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READ MOREPublished on January 31, 2023 in AdvocacyEOY, Glioblastoma, Advocacy, Event Participant, Pediatric Brain Tumor, Advocate, In the Community
A busy working mom, Jyothi was no stranger to shuttling her two boys around for school and extracurricular activities. Her youngest son, Nitin, began complaining of headaches after playing tennis and also started to experience difficulties blowing to play his clarinet. A pediatrician suggested a CT scan to rule out anything more serious.
“It was a routine day,” Jyothi explained. “I was already at work while my husband took Nitin to his MRI, got him breakfast, and took him to school. By the time my husband reached work, I had finished a meeting and saw a bunch of missed calls from my husband and the pediatrician. My husband found out the results, didn’t tell me over the phone, and picked me up from work. I just left everything.”
Her husband and Nitin’s pediatrician shared that they found a mass on his brain. A week or two after his operation, Nitin’s medical team diagnosed the seventh grader with medulloblastoma, a brain tumor more common among pediatric patients. Nitin underwent 30 rounds of radiation followed by chemotherapy. In the span of six months, Nitin went from being a top-ranked tennis player in the mid-Atlantic region to being too weak to play and needing a GI tube after losing a significant amount of weight.
“Pediatric brain tumors are rare,” Jyothi said. “It’s rare until it hits your family, and then rare has no meaning.”
Jyothi and her family felt called to give back and fundraise for brain tumor research. Less than three months after his diagnosis, friends and family formed Team Nitin.
“We did Race for Hope DC in 2014 when Nitin got diagnosed, and we had 80-90 family members and friends show up that year,” Jyothi said. “And we have kept doing it every year. It makes such a big impact.”
In Nov. 2014, Nitin learned that he would receive his wish to be a Washington Wizards player for a day. The team granted his wish in conjunction with the local Make-A-Wish chapter in April 2015, when he had one cycle of chemotherapy remaining. By focusing on this upcoming opportunity, Nitin was more motivated at his physical therapy sessions, determined to make the best of that experience. It turned out to be an unforgettable one, putting a long-lasting grin on his face during what was a traumatic time for a young teenager.
“I tell this part of his story because of how important it was medically when he actually received his wish,” Jyothi shared.
Today, Nitin is in his final year at Georgetown, serving as a resident assistant (RA) and research assistant during his time there. While he can no longer play at a high competitive level due to lingering side effects, he plays on the Georgetown club team and actively participates in a variety of social clubs.
“I think 2022 has made a big difference,” Jyothi said. “He’s found his path and just decided to be proactive in living his life. He is studying computer science and math. He did an internship last summer. He’s looking forward to finishing up next year and then working in New York.”
Four years following Nitin’s return to school, Jyothi received a call that her older brother Sunder had been admitted to the hospital. The glioblastoma diagnosis shocked Jyothi, as her active 6’4” brother had run a marathon within the past year.
“The tumor was affecting his ability to do coordination, so he was a lot clumsier than normal,” Jyothi said. “Later, my nieces shared he had a couple of instances where he was driving and had to pull over and figure out where he was going.”
Unfortunately, the tumor had spread throughout his brain by the time of discovery, so a neurosurgeon could not resect the tumor. Following a biopsy, Sunder lost his ability to stand and his speech.
“He fought his battle for five months and 10 days,” Jyothi said. “He passed in Dec. 2019. That’s when I started getting more involved.”
Jyothi’s interest in advocacy evolved with two close family members experiencing a brain tumor. She signed up to become an advocate and responded to NBTS action alerts. She registered for Head to the Hill, the organization’s signature advocacy event.
Jyothi realized that the brain tumor community’s collective voice could make the most significant impact in advocating for increased funding for brain tumor research. Sharing her family’s brain tumor story is a way to keep the conversation going with policymakers.
“What NBTS is doing is important because they can push the need for research and how it benefits this whole community,” Jyothi shared. “Policymaking is what is going to make the biggest difference. It’s sad to look at the numbers and see how much is allocated for brain tumor research. You have to advocate for money and push for the research for the government to increase funding. It’s important for policymakers to understand that this brain tumor community needs help. Even the smallest story makes a difference to what we are fighting for.”
Jyothi witnessed firsthand the importance of quality of life with both brain tumor experiences.
Nitin wants to live a normal life, but there are many activities he cannot do because of side effects that remain. For example, he continues to struggle with endocrine issues. Nitin works closely with a nutritionist, knowing he has to stick to his diet or his cholesterol levels will go off.
“My son is living his life, and you wouldn’t know anything about his story when you meet him,” Jyothi explained. “Yet there is constant fear about secondary cancers because of the chemotherapy and radiation he has received. We’re hoping for better support every year, which is why I’m so interested in advocating for this cause.”
Jyothi’s brother, Sunder, lost his speech and ability to walk, among other basic functions. He started treatment to see if his quality of life would improve. By November, Sunder learned that his abilities would not return even though the tumor was not progressing.
“I saw quality of life in an extreme perspective during the five months and 10 days when my brother fought for his life,” Jyothi shared. “He made a decision with his family and said, ‘I don’t want the treatment anymore.’ Sunder knew it meant going into hospice and end of life, but he made that choice because his definition of quality of life meant he could perform basic health functions. It was time to stop treatment when he could no longer do those functions.”
NBTS invited Jyothi to join a Quality of Life Stakeholders Advisory Group in 2022 to speak on behalf of care partners of patients with a brain tumor. This advisory group integrates the patient and care partner voice into NBTS research initiatives surrounding quality of life. She sees it as another opportunity to share feedback on behalf of families impacted by brain tumors.
“When you’re in active treatment, a bunch of doctors are looking at you,” Jyothi said. “They are actively monitoring and asking, ‘How can we make this person survive?’ Or when you go to hospice, they’ll treat you well and say you can pass away comfortably. But what happens in those middle years? There is no clear direction on how to handle this period, so this initiative really interests me. How do we address quality of life subjectively, person to person?”
To address the lack of patient-centered quality of life research specific to brain tumors, NBTS seeks to support research, increase patient engagement, and generate evidence on strategies to improve quality of life and advance the science of palliative care so patients and their care partners can not only survive but thrive.
Danielle Leach, Chief of Government Relations and Advocacy at NBTS, shares, “NBTS believes that the quest for cures must include the same drive for quality of life, with patients and care partners as leaders in developing quality of life research that truly meets their needs.”
Care partners like Jyothi can help vocalize the urgent, unmet needs of the brain tumor community through fundraising, advocacy, or quality of life research.
Jyothi’s profile was updated in June 2023.
This September, the National Brain Tumor Society will highlight the devastating realities of a brain tumor diagnosis for children and families by sharing important progress being made in the field, raising resources to support ongoing and future research efforts, and providing opportunities for our community to share their stories and raise awareness.
TAGGED WITH: Medulloblastoma, #CCAM, quality of life, fundraising, #GBMDay, Head to the Hill, caregiver, advocacy, glioblastoma, brain tumor