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Hello, my name is Lauren.
I am an OsteoWarrior.

In 2017, I was 14 and looking forward to the summer before my Sophomore year of high school. I was a runner, a discus thrower, and a member of the marching band. That was all put on hold when I noticed a lump on the side of my thigh and was diagnosed with Extraskeletal Osteosarcoma. I have a lengthy history of cancer because of a rare predisposition to all forms of cancer called LiFraumeni Syndrome, but this was the first time I had to go through Chemotherapy.

My brother had osteosarcoma when I was nine so I knew what to expect from the treatment. But, I didn’t expect that my brother would be undergoing chemotherapy with me for his AML, a secondary cancer caused by the harsh treatment he received for his osteosarcoma. This was both a blessing and a curse to have my brother by my side as a built-in support system. It was incredibly helpful that he understood the annoyances of therapy. I never had to explain medical jargon and he can relate to being stuck in the hospital over the weekend because you didn’t clear your chemo.

But, Brent passed away from AML halfway through my treatment. I lost my brother, my inspiration, my other half. But, I kept going. I finished treatment and I brought his spirit with me the whole way.

I am now three years NED and enjoying every opportunity life gives me. Since treatment, I was able to march with the band, make the varsity throwing team and even run the MIB half marathon.

While I wish that I had more memories that were not tainted with cancer, I know that the experience provided me insight that cannot be found in a book. I am looking forward to pursuing a career in nursing. While in the hospital, patients see only the sick. The success stories are outliving their lives. My hope is that in seeing a former pediatric cancer patient who has both survived and thrived, my patients might be encouraged and feel less alienation than I did. I believe that I am doing my part to Make It Better.

Lauren is a MIB Ambassador Agent, Junior Board Member, and FACTOR 2020 Speaker.

Hello, my name is Dominick.
I am an OsteoWarrior.

His Family Shares: Hi my name is Kim and my son is Dominick, he was diagnosed with Osteosarcoma when he was 6 years old. It all began with a limp that would not go away, after a visit to the doctor’s office we were told he had “growing pains”.
 
Several weeks later he was still limping, so we took him to a specialist who did an MRI, the results of which would change our lives forever with the words, “Dominick has a mass on his right distal femur”. A week later we were at Children’s Hospital Pittsburgh. We were referred to Dr. Kurt Weiss an Osteosarcoma Survivor himself. No one could imagine what lay ahead for my son. We had so many questions running through our minds; will we lose our son? How awful will the treatment be? What surgery should we choose? How do we keep our other children from falling through the cracks while we focus on Dominick?
 
Treatment began and so did all the awful things that come with it, he got sick, he lost his hair and he was so thin and pale. After 10 weeks of chemotherapy, he had surgery. We chose Limb Salvage Surgery. The pain after was unimaginable! To see your child in that condition is something no one should ever have to go through. After only 2 weeks he started chemo again. My older kids were starting Junior high and Senior high. It was a very hard time for all of us.
 
When we started chemo, we were told that there would be setbacks, and there would be weeks that his counts would be too low for treatment. Dominick made it through without one set back! He finished treatment on time, on October 26th, 2014. He remained in a wheelchair until January of 2015 and returned to school that month.
 
Things would feel normal for three months at a time until scans were due. The “scanxiety” would set in like PTSD. Thank God he never relapsed -it never spread to his lungs. It’s been six years and he is healthy and happy! There is still pain; Dominick lost almost all of his high-frequency hearing and suffers from back and leg pain, but he is here and we are forever grateful to Dr. Weiss and Dr. Maurer for saving his life.

Hello, my name is Dr. Kurt Weiss, MD.
I am an OsteoWarrior.

In 1989, I was diagnosed with metastatic osteosarcoma at the age of 15. I had surgery to remove my right tibia and reconstruct it with an osteoarticular allograft. This was performed by the late, great Henry J. Mankin, MD, one of my most treasured mentors. I also had surgery to remove the tumors from my lungs. While on post-operative chemotherapy, new lung tumors were discovered in my lungs which were also removed. Not having any other good options, I decided to participate in a Phase II clinical trial of MTP-PE at MD Anderson Cancer Center under the direction of Dr. Eugenie Kleinerman, another cherished mentor. This was successful and I have been in remission since 1990. Unfortunately, I had multiple recurrent orthopaedic complications and my right leg was amputated from above the knee in 1996 between my junior and senior years of undergraduate school at Notre Dame University.

From there I matriculated to Jefferson Medical College (now the Sidney Kimmel Medical College) where I took time off to perform research in Dr. Kleinerman’s Lab, and also a 1-year position in Dr. Lee Helman’s Lab at the NCI, thanks to the Howard Hughes Medical Institute. My son, Connor was born while my wife Laura and I were at NCI. After medical school I started Orthopaedic Surgery residency back home at the University of Pittsburgh and did another year of basic research, this time on osteosarcoma. I did my fellowship in Musculoskeletal Oncology at the University of Toronto with Jay Wunder, MD and Peter Ferguson, MD – also treasured mentors.

