Here's the problem with your kid surviving cancer... (That's right, I just said that!)
...You start living your life again like normal.
You do the things you did before like grocery shop and put off doing the dishes and get busy with life. You go back to work and get back involved with activities outside of the hospital. You get back in a groove and you slowly start letting pieces of that cancer story leave you.
Then, your child gets a temperature of 100.5 at midnight. Now for you, this means giving a dose of Tylenol and a favorite plush friend and putting them back to bed. For us, the protocol is to call the on-call oncologist and head to the ER. But we have been off of chemo for 7 months and haven't recently had the port accessed so we rolled the dice and did the Tylenol thing. Again, for you, you go back to sleep easily but for us, we lay in bed wondering if we made the right decision or if she will be septic by morning.
Then, the next morning, your child wakes up and is acting great and dancing around the kitchen. You have breakfast and head to work. The kids play and then take an afternoon nap. You get home from work when naptime is over and your oncology baby has a red face and feels warm again. This time it's 3:30 pm and the ER doesn't sound as inconvenient as it did at midnight. Your only plans were to fold some laundry and cook a chicken and all of that can be put off for tonight.
So...Go to ER, Labs, Antibiotics, Tylenol, Fluids, Home. Round trip: 4 hours + peace of mind.
The next morning, same child is back to dancing but you decide to take things easier. Work from home, movies, low stress day. Again, naptime calls and when your oncology baby awakes the fever is back. Oncology says it might be because she just woke up so wait an hour and a half and see if the temp comes down on it's own.
We aren't rookies: Shower, Snack, Pack a bag, Fold that laundry, and go ahead and leave that chicken for tomorrow. Time's up! Thermometer reads 102.0 and oncology says they will let the ER know we are on the way.
Go to ER, Labs, Strep Test, Flu Test, Urine Test, Antibiotics, Tylenol, Fluids, aaannnd Admission! The doctors decided to keep her overnight for observation and then another night just to be safe. (Cultures grow within 48 hours so they decided to have us wait it out there.)
So back to my original statement, here's the problem with your child surviving cancer, you have a life again. Again, you have plans that have to be cancelled. Again, you have things you want to do and things you need to do and you can't do either from a hospital room. Again, you are reminded that your life has forever been changed. Yes, you are so, so glad that your child has survived and you have some normalcy again, but dang if that doesn't make those dips back into it all the more difficult!
Tonight, we were discharged from the hospital. No more fever and no real answer. Probably just a normal kid virus. Our plans were altered for 4 days as we waited on something to develop that never did. So tonight, we came home and celebrated normalcy by finally cooking that chicken.
Friday, August 4, 2017
Tuesday, April 25, 2017
Here's My Heart
I want to write my heart to you. Right now, my heart is broken and also very full. I need to write it all so hang with me for a bit.
So I turned 37 on Sunday and was flooded with Facebook birthday wishes. What I noticed, though, was that many made mention to my role as Tillery's mom and the journey we have been on. I realize that most of what people know of me these days is that my child has cancer and if you will give me a few minutes, I'll rattle off statistics that will hurt to hear and then I'll ask you to donate. There have been times in my life that having a label on me has made me unhappy and I've wanted to rebel against it, but this one I wear with pride. I'm glad that when you see my face or my name, you remember my child. I'm glad you remember the little faces I've shared over the years. I'm glad I've said it so much that you haven't had a choice but to hear it.
We are on the survivor side now. In many ways, this side is harder. My anxiety and worry is heavier than when we were on treatment. My fears are harder to keep at bay. There is also guilt...oh so much guilt. There's the guilt that my child survived and some of my closest friends' children did not. I've got guilt that my child doesn't have the same side effects from treatment that many other kids around us are experiencing. And the daily mom guilt, ugh! If I don't soak up and enjoy every minute with my child, I'm not doing my job as a survivor's mom. If I don't listen to every crazy story and play every game, I feel like I'm letting down all the parents who don't have their children to do these things.
I want to tell you about 3 experiences I've had during the past 2 days that stirred up emotions that put me on this crazy rollercoaster I'm currently on.
It started with a baptism. The sweetness of a baptism. Two parents bringing their darling baby to the front of a church and making a covenant with God to trust Him with their child. The baby was sleeping in his mama's arms as the pastor and parents put handfuls of water on his head. We've seen this so often in churches and you probably have the mental picture, perhaps even thinking back on baptisms for your own children. These parents are just like you, loving their baby and filled with hopes for his life and walk with God. The child is just like your child, sweet and small and cuddly. When you left the church with your child, you probably went home that night and said a prayer of thanksgiving for the gift God had given you, just like these parents. But these parents had another plea to God. "Save our son."
