and save the life of another.  I can't think of a better picture of redemption than what is happening today.  A 31 year old male, some where in this country, has probably already donated his bone marrow to our son.  That marrow is on its way here now and Charlie will receive it later today.  We have to wait a year to meet this individual - but we can't wait until we do.  Can't wait to let him know the story that he's a part of.

People have been drawn into the story of this little boy.  We've been blown away over and over again by the many who pray for C and encourage us each day. What's even more sweet are the people God has brought into our lives, people we would have never known otherwise. God has given us a family made up of many families here in Cincy, who are taking care of us. We've received gifts from people we've never even meet, and been stopped in public by strangers who have read C's story via a mutual friend.  Our prayer is that he'll be a living testimony for years to come of God's sovereign power in our lives; an example of how God intervenes and uses us. 

 

God, your God, has blessed you in everything you have done. He has guarded you in your travels through this immense wilderness. For forty years now, God, your God, has been right here with you. You haven’t lacked one thing.
Deuteronomy 2:7

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Day -5 and the donor

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Day -5 and the donor

Today was football day.  And that's a good thing!  I love looking over at the TV and seeing the NFL on the screen.  And Charlie likes it when something exciting happens in the game.  Since we've been in Cincinnati we've tried our best to adopt the local teams here.  Like when we lived in Chicago, we enjoy being in a town that love their teams.  The Reds have been horrific this year - which is good for ticket prices.  We've been to several games so that's been fun!  Today we watched the Bengals take on the Chargers.  Here's Charlie below decked out in his Bengals gear:

Enough about football!

On Friday I had a very interesting conversation with the search coordinator that is handling everything related to Charlie's new bone marrow donor.  There really are a lot that of logistics that go into making sure that it all goes off without a hitch on Friday the 25th.  

The donor will go in for the procedure early on Friday morning.  We're not allowed, at this point, to know where the donor located other than that it's a donor that's located here in the United States.  We do know that it's a 31 year old male that is a perfect 10/10 match for Charlie.  This is great news because the better the match the more likely the donor's immune system will accept Charlie.

When they collect his marrow they'll use needles that will be able to go into the donor's pelvic bone to draw out the liquid marrow.  Our doctors here are requesting the maximum allowed donation which is 1500ml.  That's a lot of volume.  To visualize that imagine a 2 liter bottle of soda that is 75% full.  Don't worry - it sounds scary but it's perfectly safe for the donor.  His marrow will recover in just a few weeks time.

Once the marrow is collected they'll need to transport it here to Cincinnati so that Charlie can use it.  During the procedure in the O.R. there will be, present in the room, a courier who will be responsible for transporting that precious marrow from the donation site to this hospital.  He'll be responsible for placing the blood and marrow into a specially designed cooler and carrying it onto a commercial flight and personally flying it here.  He'll have all of the proper documentation to make sure that he's able to get through security and priority status so that should travel issues arise he can reroute and still get arrive.

Once here, the marrow will have to be processed.  All of the red blood cells will be taken out as well as the plasma.  So all we're left with are the white blood cells that are the building blocks for Charlie's new immune system.  Our docs don't want to risk graft failure again.  Charlie has already been without an immune system for nearly two months now.  While we've seen some active viruses and bacterial infections in Charlie, he's been lucky because the docs have been able to control those infections with drugs.  It's not possible to do that for much longer so they're giving Charlie a massive dose of cells.  He'll be getting nearly 10 billion.  Last time he received only 348 million viable cells.  Not quite enough to reach a critical mass and proliferate (That was one of the risks on the front end of cord blood).  He'll be getting nearly 30 times more viable cells than he got the last time.  

Many of you are praying with us.  We're grateful for that!  As you pray please keep this entire process in mind.

  • Pray for the donor.  He's a living hero!  Pray that his procedure goes according to plan and that he recovers well.
  • Pray for the courier.  Pray that he's able to travel to Cincinnati without incident and safely delivers the marrow here.
  • Pray for the lab processing the marrow.  Pray that those technicians will take special care to ensure that these cells are delivered to Charlie properly
  • Finally, pray for Charlie as he receives these new cells.  Pray that they'll accept his body without incident.  Pray that we see full engraftment quickly.

Thank to all of you!