I started my first real job at Pitt in 2010 where I have been since. I am now an Associate Professor of Orthopaedic Surgery with joint appointments in Surgery and Pathology. I direct the Musculoskeletal Oncology Laboratory and serve as the Vice-Chair of Translational Research. I live in Pittsburgh with my wife Laura, kids Connor and Anna, and red labs Copper and Penny.

Dr. Weiss was a guest on OsteoBites, watch or listen to his session here.

Hello, my name is Andrew.
I am an OsteoWarrior.

In November 2017, I began to have pains in my upper leg. I was active in sports, so we figured I had pulled a muscle. The pain got so severe it would wake me up in the night. We decided to see a doctor. After an Xray, MRI, and biopsy, I was told I had osteosarcoma. I felt a wall of shock, confusion, and fear. I knew a few people who had had cancer, but I never could have imagined I would be put in that position.
Enduring side effects of chemo, fevers, and feeling terrible, all I could do was keep my family and loved ones close, trusting my doctors and nurses would be able to get me through this. When it was time to surgically remove the tumor, I was fortunate to receive limb-salvage surgery, where my upper femur was replaced with titanium.

I had a lot of time to think about who I was and what I value in life. After spending so much time in the hospital, you being to appreciate being able to go to the park or sleep in your own bed. Throughout my experience, my family and I have tried to focus on the positives and while it was difficult, the further I am out of treatment the more I see the good things to come out of this. I’m able to still do things like swim, play basketball with my friends in the driveway, ride a bike, and I’m on my high school golf team which is something I otherwise might have not participated in. I have also been able to help others affected by osteosarcoma by raising money for my MIB Agents Research Fund. I have also been able to be a Junior Board Member and a member of the advisory panel to help select the recipient of the $100,000 research grant. New doors continue to open for me as a result of my experience and connections within the osteosarcoma community and MIB Agents. I am where I am today because of my incredible support system, my faith, my medical team, and organizations like MIB that understand what I have gone through and helped me come out of my diagnosis a stronger person.
 
Andrew is a MIB Ambassador Agent, Junior Board Member and as a Family Fund Holder, actively helps select the finalists for Osteosarcoma Research.

Hello, my name is Tim.
I am an OsteoWarrior.

My name is Tim Songster. In March 2017 I was twelve years old and had been having strange shin pains. We went to the doctor and had the worst news, I had a primary bone cancer called osteosarcoma. I was very scared and didn’t know how to react.

Once chemo started I was very sick and could not do much. Together with my orthopedic surgeon, we decided to try and save my leg with limb-salvage surgery. This surgery removes the bones that have cancer and replaces them with titanium and cadaver bone. Saving my leg from amputation was very important to me, and I felt like that’s what I should do.

Things went a lot better after treatment; we had a massive celebration dinner, and I felt like I could be a normal kid again. In spite of mine, my family’s and my doctor’s best efforts, my limb-salvage leg would not heal from surgery. The decision was made to amputate. Though this decision was very difficult, I now have freedom from my wheelchair and have limitless possibilities of things to do.

At the MIB FACTOR Conference in 2019, I was recently out of treatment and many surgeries. My leg still hadn’t healed and I was in a wheelchair. I remember saying “I admire anyone who can get through osteosarcoma”. The whole time in treatment I didn’t think I was going to get through, but with my family and friends there I did, without them, it would have been way more difficult.

I now serve on the MIB Gamer Agent Team. If would like to game with us, sign up HERE:
http://bit.ly/MIBgamers

Hello, my name is Ryan.
I am an OsteoWarrior.

Before I was diagnosed with Osteosarcoma, I was a competitive soccer player. In 2014, my world stopped. I was 17 years old and I had zero clue what my life would look like after Osteosarcoma or if I’d even be still alive.
 
Nine months of MAPS chemo and limb-salvage surgery was physically challenging and tested my mental strength immensely. I had hit the lowest point in my life as I had to accept grim possibilities. Because my cancer was located in the head of my femur, limb-salvage surgery wasn’t guaranteed and amputation was a possibility. I was shook. After talking things over to my oncologist and orthopedic surgeon, I knew I was in the best hands. The experience taught me to control my emotions over things I had no control over. Instead, I focused on the things I could control – my happiness and general health.
 
Senior year of HS after OS, was different. I didn’t get to graduate with my class or finish my last soccer season with my team. Battling cancer gave me an enormous amount of time to think about my identity. I began to rethink who I was, what I wanted to do and what I wanted from life.


I had another set-back a year later when a metastatic lung nodule that had to be removed via VATS. Today I’m 4 years NED. I don’t know if my cancer will come back or the long term side effects I will have. It’s something I can’t escape. I hope one day no child will ever have to succumb to a similar fate. It’s why I have decided to pursue a career in medicine. I have recently graduated from 
University of Delaware with a BS in biology, and plan on working in a lab focused on OS before I apply to medical school.

