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Gold Ribbon Hero Joseph S

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“Reason this person is a Gold Ribbon Hero: At just 13 months old he was diagnosed with an agressive stage 3 ependymoma. His surgery was successful and proton radiation as well. He is now CANCER FREE and recovering well. He is such a strong little fighter!” – Stacy S.

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“Reason this person is a Gold Ribbon Hero: LEAH was diagnosed in June 2015 with AML.  She was leukemia free in January 2016.  March 4th all blood work cane back normal.  Leah is 3 years old.  She fought the battle and has reached remission.” – Diane F.

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Part One

“There are moments in life that define us, change us and shape who we are. Sometimes you can see these moments coming a mile away. You can brace yourself for the impact, the change it will have on your life, and prepare for its arrival. Other times, such moments come out of nowhere and hit you hard, like a punch in the gut. And, suddenly, you find yourself going down a different path than you thought you would, while struggling to make sense of what just happened. Everyone has had at least one of these moments in his or her life. When we reflect on our lives, we define time periods as “before” or “after” these events occurred. They are the stories we tell our friends and family. They are the reason we sometimes wrestle with “why?” My first moment occurred when I was 13 years old. Twenty years later, I still feel the effects of that initial shot to the gut.

Ted as TeenagerOn May 18, 1995, I was a typical teenage boy finishing seventh grade, trying to navigate both the awkward teenage years and the hallways at school. I played every sport I could and was preoccupied with a newfound attraction to girls — and hoping they didn’t notice any new pimples that had popped up the previous night. I looked forward to a summer filled with baseball, swimming, and family vacations, just 2 to 3 weeks away.

I had noticed over the past year a dull ache in my stomach, but thought it wasn’t much, really. It wasn’t bothersome until I ate lunch. I waited out the cramps. But, in reality, I had begun to have more frequent cramps and stomach aches. I started to make a daily habit out of drinking Pepto-Bismol before and after school. I didn’t feel the need to tell anyone about it. After all, I had a full summer of fun awaiting me.

I remember waking suddenly one morning, as if I had been struck with a baseball bat to my chest. I couldn’t breathe, and the pain was sharp and intense. It woke me from a dead sleep at about 6 a.m., and it didn’t go away. I stumbled to my parents’ room and tried to tell my dad what was happening.

“I…can’t….breathe…,” I managed to grunt out to my father as he was looked at me with concern in his eyes.

“What? What is it?” He sprang out of bed and jumped to my side.

“I… can’t….,” and with that I passed out in the hallway next to my parent’s bedroom.

I remember hearing my mother rush to my side and scream my name and feeling her touch my face. I remember hearing my father call 911. And I remember feeling helpless, lying there in the hallway. Although I never fully lost consciousness, I was not able to keep my eyes open, and I couldn’t move my arms or legs. Slowly and gradually, I came to and was able to sit up in the hallway when the paramedics arrived.

After the paramedics took my vital signs and I was able to stand up and eat breakfast, we determined that maybe it had been a fluke. Perhaps I had eaten bad food the previous night, or maybe I was anxious about the end of school. We determined that I didn’t need to go to the emergency room, but perhaps my parents would take me to a local urgent care center — just to be sure.

We told the urgent care doctor my story, and he gave me a pat on the back and told me that it sounded like a virus or maybe that I had been nervous about something, but that we should get a chest x-ray, just in case. After my x-ray, I was asked to provide a urine sample. When I returned from the restroom, I passed the examination room and saw the physician talking to my father. The doctor looked very serious, and my dad had tears in his eyes. I thought to myself, “What a strange sight,” as my dad typically did not cry. Although, I knew they couldn’t have been talking about me, because I felt fine.

When I entered the room, the physician started asking me a lot of strange questions. “Have you lost weight? Do you have frequent nosebleeds? Do you sweat a lot at night? Any strange aches or pains?” I was very confused about why he was suddenly asking all these questions. And why was my father looking as though he were about to cry again? My answer to everything was “no,” until he asked me about aches and pains. After I told him about my stomach aches for the past year, he nodded his head and showed me the x-ray. It was my heart, lungs, and bones. But there was something else in the x-ray: round balls in my lungs. And I knew from watching medical TV shows, that besides a heart, one should not have round balls in one’s chest. He sat down next to me and told me that he thought I had some type of metastatic cancer in my lungs and that I needed to go to Children’s Hospital immediately.