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Day -10 and the stars

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Day -10 and the stars

It's official. Charlie will have a second transplant on 9/25. The bone biopsy came back hypo-cellular which means there are no cells. The doctors also did a peripheral test that showed 17% engraftment which is consistent with failure. They believe that the cells from the cord blood were not viable enough and C also had the HHV6 virus which can cause failure. It's frustrating at best and we are disappointed with what will now be an extended stay in Cincy. Luckily, God has placed some special people in our lives to help us there. I really need to write a blog post about these earth angels....stayed tuned for that! C will have to do more chemo but it will be much lighter. He handled the busulfin/cytoxin with few side effects and it's supposed to be the really hard stuff....so we are feeling optimistic. His donor is a perfectly matched 31-year-old male. From where we don't know but on the morning of 9/25 they take his marrow, fly it to Cincy and put it in C all within the same day. This just blows my mind: that someone would be so generous AND that God created our bodies in such a way that this is even possible. He is a miracle worker!

Meanwhile, I am at home to see my Lucy girl and to spend some time at work. Kenny is on hospital duty this week and I will join him late next week so that we can be together for transplant #2 . Tonight, on our way home, Lucy's itouch sounded a reminder. It said, "Kiss mom and dad." So I leaned over to receive my reward. Then she blew two kisses out the window and said, "Sometimes I imagine that the stars can send my kisses to Cincinnati to Charlie." . She's mentioned C dying to me twice and I've barely been home 24-hours. Even when she mentions it, she has a smile on her face. Although she's handling this very well, underneath she is still processing it all. I am amazed at how in touch she is with her feelings. The way she articulates whats going on inside makes me so proud of her. There are times when her free spirit makes my type A personality a little nuts....I"m not gonna lie. However, she also inspires me and tonight I caught the vision in the stars too. I couldn't help but be reminded of this brother and sister duet from my childhood. (see the video here).

Good night friends!

 

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Day +24 or Day -14

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Day +24 or Day -14

We'll last night after I posted on the blog, I thought I was going to get a quick 5 hours of sleep before waking to take C down for his biopsy. Just after midnight, the nurse came and said that Cs hemoglobin was 7.4 and he has to have blood in order to have the biopsy. So the lab began prepping blood to give him. Some of you may remember that C has been very reactive since his BMT and that in addition to pre-medicating him, they wash the blood 3 times to get out all of the extra junk that may cause the red rashes all over his body. Well, at about 4am, the lab called and said that the bag of blood broke on the 3rd wash and that they had to start over. The entire process takes over 3 hours. Thus began a tense conversation between our doctors, the OR doctors and the anesthesiologist. As a mother, I appreciate ALL the watch dogs. From each person's perspective there was a reason to either wait or move forward with the procedure. In the end, the blood came mid morning and C had almost received the entire dose when OR came to get him. He was being worked into the schedule so we had to take what they could give us. All of this madness equalled very little sleep for mommy. Charlie, however, has been sleeping great. He was less nauseous today, but has been red and itchy due to his transfusion. We are hoping the blood gives him more energy and that he wakes up a new man tomorrow.

A fist bump is Charlie's way of saying "hello" or "I love you." He often just says my name and reaches out with his fist. It's super cute. So---fist bumps to all of you for taking this journey with us. 

A fist bump is Charlie's way of saying "hello" or "I love you." He often just says my name and reaches out with his fist. It's super cute. So---fist bumps to all of you for taking this journey with us. 

At about 7pm, I went down to the parent lounge to eat my dinner. We are not aloud to eat in Cs room. The nurse came to tell me that the attending doctor was in Cs room and wanted to talk to me. I knew this was odd bc we never see the doctor outside of morning rounds and his shift ends at 7pm. Immediately, I knew that he was coming with biopsy results. I came in and we shot the breeze for a while. I could tell he was nervous. Finally, he said that the initial report came back showing that there were NO cells in Cs bone marrow. They will still test the bone piece itself over the weekend but at this point, they are fairly certain the graft has failed. The good news is, I received another unannounced visitor earlier in the day. 

Kristina is a search coordinator. She works with matched donors to get them scheduled for blood tests and ultimately a bone marrow donation. She came with the news that our 31-year-old male was contacted on Wednesday and that yesterday he went in for a counseling appointment where it was explained to him Cs needs for a second transplant. After that appoint, the donor signed a consent and committed to donate on September 25th. He will undergo a physical on Monday and a few other tests to confirm that he is fit to donate. Kristina doesn't anticipate any concerns and we'll know by the end of the week if everything is a "go." Once we hear this, Charlie will start taking a less intense chemo called Fludarabine. He will get it for 5 days and then late on September 25th, once the cells arrive from our generous donor, C will get a second transplant.

Although this is not the path we would have preferred to take, we have no regrets. We actually decided on the front end of all this that we won't play the "what if we would have" game. The truth is, while this was a surprise and disappointment to us, God isn't surprised at all. He knew Charlie long before we did. He knew about all this and He loves my son more than I ever could. (Which is hard to imagine, but true.) He's not surprised and He's not scared. He is Alpha and Omega. He knows how this will end. My hope is that it ends with the complete healing of Charlie's body.