I would not be where I am today if it weren’t for my parents, friends, caregivers, medical professionals, physical therapists, and support team. MIB Agents has connected me with other OsteoWarriors, showed me hope, gave me a platform to share my story, and has helped me come to peace with everything I had to go through.

Hello, my name is Alexis.
I am an OsteoWarrior.

In 2008, I was 15-year old high school sophomore, who spent all my time playing competitive softball. I remember at the time I was experiencing constant knee pain, but thought it was because I had shattered my ankle a year prior. For six months, I continued to play softball in pain, but Easter Sunday I woke up with a huge lump on the side of my knee. My mom took me into urgent care the next day and the x ray showed a huge mass. I was immediately sent to Children’s hospital for tests and a biopsy and I got the confirmation of Osteosarcoma. I remember being terrified, scared, and uncertain what the future held for me. Everyone I had known had died from cancer. I was very fortunate to have a great support system and collectively
as a family we choose to fight.

Battling Osteosarcoma was rough for me, I struggled with many side effects, infections, and constant nausea. After going through nine months of this, I became cancer free, but my journey continued. I constantly struggled with additional complications and underwent multiple limb salvage surgeries. Finally, an infection was discovered, and the next steps were spent saving my leg. After two years of this, I could no longer take the pain and decided to make the difficult
choice to amputate. At eighteen, it was the hardest decision I have ever made, but it turned out to be the right one and I have never once looked back.

From this point on I was finally able to start actually living. I started checking things off my bucket list I created in chemo one by one. From skydiving, traveling around the US, completing a triathlon, to attending college 3,000 miles away in Boston, to also enjoying the little things in life like watching my younger siblings grow up and realizing how truly fortunate to wake up every day.

Spending countless hours in the hospital, I became close with the patients around me. It was here that I met some of the most incredible children, who never let illness stand in their way. I watched how cancer slowly and painfully took their lives and the impact it had on the people around them. These children greatly affected me and helped me realize my true calling in life to become a pediatric oncologist specializing in Osteosarcoma. I am currently on my way to achieving this dream and I am getting ready to start my second year of medical school at the University of Arizona Tucson. I love MIB and they are my second family. They have shown me how to use my voice to enact change and the importance of research, awareness, and how to use my power for good.

Hello, my name is Maeve.
I am an OsteoWarrior.

In 2011, I was eleven years old and in the sixth grade. I loved basketball and I played soccer and volleyball too. Unexplainable pain in my right tibia led me to the pediatrician after soccer practice. Almost immediately, I was off to get an x-ray and within one week I arrived at Memorial Sloan Kettering Cancer Center in Manhattan for the first time. Life changed very quickly from that moment.

No one in my family had ever had cancer before, so this world was new to us all. I had no idea as I walked the walls of Sloan that I was inside of a cancer hospital. I knew I was having a biopsy. I had heard the word osteosarcoma thrown around and I understood the doctors were hoping it was a benign tumor instead. I had no idea, though, that any of these words were related to cancer. On May 6th, 2011, I had my first bone biopsy and I found out that I did have that thing they called osteosarcoma, and it was in fact cancer.

Being told this news is a moment that no one forgets. But I think my diagnosis is unique because to this day it makes me laugh. I was in post-op, still a little groggy when my nurse walked in. Almost immediately, she tells me that her cat recently had cancer, but it was okay because it finished chemo and was doing great now. I looked at my mom and asked her, “Do I have cancer?” to which she responded, “A little bit.” I started crying. And the nurse crumbled, recognizing she had said the wrong thing. Most people would say this was a huge medical error. But I can’t imagine it happening any other way. Who really wanted to be the one to tell me this news anyway? My nurse ripped off the band aid and made an impossible moment a laughable one.

Soon after, I began chemotherapy on a MAP protocol. My prognosis was good. The cancer was localized and had not yet spread to my lungs. My treatment team said that my tumor was the smallest they had ever seen. So small that they were surprised it was even symptomatic. The small size also meant that limb salvage surgery was possible. After three months of chemotherapy, I had a sixteen-hour vascularized fibular graft surgery to remove my tumor and replace the tibia in my right leg. Once I was strong enough, it was back to chemo. All things considered, I handled the intense treatments well and managed to avoid infections for a while. Through it all, I played cards with my mom and I did schoolwork with the hospital tutor and I laughed with my nurses.

Finishing treatment, I learned that it was just the beginning of my healing. Chemo had slowed down my orthopedic recovery. Six months after surgery, I was still not weight bearing on my leg. Chemo prohibited bone fusion, and a leg length discrepancy was forming. I was unable to return to basketball in eighth grade, as my surgeon promised, since I was in and out of the operating room to replace hardware and promote bone fusion.

Come April 2012, at a post-op appointment for an iliac crest bone graft, my surgeon was walking out of the room when he noticed that my leg looked different. On May 6th, 2014, exactly three years after my first diagnosis, it was confirmed that I had a local recurrence. My prognosis was bleak, even with the prescribed treatment plan of an above knee amputation and more chemo – this time ifosfamide and etoposide. Unlike the first time, I now understood what my diagnosis meant and the pain that comes along with it. I was devastated.

