Niyati Shah: Lifeguarding, Spending Time with Friends, and Preparing for College, Thanks to Noninvasive Treatment

A Message from Bhavesh and Nita Shah, Niyati’s Parents

When Niyati was 10 years old, she started coming home every night after swim practice with excruciating pain in her shins. For a long time, the doctors were not able to identify the cause of the pain. Finally, an MRI test performed with a contrast dye led to her diagnosis of osteoid osteoma, a very rare type of tumor. She took part in a clinical trial that was testing a noninvasive procedure known as Magnetic Resonance-guided High Intensity Focused Ultrasound (MR-HIFU) for the treatment of osteoid osteomas. Since the treatment, her pain is completely gone; she is tumor free and living a normal, healthy life.

Our daughter Niyati has been a swimmer since she was a child. When she was about six, she joined a swim team and at the age of 10, she started experiencing severe pain in her shin every night after her practice. Initially, her pediatrician attributed it to “growing pains” and prescribed ibuprofen. Unfortunately, the pain kept coming back, especially in the evening hours. There was a pattern to the pain. We followed up with X-rays and several rounds of physical therapy, but nothing seemed to help. The pain just would not go away. Niyati started missing school because she couldn’t sleep at nights. For us as parents, it was heartbreaking. We had many sleepless nights just watching her cry in pain. We just couldn’t figure it out. Finally, her doctor recommended an MRI with a contrast dye. She also recommended imaging her entire leg, even though the pain was in her shins. That is how we found out that there was a tumor in her femur. Prior imaging had missed it because X-rays were done below the knee where she was experiencing the pain.

Our pediatrician put us in touch with a physician at the Children’s National Hospital, who diagnosed Niyati with osteoid osteoma. He told us that this was a rare tumor that causes pain, which can worsen at night. He also suggested that we enroll Niyati into a clinical trial for a noninvasive procedure called MR-HIFU. The procedure uses magnetic resonance imaging to focus a high-intensity ultrasound beam into tumors. The beam heats the tumors and destroys them. While conventional surgery was a backup option, we were keen on this new treatment for Niyati, given the noninvasive nature of the procedure. Her physician explained that even if MR-HIFU did not work, there would be no harm done.

Before the procedure, Niyati had to undergo tests to make sure that the tumor was not too close to her nerves to avoid damage from MR-HIFU. On the day of her procedure, we were accompanied by a large team of pediatric doctors, nurses, and other staff, all of whom took great care of Niyati throughout the entire process. We were just so blessed to have such a caring team of health care providers who made our daughter feel like she was at Disney. They were so welcoming that she enjoyed the whole process. We were elated that the procedure worked. Since her treatment, Niyati has had absolutely no pain. She is tumor free and living a normal life as a teenager. She is a completely new person.

We feel very blessed that there was a cure for Niyati’s disease because of the technological advances in cancer treatment. The federal government needs to invest in research and development to finding cures so that patients with cancer can live a normal life and not be in constant fear. At the same time, our government and the research institutions need to raise public awareness of the research and scientific breakthroughs that are happening in the field. It is our ardent request to the Congress that they prioritize funding to the NIH and to all other research institutions that are working on the many aspects of human biology so that no human being is lost to cancer. Niyati would not be where she is today without funding for medical research.