What it feels like to sit on a fence
With tears in my eyes but also the widest smile, I answered a strangers question by pointing at my children and identifying Charlotte. “My littlest. Charlotte”, was my answer. The question was “Which one of your children went through bone marrow transplant?” We were at a fun outpatient Easter event thanks to Dukes PBMT family support services and one of the volunteers couldn’t tell. You all, she couldn’t tell just by looking at a glance which of our children had gone through that. Charlotte looks just like any kid right now. She acts like any other 4 year old, or 10 or 16 or 40 or 2 year old depending on her mood 😆. (She can be such a tender old soul). But that question, which made me BEAM, took me by surprise. It seemed at first like this huge victory. Charlotte looks and acts so healthy. No outward evidence of any disease nor physical marks at a glance that could show what she’s been through just to be here. That is simply a God given gift and we know this. But, we can walk the walk all we want and the reality is, we are sitting on a fence.
Charlotte is on a clinical trial in which a vaccine injection is administered 7 times in one year along with a medication that she takes for 2 weeks every 2 weeks over the course of the year while on the study. This trial’s aim is to create an immune response and attack any small pockets of Neuroblastoma that could be hidden undetected. Man it’s a victory to be on this trial and a victory to be as far along on it as she is. But, because of the nature of social media, I have been a stranger of sorts following other children with the same disease as ours. This social media world is such a strange and bizarre one, although equally wonderful at times. But strange. Strange to be a fly on the wall at times observing such private battles. People creating public pages for other people to access in order to support and pray for their child who is fighting this cancer. People allowing strangers like myself to witness what is often so private and painful and inspiring. Did I ever tell you about how I came to enter this place?
After diagnosis, I couldn’t speak to other parents or look to Neuroblastoma “groups” on FaceBook or on line. After we researched the more accredited websites and spoke to our doctors and one out at Cincinnati Children’s, we put our blinders on. I couldn’t read or question or second guess or learn anything more until we got Charlotte stable. Then, once we got her home from that first 3 plus weeks in the hospital and her first round of chemo, we took our first breath. But even still, I couldn’t seek out other families with children going through this. I was afraid to know. I was afraid to see what was up ahead for her and for us. My survival mode was to cocoon our little family, encasing Charlotte at its center, and block out the world. I rarely made eye contact let alone small talk with other parents at the hospital. I was terrified and still in shock that we were among them. Charlotte began to look like many of other sick children around her: bald, skinny, pale, connected with tubes, afraid and clingy. Here we were starting the fight for her life and instead of learning every thing I could, I put one foot in front of the other and kept my head low. And I prayed. I prayed like I never had before. And I listened, I listened like I never had before. I went inward. I put on the brave smile parents know how to fake for their children. Then I slowly started to emerge with more strength and clarity and peace then I had any right to. I think that was the first experience, true experience, that I knew without a doubt that God was there. It was a feeling like no other and I just felt it. It transformed me. I began to really write about this journey. I began to talk to other people around me at the hospital. I began to let myself cry and worry and break down. I began to face this.
Once Charlotte finished her 6 rounds of chemo and the surgery to remove her once inoperable tumor was a success, I felt a huge weight shift. We were through a few of the biggest hurdles for our girl. Brian, I learned, knew more about the next stage of Stem cell Transplant then I let myself learn. I mean we were both present for the meetings with the doctors and we both learned the details of what it would entail. We both read and signed the paperwork in which it clearly said there is a chance she could develop life threatening conditions as a result of what she would go through next. That she could very well die from transplant. It’s not that I didn’t know. But I believed what I believed and WE believed the research that said this gives her her best chance at beating it. So I decided why torture myself by learning anymore then I needed to. Brian was more terrified then I was at that time. He was a bit more informed perhaps. And I still couldn’t get on Facebook and still couldn’t join in on the parent support groups. I didn’t want to see. I had to stay positive and immune and I suppose I chose to renter that cocoon again. Walking into Duke’s 5200 pediatric bone marrow transplant unit, moving our baby girl in there knowing some of what she was about to go through is still one of the scariest moments in our entire lives. We were so grateful she had come this far and had done so well. But transplant was and is a gamble. It can save or destroy. We were on a fence. Which side would she be on? We went “all in.” And then I met Jacob and Kim.
