Results tagged “Sarcoma - Soft Tissue - Rhabdomyosarcoma - Childhood”

Mason Macri rhabdomyosarcoma survivor

A little boy with a rare cancer like rhabdomyosarcoma is still a little boy. And like many 3-year-old boys, Mason Macri is fascinated with superheroes. 

That's why his parents tell him that each chemotherapy and proton therapy treatment recharges his superpowers. It works much the same as the spoonful of sugar about which Mary Poppins sings.

"We knew he would have questions about what was happening, and we wanted to say something positive but not lie," says his father Iain Macri. "It's really helped a lot."

Trip to ER reveals rhabdomyosarcoma
Mason, the 1,000th pediatric patient treated at the MD Anderson Proton Therapy Center, has rhabdomyosarcoma of the bladder, a rare soft tissue solid tumor. They are found most often in children and teens and make up about 3 percent of childhood cancers. Some 350 cases of rhabdomyosarcoma are diagnosed each year in the United States.

Roslin Sweat osteosarcoma survivor

By Roslin Sweat

When I was first diagnosed with rhabdomyosarcoma in 1990, I was a 22-year-old college student. 

I woke up one morning and noticed my face was swollen on the left side. The doctor said it was allergies and gave me a prescription. Several days later, my face was still swollen, I had severe headaches, and my left eye was protruding. I saw an optometrist, who scheduled an MRI. 

That's how we figured out a tumor was causing these problems. 

My rhabdomyosarcoma diagnosis 
My doctor referred me to MD Anderson, where I was assigned to Robert Benjamin, M.D. I now call him My Dr. B. He's the best doctor this side of heaven. 

Dr. Benjamin gave me a concrete diagnosis -- ethmoid sinus rhabdomyosarcoma. Though rhabdomyosarcoma is the most common childhood sarcoma, it's rare in adults. At that point, there was no statistic for a survival rate. 

jasoncoxar6.jpgThe mirror is not always a glowing reflection of one's self. For Jason Cox, there was a point when he didn't even recognize himself.

Today, though, his reflection shows a successful attorney, a community volunteer and, most important, a survivor.

Like many childhood cancer survivors, Cox overcame his cancer, but not without some challenges and side effects along the way.

In 1985, at 14, he was diagnosed with rhabdomyosarcoma in his right cheek, a tumor affecting muscles that attach to the bone. After a year of chemotherapy at 
MD Anderson Children's Cancer Hospital, he was declared cancer-free.

But six years later, while attending Texas A&M University, Cox was dealt another blow. His cancer had returned. He endured more chemotherapy and radiation, but his cancer kept coming back.

"I weighed the options of having more recurrences or undergoing a major surgery that would cause some disfiguration to my face," Cox recalls. "The decision made itself."

From Cancer to Kindergarten

By Meghan Campione

joseph.jpgWhen Joseph Campione was born, his parents adoringly held their first child -- a healthy 6-pounder with a head of black hair. But when he was only two weeks old, they were told that a small growth on his bottom that was present at birth and had been thought to be benign was diagnosed as rhabdomyosarcoma, an extremely rare form of muscle cancer. Now, five years later, as Joseph prepares to enter kindergarten, his mother Meghan reflects on the milestone and the emotions that come with it.

Five years ago, an oncologist walked into our hospital room and told my husband and me that our son, Joseph, was born with cancer. Today, we're preparing to send him off to kindergarten and that moment seems like a lifetime ago.
As Joseph meets yet another milestone, I'm left with mixed emotions. Our prayers were answered. We have been blessed with an incredibly wonderful, healthy boy who is ready for school. However, my little baby who needed me to hold his hand, sing to him and assure him that he was "the little engine that could" and he could do anything he put his mind to, is now off to face the world.

He's definitely ready. I'm just not sure that I am.

By Kim Gourley

JordynandKim.jpgIt was Labor Day 2010, and my husband Eric and I took our three kids, Gannon, 4, Jordyn, 3, and Cohen, 1, for an outing in the park. We arrived home in time for lunch and naps.

As I was talking to the kids, I noticed that Jordyn's left eye was slightly turned in. I panicked. Maybe her recent sleepless nights and irritability were more than the night terrors our doctor suggested she was having.

So, I put our daughter in the car and took her to the ER. After begging for a CT scan and getting it, a very solemn-looking doctor walked into our room with results that forever changed our lives: Jordyn had a tumor in her head and neck area called rhabdomyosarcoma, and it was stage IV.

