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
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.
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.
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.
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.
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.
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
“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.