See, this child has a terminal brain tumor and this family has returned home with hospice care to keep their baby comfortable despite the tumors that have infiltrated his brain and spine. Their faith is strong and they cling to a hope for a miracle, while the medical chance of survival for their child is 0%.
As Joe and I sat in the back of the church with our two children, we did all we could to stifle the tears. Baptisms are a joyous occasion. The focus should be on the covenant with God that this child is His and He will be with the child. But I'll be honest, as I sat in the back pew of that church, I was asking God "why". I don't do that often because I know God isn't causing the evils of this world. I tend to rest my focus on Jesus, who delivered us from this broken world and made a way that we can all enjoy an eternity in glory. I believe that with my whole being and in every trial we face, I remind myself of this. But watching this sweet and innocent baby being presented before God and the congregation, I had to ask God, "Why this family? Why this child? Why now?"
As I listened to the music that was played during the service, God worked.
We sang Big Daddy Weave's "The Lion and The Lamb" that repeats the line: "Who can stop the Lord Almighty?" I began to remind myself that the Lord is still in this fight. He's fighting for and through this child.
As the song ended and the next began, tears started to flow. It was the song I sing so often through the halls of Cincinnati Children's Hospital. The song that my heart sings so often for my child and many others. "Holy Spirit, You are welcome here. Come flood this place and fill the atmosphere. Your glory, God, is what our hearts long for, to be overcome by your presence, Lord."
As I was walking to the front of the church to receive communion, the song "Here's My Heart" by Lauren Daigle began. I walked toward communion with these words, "Here's my heart, Lord. Speak what is true."
God can work a miracle in this child. I don't know if He will but regardless, He is our hope. I've been wearing out the song "Even If" by Mercy Me lately. The chorus says, "I know You're able and I know You can, save through the fire with Your mighty hand, but even if You don't, my hope is You alone." The full lyrics are such a plea to God in a low time and I have felt and said them so often for my child and others. I desperately want us all to be on the other side of our illnesses but even if we aren't, we will all be on the other side of this world soon enough.
Sunday night was emotional. I was sad and hopeful all together. I questioned and I was answered. It's not about our wants, it's about His will. I give Him my heart and ask Him in return that He will speak to me and through me. I ended the evening hopeful.
Monday morning, I got a prayer request from a friend who's daughter recently had surgery. Recovery was rocky and they were still in the hospital and things were hard. When I mentioned it to Joe, he encouraged me to go. So many friends have dropped everything and come to be by our side and we know what that has meant. To see a friendly face in the hospital on a hard day can give you the strength to push through. Joe and I see it as our ministry to help families with children with medical issues. Part of that ministry is showing up.
So I drove to see my friend and her family in the hospital. Her daughter wasn't in the hospital here, but in her local hospital, the same one we believe caused unnecessary suffering for our daughter. The last time I was in that hospital with my child, we left in an airplane heading to Cincinnati Children's. The experience we had in that hospital caused us to have to move for the safety of our child. And now, I was walking in again, to visit friends who were having a hard time there with their child. Now, my friend's doctor is wonderful and much of the struggles of her child would happen anywhere but it was all magnified for me by being back within those walls. As I navigated the halls, my anger rose. As I remembered all of the hurt I had felt there and all the unnecessary hardships that came as a result of that hospital, my heart broke again for not just my child, but for a region of children who only have this as their option. I wanted to make calls and set meetings and tell our story but I remembered, I had, and I had been let down by the administration on top of the let down of the medical staff.
My drive is so focused on finding a cure, that I often forget that even if there was a cure or safer drugs, so many children don't even have access to decent medical care. So many local hospitals are underfunded and understaffed that mistakes are made. The problem that children with medical conditions face is an uphill battle that takes strong willed parents to fight the fight and find the right medical team to save their child. It's exhausting to think of all we have been through and then to remember that there are hundreds of thousands of families just like ours fighting for the health and safety of their children, it's heartbreaking.
I drove home sad and tired. I wanted to just put on some comfy pants and lay on my couch for the rest of the day. Instead, when I got home, I hugged my husband and children and then headed out again for a dinner with a special group of ladies.
The world of cancer and illnesses is full of secret Facebook communities. Many of my closest friends are strangers or people who live far away. I speak with them in forums and Facebook groups and we share and celebrate and cry and laugh and love together. One of these groups is a group of women cancer fighters. (They allow me an exception because of Tillery.) They are from all over the country but there is a small group of them living right here in Knoxville. Last night, the Knoxville group went to dinner.
