Leanor was diagnosed in December of 2020 with Ewing Sarcoma.
She complained of pain in her leg at night for a few weeks, which we all wrote off as growing pain. Leanor was actively engaged in ballet classes and tends to favor her left side, so we really didn’t think anything of the fact that her left calf muscle was getting larger than the right. Just before Thanksgiving break, she fell at school while playing with parachutes, and over the course of the next few days seemed to have an outsized amount of pain relative to the injury. She didn’t have any scrapes or bruises but began limping, toe-walking, and declining opportunities to play active games outside with her sister. The last day before break, she got off of the school bus in tears and refused to walk once she was safely at the end of our driveway.
That’s when it became clear to us that this wasn’t usual. Of course, with the holiday, we couldn’t get in to see her pediatrician until the following week – he couldn’t diagnose anything and decided to order x-rays to rule out hairline fracture, compartment syndrome, or other things that matched some, but not all, of her symptoms. Initial x-rays weren’t clear, so different angles were ordered, and by the beginning of December, we’d been referred to an orthopedic surgeon. Within an hour of having x-rays with OrthoIndy, we got a call saying Leanor was going to be scheduled for the next available MRI appointment. She had a tumor the size of mandarin orange in her lower leg.
Leanor had a port placed at the start of her journey, and six planned hospital stays for chemotherapy prior to her resection. The affected portion of her tibia was removed, and a section of the fibula from her healthy leg was removed and grafted in. She took most of this in stride but really struggled with the epidural and catheter the surgery required. She consistently failed to meet counts for chemo, so her treatment protocol and dosing were adjusted after her surgery – she is preparing for her 7th of 8 cycles of post-surgery chemotherapy. She’s also had a number of unplanned hospital admissions for fever and neutropenia.
Leanor is re-learning the basics of walking. Following her resection, she was in a full leg cast for multiple months and confined to a wheelchair. She’s currently permitted to bear about 25% of her weight on her left leg and uses a walker in combination with her wheelchair to get around.
Leanor and her big sister Dot are extremely close, but they can’t be physically close while Dot is going to school in person without extra precautions- she wears a mask at home, and their weekend “sister sleepover” has been on a hiatus for months. Navigating medical appointments and physical therapy appointments, and accompanying Leanor during all of her hospitalizations while maintaining full-time employment for both my husband and me has meant we get few opportunities for family time. I work remotely from the hospital or from my home office, sometimes until 9 or 10 pm, when a day is particularly complicated.
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