The next week was a whirlwind of tests, CT scans, lab work, and specialists trying to figure out what was going on. My family wanted answers, and I emotionally shut down. After hearing the words “You have cancer,” a number of thoughts and feelings crossed my mind. I was angry at the doctor who broke the news. Who was he to me? Didn’t he know that I felt fine and was really looking forward to summer baseball? I didn’t want to talk to anyone. Why would anyone know what I was going through? And why were they all being nice to me with smiles on their faces? I didn’t know them, and they didn’t know me. ”Once they do the right test and find out that I don’t have cancer, I can just go back to being who I am,” I thought. I wasn’t the kid who gets chemotherapy and loses his hair. I was the strong one, and everyone else needed to figure that out.

But, truth was, I wasn’t as strong as I thought. After all the CT scans, lab work and my first exploratory surgery, we held a family meeting. I had choiriocarcinoma, or germ cell cancer. They believed it somehow had started in my liver and moved to my intestines, kidneys, and, finally, my lungs. The largest area was the size of a softball in my liver, which was most likely what I had felt growing inside of me all the previous year. Not only did I have cancer, but I had metastatic cancer. I sat in that bed while the oncologist presented a plan to aggressively treat the tumors. When he was done, he turned to me and asked if I had any questions. After a moment, I turned to him and said, “Yes. Can you leave?”

Soon after, I started my chemotherapy regimen. Within the first couple of days, I started to feel weak and tired. I underwent chemotherapy before the development of the anti-nausea drug Zofran, and every day was a struggle with constant nausea and vomiting. My tumors secreted the same hCG found in pregnant women — except at an accelerated rate. Every day, I found myself with intense food cravings, followed by horrible nausea and vomiting. I lost a significant amount of weight because I was unable to eat. All of my nutrition came through IVs, and even the smell or sight of food made me nauseated. Like other children receiving chemotherapy, all of my hair fell out. Once a strong and healthy 13-year-old boy, I looked as thin as a rail in the mirror. My blood counts dropped with every round of chemotherapy, and I was unable to leave my hospital room for weeks and months at a time. Whenever I would get a pass to go home, I would end up with a fever, returning to the same room I had just been discharged from.

Cancer had taken my childhood. All my dreams for the upcoming year quickly vanished before I had a time to adjust. I went from a young teenager enjoying school, sports, and friends, to one who had to contemplate my life and mortality. Was this the last year I would see my family? Was seventh grade the last time I would enjoy my friends at school? Did I just have my last Christmas morning, never to experience the joy of family togetherness again?

But, while my body was breaking down and using every bit of energy it had to fight the cancer and withstand the toxicity of chemotherapy, something else inside me was changing. My thoughts and focus turned away from anger and, “Why me?” Instead, I decided to live what life I had left. I found great joy in visits from my family and friends and looked forward to phone calls and letters they sent me. I made new friends in the physicians, nurses, and techs in the oncology unit. I found myself laughing and even smiling in their presence. Instead of being angry with God about what he had done to me, I found my strength in him, even when my body was too weak to leave the bed.

Throughout that year, my attitude changed about being a “cancer kid” — and so did the treatment results. CT scans showed the tumors were shrinking and the chemotherapy was working. My family and I could talk about future plans and family vacations that we wanted to share together, when just months earlier we dared not to discuss such things. We celebrated small victories, cheered when I finished each round of chemotherapy, and found strength in our faith and each other — all while appreciating each day we had been given. At long last, it was time for my final surgery to remove the largest tumor in my liver, and within a short time I was discharged to return home for good.

The next six months were critical, and the medical team that had fought so hard to keep me alive during my treatment fought even harder to make sure there would be no recurrence of the cancer. They ordered CT scans, lab work and imaging studies nearly every week, looking for any evidence that the cancer had found another hold in my body. We discovered that although the chemotherapy had done an excellent job shrinking the tumors, it also had left scars that would not easily be undone. I was left with hearing loss, kidney damage causing high blood pressure, and severe peripheral neuropathy. I had to learn to walk again, how to hold a pencil and write again, and, eventually, how to run again.

