Nisha D’Souza and her son Kyle Image Credit: Antonin Kelian Kallouche/Gulf News

Dubai: The parents of a 15-month-old boy, who has undergone a staggering 25 chemotherapy sessions to treat a rare cancer-like disorder, are now hoping the worst is over.

Dubai-based Nisha D’Souza, who called her son Kyle a “one-in-a-million” trooper, said: “He is fighting an aggressive multi-system disease called LCH and has been through 25 chemotherapy sessions so far, besides several other procedures and scans. But he is always smiling and that’s enough evidence of how much strength and grace he is being given by the Almighty. We hope his upcoming scans will show marked improvement and he will be in remission by the end of the year.”

The manifestations of LCH or Langerhans Cell Histiocytosis range from isolated bone lesions to multisystem disease. It is a condition in which abnormal cells deriving from the bone marrow are capable of migrating from the skin to the lymph nodes. It can affect vital organs and prove to be life-threatening.

Nisha said, “Kyle was a perfectly healthy baby when he was born on August 3 last year. He had a good appetite and showed no signs of any health issues, except for a small skin rash, that was initially diagnosed as eczema.”

Kyle is always smiling and that’s enough evidence of how much strength and grace he is being given by the Almighty.

- Nisha D’Souza, Kyle’s mother

However, two months down the line, when his parents took him for his second vaccination, Kyle’s skin rash was re-examined and he was referred to a paediatric hospital. “His lymph nodes were swollen in several places, which was unusual for a baby his age, and his haemoglobin was very low. After five days of tests, scans and a biopsy, we were told that Kyle has multi-system LCH. It had affected his liver, spleen, lymph nodes, bone marrow and skin and had caused lesions on his skull.”

Ever since, it has been one long battle. “We decided to fly back home and get him treated at a cancer speciality hospital in India. But even as were making the plans, Kyle’s lymph nodes enlarged rapidly to the extent that they started blocking his windpipe and he was struggling to breathe. He was rushed to the Emergency and put on the ventilator. Since the hospital we were at wasn’t equipped to treat his condition, we had to move him to another hospital where he was administered chemotherapy and steroids.”

Kyle, who was subjected to 12 weeks of straight chemotherapy, went on maintenance treatment thereafter, with the chemo sessions being spaced out to every three weeks. “His last session was on October 2 and he has not has any fresh lesions so far. We believe he has turned the corner.”

Nisha said because of Kyle’s fragile condition, he has largely been in a sterile environment. “We couldn’t take him out much and he hasn’t been able to interact with anyone except for our close family since his immunity is low. We have also had to pay close attention to his diet to ensure that it doesn’t interfere with the treatment.”

But through it all, she said she and her husband Mikhail never gave up. “We have been blessed with the resources and grace to deal with this situation. Every time we felt we were going through a tough time, we met people who are going through worse. We have received tremendous support from our family, friends and even random strangers, who are now friends.”

Nisha said: “LCH occurs randomly and is neither genetic, nor predictable. It is not easily diagnosed and it is definitely not pleasant. But one thing is for sure – this too shall pass.”