While my body responded well to MAP, the side effects from the new treatment were brutal. I was constantly hospitalized, and my body had clearly had enough. The decision to withdraw chemo early was made, but scan by scan the uncertainty of my future slipped away. I regained strength and returned to school full time in eleventh grade, graduating with an IB Diploma on time with the rest of my class in 2017. I moved the Boston that fall to begin Northeastern University, where I major in Health Science on a pre-medicine track. I am now six years NED, heading into my fourth year of undergrad, active on campus, and preparing to apply to medical school. I am an Ambassador Agent and Junior Board Member at MIB Agents and eager to continue Making It Better for kids with osteosarcoma!

MIB is so grateful for Maeve’s service to the kids we serve through Ambassador Agents, on our Junior Board and in working together with The Osteosarcoma Project.

Hello, my name is Amanda.
I am an OsteoWarrior.

My parents and sister were nearby when I woke up from a biopsy on August 11, 1987. Moments later, the words “You have Osteogenic Sarcoma” changed everything.

In the 80s, you never heard of a kid getting cancer. Cancer as a 15 year old back then was very isolating; no internet, social media, movies, tv shows or books portraying a sick child. My family was alone and even shunned. Hope for survival was offered through a year of chemotherapy and many surgeries on my leg and lung. Pure torture which hasn’t changed much today, 33 years later.

23 years after OS, I was diagnosed with breast cancer. I was 38 with a husband and two healthy sons. Cancer, why me, again? I turned to Facebook, joining a Public Osteosarcoma Group. Shortly after joining, I became the administrator. In Jan 2019 I started a Private BoneCancer Support Group. Today, I’m honored to advocate for 5,000 OsteoFamilies. I was so fortunate to survive and thrive after OS, surviving has brought many challenges and survivor’s guilt; disability, broken prostheses, multiple surgeries, fear, pain, cancer scares and breast cancer. But, I survived. All these challenges are a driving force behind supporting all members of the FB groups, they are my inspiration.

My story does not end here. In June, 2018, I was diagnosed with ALS. Through the horror this disease brings, with a life expectancy of 2-5 years, and the abilities it has already taken from me, I will never stop my advocacy of supporting families with OS. As a two-time cancer survivor and ALS patient, I choose to remain positive. When I am told there is no hope, I remember days when there was little hope but yet, I survived. I believe in a better future for OS, thanks to MIB Agents, and even for ALS.”

MIB Note: We are grateful for, and inspired by Amanda Braunfeld Levine everyday. She quietly demonstrates courage in the face of significant pain and adversity, while simultaneously battling a nefarious disease. The manner in which Amanda supports and cares for those she serves through her own pain is an example of the best of humanity and how to Make It Better.

Hello, my name is Kelly.
I am an OsteoWarrior.

My mother was dying of lung cancer in Oct ’06, while caring for her, my knee started to ache. I attributed the pain to my trying to move my mother to make her more comfortable. I took Motrin to help with the pain. My mother died on October 18th. The pain became worse. I am quite stubborn when it comes to going to the doctor, so I kept putting it off and took Motrin. I was a teacher whose 3rd graders saw me limping and told me to go to the doctor. Thanksgiving morning I went to the ER. I could hardly walk. An x-ray was taken of my left leg. When the ER doctor examined me, he told meI had a “tuck” in my leg gave me exercises. He had not even viewed my x-rays. Once they were finally viewed, he told me to go home, do all of the exercises, and call my doctor on Monday. I was (eventually) referred to a bone surgeon who said that in his 29+ years of surgery he had never seen anything like what was in my leg. He referred me to another surgeon who did a biopsy and sent me home to wait for the pathology report. Two days later, the news, “high-grade #osteosarcoma”. Chemo made me extremely ill, esp high-dose methotrexate. After several rounds, I had limb-salvage surgery. Several weeks later I developed a staph infection and the docs worked to save my leg again. Chemotherapy began again three weeks later. They ended before the prescribed course, but side-effects incl hearing loss, prevented further treatment. I was done – and cancer-free! Today I have a noticeable limp and my leg is painful at times. There are things I cannot do, and may never be able to do again, but I thank God and my doctors for giving me back my life! Another devastating blow came soon after, chemo-induced acute myeloid leukemia. After searching for my perfect bone marrow donor match, Michael, a man from Germany, was a 10/10 match! As of today, I am nearly 12 years post-transplant. I still struggle with walking and other treatment-related issues, but I feel wonderful and live life to the fullest!

Do not sweat the small stuff. Most importantly, always remember to LIVE, LAUGH, and LOVE! – Kelly

MIB Note:
Kelly is the inspiration behind Agent Writers. She wrote MIB Founder Ann Graham a letter of hope & support just after her limb salvage surgery. It meant so much! Kelly is WHY we have Agent Writers today!