I sat at a table with cancer survivors and listened to them just talk of life. They live in the same world we all live in. They dine in the same restaurants and shop in the same shops. But they have differences like numbness in their hands and changes in their tastes from treatments they went through. This group is from a variety of age and social backgrounds but the common bond makes them all the best of friends.
At dinner last night, God sent me a beautiful sign of hope, again through a baby. The woman who sat across from me, a cancer survivor, was holding her 4 week old baby. She spoke of the struggles of pregnancy after chemo but here she was, a survivor, bringing new life into this world.
Friends, life is hard. We all have struggles that get us down. But if you open your eyes wide enough, you can see God's work all around you. If you sit still enough, you can feel His comfort. And if you look away from your pain, you can feel His peace.
Here's my playlist:
The Lion and The Lamb by Big Daddy Weave
Holy Spirit by Francesca Battistelli
Here's My Heart by Lauren Daigle
Even If by Mercy Me
So I turned 37 on Sunday and was flooded with Facebook birthday wishes. What I noticed, though, was that many made mention to my role as Tillery's mom and the journey we have been on. I realize that most of what people know of me these days is that my child has cancer and if you will give me a few minutes, I'll rattle off statistics that will hurt to hear and then I'll ask you to donate. There have been times in my life that having a label on me has made me unhappy and I've wanted to rebel against it, but this one I wear with pride. I'm glad that when you see my face or my name, you remember my child. I'm glad you remember the little faces I've shared over the years. I'm glad I've said it so much that you haven't had a choice but to hear it.
We are on the survivor side now. In many ways, this side is harder. My anxiety and worry is heavier than when we were on treatment. My fears are harder to keep at bay. There is also guilt...oh so much guilt. There's the guilt that my child survived and some of my closest friends' children did not. I've got guilt that my child doesn't have the same side effects from treatment that many other kids around us are experiencing. And the daily mom guilt, ugh! If I don't soak up and enjoy every minute with my child, I'm not doing my job as a survivor's mom. If I don't listen to every crazy story and play every game, I feel like I'm letting down all the parents who don't have their children to do these things.
I want to tell you about 3 experiences I've had during the past 2 days that stirred up emotions that put me on this crazy rollercoaster I'm currently on.
It started with a baptism. The sweetness of a baptism. Two parents bringing their darling baby to the front of a church and making a covenant with God to trust Him with their child. The baby was sleeping in his mama's arms as the pastor and parents put handfuls of water on his head. We've seen this so often in churches and you probably have the mental picture, perhaps even thinking back on baptisms for your own children. These parents are just like you, loving their baby and filled with hopes for his life and walk with God. The child is just like your child, sweet and small and cuddly. When you left the church with your child, you probably went home that night and said a prayer of thanksgiving for the gift God had given you, just like these parents. But these parents had another plea to God. "Save our son."
See, this child has a terminal brain tumor and this family has returned home with hospice care to keep their baby comfortable despite the tumors that have infiltrated his brain and spine. Their faith is strong and they cling to a hope for a miracle, while the medical chance of survival for their child is 0%.
As Joe and I sat in the back of the church with our two children, we did all we could to stifle the tears. Baptisms are a joyous occasion. The focus should be on the covenant with God that this child is His and He will be with the child. But I'll be honest, as I sat in the back pew of that church, I was asking God "why". I don't do that often because I know God isn't causing the evils of this world. I tend to rest my focus on Jesus, who delivered us from this broken world and made a way that we can all enjoy an eternity in glory. I believe that with my whole being and in every trial we face, I remind myself of this. But watching this sweet and innocent baby being presented before God and the congregation, I had to ask God, "Why this family? Why this child? Why now?"
As I listened to the music that was played during the service, God worked.
We sang Big Daddy Weave's "The Lion and The Lamb" that repeats the line: "Who can stop the Lord Almighty?" I began to remind myself that the Lord is still in this fight. He's fighting for and through this child.
As the song ended and the next began, tears started to flow. It was the song I sing so often through the halls of Cincinnati Children's Hospital. The song that my heart sings so often for my child and many others. "Holy Spirit, You are welcome here. Come flood this place and fill the atmosphere. Your glory, God, is what our hearts long for, to be overcome by your presence, Lord."
As I was walking to the front of the church to receive communion, the song "Here's My Heart" by Lauren Daigle began. I walked toward communion with these words, "Here's my heart, Lord. Speak what is true."
God can work a miracle in this child. I don't know if He will but regardless, He is our hope. I've been wearing out the song "Even If" by Mercy Me lately. The chorus says, "I know You're able and I know You can, save through the fire with Your mighty hand, but even if You don't, my hope is You alone." The full lyrics are such a plea to God in a low time and I have felt and said them so often for my child and others. I desperately want us all to be on the other side of our illnesses but even if we aren't, we will all be on the other side of this world soon enough.