But you know what? I've been thinking a lot about what it looks like for my son's life to be saved. And at the end of the day, we are only saving his earthly body. Charlie is going to grow up to be a boy who will then someday be a man. And along the way, I will still be praying for God to save him. Charlie needs salvation from his sin. While he is only two-years-old, the bible is very clear that we are all sinners. You see, I can't save Charlie from his sin. I can't sign a consent form or give him a "Jesus transplant." That is all up to Charlie himself and it will be my prayer for him everyday that he chooses salvation in Jesus. 

Todays Prayer Request:

  • pray that God would protect C was viruses and bacteria as he awaits his next transplant. We don't need any complications!!
  • pray that God would use Cs story to change peoples lives. If you are reading this and you are wondering what this "salvation" stuff is I'm talking about. I'd love to share that with you personally. Click here to hear more about Jesus. 

 

 

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Day +23

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Day +23

You may be wondering if Charlie has cells yet. Me too. Charlie's doctor and I had a good conversation yesterday. I asked some very direct questions and he gave me some very direct answers. So, I'll do the same for the many of you who are so faithfully praying for Charlie and journeying with us.

At this point, it doesn't look promising that Charlie's cells are going to graft. However, I've had two of the doctors tell me today that it's not unheard of for the cells to start coming in this late. They just usually see an appearance by now. There were a few ANCs, monocytes and Lymphocytes this morning but we've seen them rise this high and then go back to zero a couple of times over the last few days. Therefore, we will be more hopeful if they have risen even more, tomorrow. I'm still holding out hope that his cells will graft despite the odds. My God is bigger than graft failure or cell viability or an enemy that might want to get in the way of saving my son. 

Ttomorrow, or really I should say today (Friday)..... Charlie will have a bone marrow biopsy at 6:30am EST. They are going to take some blood and a piece of the bone to see if there are donor cells brewing that just haven't surfaced yet. We should have the results in by the end of Monday. This will confirm whether or not we need to do another transplant. Because of the type of chemo Charlie had, it's very possible that we can do another transplant in a few weeks. The determining factor will most likely be getting the donor to work out his schedule. Many of you may remember that there was a 31-year-old male who did some additional blood work for C and was willing to donate. The search team is in the process of contacting him and some of the other perfect matches. They do not want to wait to get the ball rolling on donors. They can always stop a donation at the last minute if Cs cells start to come in. However, they can't hurry up the logistics of getting new bone marrow if they find out Monday that this first transplant didn't work. The truth is, C is very vulnerable right now. It seems as though every few days he is recovering from one virus and getting another. Time is of the essence.  

Cs been sleeping a lot the last few days. I am praying he wakes up yelling "mama" at me in the morning. 

Cs been sleeping a lot the last few days. I am praying he wakes up yelling "mama" at me in the morning. 

So, today our list is long, but here is what we would ask you to pray:

  • Pray that Cs cells engraft. This is best case for C and for all of us. I don't want him to be sick any longer and I don't want our family to be apart any longer. A new transplant = starting over.
  • Pray that C would feel better. He's been nauseas and wrenching so much. The meds we give for nausea make him high as a kite (seriously-he laughs at thin air and can't even walk) and then he goes into a coma and sleeps for long periods. I hate this because I've been used to a little active monkey. I miss his personality. 
  • Pray that Charlie wouldn't keep getting viruses or bacterias. They could be life threatening if he gets the wrong one. 
  • Pray for a few of our fellow families on the floor. (1) Pray for Haddie's 4-year-old son. He had a biopsy a few days ago and they got word today that his transplant has failed. I haven't been able to talk to her bc she won't come out of his room. She is very upset. I don't know yet if they have another donor. (2) Also pray for Brandon. He is 10 years old and has been here for 6 months. He's had many complications and has been in and out of the PICU. He is currently there with a collapsed lung and they think he may have GVH in the lungs which is not good at all. His mother, Andrea, told me today that she is at peace if he doesn't make it through this. However, I know she would rather he did. Every time I see her, she is so down and so tired. 

A couple of Reds players showed up to visit. Someday, C will watch this and think it's pretty cool. 

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Day +20

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Day +20

This past weekend it was good to have my parents and Lucy in town. I know my folks enjoyed getting to see Charlie and he loved seeing them too. Kenny, Lucy and I made two attempts to see a Reds game. Both were rained out so I guess it wasn't meant to be. However, both nights we ate over priced ballpark food so I can't complain too much :) It was really good to have both my kids and my husband together in one spot. We unhooked C from his lines for about 3 hours and we all got to sit together, play and sing. C was so tired that night from all the action that he passed out without his melatonin before 9. This never happens!

