The struggle with leukemia: A story from Kashmir

By Nusrat Sidiq

SRINAGAR, Jammu and Kashmir (AA) - On July 16 last year, Mohammad Bilal Hakeem, a 40-year-old man in Indian-administered Kashmir, was distraught over the deteriorated condition of his six-year-old son.

An unusually high fever made the father suspect his son had caught COVID-19, but this soon took a turn for much "worse."

On June 29, Mustaqeem was shivering with a high fever, but it lasted for two days before returning in July, this time with more severity.

Medical tests revealed Mustaqeem was suffering from acute lymphoblastic leukemia (ALL), a type of blood cancer.

This type of cancer can progress quickly and needs urgent attention, as per medical experts.

Leukemia week was observed between Nov. 2 to Nov. 8, Anadolu Agency revisited the case of Mustaqeem and his struggle with the disease.

"It was so shocking and heartbreaking for our family to know this news," Bilal, the father, said.

- Trauma

After Mustaqeem was diagnosed with the disease, the whole family got into psychological stress.

"At that point in time, we felt it was the end as the news was so stressful. I couldn't sleep for days together thinking about how will my son react to the cycles of treatment," Bilal told Anadolu Agency.

The distressed father soon took his son outside Kashmir for treatment but is still clueless about the future condition of his son.

"The treatment is going, but I have left all my hopes and prayers with the Almighty," Bilal said.

A study conducted last year among 180 pediatric cancer patients who had visited the tertiary hospital of Kashmir from 2015 to 2019 showed that there is a chance of relapse among 20 to 30 percent of patients after primary chemotherapy induction.

"Acute Lymphoblastic Leukemia is the most common malignancy among children, and it can prove fatal if timely treatment is not given," Dr. Saqib Ahmad, a medical oncologist, told Anadolu Agency.

Research suggests that nearly 77,000 children and teenagers (0-19 years) are diagnosed with cancer every year in India.

An Indian Council of Medical Research (ICMR) report released this year said that 7.9 percent of all cancer cases in India between 2012 and 2019 were found in children younger than 14 years of age.

- Aspiring to become astronaut

At the age of 2, Mustaqeem was very much fascinated by the images of planets and stars.

"He always had a likening towards these things. When he turned four years old, he told me that he wanted to become an astronaut," Bilal said.

He added that he always asked me to bring images of these planetary bodies from stationery shops and ask questions.

Though Mustaqeem is going through the treatment cycles, his father still brings images of these planetary bodies to cheer him up.

"I make sure he doesn't feel bad or get disheartened with the long treatment period," adding that sometimes, he asks questions about why we are in the hospital and not at home.

"I just turn the topic to something else," he added.

- Treatment gap

According to the study conducted by the National Society for Childhood Cancer Kidscan, which surveyed nearly 3000 children stated that around 50 percent of children with cancer in India remain undiagnosed and unable to access treatment.

"Those who do access care often receive it at an advanced stage of the disease when there is a lower probability for a cure," the study points.
"Wasting a single second of time can prove costly in such diseases. The more abruptly the treatment begins, the more chances of recovery," Dr. Ahmad said.

However, he added, many of the patients come to hospitals or visit a doctor when already a lot of damage has been done, or the diseases have progressed, grown and spread to other parts.

As per the Kidsscan study, a significant delay occurs at the diagnosis stage.

On average, it takes a family 37 days to navigate the primary and secondary healthcare system before reaching a specialized hospital and getting a diagnosis. This figure lies anywhere in the range of 0 and 1,448 days, as per the study.

- Improper diagnosis

Poor diagnosis and mostly undersized healthcare centers are a hurdle that needs to be eradicated, experts say.

"We need better healthcare centers at primary level so that diagnosis and proper treatment can be availed at the initial level of the cancerous stage," Dr. Javvid Muzamil, a medical oncologist, told Anadolu Agency.

He added that we see patients when already the disease has progressed to a large extent. This can be minimized if we have better Healthcare facilities at the primary level.

Bilal, who hails from the Kupwara district of Kashmir, also echoed that there is a need for better healthcare facilities.

"We have to travel full day before reaching a city hospital for treatment. If God forbid there is severe patient, he will die on the way,"​​​​​​​

"I don't want that fate for my son," he said.