Sunday night was emotional. I was sad and hopeful all together. I questioned and I was answered. It's not about our wants, it's about His will. I give Him my heart and ask Him in return that He will speak to me and through me. I ended the evening hopeful.
Monday morning, I got a prayer request from a friend who's daughter recently had surgery. Recovery was rocky and they were still in the hospital and things were hard. When I mentioned it to Joe, he encouraged me to go. So many friends have dropped everything and come to be by our side and we know what that has meant. To see a friendly face in the hospital on a hard day can give you the strength to push through. Joe and I see it as our ministry to help families with children with medical issues. Part of that ministry is showing up.
So I drove to see my friend and her family in the hospital. Her daughter wasn't in the hospital here, but in her local hospital, the same one we believe caused unnecessary suffering for our daughter. The last time I was in that hospital with my child, we left in an airplane heading to Cincinnati Children's. The experience we had in that hospital caused us to have to move for the safety of our child. And now, I was walking in again, to visit friends who were having a hard time there with their child. Now, my friend's doctor is wonderful and much of the struggles of her child would happen anywhere but it was all magnified for me by being back within those walls. As I navigated the halls, my anger rose. As I remembered all of the hurt I had felt there and all the unnecessary hardships that came as a result of that hospital, my heart broke again for not just my child, but for a region of children who only have this as their option. I wanted to make calls and set meetings and tell our story but I remembered, I had, and I had been let down by the administration on top of the let down of the medical staff.
My drive is so focused on finding a cure, that I often forget that even if there was a cure or safer drugs, so many children don't even have access to decent medical care. So many local hospitals are underfunded and understaffed that mistakes are made. The problem that children with medical conditions face is an uphill battle that takes strong willed parents to fight the fight and find the right medical team to save their child. It's exhausting to think of all we have been through and then to remember that there are hundreds of thousands of families just like ours fighting for the health and safety of their children, it's heartbreaking.
I drove home sad and tired. I wanted to just put on some comfy pants and lay on my couch for the rest of the day. Instead, when I got home, I hugged my husband and children and then headed out again for a dinner with a special group of ladies.
The world of cancer and illnesses is full of secret Facebook communities. Many of my closest friends are strangers or people who live far away. I speak with them in forums and Facebook groups and we share and celebrate and cry and laugh and love together. One of these groups is a group of women cancer fighters. (They allow me an exception because of Tillery.) They are from all over the country but there is a small group of them living right here in Knoxville. Last night, the Knoxville group went to dinner.
I sat at a table with cancer survivors and listened to them just talk of life. They live in the same world we all live in. They dine in the same restaurants and shop in the same shops. But they have differences like numbness in their hands and changes in their tastes from treatments they went through. This group is from a variety of age and social backgrounds but the common bond makes them all the best of friends.
At dinner last night, God sent me a beautiful sign of hope, again through a baby. The woman who sat across from me, a cancer survivor, was holding her 4 week old baby. She spoke of the struggles of pregnancy after chemo but here she was, a survivor, bringing new life into this world.
Friends, life is hard. We all have struggles that get us down. But if you open your eyes wide enough, you can see God's work all around you. If you sit still enough, you can feel His comfort. And if you look away from your pain, you can feel His peace.
Here's my playlist:
The Lion and The Lamb by Big Daddy Weave
Holy Spirit by Francesca Battistelli
Here's My Heart by Lauren Daigle
Even If by Mercy Me
Sunday, April 23, 2017
Goals Revisited
Last year on my birthday, I set 4 goals for myself for the upcoming 4 years. - 4 Things in 4 Years til 40 Years
Now, here I am, another year closer to 40. Another year closer to achieving those goals. So I thought I'd check in and do a little progress report.
Goal #1: Make The TIL Foundation a reality.
As I began going down the path of making The TIL Foundation happen, I realized I was going to spend so much time and money making our foundation happen that I would miss time and money going into raising awareness and funding a cure. In the Fall, we instead decided to partner with Alex's Lemonade Stand Foundation and created the TIL Fund. This allowed us to organize events in honor of our daughter without having to jump through all the hoops of creating our own 501(c)3. I'm gonna check this off my to-do list!
Goal #2: Raise $100,000 for pediatric brain tumor research.