He stayed in this position and didn't wake up even when the nurses came to do vitals throughout the night. You can also see that his hair is starting to grow back. 

He stayed in this position and didn't wake up even when the nurses came to do vitals throughout the night. You can also see that his hair is starting to grow back. 

So good to all be together!! Lucy had to wear a mask because she had a rash on her face. I told them they had to let her in because she drove 14 hours to see her brother and I wasn't going to tell her she couldn't ;) We compromised with the mask. 

So good to all be together!! Lucy had to wear a mask because she had a rash on her face. I told them they had to let her in because she drove 14 hours to see her brother and I wasn't going to tell her she couldn't ;) We compromised with the mask. 

Yesterday Kenny went back to Tulsa. We've officially started rotating care for C and L. It's really hard to think about not seeing my husband very much between now and Christmas. We've scheduled some days of overlap so that we spend time together but that's just not enough. Then, today, my parents and Lucy left. I was only alone for 30 minutes when I started feeling....alone. My inner pep talk sounds off, "Come on Ash, it's only the first day. You can't go south yet."' So I did some laundry, cleaned our room and spent some time reading a new book. Being active helps. I don't do well with the isolation of this tiny room. This is how I'm feeling today. I'm sure tomorrow I'll feel better and I'll try to write about that too. It's definitely a roller coaster ride. Kenny was having a hard day yesterday and today he's doing great. We tend to take turns like that. I know that it's God making sure we are able to take care of each other through all of this.

Dropping him off at the airport. We did a "frownee face" selfie. 

Dropping him off at the airport. We did a "frownee face" selfie. 

BIG PRAYER REQUEST: 

We need Charlie's new cells to come in. Tomorrow is day +21 and we still haven't seen any. There were barely some cells a few days ago and then they went away. Everything is at 0 and it has us stressing. We've never really considered graft failure as an option and in the last few days it's been floating around in the back of our minds. The doctor said we wouldn't worry until day +28. To be honest, I want to wake up in the morning and see cells on his report. I want to be writing you about how I worried over nothing and that I prematurely panicked. I have been and will continue to sit by Charlie's bedside, pray over him, lay hands on him and claim HEALING over him. Would you ask the Lord to make his donor cells grow and graft? We need you to pray with us!!

 

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Day +16

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Day +16

So-it's been a whole week since we last sent an update so this ones going to be long. It's been a busy week, so my apologies for not doing a better job of updating you. To be honest...this last week in the hospital was especially hard for us. We were feeling really isolated and by the time Saturday rolled around, I was pretty teary just from longing for "normal," and I was really missing my Lucy Bloom. However, in the last few days as some of you have asked for an update, I am reminded that you have not forgotten about C and are still with us!! Thank you.

Last week, Charlie was doing really great. He was feeling so good that we starting weaning him down on his pain med dosages. He went on TPN, which is basically a concoction that replaces the nutrients he needs from normally eating foods. This is to be expected and he's doing really well on it and his nausea is now managed easily with meds. The biggest challenge has been that Charlie is like a monkey in a cage. He feels so good right now that he want's out of his bed. So--we've been getting creative on how to play in more ways than just getting on the mat on the floor. 

Kenny has been teaching Charlie to do pulls up and he loves it. Next he'll be teaching him wall balls and burpees :) Shout out to CROSS FIT GREEN COUNTRY for praying at the box each day for C.

Kenny has been teaching Charlie to do pulls up and he loves it. Next he'll be teaching him wall balls and burpees :) Shout out to CROSS FIT GREEN COUNTRY for praying at the box each day for C.

When we first met the physical therapist at the hospital, she noticed Charlie's hypotonia right away but assured us that it's a very mild case. When Charlie walks, he pushes his knees back to help stabilize himself because his ankles are weak. So, she had an orthopedic specialist come and size him for  ankle braces. They fit right into his shoes and are not even noticeable. She said, that she bets he only needs them for a year before he self-corrects. When they brought them to us, we put them on, put Charlies' Chucks over them, and he took off. I was practically running behind him with his tower because he was so excited to be walking and be free from the bed. He kept laughing, looking out the window and climbing up and down on the chair. (see pics below) When we saw his joy, we asked the doctors if we could PLEASE figure out a way to unhook him from all meds, TPN and saline for even a small window each day. They agreed and that's been good for Cs soul. He loves not being trapped in his "cage," of a bed.

Charlie climbed up to the window, put his hands up and said softly, "Hi." I think what he was thinking was, "There is still a world out there: a sky, other people, cars and life." It was sweet and sad at the same time. 