Hello, my name is Jeff.
I am an OsteoWarrior.

My name is Jeff , and I am a 6’8, 24-year old former high school basketball player from New Jersey. After graduating, my hope was to attend prep school, then continue my basketball career at a collegiate program.

In June 2014, my father noticed that my left thigh was larger than my right. We thought I was favoring my left leg when I was lifting weights, so worked out my lower body with one leg at a time. However, my bigger leg was weaker than my smaller one, which did not make any sense. A subsequent x-ray revealed a 38 centimeter long tumor on my femur, which covered the entire bone. I did not know how to react or what to expect to happen next. All I knew was there was clearly an issue and it needed to be fixed as soon as possible. 

Days later, my family and I traveled to Memorial Sloan Kettering Cancer Center in New York City for the first time. We met my primary oncologist, his team of co-workers and my orthopedic surgeon (who would become the person who saved my leg). Lots of tests and a biopsy later, I was diagnosed with osteosarcoma. It was not the news we had hoped to hear.

The day after my diagnosis was my graduation from High School. I never would have imagined high school would end with me as a cancer patient. The following Monday was my first day of chemotherapy. My first ten-week cycle of chemo came and went, which lasted for the entire summer of 2014.

In September, I went in for a thirteen-hour surgery to remove the tumor. My femur and knee were replaced with a titanium rod and an artificial knee. I was hospitalized for ten days, when I had to work through severe pain to get up from bed and begin working again. The tumor was finally out of me, but there was still much to done about the cancer cells that were spreading beyond my femur. My doctors had spotted cancerous nodules that spread to my lungs. I underwent two lung surgeries in November and January. The rest of my time getting chemo went by fast. During this time, I got to be with other teenage patients in the teen lounge of my hospital floor. It was there that I got to make friends and share similar stories.

On Saint Patrick’s Day of 2015, my nine months of chemotherapy finally ended and I was declared cancer free. It was an incredibly awesome feeling to say the very least. It was time to move forward in life.  My survival did come with a price. I could no longer play basketball with my new leg, as the rod that was placed in me could’t tolerate impact, so I became an assistant coach with my high school team, which gave me something fun to do and kept me in touch with old teammates.

There was another passion I always had, to work for a history museum.  In the fall of 2015, I began College in Saint Augustine, Florida. After only two months of my freshman year, the prosthesis that replaced my femur loosened from my hip. The pain was so incredibly terrible, that I needed to return home for further treatment. In January, my second femur and knee replacement was completed and I felt better immediately after surgery. I would have several more leg surgeries. I graduated from Flagler with a degree in Public History this past spring, although it needed to be celebrated in quarantine due to the coronavirus. I will continue my education at George Washington University in Washington, DC to pursue a master’s in museum studies. While there, I aim to fulfill my lifelong dream of working for a history museum.

Thanks  to my family, medical team, physical therapists, teachers, friends and God for helping me through these challenging years, who have allowed me to stand and pursue my desired future.

Hello, my name is Jarvis.
I am an OsteoWarrior.

I moved to America with my family when I was 10 years old. Five months after we arrived I was diagnosed with osteogenic sarcoma. Not knowing English made it very difficult for me and my family. The doctors did their best to explain everything they were going to do through a translator; however something always gets missed. My amputation was in March of 1986 and one week later they found a large metastasize in my right lung. They went back in for surgery and removed the metastasize in my lung. Despite the early prognosis being not very good – they did their best with everything. I was given heavy rounds of doxorubicin and cisplatin. I remember having to be checked into the hospital every time I needed this treatment. I felt like this treatment lasted forever, but I remember my last dose was given to me around Labor Day. I was able to find a cancer camp called Special Love and that’s where I first began to feel normal again.

I was diagnosed with cardiomyopathy in 1991, which was caused by the doxorubicin that was given to me for osteosarcoma, and I was put on medicine for this issue. In May 2013, the cardiomyopathy caused me to go in to cardiac arrest. I was dead for 15 minutes and was placed in a medical coma for 3 days. I received a new heart on August 4, 2015.

Throughout my life, I have tried to live as normal as possible. I competed on my high school swim team, learned to ski with three
tracking, and I love doing all types of sports. Through all of this I have maintained a positive outlook on life and cancer has made me a better person.

I am so blessed by God to be given so many chances at life. I am doing my best to pass my knowledge along, and to share my story because a lot of others have lost their lives to this horrible disease. I am a survivor and live my life to the fullest. I love the MIB and hope my story will help others.

Hello, my name is Ann.
I am an OsteoWarrior.

Ten years ago my husband and I were training for a marathon. I was the Director of Sales & Marketing for a luxury Hotel in New York, had a floral & event design company, three daughters aged 11, 15 and 20, and a sore leg – like a REALLY sore leg.

A Sports Med doctor diagnosed me with “over training”, the first in a series of misdiagnoses over nine months. Ultimately, I couldn’t stand on my left leg, crutched into my doctor’s office and (uncharacteristically) demanded an MRI. After three hours in and out of the MRI, with a solemn parade of white coats shuffling in and out of the glass box behind me, I was released and, despite the now late hour, was told my doctor was waiting for me.

