Bella’s Story

Saving Bella:  2-year-old from Mumbai Gets a Second Chance at St. Jude 
By Thomas Charlier
Just imagine the scene: It’s the lobby of a hospital in Mumbai, India, a busy place. Amid it all, a young couple sits in a stunned haze trying to fathom the unfathomable, accept the unacceptable.
Their 1-year-old daughter — a bright and happy girl named Bella — likely was going to die.
That’s what Amit and Jaya were told. Although the surgery to remove the girl’s brain tumor had been a success, doctors said, subsequent tests indicated the mass was an embryonal tumor with multilayered rosettes, or ETMR.

Bella, now 2, traveled with her father Amit and mother Jaya from India to St. Jude Children’s Research Hospital, where she received proton therapy for a type of brain tumor known as anaplastic  ependymoma.  As Amit and Jaya understood it, ETMR was more than an acronym. It was a sentence — a death sentence. “There is no cure for this particular type of tumor — that’s what they said,” Amit says. “My wife…she broke down.” Subsequent review, however, resulted in a change in the diagnosis. Bella, in fact, did not have ETMR a type of tumor that is usually aggressive, recurring and often fatal but anotherkind known as anaplastic ependymoma, which has survival rates that are much more encouraging. She would go on to travel to Memphis to receive chemotherapy and proton radiation therapy at St. Jude Children’s Research Hospital. Now, at 2 years of age, she is back home and doing well.

Caption: After arriving at St. Jude in March 2018, Bella underwent cancer treatment as well as speech and occupational therapy. 

To understand how the turnabout happened, you have to go back to that hospital lobby in
Mumbai. To the moments Amit would later describe as the worst he and his wife ever
experienced.
They are sitting there, trying to accept the grim news about Bella. Jaya can’t stop crying.
At that point, passersby — family members of another patient — see the couple and ask
what is wrong. Amit and Jaya tell her of Bella’s diagnosis.
Members of the other family mention St. Jude, asking the couple if they had heard of the
hospital in America. “If they accept your case, there will be high chances of survival for your
child,” one of them tells Amit and Jaya.
Amit has concerns. The surgery in India left him financially drained. He can’t imagine how
he would pay for travel to the U.S. and treatment at St. Jude.
When he learns from the other family that all costs are covered, that no patient family gets a
bill from St. Jude, Amit has almost as much trouble digesting the news as he did the earlier
diagnosis of Bella.
Soon, Amit is looking up St. Jude online, then sending an email outlining Bella’s case
history and asking for help in saving her. The hospital responds, requesting that he send a
tissue sample of the tumor. Amit provides the sample via courier.
Within a few days, he gets a phone call. On the line is a doctor from St. Jude — with good
news.
“They confirmed that my child does not have ETMR. She has anaplastic ependymoma,
which can be curable if it is treated in the right aspects,” he recalls.
“We are very happy.”

Bella’s father, Amit, sent samples of her tumor to doctors at St. Jude Children’s Research Hospital,
where the she later received proton therapy.

St. Jude seemed a good fit for Bella. It has the Red Frog Events Proton Therapy Center, the
world’s first such facility dedicated solely to children with cancer.
After arriving at St. Jude in March 2018, Bella underwent cancer treatment as well as
speech and occupational therapy. The earlier surgery had robbed her of some of her
speech, but within a few months, Bella was talking profusely again, albeit with an American
accent.
Having returned to India, Amit and Jaya look forward to settling back into the kind of life
they had before their daughter got sick, when they were happily uninformed about things
like brain tumors.
At the same time, they speak highly of the hospital that saved Bella. St. Jude, says Amit, is
“more than just a hospital…St. Jude is something really great.”