Meet: Emily, Angel (Forever 20), Ewing Sarcoma

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“On February 2018, our family’s lives was changed forever. Emily had not been feeling well since January, she went to urgent care and they diagnosed her with pneumonia. She was given antibiotics, but still was not feeling well. She noticed a lump on her left side and that’s when she decided to go and get it checked out further, as she was also having pain and trouble taking deep breaths. Doctors completed a second scan. This scan showed she had a tumor, as the first scan missed it, or it was not visible. I recall Emily texting me letting me know that she was getting a scan, followed by, “Mom they think I have cancer”.

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My heart dropped, thinking maybe she misunderstood the doctor and I should have gone with her to that appointment. Emily was scheduled for another scan and a biopsy the following day to determine the type of cancer she had. Just waiting for her results was devasting. Finally, her doctor called and advised us that Emily had Ewing’s Sarcoma cancer.  At her appointment with the pediatric oncologist, we learned that Ewing’s Sarcoma is a childhood cancer. This cancer is found in the bones or tissues of young children and teens.  Her oncologist went over the protocol of treatment and possibility of surgery to remove the tumor. The first step was to have her undergo a bone marrow biopsy to determine staging. The biopsy confirmed Emily had a tissue tumor and it could be removed, but she needed chemo to reduce the size of the tumor. At the beginning, everything was moving smoothly, doctors were moving rapidly to discuss and treat her cancer, but this came to a stop when they determined Emily needed to be treated by an adult oncologist. Emily was 18 ½ years old at the time, she was no longer considered a child. The pediatric oncologist referred Emily to another oncologist, who had no experience in treating a patient with Ewing’s Sarcoma. Her new doctor assured us she would be working with the prior doctor to treat Emily’s cancer. 

The protocol was to start aggressive chemotherapy on Emily. She would have 6 cycles of chemo, and after chemo they would do a scan to determine if chemo was working. This would be the deciding factor on her having surgery to remove the tumor. 

This seemed to be a lot for an 18-year-old girl, who had just graduated from High School. She had just enrolled in college and started working. Her life was placed on hold. How could this be happening to a healthy athletic young girl? who had been playing soccer since she was 4 years old. 

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I asked myself why her and not me! I thought about how I was going to break the news to her brother and sister. At the time, they only knew Emily was not feeling well. The news and uncertainty was overwhelming, and I remember going into the closet crying and praying for strength. 

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In the first round, Emily went through 6 cycles of Chemotherapy and two major surgeries. Things did not run smoothly. Emily had blood clots after surgery, and her heart rate would decrease. 

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The second round included 8 cycles of chemotherapy and 30 rounds of radiation.

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Emily completed her treatment in mid-October of 2018. She was happy to start remission and do what normal 19-years old do. Emily was ready to take her life off hold and enroll in college and start looking for a new job. 

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Unfortunately, as Emily went for her follow up, her scan revealed a new tumor around the same area. Emily had relapsed. There was no protocol for a patient with Ewing Sarcoma who relapsed.  Emily was referred to Children’s Hospital of L.A to meet with a doctor who was doing clinical trial treatments on patients with Ewing’s Sarcoma. After completing 2 cycles of clinical treatments, the doctor determined Emily was not responding to the treatment. We were advised to go back to her oncologist and continue with chemotherapy to prevent the tumor from growing. We were told that Emily’s tumors were now growing in her lymph nodes as well. Chemotherapy would only prolong her life. 

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Emily took the news hard, she felt she was missing out on life. She would see friends post on social media going about their life, while she was stuck in a hospital. Many friends left, few stuck by her side through her difficult times. 

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Emily’s oncologist did not want to give up on her, she reached out to doctors in UCLA to see if Emily would be a candidate for another clinical trial treatment. Emily hoped that this treatment would work, and she would beat this cancer. Two months into her treatment we thought all was going well, but Emily’s pain was getting worse and we saw her health decline. At her Chemo appointments her doctor decided not to treat Emily as she had lost weight and her blood count was low. The following day she was admitted to the hospital for a blood transfusion and a scan. Emily’s oncologist came into the room and asked to speak to me in private.

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I recall looking at her and knowing something was wrong. She proceeded to tell me “There is nothing we can do for Emily; her body is not responding to any of the treatments”. I broke down in tears, I asked her how long she thought Emily had to live. Her response was “I don’t know”. I asked her not to tell Emily. I went into the restroom to compose myself before going back to her room. The doctors discussed hospice facility, which I declined. Due to her pain being so intense, they would not release her until they found a protocol to manage her pain.

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We took Emily home, as she hated hospitals and we knew she would be more comfortable at home in her own room. Emily gained her angel wings on September 14, 2019, just 10 days after turning 20.

 

Emily, through all that she encountered, always had a smile in her face and never complained. She knew she was a warrior, and she named herself “Sunflower Warrior”. 

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We need a cure for Ewing’s Sarcoma and all childhood cancers. Children should never have to endure this horrible disease.”

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