They were on the floor going through Immunotherapy. They were the first family I had met with Neuroblastoma. They had finished transplant and radiation and were in the final phase of treatment. When a nurse told me about them and that they would introduce me if I wanted, I kind of froze. Do we want to know them? Do I want to let them in? I had a nice and cozy cocoon going on here. What would be the benefit? Well, of course, God can move you in many ways. After some thought, I decided I needed to meet this family, this mom, Kim. I found her walking the hallway while Jacob was sleeping and fighting a high fever which accompanied his Immunotherapy treatment. We chatted and I immediately liked her. When she asked me if we decided whether we would do proton radiation or standard radiation next, and then what my thoughts were on the Neuroblastoma Vaccine trial up at Sloan Kettering, I stared back at her blankly like a deer caught in the headlights. Now, granted, I hadn’t slept but a few hours here and there for several days. This was when Charlotte was going through tough and very high dose chemo. She was even bathed every 4 hours for 4 days around the clock because the chemo would burn her skin. She was in pain and nauseous and afraid and miserable. But Kim caught me with those questions. I had no idea what she was talking about! We had a protocol and read it all, understood all the steps. We never knew we had a choice for types of radiation. “What is proton radiation? And what is a Neuroblastoma Vaccine”, I wondered?
I told Kim that we hadn’t learned about those options yet. I admitted to her that we took things step by step and that I had a hard time looking ahead. I told her that Charlotte had responded so well to treatment that we decided to keep going with all the recommendations on the standard protocol from COG (Childrens oncology group, a national organization that researches best practices and treatment options). She kindly nodded and looked me straight in the eye and said, “Research. Research what I’ve told you and ask your doctors. There are other options then you may know.” I thanked her. I went back to the room and called Brian to tell him what I had learned. And then, I scrolled through my phone, opened my Facebook app, and joined what would become a life line, the Neuroblastoma parent support groups. They contained a wealth of knowledge from some of the most informed and supportive groups of parents I could ever have imagined. And I silently realized that perhaps in my momma bear mode, I did my daughter a disservice. Shame on me. Knowledge is power. The cocoon I built was to make ME comfortable. For my own self preservation. I didn’t want to face any
unnecessary “unpleasantness” or become “emotionally” invested in anything other then what was in front of my face. I wanted to stay on our side of the fence. The side where Charlotte was winning her fight against cancer and escaping any other dangers present. Opening up that Facebook app showed me a world where children won but also lost. It showed me families on our side of the fence who crossed over to this other side I was so afraid of. It helped me learn questions to ask. It helped me learned about things out there that our own trusted doctors never discussed with us. It also helped put me in touch with so many other parents going through what I could understand. “They get it”, I would think. It was, of course, a double edged sword. Both helpful and hurtful. I learned in real time that the transplants Charlotte was going through often came at a high price. I saw some children that didn’t make it out alive. I learned that there is new research aimed at providing alternative treatment in which the child doesn’t need to go through transplant. And I began to follow the first care page, written by one of the most moving and inspiring mothers, who would lose her daughter. And I followed her because of how she would write and inspired my faith despite what they were going through. I could understand her. Even from the other side of the fence.
This past week another little one has passed away after quite the fight, Revel. There are so many on the other side of this fence. Would things be easier for me, for us, if I never looked over there? There are many sitting on the fence, like Riley Rose. Her family has just reported that her body has developed a severe life threatening disease in which it attacks its own blood cells, specifically platelets and possibly red cells. She promised Riley Rose no more treatment in hospitals but she is facing a potential brain bleed from this condition and they are trying to determine what else can be done. I know we’ve all prayed for them. They are still sitting on this fence, wondering which side Riley will fall on. It’s excruciatingly painful for her parents to be in this space for so long. Not knowing if these are their last days with their baby girl. Cherishing the moments never the less but bracing. I guess that is what it feel like to sit on a fence. Whatever the fence may be. It’s desperately clinging to all the joy you can fathom and muster, while wincing and bracing just in case. And no matter where you are on this journey, even sitting exactly where you prayed to be like we are with Charlotte, you know and feel the straddle of the fence. Knowing in a fleeting moment, things can change. It is true for us all isn’t it. I suppose we all have a fence of some sort. And we are just trying to get comfortable and live while we sit on it.