I spent more time with physical and occupational therapists relearning body movements and coordination than I had lost from a year of chemotherapy. But, during it all, my goal was clear. I would enjoy the gift of life that I had been given and completely beat cancer. All of it. Not just the surgeries, not just the chemotherapy, not just the daily nausea and vomiting, or even the struggle to walk again. Cancer had almost taken all of it from me, and now I would get my whole life back.

During the next five years, I eased back to full-time school. I learned to walk and write without special adaptive equipment, and my hair grew in (albeit a little different). I was able to participate in, and succeed at, high school athletics as the starting linebacker on the varsity football team. I also flourished in academics, and I had numerous offers from colleges and universities to continue my education.

I was officially labeled “cancer free” on May 18, 2000, at the end of my senior year, 5 years after my cancer diagnosis. I had done it. I had beaten cancer and had my entire life to look forward to. After everything I had faced during my treatments, all that I had endured during my rehabilitation, and all the obstacles that I had overcome, nothing could stand in my way. After all, I had beaten the very thing that had brought me face-to-face with death.

It had thrown its punches, but cancer failed to knock me out. I was done with cancer and ready to put it completely behind me. That is, until it sucker punched me again, reminding me of that fateful moment when I was 13. Cancer would not leave me as I had left it. When I least expected it, deep wounds returned to the surface.

 

Part Two

Cancer was now behind me, and my focus shifted to a future without oncologists, CT scans, and specialists. For the first time in 5 years I looked at myself not as a “cancer kid,” but rather an 18-year-old who had his whole future ahead of him. After graduating high school, I chose to attend Northwestern College (now University of Northwestern St. Paul) in Minnesota, where I planned to major in mathematics education and play football.

I had considered the possibility of becoming a physician. After all, my teen years had provided me an informal understanding of medicine in general. While I was in high school, I had even job shadowed a couple of the oncologists who had treated me. But I came from a family of teachers, and, at that time, I did not want to pursue a career that would require 11 extra years of education.

I enrolled in my fall 2000 coursework and started participating in football. At first, I didn’t tell my teammates about my previous cancer diagnosis for fear they would take pity on me and treat me differently. Eventually, though, I began to share my story when guys questioned me about the scars on my chest and abdomen from the surgeries I had undergone. To my surprise, nothing changed. I wasn’t considered the cancer survivor, just one of the guys on the team. With no special treatment, I was expected to work hard and earn everything, just like everyone else. The cancer label was gone, and I opened a new chapter in my life.

During my first semester at school, a friend mentioned he knew three girls who were headed to the store for groceries. I needed milk, and didn’t have a vehicle, so I was interested. As my friend introduced me, one of them immediately caught my eye — a beautiful blonde with freckles, soft skin, and a killer smile. She moved with a poise that was attractive and radiant. I really, really liked her.

Her name was Erin, and she was studying music education with an emphasis in vocal training. She sang with the college choir and wanted to teach elementary music. We went to the store that evening, and shortly thereafter we never left each other’s side. I found myself thinking about her, wanting to be with her, and was ecstatic when I discovered the feelings were mutual. We enjoyed each other’s company and spent hours going on walks and talking to each other. As time went on, I knew that I had to tell her about my past. I knew if we were going to have a long-term relationship that she deserved to know everything about me, and I was unsure about how she was going to react. Previously, all the girls I had dated were from my high school and knew about my cancer history. Erin was the first girl I had to tell the entire story to, and I didn’t know how she would perceive me. Would she be OK with it? Would she pity me and not tell me? Or, would she decide it was too much to deal with and break off the relationship?

During one of our talks, I decided I should tell her, partly out of fear that my mom would let it slip out. I told her about the surgeries, chemotherapy, hair loss, and the year of being unable to eat. I told her about the kidney damage and the high blood pressure, the hearing loss and nerve damage. I told her about my rehabilitation and years of therapy just to be able to walk, write, and tie my own shoes. I left out no detail, and after putting it all out on the table, she simply looked at me and said, “OK.” She had no judgment or reservations and did not care that cancer was part of my past. Her only question: Would my cancer history affect me having children? I strongly reassured her that, as far as I knew, I had the same odds as everyone else. After all, I was five years post treatment, and no one had mentioned the possibility of infertility. Cancer was in my past, I told her, and it would not be a problem in our future.

