Sahiba (22) is trying to gather clothes, bags and her two-year-old son Noor, trying to protect them all from the rainwater leaking from a flyover near the Tata Memorial Hospital in Mumbai.
“We are living under this flyover, and he wants to go out – which means we walk around holding him,” said Sabiha pointing towards Noor.
This January, Noor was diagnosed with hepatoblastoma, a rare cancer of the liver, setting off a chain of events that had turned the family from Jabalpur in Madhya Pradesh virtually into nomads, as they shuttle between their hometown and Mumbai, and between shelter homes and the flyover.
This is the family’s third visit to Mumbai. In April, The Indian Express had reported how the family, along with other cancer patients, was shifted by the hospital from under the flyover into a Bandra shelter for the homeless.
“This is our life now. I haven’t been able to work since January, our savings have run out,” said Noor’s father Zafar (24), a construction worker.
A senior oncologist in Jabalpur had referred Noor’s case to the Tata Memorial Hospital. On January 27, at Noor’s first OPD appointment at the hospital, it had dawned on Zafar that the treatment would be a long haul. “The doctors said he would need 10 cycles of chemotherapy at 15-day intervals. I didn’t even know what chemo was until then,” he said.
“As the tumour grew, Noor would throw up everything he ate,” Sahiba recounted. Lacking resources for a prolonged stay, the couple returned home after the first chemo cycle in February, defaulting on the treatment for three weeks.
“In the case of hepatoblastoma, not missing a (chemo) cycle is very important to stop the tumour from worsening,” said an oncologist, who is treating Noor at the hospital.
The family would return to Mumbai in the first week of March, as Noor’s condition worsened. The cancer care shelter where they had stayed in January refused to take them back, forcing the poor family to camp on the street outside the hospital. “We saw other families living on the road and joined them,” Zafar said. They had never before lacked a roof over their head. Zafar’s mother and sister would join them mid-March.
“The lockdown was the worst thing to happen to us. Suddenly, there were no food vendors and NGO activists couldn’t come often because of the travel curbs,” Zafar said. Living in the open also carried the danger of contracting the virus.
The move to the Bandra shelter was a blessing, but the Brihanmumbai Municipal Corporation (BMC) soon realised that housing immune-compromised cancer survivors along with other homeless persons could actually spell disaster during a contagious pandemic.
They were then moved to a lodge that did not allow them to use a stove to make fresh meals for Noor, who was diagnosed as “severely malnourished” at 7.5 kg. Eventually, the family was moved to another private accommodation arranged by the hospital.
For the next two months, as the family stayed on, their savings started running out. Their landlord in Jabalpur started threatening eviction.
As Noor was an OPD patient, he was checked for Covid-19 before every chemo cycle. On May 27, Noor and his mother tested positive for the virus, which ledhospital itself, even as rest of the family continued to stay at the private accommodation.
Noor had mild symptoms, delaying his chemo and undoing his recovery. By the time, Sahiba and Noor were discharged on June 10, he had completed only six chemo sessions, he needed four more before an operation.
By then, their Jabalpur landlord was throwing their meagre furniture out. “We pay Rs 3,000 as rent. The government said rent would be deferred during the lockdown, but our landlord didn’t waive it,” said Sahiba.
After the mother and son recovered from Covid-19, a new problem arose – the private accommodation refused to allow the two back.
As they were in danger of losing their home in Jabalpur too, the family told the doctors that they were returning. The doctors packed two doses of chemo in an ice box, to be administered in Jabalpur.
The 1,100-km journey back home was on a truck ferrying essentials. It cost Rs 2,000. When the doctor in Jabalpur asked them to come after quarantining themselves for 14 days, the family did not go back to her. The chemo kits lost their efficacy.
On July 16, Noor’s birthday, the child threw up the whole day. Panicking, Zafar and Sahiba somehow managed to board a train to Mumbai with Noor, and are now back under the same flyover near the hospital.
An NGO working for poor cancer-afflicted children and their families had offered the family stay, but on the condition that none of them could leave the premises, an option Zafar feels he no longer has.
“I have to go out and find work. I have been jobless, running around for Noor since January. Even if we get food here, what about my mother and sister back home?” said Zafar.
The family has found a lodge to stay in for the next couple of days but beyond that they cannot afford the Rs 500 per night charge. “I have spoken to some people for some renovation jobs, I need the money,” Zafar added.
Noor’s treatment will cost over Rs 2 lakh and is being funded by a charitable organisation through the Tata Memorial Hospital. “Can you find me a job? I’ll do anything,” Zafar asked, desperately. “Or a place to stay,” he added.
Just then, Sahiba’s phone rings. It is her mother-in-law. The landlord has started threatening again.
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