A few days later I woke up in a recovery room, post-biopsy, with my husband and Oncologist bedside looking grim. Diagnosis: #Osteosarcoma. The distressing news didn’t stop there. I was to face amputation or limb-salvage surgery, nearly a year of wildly toxic chemotherapies and, though I was 43 years old, would be treated in pediatrics. Oh, and I should expect to be disabled and unable to work – I needed to quit my job and close the company I had worked really hard to build.

“Really Hard”, it turns out, are two words that I didn’t understand the full meaning of. There were no words to prepare my family or I for the grueling emotional and physically trying experiences ahead. It’s like when people tell you that having a child will change your life. The statement is a supernaturally inadequate one.

As the title of this writing “Stories of Hope” would indicate, I survived, and was grateful to return to my job and my pre-cancer life. But to just say that is to gloss over the loss. Hair falling out was but a gentle harbinger of the colossal series of losses to come for my family and I. Seeing a child die is a loss that is too big for any words that I have. Seeing many kids die is the unseeable and unthinkable -expanded. The losses this cancer brought were not mine alone. There was the loss of my children’s sense of security that I would -as I had always assured them – be there. Anticipated joy was removed from imagined future family events that I would be missing and missing from; my daughters’ graduations, first loves, weddings, children. How many more times do I get to hold my husband’s hand?

We operated for a year without any sense of assured future joy. Yet, I was acutely aware that you cannot lose what you do not have – and I had the privilege of marrying the love of my life, the joy of three kind daughters, a job, my own house – all things that were so beyond the imagined reach of the kids I was treated with. I had already had 30 years more than my fellow patients could dream of.

Pain is the seed of transformation. The greatest part of your life now likely had its origin in your greatest suffering. If you only have suffering, the joy is yet to be realized. There are other great gifts – seek, and you shall find them. For me, my Faith in God expanded to be a friendship, a real presence to walk beside. Love increased from friends, family and even strangers, and Hope that ‘better’ is not only on the horizon, but carried within each moment.

I was changed significantly by a pediatric cancer at age 43. Because of the disease? Yes, absolutely yes. The unexpected change was because of the kids in treatment with me. Their tenacity and astonishing grace in the face of daunting odds, excruciating pain and suffering was transformative for me. How could I go on as before? I wanted to Make It Better for them somehow. I knew then, as I often do now, that I am wholly unqualified to undertake this audacious task. Yet, by the grace of God, the generosity of you, the expertise of the oncologists and researchers we work with, a whole lot of volunteers and a truly dedicated team who have ‘been there’ – we are doing just that.

Everyone can do something to Make It Better. In fact, we must #MakeItBetter in honor of the kids who did not survive this disease. Thank you for reading. Thank you for being a part of this mission. Thank you for Making It Better, for using your powers for good. It matters greatly. – Ann Graham, President MIB Agents

Hello, my name is Caitlin.
I am an OsteoWarrior.

My story starts in April of 2016. I was making cupcakes and decided to mix the batter by hand since I was too lazy to get out the mixer. The next day, I noticed that my right shoulder and bicep were sore. I thought it was sore from mixing the cupcake batter by hand but as the days went on and things didn’t get better, I knew something was wrong. I kept telling my mom that my arm hurt but it wasn’t until June that I went to the doctor. I was only in his office for about ten minutes and left with the diagnosis of tendonitis, an inflammation of the tendon. I was told to go to physical therapy twice a week after that. I walked out of the office happy that I had finally got an answer to what the pain was and a game plan for moving forward. 

After a few physical therapy visits my physical therapist noticed that my shoulder wasn’t behaving the way it should if it was tendonitis, so he referred me to an orthopedist in the area for an X-ray. The X-ray showed a mass on my upper arm, just below my shoulder. He referred us to his friend who is an orthopedic surgeon in Beverly Hills. The orthopedic surgeon wanted a few more scans the next day to confirm but he told me that I had a textbook case of osteosarcoma. On July 21, 2016, at the age of 14, I was told that I had cancer. 

Chemotherapy started soon after my diagnosis and on November 4th, 2016, I had my shoulder and most of my humerus replaced with titanium. I continued my chemo treatment and got stronger everyday after surgery. The pathology report on my tumor came back with 95% necrosis or cell death. It was one of the highest percent of tissue death my orthopedic surgeon has had. In April of 2017, I finished chemotherapy and a month later I was able to go back to school. I settled into my new “normal” life and was back to being a typical teenager.

On March 30th, 2018, I received a phone call from my oncologist saying that the spots I already knew I had on my lungs, had grown in size and number. The fight wasn’t over yet, and on April 20th, 2018 I had my first thoracotomy to remove and biopsy the tumors in my lungs. They were confirmed as osteosarcoma and I had to go through chemotherapy again. Throughout the course of the second cancer treatment, I had 5 thoracotomies. The most recent one being on March 20th, 2020.

