The youngest of six children, Emily was no different than her siblings. She weighed 8 lbs. 15 oz. at birth and always was a chunk. At some point her belly started looking big, but what baby doesn’t have a belly? It did look a little extra round on sides though, so I scheduled her 1 year checkup a month early.
At the well-baby checkup the doctor thought it did look a little distended and he recommended an ultrasound to check it out. We went the next week after Christmas. The ultrasound showed a mass on her liver. The best hospital was over an hour away. The doctors wouldn’t really look at us when they talked. From her being a normal healthy baby to this. They would not guarantee that she would make it to a surgery date of January 5. The team of doctors that they wanted present were out for the holidays. On New Years Day she had her first central line put in and bone marrow tested. They didn’t biopsy the tumor because it already had hemorrhages on it. Her siblings were ages 11, 8, 6, 4, and 2 1/2. I didn’t know how we were going to get through all this.
Surgery went great! They removed a 2 1/2 pound tumor, 20 percent of her liver, and her gallbladder. The incision on her tummy was so long, it looked like they almost cut her in half. We still didn’t know what we were dealing with as the tumor had not yet been diagnosed. It was sent out to Bethesda and we were to come back on January 19 (her first birthday) for the results. We went home on January 11. Her oncologist called every day to see how she was doing and to make sure she was eating and putting on weight.
The results were back on January 19 – Undifferentiated Embryonal Sarcoma of the liver, a rare cancer. Only 69 children to date had been diagnosed with it the United States and only 9 percent of the children had survived. WOW! One very good thing was that the cancer they could find was removed — a huge plus.
Next, came 36 weeks of aggressive chemo. She started on January 26. She got a new central line, as the one put in 26 days earlier wasn’t working. The first weeks of chemo were inpatient. Then we would go two weeks for outpatient chemo and then the 3rd week inpatient, which was usually 36 to 48 hours. We did that for 36 weeks. We had a few central line infections and shingles — that was the worst! Over all, she was only hospitalized for 62 days, some of which were scheduled — not bad at all. Her oncologist looked at her one day during treatment and said she was a picture of health. She wasn’t supposed to grow much or learn to walk, but she just thrived through it all.
She has been cancer-free for 15 years now! She does have a few minor issues like migraines, Raynauds, tummy issues, and autoimmune or nerve issues that we are currently trying to figure out. I’ll take those minor things. She is a wonderful, beautiful 16-year-old!
If you or a loved one has been impacted by sarcoma cancer, we encourage you to share your story. Sharing your story can be such an inspiration to others who are dealing with sarcoma in their own life and remind us all of the urgency to find better treatments in order to make an impact on the devastation that sarcoma cancer brings. Let your experiences help others become involved with raising awareness!