Thanks for continuing to pray for Charlotte. We are waiting for confirmation from Sloan but we believe she’ll be ready for injection 6 of 7 the first week of May. God truly continues to light and lead our way through her. And thanks for your continued prayers for all the little children trying to get off this damn fence. And also for those who did but left the ones who love them the most behind.
Pics below of the outpatient PBMT Easter event for families and patients. “Which child went through transplant?”
Charlotte is on a clinical trial in which a vaccine injection is administered 7 times in one year along with a medication that she takes for 2 weeks every 2 weeks over the course of the year while on the study. This trial’s aim is to create an immune response and attack any small pockets of Neuroblastoma that could be hidden undetected. Man it’s a victory to be on this trial and a victory to be as far along on it as she is. But, because of the nature of social media, I have been a stranger of sorts following other children with the same disease as ours. This social media world is such a strange and bizarre one, although equally wonderful at times. But strange. Strange to be a fly on the wall at times observing such private battles. People creating public pages for other people to access in order to support and pray for their child who is fighting this cancer. People allowing strangers like myself to witness what is often so private and painful and inspiring. Did I ever tell you about how I came to enter this place?
After diagnosis, I couldn’t speak to other parents or look to Neuroblastoma “groups” on FaceBook or on line. After we researched the more accredited websites and spoke to our doctors and one out at Cincinnati Children’s, we put our blinders on. I couldn’t read or question or second guess or learn anything more until we got Charlotte stable. Then, once we got her home from that first 3 plus weeks in the hospital and her first round of chemo, we took our first breath. But even still, I couldn’t seek out other families with children going through this. I was afraid to know. I was afraid to see what was up ahead for her and for us. My survival mode was to cocoon our little family, encasing Charlotte at its center, and block out the world. I rarely made eye contact let alone small talk with other parents at the hospital. I was terrified and still in shock that we were among them. Charlotte began to look like many of other sick children around her: bald, skinny, pale, connected with tubes, afraid and clingy. Here we were starting the fight for her life and instead of learning every thing I could, I put one foot in front of the other and kept my head low. And I prayed. I prayed like I never had before. And I listened, I listened like I never had before. I went inward. I put on the brave smile parents know how to fake for their children. Then I slowly started to emerge with more strength and clarity and peace then I had any right to. I think that was the first experience, true experience, that I knew without a doubt that God was there. It was a feeling like no other and I just felt it. It transformed me. I began to really write about this journey. I began to talk to other people around me at the hospital. I began to let myself cry and worry and break down. I began to face this.
Once Charlotte finished her 6 rounds of chemo and the surgery to remove her once inoperable tumor was a success, I felt a huge weight shift. We were through a few of the biggest hurdles for our girl. Brian, I learned, knew more about the next stage of Stem cell Transplant then I let myself learn. I mean we were both present for the meetings with the doctors and we both learned the details of what it would entail. We both read and signed the paperwork in which it clearly said there is a chance she could develop life threatening conditions as a result of what she would go through next. That she could very well die from transplant. It’s not that I didn’t know. But I believed what I believed and WE believed the research that said this gives her her best chance at beating it. So I decided why torture myself by learning anymore then I needed to. Brian was more terrified then I was at that time. He was a bit more informed perhaps. And I still couldn’t get on Facebook and still couldn’t join in on the parent support groups. I didn’t want to see. I had to stay positive and immune and I suppose I chose to renter that cocoon again. Walking into Duke’s 5200 pediatric bone marrow transplant unit, moving our baby girl in there knowing some of what she was about to go through is still one of the scariest moments in our entire lives. We were so grateful she had come this far and had done so well. But transplant was and is a gamble. It can save or destroy. We were on a fence. Which side would she be on? We went “all in.” And then I met Jacob and Kim.
