Empowerment and Inclusion advocate Marilena De Costa on living and thriving with Multiple Sclerosis
lifestyle2 days ago
On a fine Abu Dhabi summer day in 2019, Rim Obeid was chatting with her son, Rafi Abou Said, after he returned home from nursery, when she noticed a cluster of bruises on her body. A storm started brewing inside her as she thought those bruises were signs of physical abuse. But soon Rim found out that even gently holding Rafi left deep marks on his skin, which looked like bruises.
Soon, doctors, including paediatricians and haematologists, were consulted. Initially, doctors thought that there was nothing to worry about as reports turned out to be normal. Meanwhile, Rafi’s platelets were dropping constantly. His condition presented an unprecedented crisis in the family while Rim had to look after her newborn too.
“Rafi was a happy and healthy child. Things changed after we found out about the unreasonable bruises on his body. We stopped his nursery classes. We padded up the house to protect him from getting hit anywhere, or developing any internal bleeding,” Rim told Khaleej Times on International Childhood Cancer Day.
“We kept repeating his tests as Rafi’s platelet count kept getting lower and lower but nothing else was appearing in the results.”
Finally, a circulating tumour cell (CTC) test could detect signs of acute lymphoblastic leukaemia. Trying an option for treatment in her home country, Rim went to Lebanon along with Rafi, which unfortunately back then was embroiled in October revolution.
Rim, with the help of her parents, admitted Rafi to a children's cancer centre in Lebanon while her husband, who works in the IT sector, handled the newborn in Abu Dhabi.
“I had to leave my newborn baby as he was yet to get his official papers. My husband took care of the baby. Rafi got diagnosed (for cancer). It was on Christmas Eve of 2019. The hospital was decorated for the festival and Rafi thought he was in some winter wonderland of Santa Claus. Little did he know that it was a cancer centre. The hospital had made arrangements for blood platelet donations. They made a nursery for Rafi, who was in isolation for some 10 months. We returned to Abu Dhabi to provide him more comprehensive care, once Rafi’s immunity got boosted,” she said, adding that they took him to Burjeel Medical City and test results were convincing. Rafi became stable in a month or two, in the summer of 2022.
Amid all this, Rim switched her career to engage in making an all-inclusive nursery.
“I wanted every child to have a proper and sustainable education,” she said.
Meanwhile, Rafi got admission in The Pearl Academy, a British primary school, in Abu Dhabi, where extra care was provided to him.
“The nurse, teacher and head of the Foundation Stage were in direct contact with me. He was treated normally at his school. They customised activities for him,” said Rim about Rafi, who is now in FS 2.
Rafi, who is now undergoing regular check-up, is aware about medical issues and consequences met head-on by him, his mother and family since 2019.
“I was in isolation for a long time. It was not easy, and I missed playing with my friends. But my family always kept up my spirits. Good thing was that it came during Covid-19. So, everyone was ‘isolated’. The Covid-19 measures helped me big time. Also, people were more aware about health issues and precautionary measures,” Rafi said.
During chemotherapy, Rafi kept losing his hair and shaved it off. Rim too chopped off her locks to support him.
“I had long and thick hair. I cut it short and donated it to a teenage cancer patient. Since his father is bald, we told him that’s why he too has become bald. But we assured him that he has enough time to grow it back,” Rim said.
Rim shared another anecdote when Rafi was reluctant to take medication in the initial phases of the treatment.
“He was resistant to medication. So, we named the medicines as superheroes and energy pills. Even as the initial phase of the treatment was difficult for him, he soon realised there was no other option. He adjusted. But towards the end of the treatment, he grew tired.”
It was in such tiring times that the medical and mental support by Dr Mansi Sachdev, consultant paediatric haematology, oncology and bone marrow transplant, helped.
“Doctors like Mansi were very comforting. She was ready to listen and offer emotional support. She would receive my phone call even beyond her working hours. She never felt annoyed. She would always tell me to call her anytime.”
Rafi is now back at school and doing well in studies and other activities, including being an eco-representative in his class.
“We will continue to have monthly checks. He is leading the life as a normal child,” said Rim, who is now a nursery director, and someone who is actively supporting families to cope up with such situations.
Asked what he wishes to be in future, five-year-old Rafi underlined: “My dream is to become an oncologist or a policeman. I wish to serve society.”
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