Ann Graham

My Osteosarcoma Diagnosis Inspired Me to 'Make It Better' for Children With Pediatric Cancer


After years 20 years of being an on-again and off-again runner, the time had come at age 42 for commitment. I registered to participate in a marathon in my town of Lake Placid in upstate New York.  A month into my training, my knee began to hurt. A lot. I visited my doctor, who rightfully remarked that this type of pain happens when you are a 40-something runner. Nine months, multiple misdiagnoses and a skipped marathon later, the pain was so great I couldn’t put any weight on my left leg. An MRI was finally ordered.

The radiology tech would gently tell me after each 20-plus minute ride on the flat board through the jack hammer tube, that they needed another study, then some contrast, followed by another set of eyes, one more time… Three hours later, I was done. I got dressed and ready to go home to my three daughters. As I swung my purse over my shoulder, the radiology tech put her hand on my shoulder as I was dashing out the door and said I needed to see my doctor. I said, “OK, I’ll call her tomorrow.” “No,” she responded quietly, “she is waiting for you now.”

As I drove back to the doctor’s office, I passed by my house and called my husband. “I’m not sure what’s going on,” my voice started to warble with the weight of the words about to come out, “but the radiologist is sending me back to the doctor now.” My dear husband, John, knew that warble from similar calls related to three difficult pregnancies.  He responded with urgency to my shaky voice with an immediate, “I will see you there.”

Crutching into the now after-hours, dim and almost silent doctor’s office, I went straight in to find my doctor waiting for me next to a computer screen with my MRI illuminated. I went flush with emotion and fear at the sight of my MRI with a bright white space the shape of South Carolina at the top of my tibia. “I know what you are thinking,” she started somewhat defensively, “cancer.” “Well, I am no doctor, but that is cancer.” I left immediately and found John coming toward me, the sight of him releasing a damn of fearful tears.

A few days later, I was at Memorial Sloan Kettering Cancer Center in NYC, being wheeled into surgery for a bone biopsy.

I woke up in a recovery room from bone biopsy surgery feeling foggy and bleary-eyed. John and my surgeon were standing at my side. I smiled at the sight of them, and realized that they were somber. John was squeezing my hand, hard; “Hi, Annie.” His voice was library-quiet. Dr. Healey, my surgeon spoke with the same nearly silent voice, “Ann, it is osteosarcoma.”

Two days later, I was cleared to leave the orthopedic surgery floor. John and I were sent to see Dr. Meyers. The elevator doors opened to an uncharacteristically (for a hospital) brightly painted, funky shaped furnished, whimsically lit waiting area. “Is this the right floor?” I wondered aloud to John who was pushing my wheelchair, “I think this is a pediatric floor.” “It’s where this paper says to go,” he responded as confused as I. I remember saying, “There shouldn’t be such a place as a pediatric cancer floor, it just doesn’t seem right that kids should get cancer.” It was after hours and it was quiet. Really quiet.

Within moments, a young woman with a long white coat came out to greet us and asked us to follow her. “Dr. Meyers and the team are waiting for you,” she said gently. Once settled, we discussed the diagnosis, chemotherapies, inevitable multiple surgeries and hospitalizations. We got paperwork and peach-colored cards that each explained the four different kinds of chemotherapies I was to receive and their side effects. Dr. Meyers told me that, “…the treatment for this type of cancer is aggressive and debilitating. At some point in treatment, we will likely have to decide if you are able to complete the treatment. You will not be able to work anymore. We need to start immediately.”   

We left the hospital for the five-hour drive back upstate. On the way home, I started to go through the copious amount of paperwork in my lap. I read aloud the side effects, the damage that will happen — hearing loss, heart trouble, infertility, hair loss, neuropathy, amputation or limb-salvage surgery (bones in my leg to be replaced by a titanium mega-endo-prosthetic), on and on… I stopped reading aloud, emotion tight in my throat, not allowing the words to leave my mouth. The accumulation of the talk of “loss” was suddenly and fully upon me.