Our relationship developed further, and we started talking about the possibility of marriage. We enjoyed discussing our dreams and life together. How many kids would we have? Would they have her freckles or my offset ears? We laughed at the fact that we both have small noses and wondered if this was a gene that we would pass on to our children. Did we want all boys, all girls, or both? I loved talking with her about our future without cancer looming in the background. We were moving forward together, and my cancer history had no place in our life.

I began to struggle with deciding on a career path. I knew that I enjoyed people and excelled in math and science. I thought mathematics education would be a great career fit, but at the end of my freshman year, I began longing for something else. I had been so focused on getting through chemotherapy and rehabilitation, that I hadn’t thought much about what I wanted to be doing when I was 30, 40, and 50 years old. During one of our talks, I complained to Erin about being 19 and not knowing what to do with my life. She listened, paused, tuned her head toward me and said, “Why don’t you become a doctor? After all, your life experience is more unique than most others’, and you do well with math and science.”

That was it! That was what I was missing! She made it sound so simple, and somehow I had been missing it. I enjoyed interacting with people, and math and science were my best subjects. Being a medical doctor incorporated all of these passions. The next year, I changed my major to pre-med and decided to transfer to the University of Minnesota to complete a biology degree. I even was able to get a job as a pharmacy technician at the same Children’s Hospital in Minneapolis, where I had been treated. I found myself making the same medications I remembered receiving as a patient just a few years earlier, and even made the chemotherapeutic medications that had killed my tumors and saved my life. I had come full circle and now had the focus and drive to turn my cancer history into something good.

After working in the pharmacy for a few years, I realized I missed interacting with people. So, I contacted the oncology department to inquire about possible job openings. After completing a summer course, I became a nursing assistant and got hired to work in the same oncology unit where I had been a patient.

During that time, I found my passion for medicine. I worked side-by-side with the same doctors and nurses who had taken care of me when I was undergoing treatment. I was able to connect with the children, and spent hours talking with the families about my treatment and time as a patient in the hospital. I was able to relate to the teenagers who were angry about what was happening to them, and I provided hope to families who had recently received the cancer diagnosis. I felt needed and important, and it fueled my desire to become a doctor. I wanted to help others, and I wanted to give something back to the medical establishment that had saved my life.

I was accepted and enrolled at the University of Minnesota Medical School in the fall of 2005. The next couple of years were extremely challenging, but I had already fought through cancer and remembered that for focus and perspective. I felt empowered to be in medical school. What specialty would I choose? Would I want to be a pediatrician? Did I want to go all the way and be a pediatric oncologist? Or, should I choose something entirely different? Did I want to be a surgeon, or maybe a radiologist? I enjoyed my classes and the challenges that they gave me.

I started to understand the pathophysiology of my disease and the pharmaceutical interventions that were prescribed to kill the cancer that had grown inside my 13-year-old body. I enjoyed my studies in pediatrics, neurology, obstetrics, and just about every field of medicine that we covered. After the first three years of classwork, clinical rotations, and externships, I finally choose my specialty: emergency medicine. I loved the rush of the emergency department, the challenges that each day brought, as well as the breadth of patients that I encountered. I treated adults, children, pregnant females, and occasionally an oncology patient. I was able to incorporate all of the knowledge I learned in school and help others when they truly needed it.

Prior to medical school, Erin and I had become engaged, and we married in 2003. She had always wanted to start a family at a young age, but understood the challenges of pre-medical studies and medical school itself. We put off having children, and instead she volunteered in the church’s nursery and enjoyed time with her sister’s children. But after two years of medical school, we were both ready to become parents. We decided to begin trying to start a family. If we were successful, the child would be born exactly when I had accrued vacation time and could take a couple of months off with the newborn. Everything was working out perfectly.

After a couple of months, we had no success. I spent extra time after work doing personal research in the library, looking up long-term fertility rates among patients who had had germ cell cancer and received the type of chemotherapy that I had. I remember staying up late at night on our laptop looking through research articles about late-term complications and the percentage of infertile patients. The numbers were positive and reassuring. Although I realized there may be a chance that we could not have biological children, I figured someone would have told me if that were the case for me. I couldn’t remember any conversation with my oncologist or parents about infertility. After another unsuccessful month, I reassured my wife that these things take time, but I would go see a urologist — just to be sure.

