Sophi was having trouble with her eyes, so we went to urgent care. They found really high blood pressure. Her eye was fine – they said maybe she was just nervous. I knew this was not OK, not normal. It was February 2016, and I was 12 weeks pregnant with my son. A blood pressure reading of 170/120 is really high for a healthy, six-year-old girl. We went to a local children’s hospital, where they found a grapefruit-sized tumor on Sophi’s adrenal gland. After 10 days, she was diagnosed with Stage 4 neuroblastoma, although it had not metastasized. She had five rounds of chemo in Kansas City. Although the hospital said they were doing what every other COG (Children’s Oncology Group) hospital was doing, I knew that wasn’t the whole story. Patient forums and my own research led me to Sloan. We’ve only been in the journey for a little over a year. Two out of three families I’ve talked to end up at Sloan. You have to make so many important decisions when you know the absolute least. To make life-and-death decisions for our kids. We are one of the luckiest – the chemo killed every cancer cell in her body. It’s absolutely remarkable. We started hu3F8, and we were completely NED within five months of her being diagnosed. It feels like a huge victory that she responded so well to chemo. She had a tumor resection with Dr. LaQuaglia. One more round of chemo just to be safe, then the 3f8. My pregnancy added a level of challenge – if she threw up, I couldn’t help her. All those instincts to coddle and cuddle and help had to be put aside. My husband travelled with Sophi for every 3F8 treatment. They had a routine, she’d distract herself with her ipad…the goes to her “Zen Zone” and we’d give her her thought. She worked really hard to not let herself get freaked out. Sophi is a truly remarkable little kid. She knows the power of the mind to help her body what she gets. She tried to go back to dance, right after chemo, because she didn’t want to let anything stop her. But dance was hard, she went back after bone marrow and it hurt. She didn’t have any hair—while the teachers and staff were overjoyed to have her there, she felt different from the other girls there. With little girls especially who don’t have the filter to know not to ask why you don’t have hair? She has responses but it still hurts. She does yoga and dance at home. Next step is vaccine therapy.
As told by Sophi’s mom, Bethany Dodds-Eber, 3/29/17