By Mary Brolley, Staff Writer

JakeasSuperman.jpgTwo years after his son Jake's grueling but successful treatment for childhood cancer, powerful feelings are still close to the surface for Joe C. of McLean, Va.

Chief among them: shock, fear, gratitude and relief.

Just after Jake's third birthday in early 2008, the little boy was diagnosed with rhabdomyosarcoma, a soft tissue cancer in children.

Tests revealed that the tumor was attached to his bladder, which explained why urination had become so difficult for him.

The tumor's size and location -- and Jake's age -- made choosing an effective course of treatment especially complicated.

Composed of cells that normally develop into skeletal muscles, rhabdomyosarcomas occur most often in children and teens. They represent about 3% of all childhood cancers, and approximately 350 new cases of rhabdomyosarcoma occur each year in the United States.

Proton therapy offers 'remarkable chance'
After consulting with experts at a local hospital in Virginia and getting a second opinion from another team at Johns Hopkins Hospital in Baltimore, Md., Joe and his wife Amy elected to augment Jake's chemotherapy treatment with an emerging, though lesser-known, form of radiation called proton beam therapy.

Because their bodies are still developing, children may have more serious long-term side effects from radiation treatment -- intellectual impairment, decreased bone and soft tissue growth, hormonal deficiencies and the development of second tumors.

But with its capability to precisely deliver high doses of radiation to the tumor with little damage to surrounding normal tissue, proton beam therapy is increasingly being used to treat cancer in pediatric patients.

Joe and Amy were convinced that chemotherapy and proton therapy offered the best chance to cure this difficult cancer, whose location near Jake's developing organs made its removal tricky and dangerous.

"Our radiation oncologist at Johns Hopkins felt that the combination of chemotherapy and proton therapy offered Jake 'a remarkable chance' of eliminating the tumor," he recalls.

But where to go for this therapy?

"He told us proton beam therapy is available in just five places in the country (at the time). And due to its wealth of experience in treating children, he recommended MD Anderson," he says.

The couple met a number of physicians and medical professionals who would become their partners in returning Jake to health. Among them was Anita Mahajan, M.D., associate professor in MD Anderson's Department of Radiation Oncology. Because of her expertise in treating pediatric tumors, she led Jake's care team.

Cancer treatment for a young child requires special accommodations. This is especially true for proton therapy, whose precision is the key to its success in killing cancerous tissue while sparing healthy tissue. Children have a harder time holding still, so those under age 8 require sedation before treatment. 

Mahajan and Vivian Porche, M.D., professor in the Department of Anesthesiology and Perioperative Medicine, were determined to make it as easy and interactive as possible for Jake.

Porche taught him how to "put himself to sleep" for the treatments, allowing him to push the button that started the anesthesia. Then she and nurse anesthetist Cynthia Williams sang him lullabies until he fell asleep.

Joe, who usually accompanied Jake to his proton treatments because his wife was home in Virginia with their younger child, still gets choked up when he remembers Porche's promise to him: "I'm your baby's mama when your baby's mama isn't here."

During their five weeks in Houston, the family stayed in the Ronald McDonald House. This made it easy when Amy and baby Lucy visited Joe and Jake every weekend. "We were treated like royalty," he says.

A healthy, happy 5-year-old

Two years later, Jake is a healthy, happy 5-year-old. Of all his father's memories about the months of Jake's treatment, two stand out.

Once, after a day when Jake's chemotherapy caused him to vomit repeatedly, 3-year-old Jake looked thoughtfully at his mom as she tucked him in for a nap, and asked, "Mommy, are you proud of me?"

In the other, young Jake responded defiantly to an older child who teased him about having lost his hair. "Jake reached up and touched his remaining hair and said, 'I have hair!' Joe recalls. "The kid said he didn't, and Jake said, 'Yes, I do!.' Eventually, he wore the kid down, and he walked away.

"He's just a tough little kid -- as are all these kids."

Related article:
Q&A: Proton Therapy for Pediatric Patients

MD Anderson resources:
Children's Cancer Hospital at MD Anderson

Childhood rhabdomyosarcoma

MD Anderson Proton therapy center

Anita Mahajan, M.D.

Vivian Porsche, M.D.

Additional resources:
The National Association for Proton Therapy




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