At my appointment, I remember the urologist giving me some statistics about fertility among post-cancer patients. I don’t recall the details of what he said, because, in my opinion, cancer was in my past. He cited some references and gave me a handout about recent studies of long-term cancer survivors, but I was really just there out of formality. My mind was more focused on my upcoming obstetrics & gynecology rotation and how to properly deliver a baby, than it was on my chances of making one. He ordered lab tests, and I was to return in two weeks for the results.

The next week, I came home from 30 hours on call delivering babies at the hospital and crashed in my bed. I woke in the afternoon and went to get the mail. Inside was an envelope from the University of Minnesota Department of Urology, and I quickly opened it. I expected a reminder about my follow-up appointment, but instead it was a laboratory data sheet. I saw my name and date of birth at the top, and written below in the graph were big black letters that were circled, “No Sperm Identified.” No other words were written on the paper. There were no other laboratory references and nothing about future appointments. I rubbed my eyes. I was drowsy and delirious from the overnight call shift. But no matter how long I looked at that paper, the words never changed.

I felt numb. Nothing had prepared me for those words. This wasn’t real. I had beaten cancer and my future was healthy and strong. I was no longer the “cancer kid.” I was a medical student preparing myself for a career of saving lives and helping others live. How could this be true? And how could it come to me in such an impersonal way? Letters on a lab sheet written by a black Sharpie that turned my life upside down. This was a punch in the gut — just like when I was 13. I felt sick to my stomach and put the paper in my backpack. This couldn’t be true.

I didn’t tell my wife for a week. How could I? All I had was a piece of paper with my name on it and circled letters, “No Sperm Identified.” Perhaps this was a mistake. After all, such a diagnosis would not have been sent through the mail. This is the type of diagnosis you meet with your doctor in private about. “This has to be a mistake,” I kept telling myself.

A week later, I followed up with the urologist, and there had been no mistake. My laboratory specimen failed to reveal a single sperm. “You are infertile,” stated the urologist. “I’m sorry for this diagnosis.” The wind was knocked out of me and my stomach started to knot up once again. He told me about possibilities of fertility treatments, but all I could hear were his initial words over and over again. I was unable to have biological children. My wife and I would never share the joy of having a child who looks just like us. All of our visions about our children and family together had become a shattered piece of glass. My dreams of going to the hospital with my wife and having friends and family come to see our baby were gone. All of our hopes about what we thought our family should have been were disappearing quickly. My reassurance to her that everything was going to work out had failed. I thanked the urologist and drove home to tell my wife.

She was sitting on the couch reading a book when I returned home. She looked up and turned her head toward me, “Well, how did it go?” I couldn’t talk. I couldn’t say anything. I started to speak, and no words came out. All I could do was shake my head and tears started flowing. “I’m so sorry,” I eventually managed to say, showing her the test results.

We sat on the couch and cried. So many thoughts and emotions were going through our minds: anger, sorrow, and guilt. Everything came to the forefront and manifested in tears for both of us. Cancer was my disease. It was supposed to be in my past and not affecting anyone else. I could deal with taking daily medications for kidney function and hypertension. I could deal with hearing loss and nerve damage. But, never in my life had my cancer affected someone else. My wife was the innocent bystander, and now the scars of my past had resurfaced to wound us deeply. A piece of our future was gone. And I couldn’t do anything about it.

Part Three

The next couple of months were some of the most difficult in our relationship. First were long nights on call delivering babies in the Labor and Delivery Unit, followed by a six-week rotation in pediatrics at Children’s Hospital — the same hospital where I had been a patient and had worked in the pharmacy and as a nursing assistant. Now, I was a medical student doing 30-hour on-call shifts. Still angry and wounded by the fertility diagnosis, the vigor and laughter that I used to share with the oncology families had vanished. I put on a happy face and tried to give them hope like I once had, but on the inside I was hurting.

