My Ewing’s sarcoma journey 🎗
I first started having leg pain in early 2019 and had to stop playing all sports. My diagnoses was Osgood Schlatter’s disease — inflammation of the area just below the knee causing pain. It usually occurs in children who participate in sports that involve running and jumping. Episodes of pain typically last a few weeks to months. I expected the pain would go away on its own but it didn’t. Fast forward to March 2020, along with increasing pain, I noticed the bump on my shinbone was getting larger and I was having more difficulty walking. I dismissed it as Osgood Schlatter’s disease. However, it was not getting better, and in June 2020 I had x-rays. Immediately upon review of the x-rays, my doctor suspected Ewing’s sarcoma but needed further tests before confirming.
Ewing’s sarcoma is a rare bone cancer that typically occurs in children and young adults. It often begins in the legs, bones of the pelvis, and arms. Bone pain, localized swelling, and tenderness are symptoms. I was told to use crutches and not bear weight on the leg as it can easily break. Next came several trips to the hospital. An MRI confirmed I had a tumor in my left leg shinbone that measured 13 cm x 4 cm x 5 cm (that is about 5” long). I was referred to pediatric oncology at Kaiser Oakland. Next involved a blood workup, urine, a Covid test and then I was scheduled for surgery for biopsy. On June 17th I was put under general anesthesia for the biopsy, which took two hours for surgery then another four in recovery. My orthopedic surgeon suspected it was Ewing’s sarcoma but I was told it could take 14 days to get the results. However, since they suspected it would come back positive they proceeded to get me ready for surgery and start treatment. While I waited for the biopsy results, I had a PET scan on June 24th. The PET scan revealed that the cancer had not spread and was found to be only in my leg. On July 1st I had a CT scan and an echocardiogram. That same day the biopsy results came back confirming Ewing’s sarcoma. On July 2nd, I was admitted for surgery to receive a port in my chest. While I was under they did a bone marrow aspiration to check for cancer in my bone marrow, which came back negative. The next day, I started chemotherapy treatments.
I received five types of chemotherapy drugs over a four week cycle for seven months. The first week was a 2-day inpatient round of chemo. They call this VDC-- vincristine, doxorubicin, and cytoxan. The next week was an outpatient injection of vincristine at the clinic. The third week was a long 5-day inpatient chemo of IE—ifosfamide and etoposide, and the fourth week off. Along with the chemo, I received meds to protect my heart and bladder from the poison. I had my vitals and blood checked once or twice a week to make sure my counts were stable. If they weren’t then I would receive a blood transfusion. My treatment plan was 12 weeks of chemo to shrink the tumor, a 10 hour surgery to remove the tumor which took place on September 30, 2020, followed by 14 more weeks of chemo. My last day of treatment was February 16, 2021. I am now CANCER FREE!
Thanks to doctors, nurses, and medical staff, a ton of family, friends, co-workers and total strangers, I made it through. My life is forever changed in so many was—mentally, physically, emotionally and spiritually. #ewingssarcoma #redcross #makeawish #projectspinkwheels #cancer #childhoodcancer # thegreatcyclechallenge #timesquare #billboard #blooddonation #cancersucks #wigsforkids #teenmodel
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