alveolar rhabdomyosarcoma

Scott Diede, M.D., Ph.D., a past St. Baldrick’s Scholar, explains alveolar rhabdomyosarcoma symptoms, treatment options, and research opportunities.

What is alveolar rhabdomyosarcoma?

There are two main types of pediatric rhabdomyosarcoma: embryonal rhabdomyosarcoma and alveolar rhabdomyosarcoma.

• Embryonal rhabdomyosarcoma (ERMS) occurs most often in children under 10 years old and is found in the head, neck, urinary tract, or reproductive organs. It is the most common type.
• Alveolar rhabdomyosarcoma (ARMS) is more aggressive, occurs more commonly in teens or young adults, and usually starts in the torso, arms, or legs.

Rhabdomyosarcoma is the most common soft tissue cancer in children, with approximately 350 new cases each year in the United States.

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Taosheng Chen, Ph.D., a St. Baldrick’s Research Grant recipient at St. Jude Children’s Research Hospital, has made noteworthy progress in his research that resulted in three scholarly journal publications. He is investigating the genetic mechanisms of alveolar rhabdomyosarcoma (aRMS), an aggressive soft-tissue cancer that primarily affects adolescents and young adults.

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by John Paganelli, dad to Jordan

Jordan, I feel your energy on this day — the one they call “Father’s Day.” For me, each year, it is a day spent reflecting on what I have learned and how my life has been enriched from the unique privilege of being your dad.

In my mind, Father’s Day is not about ME…it’s about YOU.

Indeed, it’s about the children in our lives that enlighten and inspire us to peel back the painful layers of burden and reality so as to more clearly expose the somewhat hidden meanings and lessons of life. These lessons often come at a seemingly unfair price — that of sadness, disappointment, and relentless emotional pain. However, this unwelcome “price” quickly shrinks to insignificance as we reflect on the pure joy that comes with the privilege of being the parent of such a remarkable human being.

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For the third year in a row, players on the El Paso Rhinos Ice Hockey Team in El Paso, Texas, gathered to participate in a head-shaving event, standing in solidarity with the thousands of children who are in treatment for cancer.

This year, they honored one of their own.

Katie, a 15-year-old Rhino bantam player, was diagnosed last year with alveolar rhabdomysarcoma, a type of childhood cancer.

Katie first noticed a bump on her leg while playing hockey. A month later, the bump had gotten bigger, and her parents took her to the doctor. A tumor was discovered in her leg, and a CT scan revealed the cancer in her leg, hip, shoulder, and spine.

“As a team and as an organization, the St. Baldrick’s event really brings the Rhino family closer together,” says Tom Herman, Director of Youth Hockey and assistant coach for the Rhinos.

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Motherhood is a sweet privilege.

Having a child with cancer is a cruel torture.

My daily reality: Being “that” mother who lost her child to cancer.

Four years ago, during the latter stages of Jordan’s cancer treatments for alveolar rhabdomyosarcoma, our family was invited to be the PGA’s special guests at “The Players” Championship Golf Tournament in Jacksonville, Florida.

That would be my last Mother’s Day with Jordan.

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Happy Valentine’s Day Jordan!

We cherish the memory of you in our lives. Indeed, we deeply miss the warmth of your beautiful smile that magically brought a sense of purpose and harmony to each and every day. Thoughts of you gently capture and fill our souls as we navigate an empty world without you in it. You were, and continue to be, such a remarkable young man—unique and tender in so many ways. You selflessly taught us more during your struggle and in your death than we could have ever taught you in life; and, your courageous journey continues to serve as a beacon of hope and inspiration for countless others as they walk their own paths of challenge and adversity. The calm and humble strength of your perpetual spirit radiates positive energy and love while showering the world with the light of renewed purpose and resolve.

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When he was 16, Jordan was diagnosed with a very aggressive soft-tissue sarcoma. The doctor said, “We have your diagnosis. It’s alveolar rhabdomyosarcoma, and you will most likely not survive.” Jordan responded with strength and a sense of calm. He was the very definition of grace, courage and strength. After 23 months of treatment, Jordan passed away five days before his 18th birthday.

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