Charlie climbed up to the window, put his hands up and said softly, "Hi." I think what he was thinking was, "There is still a world out there: a sky, other people, cars and life." It was sweet and sad at the same time. 

As I mentioned before, by Saturday I was struggling. Kenny decided that I should come home to Tulsa for a few days, but I was scared to leave. He insisted so much that he booked my plane ticket before I even agreed to go. I've been teasing him, saying "I must really be driving you crazy if you're sending me away?" But it wasn't that. He is a great husband and he knew it would be good for MY soul if I came home to some "normal." On Sunday at 1pm, after talking to the doctors, they assured me that they didn't expect any drama until the weekend when his cells start to come in. So I was wheels up at 4pm headed to Tulsa. I arrived late and surprised Lucy on Monday morning when she woke up. That was a precious reunion, well worth the trip home! I got her off to school twenty minutes late that day. I mean, I hadn't really fixed my own hair or gotten out of my comfy clothes in like 5 weeks, so trying to do her hair too and get us both out the door by 8:30 was a task I haven't attempted since May. After that I went to work and surprised my co-workers. It was a fun three days full of work, a home cooked meal, time with girlfriends, activities with Lucy, and bedtime prayers. I am refreshed. Today, my parents, Lucy and I are on the road headed to Cincy. We can't wait to see our boys!!

Lucy loves to organize things! She made a checklist of everything we needed to pack for our trip back to Cincy. She is so excited to see Charlie. She asked, "Do you think that I can be there when he's not hooked up? Then we can play together."

Lucy loves to organize things! She made a checklist of everything we needed to pack for our trip back to Cincy. She is so excited to see Charlie. She asked, "Do you think that I can be there when he's not hooked up? Then we can play together."

Here is a big prayer request for Charlie:

Over the last few weeks, Charlie has had 3 red blood cell transfusions. He has turned bright red from head to toe every time, They have pre-medicated even more and then this last time on Tuesday, they even "washed" the cells which usually does the trick. He has to have the blood, but they also can't keep giving it to him while he is reacting so they often stop before they are finished. This has been stressful and we'd really like to see it stop! He has also been in a lot of pain. We had to start giving more pain meds again on Tuesday and now he's on a higher dose than he was before. The doctors said it's pretty common to feel pain all over right before your cells start to come in, so we are just believing that's what's going on. However, it's really hard to see and know that your baby is hurting. Please pray that meds can manage his pain and that his cells will grow and graft. There is still this lingering thought in the back of my mind that this may not work. I've read plenty of stories where that's happened to other children...maybe even your child. It's heartbreaking. It's a punch in the gut. It's not what any of us want to hear. So believe with us, ,that his cells will indeed, grow and graft with NO complications. 

Charlie had an echocardiogram this week. This is routine at this point after transplant to make sure that there has not been any damage to the heart. We had to sedate him because, let's get real, what toddler is going to hold still enough for this?

Charlie had an echocardiogram this week. This is routine at this point after transplant to make sure that there has not been any damage to the heart. We had to sedate him because, let's get real, what toddler is going to hold still enough for this?

Once his pain meds were adjusted, he got out of bed but still "chilled out" while hanging with his physical therapist. I love how he's got his little feet up. I want to kiss those toes!! 

Once his pain meds were adjusted, he got out of bed but still "chilled out" while hanging with his physical therapist. I love how he's got his little feet up. I want to kiss those toes!! 

Thanks again to each of you. We couldn't do this alone and we're are thankful that we don't have to!!

 

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Day +8

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Day +8

We are more than a week since Charlie's transplant and all things considered he's really doing fantastic!  That's not to say that we haven't had a few bumps in the road.  Sunday (day +5) was a real challenge for Charlie.  He ran a fever for the first time during this entire process.  The fever threshold that they use on the BMT unit is 100.4 °F.  Since he crossed that line they immediately took blood cultures from his central line, started him on antibiotics and began testing for viruses. We did discover that he has a bacterial infection in his blood, but it's not a major issue because the pathogen isn't a dangerous one.  He was pretty sick Sunday, but since then it's been a different story.  :)

Monday, Tuesday and today have all been really great days for Charlie.  He's had plenty of energy.  He doesn't love staying in his bed all day so, as you'll see in the pics below, we get creative and make it as much fun for him as we can.

We did have two major milestones this week with Charlie.  The first is below:

We knew that this was coming, but it's still hard to see when the test comes through.  This breaks out the different types of cells in Charlie's white blood count.  The middle column shows the standard values and the column on the right side shows Charlie's values - all zeros.  While this means that Charlie's immune system is non existent it also means that the new cells won't have anything stoping them from engrafting.  