The disease I had beaten and put behind me was now staring me in the face again. Only, this time, it was different. I wasn’t dealing with tumors or chemotherapy. This time, cancer took a different approach. It found a different aspect of my life to take from me. And this time, I couldn’t fight infertility with surgery and chemotherapy. My wife and I had to look inside ourselves, at our relationship, and to our strength in God. We had to accept our situation for what it was and determine if we were going to let infertility bring us down or make us stronger.

During my pediatrics rotation, we finally broke. We had attempted a couple of months of fertility treatments, with no success. The emotional price for my wife during that summer and fall had become too high. We also had exhausted our finances trying to become pregnant. At dinner one night, she decided that she had had enough. Previously, we had been involved in international medical teams and traveled throughout Central and South America.

“What are we doing?” she asked. “We are throwing hundreds and thousands of dollars at trying to become pregnant! We’ve seen children without parents and now we desire to be parents and cannot have biological children! Why don’t we build our family through adoption like we talked about during our medical trips?”

And so it was decided. I attended a meeting about adoptions through Colombia. While we were too young to meet the requirements for a number of countries that adopted to the United States, we met all the requirements of Colombia’s adoption policy because of how long we had been married. We began paperwork, home studies, finger printing and psychological evaluations. We thought of ourselves as “paper pregnant” and celebrated each time we passed a part of the process. After months of meetings, paperwork, and social work visits, we finally had a set of completed paperwork to send to Colombia in application for a child. We considered this our unofficial “ultrasound,” confirming that we were to be parents eventually.

Throughout that time, the emotional wounds of cancer were reopened and I was forced to deal with them. I had to understand that cancer could never be just a part of my past. It is a part of who I am, and its effects on my life, as well as my family’s, will never go away. I became a different person after undergoing cancer treatment, and I had to understand that my life is different because of my past. I began to question my mortality. Would I live to be 90? Am I as invincible as I thought? Should I continue to bury my cancer history in my past, or should I acknowledge it as something that is a part of my life? I had physical reminders of my past in the scars on my chest and abdomen, but I was just beginning to examine the emotional scars that had developed from cancer. The physical presence of cancer was gone, but the magnitude of being a cancer survivor would never leave.

About nine months after we started our adoption process, we attended a weekend fund-raiser for our adoption agency and Colombian orphanage. We knew our names were getting closer to being matched with a child, and that sometimes the agency matched parents to their children at these events. Throughout the weekend, we attended a number of fund-raising functions, but never got any indication that a child was available to us. At the end of the final event, a mass, the founder of the orphanage and the organizer of the agency both spoke about how grateful they were for the weekend’s turnout. At the end, one of them pulled out a manila envelope and read the name of the young boy pictured on it, finishing with, “and my parents are Ted and Erin Sibley.”

We were overjoyed. I called the medical school the next day and extended my vacation for an additional 3 weeks. We were going to be parents! All the tears, all the sorrow, and all the anger were gone. My wife and I were ecstatic! A week later, we flew to Bogota, Colombia, and prepared to meet our first child the very next day.

At the orphanage, we waited in the aptly named “green room,” as it is painted bright green. The walls are also covered with hundreds of pictures of children with their families, placed together by that orphanage. In that very room, numerous others had met their children for the first time, and now it was our turn. A group of Colombian ladies who worked in the orphanage walked in the room with a gorgeous 3-month-old boy wearing the presentation outfit we had picked out for him. My wife and I stood up and held hands as the women who had taken loving care of our son approached us. They placed him in my arms and said, “Congratulations, Dad. You have a beautiful baby boy.”

We were a family. My wife was a mother, and I was a father. Twice now, I had felt the blow of cancer in my life — both times unexpectedly. I learned that the life that I had wanted, and the life that I had planned, was not the life that I was meant to live. I had thought that my initial defeat of cancer was the end. But now I had to live with the long-term effects of what had happened when I was 13 years old. I couldn’t put cancer in a box and place it on the shelf to look at occasionally. I had to learn to live with it. I was a cancer survivor, husband, medical student, soon-to-be-physician, and now — finally — a dad.

