“Rhabdomyosarcoma is rare, with only about 500 total diagnoses in the US each year and only a small percentage of those above the age of 18.  I immediately had a bad feeling.” – Robyn Spoon

Diagnosis: ssRMS with FUS-TFCP2 Rhabdomyosarcoma

Age: 21

Location: Left Nostril

Symptom(s): small painless lump next to nostril

   From the time the lump became obvious to the official diagnosis was about ten weeks. He was first treated with a two-week course of antibiotics for a possible infection. When that had no impact, the doctor suggested a second round.  Justin’s mom urged him to seek a CT at that point. COVID was in full swing, so getting a referral was difficult. Justin went to an emergency clinic and was then referred for CT. He was then assigned an ENT, who did a biopsy of the lump. It took five weeks after the biopsy to get the diagnosis, which was originally labeled as Stage I Group III Intermediate Risk ERMS, but after genomics the ssRMS with FUS-TFCP2 Rhabdomyosarcoma was the final diagnosis. 

    “Together we strive to advocate for improved treatments and targeted therapies, aiming to shape a brighter and healthier future for our children.” – Amber Friesen

Diagnosis: Stage 3 Alveolar Rhabdomyosarcoma

Age: 9

Location: Hand, on the side

Symptoms: Hard lump, slowly growing

    Mom, Amber noticed a hard lump that slowly growing on the side of her daughter, Taylor’s, hand, on the pinky side. Made an appointment on January 16th, 2020 and was told it was a ganglion cyst, but was referred to a pediatric orthopedic surgeon for February 13th, almost a month later. That day they did an MRI and discovered it was not indeed a cyst, but needed to be removed immediately. Surgery for Taylor was scheduled for the following Monday, four days later. The initial report came in a day after the surgery to confirm that it was malignant and scans for more widespread disease would follow the next day. By the 27th of February Taylor had her port placed and her first chemotherapy, VAC, began March 6th for what they now knew was Stage 3 Alveolar Rhabdomyosarcoma.

    “One eye was larger than the other. At first I thought I was crazy, until it continued to grow and one eye started bulging.” – Jessica Messer

Diagnosis: unknown

between Low Risk & Intermediate risk Orbital Embryonal Rhabdomyosarcoma, 

Age: 17 months

Location: Orbital (eye)

Symptoms: One eye was larger than the other, followed by unexplained nausea, vomiting,

pain, and constant ‘cold symptoms’

    When the first symptoms appeared, the one eye larger than the other, followed by unexplained nausea, vomiting, pain and constant ‘cold symptoms’ they were told, after visiting the pediatrician, we would be waiting for an appointment with ophthalmology which would have taken several weeks. Bennett’s parents finally had enough and took him in to the ED to be seen. A head CT confirmed a mass in his orbit. The family was sent to a hospital in Miami for biopsy. Once they arrived they sent them home and told them it was just a cyst. The mass continued to grow and Jessica took Bennett back a week later. They finally biopsied and confirmed it was Rhabdomyosarcoma. It was almost a month before they reached a diagnosis.

—————————————————————

“Over the course of 12 days Ellie kept spiking fevers, which would disappear without medicine and then return.”

– Amy

Diagnosis: Stage 3 Embryonal Rhabdomyosarcoma

Age: 18 months

Location: Abdomen

Symptom: Unexplained fevers that came and went, crying during diaper chagnes; eventually distended belly

    Over the course of 12 days (which included Christmas and New Years), Ellie kept spiking fevers, which would disappear without medicine and then return. After her belly became distended, on January 7, 2022 her parents took her to the ER. Within 6 hours they knew she had a malignant tumor, and the next morning, she had surgery to collect a biopsy and put in a chemo port. Ellie’s tumor was teh size of a baseball, and it had burst, causing fevers. The biopsy results returned on January 13th–Rhabdomyosarcoma (RMS). Ellie was still inpatient and they started her on chemotherapy the same day. A PET scan confirmed no metastasis. RMS subtype and official diagnosis arrived a few days later–Stage 3 embryonal rhabdomyosarcoma (ERMS).

__________________________________

    “We went from living a normal life to chaos 24/7.”

