The girl’s name Sajni is pronounced as Saj - Nee. The name's meaning is one Who is dearly loved, beloved.
Six years ago, we opened the doors to The Sajni Center in Amesbury, MA: headquarters of Lucy’s Love Bus and host location of many of our group programs for Love Bus families. In 2022, we launched the Sajni’s Siblings program, answering the call to bring the siblings of childhood cancer patients deeper into our circle of care by empowering them with opportunities to experience the benefits of integrative therapies of their own choosing. Sajni and her family have had a huge impact on the growth of Lucy’s Love Bus, and as we celebrate the sixth anniversary of the opening of The Sajni Center, it’s time to (re)introduce you to Sajni and her family! Meet Sajni, your March Butterfly Buddy, and her family: mom Vanessa, dad Prabal, and younger siblings, Anandi and Remi!
Sajni Chakrabarti was a beloved daughter, sister, student, granddaughter, and friend, who is remembered as compassionate and talented; an old soul, full of life, and endlessly curious. Sajni was a top student in her 2nd grade class; she loved to read, played the violin, was fluent in French, and gifted at sports. Suddenly, in November of 2015, she began struggling with things that once came so easily to her: she fell in the Turkey Trot race at school, couldn’t place her pinky on the right spot of her violin bow, or lift her leg over her bicycle. Her handwriting changed. Vanessa scheduled an appointment with her pediatrician, who immediately knew that something was wrong when she saw that Sajni’s eyes weren’t tracking together. Vanessa, Sajni and Prabal hurried to Boston Children’s Hospital for an emergency MRI. It was there, in a windowless room, that they would learn the life changing news: Sajni had an inoperable brain tumor called diffuse intrinsic pontine glioma, or DIPG… and there is no cure.
Even with the bleak prognosis, Vanessa and Prabal were determined to do everything they could to save their eldest daughter. Sajni underwent a 10-hour surgery where a robot placed four catheters into her brain stem; traveled to the UK for treatment 10 times; took one trip to Florida for a second brain surgery; had two cycles of radiation; and attended many other additional medical appointments. The effects of cancer and treatment left her with double vision, mobility problems, slurred speech, and loss of use of her dominant hand.
But through it all, the family found joy in the company of each other and the comfort of routine. Sajni continued attending school, missing only five weeks total throughout treatment. The family spent summer evenings at the Cambridge public pool, where Sajni’s disabilities weren’t as pronounced and the whole family could be together, getting exercise and having fun. They rescued a kitten from the shelter, and named her Toupie (spinning top in French). Sajni and Anandi started doing karate together with Kids Kicking Cancer. Sajni also began therapeutic horseback riding at BINA Farm in Lexington through funding from Lucy’s Love Bus.
“In the midst of dealing with these new physical impairments, Sajni found strength and solace in horseback riding. Through riding, she could transcend her limitations and have something that was all hers,” Vanessa explains.
During the course of her treatment, the drug shrunk Sajni’s tumor and then held it stable for some months before it started to grow again. By the 18th month, the treatment began to stop working. Her tumor was aggressive. Soon she lost the ability to move or speak. She died in her parents’ arms at her home in Cambridge on July 1, 2017.
The week before her death, the family took Sajni to the farm to see “her” horse. She could barely move, but her faithful companion gently nuzzled her: it’s a moment that her parents will cherish forever. “Sajni lived 19 months following her diagnosis and had more happy days than I would have thought possible. But at the end, we told her she was the best child we could have ever asked for. We held her, and she slipped away,” Prabal wrote.
After Sajni’s death, Vanessa, Prabal, and Anandi found healing, comfort, and community in Lucy’s Love Bus, attending group programs and support groups for caregivers. As Vanessa tells us, “Lucy’s Love Bus was even more important to us after Sajni’s death; it’s not just the programs and the funding but the community. When you have a child with cancer, your whole world changes. It’s scary and isolating. Even when you have amazing family and friends supporting you, they don’t fully understand what you’re going through. It’s not the same as having this community that really ‘gets it.’ After Sajni’s passing, this community became essential to us.”
Since Sajni’s passing, Vanessa and Prabal adopted Sajni and Anandi’s younger brother, Remi, from India. He has learned about Sajni through their memories and photographs. Vanessa and Prabal find comfort in their beautiful family and in carrying on Sajni’s legacy. Vanessa and Prabal helped start, and now advocate for and support, The Sajni Center and Sajni’s Siblings program of Lucy’s Love Bus, and the Sajni Fund for Pediatric Brain Cancer Research at Dana Farber.
“Every time her name is written or said, it feels really good. Our pain and loss are still here, but it’s so important to us that she’s not forgotten,” said Vanessa, with Prabal adding, “To have had Sajni: that is our treasure.”
Thank you for joining us in honoring Sajni’s legacy and the resiliency and generosity of her family and friends. Gifts from community members like you deliver comfort and quality of life to deserving children like Sajni; create happy moments and memories for siblings like Anandi and Remi; and enable authentic opportunities for community bonding and support for parents like Vanessa and Prabal.