A week later, I checked in to the Pediatric Cancer Center for my first of 30 rounds of complicated chemotherapy cocktails. I was put in a small pocket of a large honeycomb of busy rooms filled with children undergoing the same thing as me — different regimens, but the same.  There were regular intervals of ear and heart piercing cries of pain that would slice the chatter. Yet, on the whole, these young patients seemed cheerful. It was awe-inspiring.

Seeing the parents of these warriors was like seeing battle-weary soldiers who had been through too much pain, seen too much suffering, yet they were steadfastly marching on — with an exhausted yet hopeful eye toward beating the enemy. To believe in anything but victory over their child’s cancer was unthinkable. In the halls, the parents shared patient information sites so they could stay in touch with each other. In their honeycomb rooms, they would sleep only when their child slept, half seated in a chair, half draped across the bed, holding a hand, ankle or leg — whatever wouldn’t cause discomfort for their child. Just holding on. 

These parents are mighty warriors – the ordinary person facing a beast that is trying to take their child’s life down. The parents who have suffered an excruciating loss, the death of their child to cancer, will forever have a section of their heart severed. I can’t profess to know the pain of this supernaturally agonizing loss. I know from too many grieving pediatric cancer parents that this brand of pain is forever raw and always available and very, very heavy.

I am the outlier — the adult with the pediatric cancer who survived it. Far, far too many do not outlive osteosarcoma. The beast must be stopped. I created MIB Agents to do just that — we want to Make It Better by supporting the child through treatment: first, pairing them with a survivor; second, providing iPads and noise-canceling headphones; third, if treatments fail, creating end-of-life experiences when hospice enters the family’s home. Funding, awareness and research are part four of our collective crusade. 

MIB Agents is sponsoring an osteosarcoma conference this February. We are bringing together the top doctors and researchers with osteosarcoma patients and caregivers to forward our common goal of awareness, funding, collaboration, research and a cure.

RELATED VIDEOS

Cierra Walsh

Why I Feel a Shred of Doubt When I Say My Cancer Made Me Better


As I sit in my room at 9:23 p.m. on a Monday night, blowing off three homework assignments that are due tomorrow, a question echoes in my brain: Are you better off?

We are frequently asked this question, both by ourselves and by others. But how often do you truly take the time to consider whether you are or aren’t better off? I ask myself this question quite often, and I have just recently realized that I rarely ever truly evaluate my answer.

I had cancer. Not many people (on a grand scale) can say they had cancer at the age of 15. Of course, knowing lots of other people with cancer comes with the territory, and I often find my perspective is a bit different from theirs. A lot of people would say that cancer made them better, stronger, wiser. In some ways, I think this is true.

But honestly, I don’t know if I am better off for having had cancer. I don’t know if I am better off for having spent nine months in the hospital, I don’t know if I am better off for having had four surgeries to salvage my limb, and I don’t know if I am better off for having lost everything I used to love about my life. Though the gains far outweigh the losses that cancer caused me, I can’t help but feel a shred of doubt when I answer “yes” to this question.

Can I really say that waking up every morning and loathing my scars is worth a bit more strength and maturity? Can I truly believe that losing my blissful ignorance to tragedy is worth feeling like I know something more than my peers? I can’t really be sure. I honestly don’t know if I am better off.

So I try not to evaluate my experience by how it affected me. Instead, I evaluate it by how it affects the way I treat those around me. More than anything, I now understand what it’s like to go through something you can’t fully grasp. When somebody explains the intangible, but lingering, weight they feel as a result of tragedy, I actually know what this weight feels like.

When I look at my friends now, I don’t see what they can do for me or how they can make my life better. Instead, I see how I can make them feel appreciated and less alone. I can’t pretend to know what everybody is going through at all times, and I can’t pretend to know what I’m going through either, but at least I can help them carry that weight, so that one day they may say that they really are better off.

“The Mighty, in partnership with Fuck Cancer, is asking the following: Write a letter to yourself in regards to a cancer diagnosis. What would you say or wish someone had told you? Find out how to email us a story submission here.”

Dugan Smith with his surgeon, Dr. Joel Mayerson.