They were on the floor going through Immunotherapy. They were the first family I had met with Neuroblastoma. They had finished transplant and radiation and were in the final phase of treatment. When a nurse told me about them and that they would introduce me if I wanted, I kind of froze. Do we want to know them? Do I want to let them in? I had a nice and cozy cocoon going on here. What would be the benefit? Well, of course, God can move you in many ways. After some thought, I decided I needed to meet this family, this mom, Kim. I found her walking the hallway while Jacob was sleeping and fighting a high fever which accompanied his Immunotherapy treatment. We chatted and I immediately liked her. When she asked me if we decided whether we would do proton radiation or standard radiation next, and then what my thoughts were on the Neuroblastoma Vaccine trial up at Sloan Kettering, I stared back at her blankly like a deer caught in the headlights. Now, granted, I hadn’t slept but a few hours here and there for several days. This was when Charlotte was going through tough and very high dose chemo. She was even bathed every 4 hours for 4 days around the clock because the chemo would burn her skin. She was in pain and nauseous and afraid and miserable. But Kim caught me with those questions. I had no idea what she was talking about! We had a protocol and read it all, understood all the steps. We never knew we had a choice for types of radiation. “What is proton radiation? And what is a Neuroblastoma Vaccine”, I wondered?
I told Kim that we hadn’t learned about those options yet. I admitted to her that we took things step by step and that I had a hard time looking ahead. I told her that Charlotte had responded so well to treatment that we decided to keep going with all the recommendations on the standard protocol from COG (Childrens oncology group, a national organization that researches best practices and treatment options). She kindly nodded and looked me straight in the eye and said, “Research. Research what I’ve told you and ask your doctors. There are other options then you may know.” I thanked her. I went back to the room and called Brian to tell him what I had learned. And then, I scrolled through my phone, opened my Facebook app, and joined what would become a life line, the Neuroblastoma parent support groups. They contained a wealth of knowledge from some of the most informed and supportive groups of parents I could ever have imagined. And I silently realized that perhaps in my momma bear mode, I did my daughter a disservice. Shame on me. Knowledge is power. The cocoon I built was to make ME comfortable. For my own self preservation. I didn’t want to face any
unnecessary “unpleasantness” or become “emotionally” invested in anything other then what was in front of my face. I wanted to stay on our side of the fence. The side where Charlotte was winning her fight against cancer and escaping any other dangers present. Opening up that Facebook app showed me a world where children won but also lost. It showed me families on our side of the fence who crossed over to this other side I was so afraid of. It helped me learn questions to ask. It helped me learned about things out there that our own trusted doctors never discussed with us. It also helped put me in touch with so many other parents going through what I could understand. “They get it”, I would think. It was, of course, a double edged sword. Both helpful and hurtful. I learned in real time that the transplants Charlotte was going through often came at a high price. I saw some children that didn’t make it out alive. I learned that there is new research aimed at providing alternative treatment in which the child doesn’t need to go through transplant. And I began to follow the first care page, written by one of the most moving and inspiring mothers, who would lose her daughter. And I followed her because of how she would write and inspired my faith despite what they were going through. I could understand her. Even from the other side of the fence.
This past week another little one has passed away after quite the fight, Revel. There are so many on the other side of this fence. Would things be easier for me, for us, if I never looked over there? There are many sitting on the fence, like Riley Rose. Her family has just reported that her body has developed a severe life threatening disease in which it attacks its own blood cells, specifically platelets and possibly red cells. She promised Riley Rose no more treatment in hospitals but she is facing a potential brain bleed from this condition and they are trying to determine what else can be done. I know we’ve all prayed for them. They are still sitting on this fence, wondering which side Riley will fall on. It’s excruciatingly painful for her parents to be in this space for so long. Not knowing if these are their last days with their baby girl. Cherishing the moments never the less but bracing. I guess that is what it feel like to sit on a fence. Whatever the fence may be. It’s desperately clinging to all the joy you can fathom and muster, while wincing and bracing just in case. And no matter where you are on this journey, even sitting exactly where you prayed to be like we are with Charlotte, you know and feel the straddle of the fence. Knowing in a fleeting moment, things can change. It is true for us all isn’t it. I suppose we all have a fence of some sort. And we are just trying to get comfortable and live while we sit on it.
Thanks for continuing to pray for Charlotte. We are waiting for confirmation from Sloan but we believe she’ll be ready for injection 6 of 7 the first week of May. God truly continues to light and lead our way through her. And thanks for your continued prayers for all the little children trying to get off this damn fence. And also for those who did but left the ones who love them the most behind.
Pics below of the outpatient PBMT Easter event for families and patients. “Which child went through transplant?”
The event was at the same golf course I took Charlotte to while she was recovering from the first stem cell transplant! It was her 3rd birthday! Then and Now❤️
Look at our baby girl go! Keep going and keep moving sweet girl!
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