We would like to introduce you to 13-year-old Tatum and her mom Nicole. Tatum is a Ewing Sarcoma and MDS (Bone Marrow failure brought on by the initial Ewing Sarcoma treatment) survivor. Tatum is a very inspirational and brave young lady.
“Tatum was diagnosed with Ewing Sarcoma in May 2016. She was 10 years old. In early April, she had started to complain about pain in her left thigh. She was playing Lacrosse for SYA and participating in a cheerleading club at school, so doctors initially diagnosed it as a hamstring injury. The pediatrician said to rest for two weeks and to see an orthopedist if it continued to hurt. During those two weeks, the pain would be okay at times and would get worse at night which I later learned was common with Ewing Sarcoma. She would go to bed and a few hours later she would be in tears, asking to use the heating pad. Even on the days when the pain was ok, she would be exhausted from being up all night, so she missed almost a full week of school.
She started to complain that the pain was running down her leg and feeling like it was on fire. It sounded like sciatic pain, so we decided to go to a chiropractor to see if they could help with the pain. After the first visit she seemed a little bit better, but during her second visit Tatum started crying hysterically. The chiropractor said that she would feel better if I took her to the ER. At the ER, they gave her morphine and ordered an x-ray of her hips. When the x-ray came back normal, I asked if she would need to get an MRI. The doctor said, "Only racehorses and Redskins get an MRI while in the ER," and that MRIs are almost always done outpatient. About thirty minutes later he walked in and said that he discussed Tatum's case with some other doctors and they all agreed that they weren't comfortable sending her home without an MRI. That's when we all started to realize that this could be something serious. The MRI came back normal, so they said we could go home and to follow-up with the orthopedic, as we already had an appointment scheduled later that week. While leaving, one of the doctors mentioned that she was surprised that Tatum was able to go home. She said, "With the amount of pain that she was in, I really thought we would be sending you to Children's Hospital." On the way home Tatum and I talked about how close we had come to hearing bad news and how lucky we felt that the MRI was normal. We really felt like we had dodged a bullet.
A few days later, the orthopedist listened to everything and said that the MRI was the right test but that they had imaged the wrong spot. She needed an MRI of the lumbar spine, not the femur. We had the MRI done on a Saturday. On Monday morning at 8:00 am the office called asking us to come in to discuss the results and scheduled us for Wednesday. I was alarmed but figured if it could wait until Wednesday it must not be that serious. A little bit later the orthopedic office called back and said that the doctor wanted to see us that day.
The first thing the doctor said was that Tatum had a hole in her bone and then went on to explain that something had made the hole and that most likely it was a tumor. I remember him saying that "this is really going to rock your world." From that moment on, our world has literally been turned upside down. There is our life before Tatum got sick and there is our life after Tatum got sick. He then handed us a paper with the name of a pediatric oncologist and said that he had already called ahead and made arrangements. Tatum had a room ready at Fairfax Hospital and they were expecting her.
Tatum spent the next two weeks inpatient. After several days of tests, she was diagnosed with Ewing Sarcoma of the sacrum and had metastases to both iliac crests, her right femur, a rib, and bone marrow. She had her port placed and started chemotherapy. She spent about the next year in treatment. While I can remember almost every detail from the day she was diagnosed, that year is pretty fuzzy. It was a whirlwind of chemo admissions, clinic appointments, ER visits, blood and platelet transfusions, radiation, physical therapy, medications, and the anxiety of scans every few months.
Toward the end of her treatment, a bone marrow biopsy showed that she had developed Myelodysplastic Syndrome (MDS). MDS is a bone marrow failure disorder that develops into Acute Myeloid Leukemia and was caused by her treatment for Ewing’s. The only treatment to prevent it from developing into AML is a bone marrow transplant, which she had in November 2017. Her recovery from the transplant was brutal and she suffered from multiple complications.
Tatum is almost 3 years off treatment for Ewing’s and her scans continue to show no evidence of disease. She's a little more than 2 years out from her bone marrow transplant and recent test show that her blood is still made up of the donor cells. She does have several long-term complications that she deals with on a daily basis. The most significant one at this time is that she has avascular necrosis of the hips, resulting in pain and difficulty walking. On the right side she recently had surgery to fix a stress fracture. On the left side the hip joint has started to collapse, and we are hoping to schedule a hip replacement in the next few months.”
We need a cure for Ewing Sarcoma and we need treatment options that have less severe side effects. It only takes a few minutes to donate to raise funds for much needed research.