What is embryonal rhabdomyosarcoma?
Embryonal rhabdomyosarcoma is a malignant soft tissue tumor that is formed from embryonic skeletal muscle tissue, the type of tissue that grows into skeletal muscles.
When we think about skeletal muscles, we might first think of biceps or hamstrings, but embryonal rhabdomyosarcoma doesn’t usually start in the arms or legs. Most often, these tumors are seen in the head or neck, bladder, or reproductive organs.
Becky’s hair was a source of comfort for her son, Jack, when he was in treatment for childhood cancer. This Sunday, she’s shaving her head to honor his memory and raise money for childhood cancer research. Donate on her page.
Becky is shaving her head for St. Baldrick’s in memory of her son, Jack.
I remember his cheeks puffing out so we jokingly called him our little bulldog. And the name was fitting. He was tough right from the start.
When Jack was 2, doctors found a tumor behind his throat. We were shocked to learn it was embryonal rhabdomyosarcoma, a type of cancer in children.
One year ago today, my husband and I sat in a waiting room while a surgeon sliced into the right side of Anneliese’s head and scraped out a small piece of tissue. He removed some from her auditory canal. He made a frozen slide. He stitched her back up. And then he approached us.
I knew. I knew the minute I saw his face that it wasn’t good. I remember his voice as he said, “It looks like something called rhabdomyosarcoma.”
I remember my heart pounding, my husband and I searching each other’s eyes. I remember thinking, “You need to hear what he has to say. This is important, and you’re the one who understands the science jargon. Listen now. Cry later.”
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Luke (left) is one of five St. Baldrick’s Ambassadors. This year marks five years since his childhood cancer diagnosis.
Many of my memories of diagnosis day are crystal clear: the emergency ultrasound and MRI, the green sweater I was wearing, meeting the oncology fellow who would be with us throughout Luke’s journey, signing paperwork in a corner of an examination room while my husband and Luke played in the waiting room, driving home in the dark, the deafening silence.
Connor (left) was only 10 months old when his brother, Luke (right), was diagnosed with childhood cancer. Monica, their mom, says Connor is “empathetic, kind, tender, and loving.”
September is childhood cancer awareness month, symbolized by a gold ribbon. For families like ours and siblings like you, every month is childhood cancer awareness month. It never leaves us. It never will.
I have thought about you this entire month and what it must be like for you to be the sibling of a childhood cancer survivor, to have the spotlight (almost) always on your older brother, for something that was really hard and beyond anyone’s control.
Vinny was diagnosed with rhabdomyosarcoma at the age of 4. “Cancer didn’t define Vinny,” says his mom, Sarah. Vinny passed away in February 2013 after a five-year battle with cancer.
After several cleft-related surgeries throughout his first few years of life, Vinny was diagnosed with a rare childhood cancer called embryonal rhabdomyosarcoma on February 15, 2008. He was 4 years old.
Being in the cancer world taught Vinny compassion, to never take the little things for granted, to say “I love you” when you mean it, and to never be afraid to question everything. But cancer didn’t define Vinny. His contagious personality, his pranking, his love of life and love of people defined him.
Anneliese was diagnosed with rhabdomyosarcoma, a type of childhood cancer, earlier this year.
I couldn’t agree more. To be quite frank, I never thought much about pediatric cancer. Not until February 7, 2013, when a very kind surgeon entered the waiting room and said the words that shattered my world and shook my faith to the core:
“It looks like rhabdomyosarcoma.”
At that point, I was not sure what type of cancer that was, but I knew that my 4-year-old baby girl, Anneliese Faith, was about to embark on what is undoubtedly one of the scariest journeys a family can face.
Diana Liang photographed St. Baldrick’s Ambassador Luke and his family at Lake Michigan in 2012. You can see more of Diana’s work at www.dianaliangphotography.com.
Do you think you have a lot going on in your life? Perhaps you are a parent. Maybe you have a lot going on at work or you have a business you’re giving every bit of yourself to. You could be working on a new career. Maybe you are doing all of these things at the same time.
Most of us have (or think we have) a lot going on in our lives. Hopefully whatever it is that you are focusing on in your life right now is something that matters and something that makes you happy.
Sometimes, life hits us hard on top of everything that we have going on. And. It. Hurts. Bad. The most important thing is how we decide to use that, what we get out of it, and what we decide to do.
1. He kisses us every night.
2. He is a great man!
3. He taught us how to fish.
4. He helps us with our homework.
When he was 3 years old, Luke, one of five St. Baldrick’s Ambassadors in 2013, was diagnosed with embryonal rhabdomyosarcoma, a type of childhood cancer in the connective tissues. Luke, now 7, has been off treatment and cancer free for over 2 years.
Luke’s mom, Monica, shares the story of Luke’s most recent scans.
As part of Luke’s off-treatment protocol for pediatric cancer, he undergoes regular MRIs of his abdomen and pelvis. Weeks before the procedure, we talk with him about it and give him the option of “sleepy medicine” or no “sleepy medicine.” The procedure takes about 90 minutes from start to finish. Although our facility is equipped with technology to distract him from the noise of the MRI, he opts to take the medicine. This involves going under anesthesia for the procedure. As we talk about what this means, Luke says to us, “I wish I just never had cancer in the first place.” He doesn’t say anything after that. Just matter-of-factly puts it out there.
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