Then there's this:

We also knew that Charlie's hair was going to come out.  Knowing it cognitively and waking up to his pillow being covered in hair are still very different.  It's not been as emotional as we thought it would be but it still represents a drastic change for him.  He's going to be a really cute bald kid though!  

What I love about Charlie - and this is a growth area for me - is that he's not phased by any of this.  He's still fully engaged in life.  He's banging around and climbing all over his crib.  He still laughs and plays and has a great time.  I know in my own life things conditions have to be perfect for me to be happy.  Not for Charlie.  He's able to find joy even when things are hard.  Below you'll find a number of pictures where he's having fun and just enjoying life - trapped in a 200 sq ft room.

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Day +4

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Day +4

It's been an eventful last few days for Charlie. Some of the side effects of chemo are starting to kick in and he's feeling pretty rotten. He has been retching quite a bit so this morning they stopped his feeds completely and put him on TPN. He will not get real food again until he starts asking for it. He is starting to have some small mouth sores and has begun to have some pain so we've been giving small doses of morphine. It seems to help a lot and he can have it every 4 hours. Yesterday, he got a dose of red blood cells because his hemoglobin was 7.3. They did not pre-medicate with Benadryl and Tylenol, which is what I was used to the nurses doing in Tulsa when he's had blood transfusions there. Well, he was about 3.5 hours into the transfusion when he broke out all over. His face was particularly red and itchy. We gave Benadryl and that didn't help. Then they gave him another drug that he was already scheduled to get that helps with GVHD, and that seemed to do the trick. However, with all the excitement, it was past 10pm and so we had to give him my favorite "miracle" drug...melatonin. It helped him fall asleep but he kept waking up through the night crying when they changed a diaper or checked his vitals. He doesn't normally do that. This morning, he has a runny nose due to the rhinovirus. Yep-I probably gave it to him, but the doctors said it's more of an annoyance than a concern, so that made me feel less guilty. I stayed away for three days, but they said I probably passed it to him before I ever had any symptoms. 

Overall, he's not feeling great today but this is to be expected. The doctor told me this morning that this will be the toughest week yet. 

Prayer Request:

  • Pray that Charlie can be comfortable this week and that we can manage his pain.
  • Pray that his mouth sores do not get too bad. 
  • Continue to pray for Lucy. So far she is loving third grade and has made a few new friends. 
  • Pray for my parents and in-laws as they all manage their normal routines and taking care of Lucy. 
  • Pray for Lucy to be able to hold out over the next two weeks until we get to see her over labor day. 
  • Pray that Kenny and I can stay healthy and get rest.
This was right after mommy came back after being gone for 3 days. He just kept hugging me and saying my name just to make sure I was still here. #mamasboy

This was right after mommy came back after being gone for 3 days. He just kept hugging me and saying my name just to make sure I was still here. #mamasboy

Lucy turned 8 on Tuesday and her grandparents did a GREAT job with her celebration. It's being reported that she is being very good and has not cried hardly at all about missing us. That's good...I think? :) 

Lucy turned 8 on Tuesday and her grandparents did a GREAT job with her celebration. It's being reported that she is being very good and has not cried hardly at all about missing us. That's good...I think? :) 


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Thank you!!

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Thank you!!

Just wanted to say a big "thank you" to all of you who have prayed for us during this journey.  And while it's still a long ways from being over we'd like to pay tribute to those of you who have supported Charlie by wearing his t-shirts.  What an honor it is for Charlie to have so many advocates.

FYI - We would love to add your pic to this page!  Please take a picture of yourself with your "One in a Million" shirt and tag Ashlee or Kenny Osborn on Facebook.  We'll make sure to get it added.

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Day 0 - Transplant Day

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Day 0 - Transplant Day

What a day!

Today is the day that Charlie received the stem cells that we are believing will save his life.  So many of you have prayed for Charlie and our family during this time.  As we sit back and reflect on the last two and a half years with our son and the many complications that he’s had along the way we are so grateful because we can see God’s hand in everything.  We wouldn’t trade this time for anything - maybe not even a healthy son.  That feels crazy to even write, but I hope that its true.  The journey has been hard, but its been sweet.  To be able to walk through a hard time and know that the Lord is with us is powerful.  Also, the relationships we have with friends and family have grown deeper than we’ve ever expected.  What seems like a disadvantage has allowed Charlie, and our whole family to come out ahead.  It’s amazing how God works all of that out.

We would love to share some of the moments that we had today with Charlie.  We have photos below and at the very bottom is a video with raw footage that shows about 10 minutes of the transplant process.  We'll edit together a more complete version of the whole process, but wanted to share what we have now.

