Uday Laway, a nine-year-old cancer patient from Chinchkhed village in Maharashtra’s Buldhana district, felt a sense of freedom on reaching his home after almost a year. He and eight other cancer patients — highly vulnerable to COVID-19 infection—travelled by bus from Mumbai to their homes in rural areas of Maharashtra with their parents.
Some of the parents, however, remained worried about resuming their lives amid the coronavirus-induced lockdown.
Early on 6 May, a bus carrying six of the children began its journey. Among those on the bus were three-year-old Farhana Shaikh from Parbhani who has been undergoing treatment after being diagnosed with eye cancer in February 2019; Suraj Baviskar, a 15-year-old from Jalgaon, who has been receiving treatment for bone cancer since December 2018 and Uday, who is battling liver cancer. Also on board were 10-year-old Narsing Pol, two-year-old Issa Shaikh and 14-year-old Mohammed Maaz, who were also heading home with their parents.
Uday, who is battling liver cancer, had been living at a care centre run by St.Jude’s — a non-profit providing accommodation, counselling and holistic care for families battling cancer — for the past 11 months while he received treatment at Tata Memorial Hospital (TMH) with his parents. However, soon after his treatment got over in March, a lockdown was imposed to control the spread of the novel coronavirus and he was stuck at the care center.
A nationwide lockdown was first imposed from 25 March for a period of 21 days till 14 April. It was then extended till 3 May and then further extended till 17 May. The fourth phase of the lockdown is now scheduled to end on 31 May.
Not only were the children eager to get home, but the parents were also looking forward to being reunited with their families left back home. Many of them worked as daily wage labourers or farmers, and were also running out of money since they had been living in Mumbai for months.
Uday’s father Ravindra, who is a farmer, described the difficulties faced by him and other parents like him. “Living in a city like Mumbai is very difficult, but we were provided with food and all basic facilities. We were also informed of all the precautions to be taken to guard against catching the virus. Protecting our child meant living inside a room for days on end. This was fine for a few days, but the lockdown kept getting extended and there was no end in sight,” he said.
For these children and their families, the desperate need to return home trumped over fears of exposing themselves to the virus and they decided that it was time to return home.
Ashraf Shaikh, who was stranded with his three-year-old daughter and wife, said that parents also sought help from political leaders back home, but they were also unable to help. Besides, they did not know how to obtain permits to travel across multiple districts. Hence, the parents decided to approach the St. Judes representatives for help.
“The families were very keen to go back to their homes, having stayed away for so long for the treatment of their children. We decided to do our best to facilitate this,” said Anil Nair, CEO of St. Judes.
Armed with food, water, sanitisers, masks and permits acquired for them by Tata Memorial Hospital and accompanied by St.Judes occupancy manager Sandeep Kharat, the families set off on their journey back home on 6 May. The entire cost of the bus journey as well as all the provisions was borne by the non-profit organisation, which also provided the families with rations that they would need after reaching home.
According to Kharat, the round trip of around 1,200 kilometers took much longer than it would have normally taken as they were stopped at multiple checkpoints to ascertain whether they had the requisite permits. They also faced delays due to sections of the roads being in a bad state.
Describing the journey, Rizwan Khan, father of two- year-old Farzan, said, “We were scared, as most people are. But we also knew what precautions to take and made sure that we avoided getting out of the bus unnecessarily. We were in a much better condition than those walking on the roads..some of them had blisters on their feet and nothing to eat.”
During the journey, says Kharat, they were acutely conscious that the registration number of their bus identified them as having come from Mumbai, which has reported over 27,000 coronavirus positive cases and has been classified as a red zone The fear hung over them whenever they made a rest stop or reached a new district, but the journey passed without incident.
Most of the families underwent screening procedures at the government hospitals in their respective districts, before proceeding to their homes in the rural areas of the districts. Elected heads of their villages were mostly supportive and in some cases even arranged for transport to bring back the families from the district headquarters.
While most of the drop-offs passed off without incident, in Latur’s Sakhre village, the party was met by the local ASHA (Accredited Social health Activist) worker who suggested that the father be quarantined separately from the rest of the family. Said Mukta Pol, mother of Narsing Pol, “Even the sarpanch came to meet us. The anganwaadi worker told us that the father should quarantine himself at the school.”
However, Kharat told the health worker that the family had been living in a secure facility while in Mumbai and that they had a cancer patient to look after. He also pointed out that they had minimal contact with people on the way back, after which the ASHA instructed them on precautions to be taken during home quarantine. The family agreed to quarantine themselves at home and the issue was resolved.
Buoyed by the success of the first journey, St. Judes undertook a second trip immediately to drop off three families from Ahmedanagar, Buldhana and Pune on 10 May.
Thus, a total of nine families with cancer-afflicted children reached home amid the lockdown.
According to Ravindra, Uday had been feeling cooped after the lockdown began in Mumbai and being back home made him breathe easier. “His mood improved after returning to familiar surroundings and from whatever I could observe, he felt more at ease,” said Ravindra.
The Shaikhs, who had left three of their children in the care of their grandparents, said that they were very happy at being reunited with their family.
“We were so unsure about when we would get to see our village, our children again. Now, we’re glad to be back with our families, back to our villages after such a long time,” said Ashraf, who is a driver.
Grateful to be back, but facing unemployment
While the families are grateful to be back at home, some of them faced problems they hadn’t anticipated. Most of them spent a fortnight under home quarantine and the reunion with their families took longer than they had thought. However, this had to be done to protect their family members and guard against a possible spread of the infection in the villages, they said.
While St.Judes had provided them with rations to last through the quarantine period, they now face the challenge of resuming normal work.
Rizwan Khan, who works as a plumber and Mukta Pol were among those who were worried about the lack of livelihoods. The rations provided to them by St. Judes ran out after fourteen days and they currently have no means of providing for themselves.
“Our journey back home was very good but now that we are here, we face different problems. By the time we got back and finished our quarantine periods, all the farm work had been completed. They normally finish the work before summer begins. I don’t know how we will find work,” said Pol.
Rizwan also feared that he would soon fall into daily routines which might prevent him from giving his son all his attention. “In Mumbai, we had a fixed routine which revolved around our son’s treatment. Now, I am afraid that might fall apart,” he said.
Updated Date: May 26, 2020 11:54:58 IST
Child Cancer Patients,
Tata Memorial Hospital