What does a mother do when her child complains of a stomachache? I gave mine some antacid and put her back to bed. This was in Tokyo, January 2003. The stomach pain reoccurred with vengeance one night, which required hospitalization and investigations. The Japanese, to say the least, are very thorough. Blood, urine and stool tests, an x ray, ultra sound and even a CT scan to determine the cause of the abdominal ache, which had my five year old doubled in pain. As all tests portrayed normal results, the cause was attributed to constipation and an enema was the solution and all was well.
In May 2003 we returned to India. We were excited about our new home, surroundings and the children’s school when the pain began again. Normal results for all the tests conducted led the doctor to believe that the cause was sibling rivalry and that these were attention-seeking tactics. Circumstances led to two consecutive blood tests in twenty-four hours with shocking results. Her WBC, platelets, hemoglobin and neutrophyl levels were dangerously low. Immediate hospitalization was recommended. The bone marrow test raised countless queries in my mind. Friends stood by us while my husband, who was still in Tokyo, took the next available flight back to reach Leelavati Hospital, which turned out to be his and our daughter’s home for the next 45 days. The bone marrow test result confirmed our worst fear as our daughter tested positive for Acute Lymphoblastic Leukemia (ALL). As my sobbing husband broke the news to me on the phone, we both cried. That was the only time we did as the decision to get her treated and cured left us with no time for tears.
The Treatment:
My husband was the pillar of strength and we consciously kept all negative thoughts and people away. We listened to our doctors, did our research, took another opinion from Tata Memorial Hospital and the treatment began at Leelavati Hospital. We were told that the treatment would take close to three years and involved rigorous chemotherapy and radiation initially, followed by six maintenance cycles lasting three months each and then a periodic review for 5 years from the date of diagnosis. Chemotherapy was a combination of drugs administered through IV, muscular shots and intra ethical injections to the spinal cord requiring general anesthesia in the case of children.
The first step involved surgery to insert a Hickman catheter through her jugular vein with an outlet near her breast. To us laymen, it was a pipe having three ends, one embedded near her heart and two outlets for chemotherapy and blood transfusion. This saved the pain of countless injections as all her medicines were pushed in through that pipe and the daily blood test was carried out with a smile from her. This also involved total sanitization, as it was a foreign object inside her body with the ends dangling out. She and my husband were in isolation except for the nurses and doctors and my daily visits. The trauma involved was reduced by the friendly doctors, surgeons and nurses, who always came armed with wit and enthusiasm to tackle my daughter’s endless riddles and jokes. While her hematologist encouraged the artist in her, the surgeon took time off from his hectic schedule to play dominos with her. Permission was obtained on Rakhee for our son to visit her as kids are barred from the hospital, unless getting treatment. I have a picture of my skinny little girl all masked, with tubes hanging, tying a rakhee to her brother with a smile.
Next was the radiation at Hinduja Hospital, Mumbai. This required a facemask which was made by fitting a mould of hot raw material, which when dry fits the individual’s face to perfection. This led to a short period of pain and discomfort, but once Daddy explained everything her trust and compliance were unbelievable. With no hair and her body doubling to twice its size due to steroids, frequent nausea and discomfort, she was an epitome of courage and resilience and I came to the conclusion that kids make the best patients if they build trust. Once back home we adhered by everything the doctor recommended. Only hot, home cooked meals, no visitors and of course no school for close to a year. As the treatment continued the daily visits to the hospital reduced, the catheter was removed, and check-ups were once in three months.
Normalization:
We stood united to get her cured. My husband’s office and his colleagues, my daughter’s school and principal, our family, friends and even my maid played an important role in this fight. Today, I am content that God gave us a tough test in life and saw us through it as it not only enriched and blessed our lives but also strengthened our belief in humanity and the almighty.
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—About our writer:
Sohini says, "I was born in Kolkata, and am a Bong by birth. I viewed India from different perspectives as covered most of it due to dad's transferable government job. Cited one of the reasons for marrying a non bong as an escape from fish and mustard oil and here I am after 12 years of marriage still perfecting Bong culinary skills as hubby and kids love it...Totally surprised myself and those who know me when I switched to full time home making from a full time job and now find myself enjoying every moment of it and harbor no regrets. I design interiors for my friends as a hobby. Ventured into writing a few years back and felt fulfilled when I saw some of my work published."
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