I am starting college in the fall and I am getting my independence back. I relied on my parents for so long to take care of me that it feels nice to have freedom back. I have my whole life ahead of me that I can need to start planning for today.

Hello, my name is Kambre.
I am an OsteoWarrior.

I was 5 years old and it was my first day of Kindergarten in August of 2016. I slipped from the monkey bars that afternoon and injured what I thought was my hip. An X-Ray in the local ER that Thursday evening revealed no fractured hip, but did show the muscle pulled away from my bone right above my knee which indicated and later was verified to be diagnosed as Osteosarcoma. My parents think an angel pushed me from those bars as prior to that fall, I had no pain or symptoms indicating an illness.

My journey of treatment took place 5 hours from my home at Children’s Mercy Hospital in Kansas City. 
After my first two cycles of MAP, I had rotationplasty. At 5 years old, I didn’t really help make the
decision but did understand this was the best option based on my size and age. I also got to meet a really cool kid named Carter in Boston during my second opinion that showed me that I could be an
active kid with no limitations with this surgery. My mentor during the whole treatment process, Gabi also helped me see that this surgery as well as Osteosarcoma could be beat and that I could be a normal
kid again soon!

After nine months and completion of MAP, we left the hospital on the Saturday evening before Easter 
2017 and drove home through the night in order to celebrate Easter at my home church. It was a
celebration of Christ’s rising and our families new life beginning after treatment that year.

I’m beyond blessed to share that I have been cancer and treatment free since that time. I have been 
able to get back to being an active kid playing volleyball, swimming, bike riding and conquering any
challenge I set my mind to. I love my annual summer camps with all the cancer warrior kids and think that the MIB Factor conference is one of the best weekends of each year! MIB has provided so many
great opportunities for me to meet individuals just like myself as well as some great resources for questions I may have as I progress through life as a Survivor. I am thankful for the kindness and work of
all those who are helping to Make It Better and grateful to be able to also share and be a resource for kids who are living a life similar to mine.

Hello, my name is Sloane.
I am an OsteoWarrior.

When I was little I played all kinds of sports. My favorite was baseball. I played whenever I could, worked hard and played hard. When I was eleven I tried out for my brother’s 14U baseball team. I made it on, as the only girl in the league! When we started winter training, I realized it hurt to run. I didn’t find this too unusual because at the time I was diagnosed with Sever’s disease, and had been for a few years. But then I could barely walk.

I got an X-ray and an MRI (that took five hours). On December 23, 2016 I was diagnosed with osteosarcoma bone cancer, in my right femur. I started chemo on New Years Eve and continued through August, finishing 18 rounds. In the middle of my chemo I had limb salvage surgery (LSS,) replacing most of my femur and my knee.

After I finished chemo I didn’t know what to do, or what I was going to be able to do. I can no longer run. I couldn’t play baseball, which had been my main focus before treatment. I struggled for a while. Then I shifted my focus to music and theater. I am now a freshman at a world renowned arts high school, studying violin and voice. Before cancer, if you had told me that my life would end up like this, I would have laughed. I couldn’t imagine myself being a musician. Now that I’ve lived it, I wouldn’t change a thing.

Hello, my name is Lillie.
I am an OsteoWarrior.

I’ve always loved horses. I started riding when I was 12 and got my own horse when I was 13. I loved to compete and started training 20 hours a week for U.S. Youth Nationals when my knee started to hurt. We figured it was all the riding and I kept pretty quiet about it for a while. We knew it was bad when I skipped a lesson. My trainer called my mom told her to get me to a doctor, because I’d come for lesson with the flu before, and if I wasn’t coming to ride, something was very wrong. I’d actually been misdiagnosed for 8 weeks before that, a sports medicine doctor said I just was growing too fast and needed physical therapy. 

Now we had the actual diagnosis; cancer. It didn’t really hit me what cancer would be like. I didn’t even know what chemo was, other than it made my aunt’s hair fall out when she got it. I just remember everything being new and a lot harder than I had thought it would be.

My tumor was in my knee, and I had an LSS, replacing the knee and all but a couple inches of femur with a titanium prosthetic, which failed three times and got infected over the course of a few years. After treatment I would also break the plastic plate in my knee while on a year long service mission for my church! I finished chemo after a year and slowly worked my way to my new version of normal. It took me two years to learn how to walk again, but now I rock climb, backpack, horseback ride— I can even do this almost jog thing, but my husband says it looks like I’m running with one foot on a curb, and one on the street! 

That’s been part of my new normal, I found the man of my dreams who took me to my yearly scans the day after becoming my boyfriend. During those appointments, my doctor accidentally brought up my potential problems with fertility from the chemo in front of this brand new boyfriend of mine. It didn’t phase him. We got married and to my utter amazement, we were blessed to bring the most beautiful baby boy into the world in January of this year. 