How My Experience With Osteosarcoma Influenced My College Major


When I walked across the stage at Fostoria High School to receive my diploma on June 5, 2016, it was a monumental moment for me and my family. While graduation is obviously a big deal for everyone, walking across that stage signifies something a little deeper for me.

In 2008, at age 10, I was diagnosed with osteosarcoma, a kind of bone cancer that makes up less than 3 percent of all childhood cancers. Treatment required me to have my right leg amputated above the knee. I was devastated. I’ve always been very passionate about playing baseball.

My family was faced with a tough decision, trying to figure out some way to keep me as mobile as possible post-surgery.

Dugan Smith is shown on the pitcher's mound.

With guidance from my orthopedic oncology surgeon, Dr. Joel Mayerson at The Ohio State University Comprehensive Cancer Center – Arthur G. James Cancer Hospital and Richard J. Solove Research Institute, my family chose a complex, uncommon surgery that would let me keep the remainder of my leg, but reattached and backward.

The so-called “backward leg” (rotationplasty) procedure allowed doctors to remove the softball-sized tumor in my leg but leave the nerve that controls my foot intact. The procedure turned my calf into my thigh, my ankle into my knee, and my foot into my shinbone. A prosthetic foot and ankle replaced my former lower leg.

Along with therapy and strength training, rotationplasty gave me the best chance of full mobility. Other surgeries would have required surgeons to rebuild my leg with a metal rod, which would have limited my ability to run, jump and play sports. That’s not what I wanted. I’m grateful that my parents considered my future and chose the path that was right for me when I was too young to do so for myself.

Dugan Smith with his surgeon, Dr. Joel Mayerson.

To this day my parents still smile a little when they remember how stressed they were over endless questions about the surgery and my future. Meanwhile, the only question I was concerned about was, “Will I still be able to play baseball?”

The answer, a mystery at the time, was a resounding yes. I’m now 18 and continued to play baseball and basketball throughout junior high and high school. In fact, I may even play baseball in college later.

The next chapter of my life is inspired by my personal experiences as an amputee and cancer survivor. This fall, I will attend Bowling Green State University and study human movement and kinesiology. My ultimate goal is to design modern prostheses for people affected by amputations and limb abnormalities.

I’ve often questioned why I was diagnosed with osteosarcoma and given the challenges I have faced. But this experience has changed my life and helped me look at things differently.

I feel like I need to help people, and that’s why I’m here today. I didn’t understand cancer when the doctors were explaining it to me as a kid. I just thought you died. But today I see beyond that. I tell other kids diagnosed with cancer that it’s going to be a long road, but you have to fight, be determined and just keep going. You can’t let it bring you down.

This story was originally published on The Huffington Post.

The Mighty, in partnership with Fuck Cancer, is asking the following: Write a letter to yourself in regards to a cancer diagnosis. What would you say or wish someone had told you? Find out how to email us a story submission here.

Cierra Walsh

The 3 Words I Want Teenagers Diagnosed With Cancer to Hear


I have tried to write this so many times, but I always seem to draw a blank when I’m asked to give advice to teenagers like myself on how to battle cancer. I suppose there is really no advice I could give that hasn’t already been given. But more than that, I just feel as though no advice I can give would ever be as helpful as I would like it to be.

Instead of telling you how bad the taste of rust is in your mouth during a saline flush, I want to go beyond my diagnosis and treatment. Here goes nothing: the good, the bad and the ugly. Yikes.

I was diagnosed with osteosarcoma on March 19, 2014. My treatment consisted of nine months of chemotherapy. I had four surgeries on my leg, including a limb salvage procedure to remove a softball-sized tumor in my right femur. And I spent more than two years on crutches. I lost everything: my hair, my friends and myself. But after more than two years since my diagnosis, I realize it took losing everything before I could truly find where I belong.

My cancer was something that took a long time for me to understand. My brain knew I was sick. My eyes could see I had lost weight. The sores in my mouth and throat told me I was clearly in chemo. And the scars left all over my leg were obvious symbols I had survived something.