In case you haven't heard, we've got some stuff going on! Here's what's in the works:
Norwood Elementary Kindergarten - There are 90 kindergarteners at Norwood Elementary and they are gathering change from all over Knoxville for ALSF. In early April, I went in did presentations to all of the kindergarten classes and sent home coin collection boxes for the kids. We have a large container that we have been filling with bags of change that have been coming home in Luke's backpack. These kids are a giving bunch and I'm so impressed by their excitement to help "Luke's sister".
Go Gray Sunday - This idea has been swirling in my head since 2014, as cards and care packages kept coming in from various churches. Tillery has been on prayer lists across the country and we decided to reach out to many of the churches who have supported us (and others we have met along the way) to have an awareness day. Churches will say a special prayer for families with children with brain tumors, there is an insert for the church bulletins, and many churches are also creating a fundraiser to go along with this day. Go Gray Sunday is May 7th. Here is a recent article written about the day. For more information or to be involved, visit GoGraySunday.com.
Tillery's Hustle for Hope 5k - Our first attempt at a 5k is really coming together. To date, we have 134 registered participants and have raised over $5,000 and we still have almost a month to go! The event is May 20 at Victor Ashe Park in Knoxville but we also have an option to register as a virtual runner for supporters outside of the Knoxville area. For more information, visit HustleforHope5k.com.
We have other ideas that we are working on for September for Childhood Cancer Awareness Month, as well. After we get through May, we will share more on those plans.
To date, we have raised $17,563 for Alex's Lemonade Stand Foundation through the TIL Fund! (including funds already raised thru the 5k) I'd say I'm well on my way to $100,000!
Goal #3: Write a book.
Okay, I'll be honest...I've done nothing on this one. I mean, I have 3 more years. Cut me some slack!
Goal #4: See our family be on the healthy side of this diagnosis.
Now, here I am, another year closer to 40. Another year closer to achieving those goals. So I thought I'd check in and do a little progress report.
Goal #1: Make The TIL Foundation a reality.
As I began going down the path of making The TIL Foundation happen, I realized I was going to spend so much time and money making our foundation happen that I would miss time and money going into raising awareness and funding a cure. In the Fall, we instead decided to partner with Alex's Lemonade Stand Foundation and created the TIL Fund. This allowed us to organize events in honor of our daughter without having to jump through all the hoops of creating our own 501(c)3. I'm gonna check this off my to-do list!
Goal #2: Raise $100,000 for pediatric brain tumor research.
In case you haven't heard, we've got some stuff going on! Here's what's in the works:
Norwood Elementary Kindergarten - There are 90 kindergarteners at Norwood Elementary and they are gathering change from all over Knoxville for ALSF. In early April, I went in did presentations to all of the kindergarten classes and sent home coin collection boxes for the kids. We have a large container that we have been filling with bags of change that have been coming home in Luke's backpack. These kids are a giving bunch and I'm so impressed by their excitement to help "Luke's sister".
Go Gray Sunday - This idea has been swirling in my head since 2014, as cards and care packages kept coming in from various churches. Tillery has been on prayer lists across the country and we decided to reach out to many of the churches who have supported us (and others we have met along the way) to have an awareness day. Churches will say a special prayer for families with children with brain tumors, there is an insert for the church bulletins, and many churches are also creating a fundraiser to go along with this day. Go Gray Sunday is May 7th. Here is a recent article written about the day. For more information or to be involved, visit GoGraySunday.com.
Tillery's Hustle for Hope 5k - Our first attempt at a 5k is really coming together. To date, we have 134 registered participants and have raised over $5,000 and we still have almost a month to go! The event is May 20 at Victor Ashe Park in Knoxville but we also have an option to register as a virtual runner for supporters outside of the Knoxville area. For more information, visit HustleforHope5k.com.
We have other ideas that we are working on for September for Childhood Cancer Awareness Month, as well. After we get through May, we will share more on those plans.
To date, we have raised $17,563 for Alex's Lemonade Stand Foundation through the TIL Fund! (including funds already raised thru the 5k) I'd say I'm well on my way to $100,000!
Goal #3: Write a book.
Okay, I'll be honest...I've done nothing on this one. I mean, I have 3 more years. Cut me some slack!
Goal #4: See our family be on the healthy side of this diagnosis.
Dare I say it? Could it possibly be true? According to Tillery's neurosurgery and oncology teams...
WE ARE HERE!
Here on the other side of chemotherapy and surgery and hospital stays.
Here on the other side of pain and hurt and tears.
Here on the other side of delays and setbacks.
We are here, where the rest of you are.
And we are enjoying every minute!
So that's where I am, where we all are.
3 years to go. 40, I'm coming for ya!
*Looking for a birthday gift idea? I'd say a donation to ALSF would be awesome!
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