Ted's FamilyPart Four

Childhood cancer survival rates are on the rise. Current estimates are that there are more than 325,000 children, teens, and adults living in the United States who are survivors of childhood cancer, and each of us has a story to tell. We can tell you about life before, and after, cancer. We can tell you about the years of our childhood that we missed. We can even tell you the names of our nurses and oncologists who became a part of our families during our treatments. If we were too young to understand what was going on, our parents could tell you about the struggles they went through — the worries and tears they cried for us when we were too young and weak. Some of us have made it into adulthood, and we can tell you how cancer is something we carry with us. We are part of a collective group that faced death at a young age and now are living life in a newfound light.

But, we are the lucky ones. For every story like mine there are countless children who lost their fights with cancer:

  • children who had bright futures, energizing smiles, and did nothing wrong to have lost their lives so soon
  • children who should have grown up, graduated high school, attended college, and changed the world
  • families who are left with memories of these children
  • parents and siblings who can tell you the brave fight their child or sibling fought and how sad they feel about their vacancy in the world

Much like me, they can tell you exactly when and where they were when they discovered that their young loved one had cancer. And they can tell you about their life before and after cancer crept its way into their world and changed them forever.

During my time as a nursing assistant, I had the pleasure of telling my story to patients and their families, but I also got to see firsthand the loss of a child taken from the world too soon. Late one December, a young boy undergoing chemotherapy spent Christmas in the hospital because his blood counts were too low to go home. I spent time in his room talking with his mother about how my roommates and I had had a very small Charlie Brown-esque tree on our table years before, but we did not have a star to place on the top. The young boy made arts and crafts to pass the time that evening, and the next day I came to work, his mother handed me a gift. He had made a star for the top of our tree. I thanked him and promised that this would be on my tree for years to come. This little boy lost his fight with cancer within a couple of months, but his small balsa wood star with yellow paint and gold trim sits atop our tree every year. It is one of the most precious things I own and reminds me of those who have lost their fight with a terrible disease.

The impact of being a cancer survivor has changed my life since the day I was diagnosed. The life I lead now is correlated to the experiences and person that I had become after undergoing treatment. Since my wife and I adopted our first son, we have finished medical school and residency, and I am now a practicing emergency medicine physician. I have had the opportunity to become a father two more times since our first adoption, and my wife and I are parents to an Ethiopian boy along with another Colombian child making an incredibly busy (but wonderful) family. I have become very involved in international medical work and am the medical director for a team that provides medical care to the indigenous people of the Amazon River. I have been able to travel extensively throughout Central and South America to work in various hospitals and clinics. I also have been allowed the opportunity to extend my medical services to countries throughout Africa and use the medical knowledge I’ve received through my training to help others on an international scale. I would be doing none of this if it were not for my history of cancer leading me to the career and life focus that I have now.

My wife also has been affected deeply by cancer. Though she was not directly involved in the initial effects of my therapy, she has experienced the ripple effects of my treatment. She has had to change the way she saw our marriage together after my diagnosis of infertility. She has now become a mother who has embraced our adopted children and focused her heart and mind to be a champion for international and domestic orphan rights. She has led numerous teams to work throughout Haiti in orphanages, and works endlessly for homeless children in our current city. She has volunteered our home a designated “Safe Families” house for homeless children. We provide temporary placement for various children from our area while their parents secure housing and job opportunities. We now have three sets of bunk beds in our home, countless extra sets of shoes and clothing for boys and girls, and we are just a phone call away from getting additional children who need a temporary place to stay. All of this has developed because of the effect of cancer treatment twenty years ago. She has taken the hurt and anger that cancer had given her and turned into love for her own children, as well as any child who needs her.

Sometimes I worry that my past will come back again and strike when I least expect it. I find myself wondering if any new stomach ache or chest pain could be a new tumor growing inside of me. I try to not let my thoughts dwell on such small things. But, on more than one occasion, I have taken myself in for a CT scan — just to make sure. Because germ cell cancer secretes the same hormone as a pregnant female, I will occasionally purchase a pregnancy test at the store and test my own urine. (The last time it turned out I actually just had gastric reflux.) But, with every mundane cough, body ache, or pain that I experience, the thought that cancer could recur remains in the back of my mind.