Charlie was up super early this morning so he took a brief nap before the transplant.

Charlie was up super early this morning so he took a brief nap before the transplant.

Charlie loves Elmo!

Charlie loves Elmo!

Isn't she cute!

Isn't she cute!

Charlie's last pre-transplant pic.

Charlie's last pre-transplant pic.

Moments before the transplant. 

Moments before the transplant. 

Charlie's getting his cells.

Charlie's getting his cells.

Thank you all so much for praying!  The journey is sweet.

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Day -2

We learned an interesting fact today about the transplant that will be happening for Charlie on Tuesday.  It turns out that it will only take about five minutes for Charlie to receive those cells.  Ashlee and I thought that was crazy!  Everything that we've been looking towards for the last few months, all of the prep, chemo, etc will be to get Charlie to a place where he can receive an infusion of cells that will only take 5 minutes.

He's wearing his Cincinnati Bearcats hat.  (Thank you Johnson Family!)

He's wearing his Cincinnati Bearcats hat.  (Thank you Johnson Family!)

More interesting facts (I always process in terms of numbers, probabilities, etc.):

  • Charlie will receive 1.2 Billion cells on Tuesday.
  • Those 1.2 Billion cells will only take up approximately 30ml of volume or 6 teaspoons.
  • Many of you know that Charlie will be receiving cord blood.  That 30ml of cells from the cord blood likely started out at between 90ml and 100ml before processing.  It was then red cell and plasma depleted leaving only the 30ml of volume left.
  • 98% of all cord blood units in the United States are NOT donated meaning the probability that Charlie would not only have this disease but also have a cord blood unit that is a 10/10 match for him is infinitely small.  I'll have someone calculate those odds for me someday.
  • This cord blood unit was donated in May of 2009.  Almost four years before Charlie was even born.

Today has been Charlie's toughest day.  He slept for nearly 16 hours - from 6:30pm last night to 10:30am today.  He was awake for a few hours this afternoon and evening but essentially he wanted to just lay.  We got him out of bed a couple of times and held him in the chair next to his bed.

His last dose of chemotherapy was this morning.  He also started another drug today called ATG (anti-thymoctye globulin).  This stuff is fascinating how it works.  It's actually made from both rabbits and horses.  Charlie is getting the horse version.  At its core, it is used for "graft protection."  Whatever is left of his immune system after 10 days of chemo will be incapacitated by this drug.

Thank you for praying for our Charlie.  We're grateful for each one of you.  We'll continue to post updates daily for the next couple of weeks.  We're entering the most critical time for BMT patients.  


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Day -3

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Day -3

We are wrapping up Day -3. I can't believe that transplant day is so close! Charlie has been feeling a bit worse the last three days. He's been retching, which is basically dry heaving. And today he has been very sleepy on top of the nausea. The good thing is that his meds are working well. He gets Zofran ever 6 hours and Adivan to help him relax in between. He has spurts where he is his "normal" self, playing with his cars and his iPad. Those moments make me feel like he's doing pretty well overall. In fact, yesterday he was having a "normal" moment, jumping in his bed, when the doctor came by to see him and said, "Wow-he looks really sick?!" He meant this in a sarcastic kind of way. I thought to myself..."He's doing so well because he has a small army praying for him!" 

Thursday some of our dear friends came from Chicago to hang with us. The boys went out and the girls stayed in with C for a good chat. It was so great to have company and to see our friends, whom we hadn't seen in over year. Then Friday, a couple more of my girlfriends came up. Tonight they gave us a huge gift. They stayed with C so that Kenny and I could go on a date. It was so good to get out of the hospital and be together!

We are so grateful for every time you text, call, email or click "like." I am reminded that we are not alone. Thank you for not giving up HOPE. Thank you for not forgetting C in your prayers! This Tuesday is Charlie's BMT. We would love it if you wore your shirt on this day as a sign that you are standing with us. We'll be posting the details on FB as things take place so that you can be praying specifically. For now---it's time for me to crawl into my hospital chair/bed and get to sleep :)  

Joc and Charlie coloring to pass the time. 

Joc and Charlie coloring to pass the time. 

Christa holding Charlie while he sleeps. He wasn't feeling too great. 

Christa holding Charlie while he sleeps. He wasn't feeling too great. 

Alone time with my hubby!!

Alone time with my hubby!!

My awesome sleeping quarters :) 

My awesome sleeping quarters :) 

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Rip the Band Aid

Well--today is the day we start Charlie's Cyclophosphamide. Image it this way.... the first chemo is the drug that stops him from producing new blood cells. This one is the one that will kill anything that is left or was already there. It's more toxic. They said before the end of the day, he will start to feel the effects like fatigue, mouth sores, and nausea. 