I remember times during chemo when I had no idea if I’d walk again. I just wanted my hair to grow back and to just stop throwing up for one day. I wanted to be normal. My new normal is better than I could have imagined. Having osteosarcoma has given me a new view on life, and helped me to lift others facing similar trials. 

Hello, my name is Nicholas.
I am an OsteoWarrior.

Hi, my name is Nicolas Garnier, I am 39 years old, I live in Collegeville Pennsylvania, and I am a survivor of a pediatric osteosarcoma. Paris, France, April 1996 -I am in 10th grade, I love grunge music and riding motorcycles (no helmet) with my friends. I also like to bleach my hair.I am on the high school basketball team. We are terrible, but we have fun. For some time, my right knee has been hurting. I start skipping practice. One day, I can’t walk home from school. Parents, family doctor, local clinic X-ray, inner-city specialist MRI. After, we are driving home, I am sitting in the back. Silence. “So?”, I ask. “It’s a tumor”, my father responds. Blood rushes to my face, my hands are wet. I feel dizzy, like someone just hit me at the back of the head with a baseball bat. My throat hurts. My stomach hurts. Why is it so hard to breathe? Back home, that night, my father pulls our encyclopedia from the living room book shelf: Cancer. “Sarcome ostéogène de l’extrémité supérieure du tibia droi”

9 months of intensive chemotherapy, 7 orthopedic surgeries over 4 years, 1 lung biopsy, 2 port-A-cath, 1 staph infection, 2 years of antibiotics, 42 inches of scar, 1 knee fusion, two turtle doves, and a partridge in a pear tree.

I got lucky. I made it. Now I have to figure out my life, in the middle of this shipwreck. I will study biology, I will study those “cells” that I kept hearing about. I want to understand what happened to me. On my college application, I wrote: I want to pierce the mysteries of life, of the infinitely small. In 2013, can you imagine how proud I was to graduate from McGill University with a PhD in Experimental Medicine?

Today, I try to put all that to good use. I work for Pfizer in Rare Disease Patient Advocacy, and I want to give a message of hope to all my brothers and sisters in arms, with the help of MIB Agents. Most importantly, my 3 wonderful children, Emmanuelle, Gabrielle and Samuel, are like little angels that were bestowed upon me and my dear wife Alicia.

Everyday I cherish my luck, and I try to be worthy of it.

Hello, my name is Jacob.
I am an OsteoWarrior.

Hello, my name is Benjamin.
I am French.
I am an OsteoWarrior.

Here is my story:

1) My story begins in 1994, I was 8 years old. I was in great shape.
2) In 1995 I was 9 years old. After regular knee pain, I learn that I have osteosarcoma. Treatment is very difficult and I lose all my hair, but I keep fighting.
3) At the age of 12 I fractured the prosthesis, I’m operating again, and I do months of rehabilitations.
4) Age 18, time for an adult endo-prosthesis, after staph infection, I again underwent dozens of operations. Hundreds of days in bed in the hospital. Thousands of stitches. Complications etc, my body was broken., Fortunately I was well surrounded by my family and I always kept faith in victory.

5) Then for my 24th birthday I made the decision to have myself amputated because I had been living in hell for too long. After that, it took me two years to be able to walk perfectly. I trained like crazy to become independent. Then I continued my training and there, more at the physiotherapist but in the gym.

During these years of hospitality to keep morale I made a plan of something I would like to do when I was healthy I dream of being strong like a superhero. So I trained in the gym to become Weightlifting Champion.
6) I become vice champion of France, I win the coup de de France
7) I then launched my ultimate challenge, to Cross Europe By Bike. I cross 10 countries and travel more than 3000km by bike I see so many things it was just beautiful!
8) Now I am training to climb the Bishorn in SWITZERLAND on June 6 and 7, 4,153 meters above sea level. 10 months of preparation, 3 days of walking.
9) NextI will climb the magnificent Mont Blanc, the summit of Europe 4810 meters of alititude
10) Will again attend the MIB Agents FACTOR Conference in 2021 with many stories to tell!
———————————–
You know my story, my projects
I am so happy to live and there is still so much to discover.

#BelieveInBetter #MakeItBetter #osteosarcoma
Follow @benny.fight on Instagram

Hello, my name is Vince.
I am an OsteoWarrior.

Hello, my name is Mike.
I am EMS Tour Chief.
I am an OsteoWarrior.

“Cancer sucks, but you can still do what you love. I was 17, a freshman in college and diagnosed with stage-4 osteo in my left femur. After a year of chemo, two thoracotomies and implant surgery, I was able to go back to school and graduate with a degree in Emergency Medical Service Management. I’m now a Tour Chief with Jersey City Medical Center and a member of the New Jersey Disaster Medical Assistant Team (DMAT). I still battle late-effects from treatment, but that doesn’t stop me from living my passion of helping people.”

Mike’s #Osteosarcoma fight also inspired his sister Kelli Wright to help others. She is dedicated to #MakeItBetter for #PediatricCancer kids in her work at CureSearch.

Hello, my name is Torie.
I am an OsteoWarrior.

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