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.
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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.
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.
Ambassador Luke celebrates $7 Million raised for childhood cancer research
When we asked 2013 St. Baldrick’s Ambassador Luke Fochtman what he wanted to say to all the amazing volunteers out there helping to raise money to help kids just like him live long and healthy lives, he replied with, “Thanks for giving me the chance to build more Legos!”
Thank you, Luke, we couldn’t have said it better!
At just 3 years old, Luke was diagnosed with stage IV embryonal rhabdomyosarcoma, a rare type of childhood cancer that affects the muscles. He endured nearly 70 weeks of aggressive treatments — including multiple rounds of chemotherapy, daily radiation — and suffered through many central line infections. Through it all, Luke remained positive and strong.
Luke’s mom, Monica, says:
Diagnosed with stage 4 embryonal rhabdomyosarcoma, cancer of the connective tissues, just five days after his third birthday, Luke endured 70 weeks of treatment – multiple rounds of chemotherapy, six weeks of daily radiation and many central line infections. “The amazing part is that Luke never said no to us. Not once, not ever,” his mom, Monica, recalls. He just fought the cancer. Now, two years off-treatment, he remains cancer free.