                                                         – Natalie Steuer

Diagnosis: Stage 4 Alveolar Rhabdomyosarcoma

Age: 3

Location: Calf Muscle

Symptom: Hard lump, complained it hurt

    Elevate kid Sage, complained of a painful calf, mom, Natalie found a hard lump there and called on a Friday to get an appointment that was scheduled for the following Monday.  They determined by MRI at the local hospital that it was a sarcoma of some kind and were being sent to a children’s hospital, less than a week later, to find out it was Rhabdomyosarcoma.

    “I took Isaiah to the urgent care because he had back pain and couldn’t walk after a fall. They found he had a compression fracture. I knew at that moment this couldn’t be good- kids don’t just break their back.”

– Ayla Benavides

Diagnosis: Stage 4 Embryonal Rhabdomyosarcoma with FGFR fusion

Age: 4

Location: Spine, both Femurs, Pelvis, Rib area

Symptom: back pain and couldn’t walk after falling

    Elevate kid Isaiah, ‘Zay’, We were sent to the children’s hospital  for an MRI, where they found multiple spots suspicious for malignancy in his spine, both femurs, pelvis and rib area. It took 12 weeks for them to confirm that it was a cancer, Rhabdomyosarcoma, and at that point, it had spread so rapidly.

    “Tuesday night, we went to dinner as a family, with a happy, laughing 3-year-old boy. At 9:04 am the next morning, our worlds were rocked when we heard what every parent prays they never hear, ‘Your child has cancer.’ “

– Zac Zopp

Diagnosis:  Rhabdomyosarcoma 

Age: 3

Location: Prostate

Symptom: Constipated, or appearance of

   After what appeared to be a trip to the ER with constipation a scan revealed that a large tumor was growing in 3 year old Jagger’s prostate. Clearer MRI imaging was ordered and a bone marrow aspiration to determine if the tumor had spread. A biopsy and a port was placed for chemotherapy by Sunday. Confirmation that Jagger had Rhabdomyosarcoma was affirmed within the week.

    “Anytime we can help create awareness or gain support- we are in! “

– Sonya Lynn McKenna

 Diagnosis:  Stage 3, Intermediate Risk Rhabdomyosarcoma 

Age: 2

Location: Gluteal region

Symptom: Left side of her gluteus was getting firm

    Evangeline first began experiencing what was a hardness in the left side of her gluteus (butt). After the pediatrician ‘blew them off’, she started to develop a lump on her labia. Her family brought her to the ER on a Monday and they gave her an antibiotic for possible abscess. On Wednesday, she was in pain and they went to the pediatric ER. That night they were told that they believed Evangeline had cancer. By Friday she was brought in for a biopsy and said they would be able to tell immediately if it was cancer. She returned to the room after surgery with a port already in place to begin treating what they had then confirmed to be rhabdomyosarcoma.

————————–

We appreciate these incredible families from our Elevate community opening up about how they first discovered their child’s rhabdomyosarcoma diagnosis. Their stories shed light on the early signs, challenges, variation on presentation, and emotinal rollercoaster that was just beginning when they heard the words, “your child has cancer.”  We appreciate the opportunity to share these life changing moments to spread awareness, provide perspective and education surrounding these moments far too many families will face.

    Elevate Childhood Cancer Research and Advocacy is on a mission to dramatically improve  and save the lives of those diagnosed with childhood cancer, like rhabdomyosarcoma. From diagnosis, through treatment, on to survivorship, and in some cases, the end of a child’s life.  Your support is critical.  We are not only working to raise money to directly invest in innovative treatments, but we also reach newly diagnosed families with high quality information regarding treatment options and work to break down age-old barriers among the stakeholders charged with finding and developing new options. The impact advocacy has on academic research, biotech, regulatory, pharmaceutical development, and even the childhood advocacy community itself is immense and when you become a part of our Elevate community you become part of the difference.

You don’t have to be a childhood cancer family to join us in advocating, fundraising, donating or simply sharing our message- everyone is welcome and appreciated! 

    Elevate Rhabdo is a part of the advocacy committee within Elevate Childhood Cancer Research and Advocacy with two main priorities:

1. Create useful educational materials and programs to help

families better advocate within the medical system on behalf of their child 

AND

2. Enable patient/advocates and caregivers (PACs) to instigate improvements

in therapy development for children diagnosed with cancer

    Elevate is reimagining treatment for those diagnosed with childhood cancer, like Rhabdomyosarcoma and we need your help.  Our efforts will collectively build a brighter and healthier future for our children by building a roadmap to discover more effective, less harsh treatments.