jordan

Jeremy Edwards moved from Maryland to Hawaii in 2010. When he learned Hawaii had never had a St. Baldrick’s event, he decided to do something about it. Read on to learn more about Hawaii’s first St. Baldrick’s event, the man behind its success, and the reason he keeps it going every year.

As a pediatric oncologist, Jeremy sees the effects of cancer on kids and their families, and he understands the power of standing — and shaving — in solidarity.

Read more »

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.

Read more »

Scott Diede, M.D., Ph.D., a St. Baldrick’s Scholar at Fred Hutchinson Cancer Research Center in Seattle, Washington, 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.

Read more »

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.

Read more »

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.

Read more »

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.

Read more »