Our daughter, Rihanna, was born with a tumor the size of her head on her right upper arm.
Her arm was huge, and it didn't look good. I couldn't function. I was just in shock. I'm like, oh my god, we're going to lose this baby.
We had our doubts. But then we spoke and said, you know, Rihanna could be a bridge for helping other kids. So we were all for it. And we began the treatment.
Rihanna was a good candidate for larotrectinib because the tumor she had had a gene mutation which is specifically targeted by the medicine. Basically, these tumors are pretty resistant to chemotherapy. Our only other option other than a new medicine was really to do surgery. And surgery alone would have caused debilitating damage to her arm.
The tumor was rather large, and it was pressing on, if not involving, some of the very important structures in the upper arm that help control the muscles of the lower arm.
When we first started giving Rihanna larotrectinib, we were amazed about how quickly the tumor started to shrink.
There was no side effects. You know, she wasn't getting sick. She was just a normal baby.
Mom called me and ecstatically was telling me how she's noticed that the mass has gotten significantly smaller. She couldn't believe it. To hear that excitement, I won't lie, we were just as excited because we're thinking not only about Rihanna, but we're also thinking about every other patient we have who could possibly benefit from this medicine.
If we hadn't shrunk it first, she could have ended up with a forearm and a hand that didn't work the way they should for the rest of her life.
She has full function of that arm right now, and no evidence of the sarcoma, of the disease.
The baby is fine and healthy, and God is good. And I don't have to worry about Rihanna. She plays, and she jumps and uses her arm like a normal, healthy baby. We are so blessed to be here at Memorial Sloan Kettering. Everyone has treated us with respect, with love, care. We are so thankful.