This year, I turned 33 years old and reflected on what 20 years of cancer survivorship has meant to me. I wonder what type of person I would have been without cancer. What type of people would my parents and siblings have been if they had not been there to experience all the hospitalizations, surgeries, treatments, and rehabilitation? What type of person would my wife have been if I had not had the emotional and physical scars from my treatment? Would I have become a physician? Would I have excelled more in athletics? Would I have internationally adopted children and become a medical director of a team in the Amazon River? The answer is most likely not. I believe that cancer has changed me, and those around me, forever. Be it for better or worse, my interaction with childhood cancer has had substantial effects on countless lives that I could never imagine. I am a different person today because of May 18, 1995. To my wife, I am a husband. To my parents, I am their son. I am called friend, dad, brother, and physician. But to those who know my history, I also am proud to be called a cancer survivor.” – Ted S


“Reason this person is a Gold Ribbon Hero: This girl is such an inspiration. She is a 15 yr old girl fighting for her life. 2 yrs ago she was diagnosed with a rare form of cancer called Alveolar Rhabdomyosarcoma. In her journey she has displayed so much kindness, selflessness, and generosity during her own time of need. Her heart broke for the other little ones fighting this disease so she started making stuffed bears to give to them. She made a page where people could sponsor the Bears or donate material for them and would make them on her good days. For her Make A Wish she wanted a way to help others with it so she asked for Scotty McCreedy to do a concert to benefit our local Nursing home and gave the money to them. Just recently she was told that the treatments were for quality of life only and if she got too sick they would stop them. She decided that day to do a bucket list and the first thing she thought of was that she wanted to do a toy & art supply drive for the Vanderbilt Children’s hospital. She gathered so much stuff they were able to share the wealth with other facilities and purchase a TV for the teen room. It absolutely floored me that yet again when she was dealt with devastating news, her first thought was to help someone else. This girl keeps shining her light on others,  as she fights in the darkness herself. She inspires so many people to be better people and how to live life. She is continuing to fight though she has been given no hope at this point. Her motto for life right now is is to love, laugh and make memories.” – Shanna M.

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“Reason this person is a Gold Ribbon Hero: My son was diagnosed with T-cell ALL on 10/31/13. He was hospitalized immediately to begin treatment where he remained hospitalized for 6.5 months.He received numerous chemo treatments, radiation and a bone marrow transplant on 3/28/14 which was successful. Unfortunately , the damage to his organs was already done and he passed away on 5/21/14. He is a hero because he endured without ever complaining, always joking and smiling. He will always be my hero.” – Brenda C.

 

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“Reason this person is a Gold Ribbon Hero: This little girl is my hero. She may be small and may be only 13 but from the first day she was diagnosed with Ewing’s Sarcoma she has had a smile on her face. Nothing can keep her down. Before she was diagnosed she used to keep a bucket in her room where she would collect donations for children with cancer, not knowing that one day that child would be her. Angel Lee has filled us all with so much spirit and hope these past months, you wouldn’t even know she was sick. She has inspired many in her lifetime including me.” – Belinda B.

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“Reason this person is a Gold Ribbon Hero: This little 3 year old girl found out about a month ago that she has Neuroblastoma Cancer and has been going through chemo and and just started loosing her hair. She is the daughter if a friend of mine. She is so precious and is being a trooper.” – Amy G.

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More about Childhood Neuroblastoma Cancers:

Learn More About the Different Types of Childhood Cancers:

“She was so supportive and loyal since day one my then two and a half year old Onja Rose was diagnosed with stage IV Nueroblastoma. She loved and accepted my other children as well she has a heart of gold I love her so much she has helped me in so many ways since Onja Rose Passed away 7/9/13.” – Nicole D.

 

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“Jennifer founded a non-profit organization called Project Red Balloon to bring music to hospitalized children. She would unite people from all walks and colors of life together so they could all advocate for music therapy in children hospitals throughout california. She raised thousands of dollars to sustain and sponsor music therapy programs throughout California. And now she’s a doctor taking care of countless sick children by not just using scalpels and sutures but kindness, laughter and songs.” – Tram M.

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“Addison is a true fighter. She was diagnosed with terminal brain cancer at 9 weeks old. The doctors did not expect her to survive more than 6 months. She is now 14 months old. She has had 7 surgeries and went through 5 rounds of chemotherapy with no tumor improvement. She has handled everything she has been through in her short life with strength and grace. She reminds us every day to be strong and enjoy life. It would be an honor to have her be a Gold Ribbon Hero. ” – Hillary B

 

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