Guest Blog by: Aimee Formo

   Ewings sarcoma, also abbreviated EWS,  is an aggressive type of cancer that begins as the growth of cells in bones and soft tissue around the bones. While mainly occurring in children and young adults, anyone can be diagnosed with this type of sarcoma. Most often this type is found in the leg bones and the pelvis, but it can happen in any bone and is the second most common type of bone cancer, after osteosarcoma [HERE].

   Aimee, Leanor’s mom shares, “Lea is something of an outlier– Ewings is more common in boys and many are teens at diagnosis, and it tends to be more prevalent in people of European descent. She was 7 when she was diagnosed and we checked multiple race/ethnicity boxes.” According to the NIH the male to female ratio for Ewings diagnosis is 3 to 1. [Reference HERE].

   Aimee continues, “Ewings is associated with a translocation of chromosomes 11 and 22. Like many sarcomas, what causes the translocation is a mystery.  It’s genetic, but not inherited.”  The NIH also states, ‘More chromosomal translocations and complex gene rearrangements have also been reported in the literature. However, whether they are associated with more aggressive tumor features is unclear.’

   When Lea was first diagnosed, her mom Aimee, remembers, “Her diagnosis story is probably best classified as ‘trust your gut and ask for the extra tests’.  We were very lucky to have a pediatrician who listens to a mother’s intuition and isn’t shy about making referrals.”

How does Ewings Sarcoma present?

   Local pain, swelling, or  stiffness, often for a few weeks or months. It is reported by the NIH that ‘intermittent pain that worsens at night’ affects up to 50% of those diagnosed with Ewings and ‘systemic symptoms such as fever and weight loss may indicate metastatic disease, for which 20% have pleura or lung involvement.’

    Leanor experienced ‘growing pains’ at night, describing similar pain to what her older sister complained of at the same age.  This was all in the fall of 2020, and we were so happy to see negative COVID tests, the sporadic fevers weren’t alarming.  When she fell and bruised her shin at recess” and experienced pain that was very outsized for the injury, we got x-rays and referrals to specialists that revealed her tumor. 

Without that injury, it’s likely her cancer would have gone undiagnosed for months or even years!”

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How is Leanor doing today?

“She’s currently NED (no evidence of disease for 2.5 years now!) According to her latest report from the orthopedic surgeon, when Leanor recently got to see her fully integrated bone graft on x-ray, he remarked that she is now at the point where it’s hard to tell why she even has the titanium plate anymore. The fibula piece has now basically become tibia tissue. If the plates weren’t there and a few dozen tiny titanium clips scattered across the grafted areas from the vascular reconstruction, he says it would just look like she had a bad broken bone in the past on the x-ray.

    Lea is a bright and intelligent, dedicated Girl Scout who loves pugs, reading manga, and dancing!She volunteers regularly with local nonprofit Paws & Think, helping at therapy skills training sessions and evaluations.  Pet therapy was a bright spot in her treatment experience and she loves meeting new therapy teams and knowing that her new friends will help other kids! She recently had a ‘Dress your future career day‘ at school.

Lea’s aspiration?

    “Whatever career will ensure my grumble of pugs maintain the lifestyle they’re accustomed to.”  

WE LOVE THESE KIND OF REPORTS!