Although the hair loss tends to be delayed, we decided to go ahead and cut C's hair. We really didn't want to wake up one morning and find clumps of it in his bed. So, we just "ripped the band aid," and gave him a buzz cut. This way, when he does loose the rest over the next few weeks, it won't feel so drastic. We posted a short video below so you could experience this with us. Thanks for being a part of our journey!!

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Day -8

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Day -8

Charlie currently gets a chemotherapy drug called busulfan twice everyday.  We're three days into chemo and he's currently in the the middle of his 6th total dose of this drug.  Tomorrow is his last day of busulfan before we switch to another, more toxic drug, called cyclophosphamide.  

Charlie has handled chemo really well so far.  So well, in fact, we can't hardly tell the difference between the Charlie on chemo and the one that's not.  He has lots of energy still.  It's hard to keep him confined to such a small space.  He spends most of his days in his hospital bed.  He loves to play with his cars, flashlight and food. We get him out of bed twice a day and have him play on a mat so that he can stretch out a little.  He loves watching Big Hero 6 so that movie is on in our room most of the time.

When I spoke to the doctors this morning they said that Charlie's blood counts should start dropping within the next couple of days.  His absolute neutrophil count must be at 0.00 when we transplant.  Also, we will see a decrease in his energy once this second drug starts on Wednesday.  The first few days of this process have been relatively easy.  The doctor assured us this morning that boring is good.

Thank you for praying for our family!  Here are some additional prayer requests:

  • Charlie is struggling to sleep at night.  Pray that he is able to sleep well.
  • A lot will happen inside Charlie's body in the next 8 days.  Pray that his body handles it well.
  • Lucy was with us last weekend here in Cincinnati.  We had a great time with her.  Pray that she continues to do well while she's in Tulsa without her parents for the next 6 weeks.
  • Pray for Ashlee and I as we take care of Charlie and balance many other responsibilities.

It's an honor to share this journey with you all!  Thank you for walking with us and thank you for praying.


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No Fear

The last few days have been good. After Charlie’s procedure, he was in a little pain throughout the day and the middle of the night. However, by Thursday morning, C was back to himself. He was flirting with all the nurses and basically anyone else who came in the room. Those of you who knew Lucy at this age remember her big personality. Charlie is just as expressive except he doesn’t cry when he falls and he randomly sings loudly and roars like a lion. I tend to think it’s precious.

Tomorrow is a big day. Tomorrow we start Chemo. It really is hard to think about poison going into his body and killing his cells. And at the same time, I know they must die so that his new ones can live. Tonight they started him on some preventative meds that will hopefully protect his liver and kidneys. He is also on fluids to make sure that the chemo flushes through his system. It’s getting real ya’ll.

This week, a good friend sent me a new song that I just love. It’s called, “No Longer Slaves.” If you haven’t heard it, you can watch it below. The chorus simply says:

I'm no longer a slave fear
I am a child of God

What a great truth! If we know Jesus personally, we have great freedom. Although I’ve known the Lord since I was 14, I have spent much of my life struggling with fear. I tend to be an obsessive worrier. But it’s ironic, over the last few years, since we’ve had Charlie, those fears have been less and less. Even when he was in the hospital for 6 weeks last December and even when we got his diagnosis, I have not been a slave to thoughts of fear like I have been before. Now—you know I’ve had a few good ugly cries, but really…I’m at peace. I think I’m getting to a place in my walk with Christ where I feel like outcomes are predictable. Not in the sense that I know what He is going to do, but in the sense that I know He is going to take care of us no matter the outcome. And for the first time in my life I can say, even to the point of death… I’m not afraid.

I don’t write these things so that you think I’m so strong, or brave and Godly. Listen—I totally yelled at a lady at the Children’s Museum yesterday. She took the parking spot I was waiting on, I even had my signal on and she just pulled in from the other direction and took it. Lucy saw the whole thing and I had to confess to her that mommy was wrong. I had a lot of time to think about what I had done after we walked a very long way through the parking lot, in the rain, to the museum entrance J Anyway-I’m writing these things because God is teaching me so much. There is so much perspective in a season like this and I just want to make much of Jesus.

Today's Prayer Request:

  • Pray that chemo gets started tomorrow with ease and no complications
  • Pray that Lucy is able to feel special during her remaining time in Cincinnati.  She'll go home to Tulsa on Sunday.
  • Pray that we are able to sleep well  on the hospital bed/chair
  • Pray that God opens doors for conversations with other parents and nurses.  So far, not too many people have been chatty when we've tried to talk with them.

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