Even now, a piece of my heart doesn’t know I had cancer. A small part of me wants to ignore the reality and believe I am a completely normal 15-year-old girl. But truthfully, no childhood cancer patient ever qualifies to be a normal kid. They are far more strong, wise and extraordinary than any other child. We are amazing, talented and incredibly special, but that doesn’t mean everything returns to normal after the battle.

In my experience with chemo and life afterwards, I felt like I couldn’t relate to my peers anymore. I imagine this problem isn’t as big of a deal for very young cancer patients, but as a teenager with cancer it was a big problem for me.

I knew these people, and I thought they knew me, but after chemo I was a different person. I didn’t want to pretend my friends treated me normally anymore. I was constantly isolated and looked at with pity. People treated me like damaged goods or like I was an object to be handled with care and protected at all costs.

Everyone was constantly walking on eggshells when they were around me. They thought I would break and fall into pieces if they mentioned anything about my disease. However, it was this isolation that shaped me into the person I am today.

The summer after I was officially in remission, I went to a camp for cancer patients and survivors. I will admit when I first got there, I couldn’t wait for the week to end fast enough. But by the end of my short time there, I had finally found somewhere I belonged.

Once the school year started, I became even more involved with other survivors and organizations. I have realized these are the people I could call my friends. I no longer belonged to a community where the biggest issues we face are winning football games or getting our crush to talk to us. I had bigger fish to fry!

I belong to a community that works toward a meaningful goal together. One that celebrates my scars rather than hiding from them. Most importantly, I can call this group of people my family. In the past year, I have raised thousands of dollars, shaved my head for cancer and made countless new friends. I made a real change, and I don’t plan on stopping any time soon.

After reading back over this, I realize I finally have a piece of advice I can offer: Find your family. I am your family, we are your family and you should never feel like you are in this alone. There is always hope.

The Mighty is asking the following: What is a part of your or a loved one’s disease, disability or mental illness that no one is aware of? Why is it time to start talking about it? If you’d like to participate, please check out our Submit a Story page for more about our submission guidelines.

When I Asked My Family If They Could Forgive Cancer


It all began with an inspired question we discussed as a family. We were all sitting around the family room of a little apartment provided by St Jude Children’s Research Hospital.

“What are your thoughts on forgiving cancer?” I ask.

My daughter, Katie, age 6, on the floor drawing pictures with crayons splintering from being held too tightly. My son, handsome, bald Scott, age 16, sitting on a chair awkwardly, with a strange medical contraption holding his arm at an uncomfortable angle as it recovers from surgery. Beside Scott is Brianna, his twin. Ever since the words “cancer” and “Scott” entered into the same sentence, she is never far from his side. My son, Adam, age 12, sits more or less upside down on the little sofa with his feet in the air, leaning down to watch Katie draw. I sit comfortably on the hospital bed tucked in the corner of the family room. How strange it looks there, out of place among the normal features of the apartment. Scott is well enough to be out of bed and about, but it is an easy spot.

Katie speaks first, crayon poised above paper as everyone turns to look at me.

“Forgive cancer?”

The same question is reflected on the other kids’ faces. For the past nine months, we’ve heard and seen a lot of people say “Cancer sucks” and “***** cancer.” So the question of forgiving cancer… what could that mean?

I try to help them understand my very strange thought process by sharing a few things I thought cancer had taught me, how I had been changed and made better by cancer.

I trust more deeply.  Because I learned that no matter where life challenges take us, I believe The Lord goes with us. I began to see the Hand of the Lord touching our lives in very small, yet profound, ways. There were little love notes from heaven that reminded me to keep going, keep trusting, keep loving, keep hoping. Cancer might be able to take my son, but it could not take those things from me.

If I were to lose those things, it would be because I chose to lay them down and pick up something else. I could lay down love and choose jealousy and anger. I could lay down trust and choose discouragement.

Have you ever gone to carry in the groceries and your arms are so full? You can’t carry anything else. But you could put down the bread and milk and pick up the eggs.  I could lay down faith and trust and pick up fear. You can’t hold both at once. Cancer and little messages from the Lord taught me to choose the best gifts, leave the ones that won’t make me better and choose wisely.

Cancer will never be sorry for what it’s done. It will never come to me and quietly ask for forgiveness because my son has endured months of chemo because of its presence. It will never say it regrets leaving my son with a scar across his shoulder and down his arm. Cancer will never be sorry for the hundreds of needle sticks and IV poles.

So why forgive something that doesn’t even care?

If I had carried in my arms an overflowing hate for cancer, I don’t think I would’ve been able to hold in my arms the same amount of gratitude and the ability to see the miracles that were woven into every minute. Would I be better or bitter?

Slowly the conversation in a small apartment living room began to change from forgiving cancer to what has cancer given you — how has it changed you?

Scott was the first to answer. “Compassion.” All eyes turned to him and he shifted in his chair to get as comfortable as possible with the huge metal brace. “Cancer changed me to be more compassionate. Now when I walk down the hall, I don’t just see bald kids, wheelchairs, IV poles. I see kids like me. Outside the hospital people stare at me and they think I’m different. I’m just normal.”

If they knew who you were, Scott, the kind of heart that beats underneath the scars across your chest from the surgeries, the kind of courage it takes, they would stare even more than they do now. They wouldn’t be able to take their eyes off you.

Brianna speaks slowly, but her words are sure. I can tell the thought has been on her mind. “Cancer taught me to see things differently.”

I know what she means. There’s something about hard times that makes us fall to our knees, and when we get up again, the world around us has shifted. The little things we never noticed before fill us and heal us. Every moment suddenly could be the last, and if it was…. what am I going to do to make it the best, too?

That night of sitting in an apartment and talking about cancer with new eyes is gone now. The cancer is gone, too, and in its place are a lot of scars on Scott’s body and a lot of lessons learned. We still live moment to moment because there isn’t time to look over our shoulders wondering when or if it will be back. These lessons and so much more were learned in the months of treatment and life.

We are so grateful to St. Jude for providing the best medical treatment available. We worried about enjoying every moment, and St. Jude worried about food, housing and cancer.

Stephanie and her son, Scott

About St. Jude Children’s Research Hospital

St. Jude Children’s Research Hospital is leading the way the world understands, treats and defeats childhood cancer and other life-threatening diseases. It is the only National Cancer Institute-designated Comprehensive Cancer Center devoted solely to children. Treatments invented at St. Jude have helped push the overall childhood cancer survival rate from 20 percent to 80 percent since the hospital opened more than 50 years ago. St. Jude is working to drive the overall survival rate for childhood cancer to 90 percent, and we won’t stop until no child dies from cancer. St. Jude freely shares the discoveries it makes, and every child saved at St. Jude means doctors and scientists worldwide can use that knowledge to save thousands more children. Families never receive a bill from St. Jude for treatment, travel, housing or food – because all a family should worry about is helping their child live.

The Mighty, in partnership with Fuck Cancer, is asking the following: Write a letter to yourself in regards to a cancer diagnosis. What would you say or wish someone had told you? Find out how to email us a story submission here.

Delaware Police Help Victoria Marsh, Girl With Cancer, Meet Taylor Swift


*Update at bottom of story.

One police department is helping to make a teenager’s dreams come true.

Victoria Marsh is a 13-year-old from Delaware who loves Taylor Swift. Victoria also has Down syndrome and was diagnosed with osteosarcoma, a form of bone cancer, in December, according to the Dover Police Department. In February, she had to have the lower half of her left leg amputated.

The Dover Police Department got national attention in January when a video of one of its officers doing a lip sync to Swift’s “Shake It Off” went viral. After Swift saw the video, she sent tickets for her June concert in Philadelphia to the police department, Fox News reported.

Hearing of Victoria’s love for Swift and wanting to lift her spirits, the police department offered her the tickets. However, the teen will be unable to attend because of her cancer treatment.

Now, the police department is trying to get Swift’s attention in the hopes that she’ll meet or FaceTime with Victoria. They helped create the hashtags #TeamVictoria and #SwiftAWish, as well as the video below.

Update: The campaign worked and Saturday night, June 13, Swift met with Victoria in person before her concert at Lincoln Financial Field, according to the Dover Police Department Twitter account.

Real People. Real Stories.

8,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.