Abu Dhabi: Battling cancer can be an isolating experience for many. But for little Lulu and her family, the journey has proved to be an intense bonding experience.
Having lost two other daughters to unknown ailments in their infancy, the fight to give four-year-old Lulu a chance at survival has united her parents in a way that can often prove to be the breaking point for many families. The Egyptian expat family has gone from emergency rooms in Dubai to hospital wards in London, and with the cancer now in remission, they are keen to share their experiences in the hope of helping other families in a similar position.
“The most important thing that we learnt is that you have to take problems one at a time. Every single day, you wake up to a new challenge and if you try to tackle it altogether, you will simply be overwhelmed and feel broken,” Samy Hasanin, Lulu’s father and a 37-year-old software engineer, told Gulf News.
“When we lost our other babies, it felt like the end of the world, but my wife and I knew we had to stay strong for our children. And in a way, our Lulu has been our strength through it all,” he added.
Indeed, the family’s struggle reads like an inspiring tale for the ages.
First brush with tragedy
A little more than five years ago, Hasanin and his wife, Asmaa, a homemaker, lived in Bahrain, and were parents to two children: Omar, now nine years old, and Asma, their second-born child. When Baby Asma was six months old, she acquired what appeared to be a viral infection, and was treated for it in hospital.
After being discharged, Asma developed breathing difficulties. She was once again hospitalised, but complications ensued and the little girl passed away before she turned one.
Lulu brings strength
The couple somehow pulled through, and were blessed with Lulu after about a year later, in September 2018. Her arrival gave her parents immeasurable strength.
As she grew and enjoyed what appeared to be a very first year, Hasanin and his wife welcomed another baby girl, Farida. To their despair, Farida became vomiting when she was about five months old. It looked like dehydration, but even as they sought treatment, the baby developed renal failure and passed away.
Dealing with grief
“Both times, it felt like everything was over, and I did not want to be alive myself. After all, we are not meant to bury our own children,” Hasanin remembered.
“Time does not heal all wounds really. You just find other things to occupy yourself with, and for me and my wife, it was our living children — Omar and Lulu,” Hasanin said.
Then, one regular morning, Lulu began crying in strange manner after she awoke, and then threw up.
“We had never seen her sick before and we though it could have been a concussion. So we rushed her to the emergency room,” Hasanin remembered
Looking back, the father said it was the best decision they had ever made. Lulu had been hypoglycaemic, and the absence of prompt treatment could have left her with irreparable damage.
Worried about their little girl, the couple began seeking answers, even as their daughter suffered another hypoglycaemic episode a few months later. Some doctors suggested a genetic disorder but could made no diagnosis.
In 2021, Lulu appeared to be suffering from a viral infection, and was having trouble breathing normally.
“She was wheezing in certain positions, and although this was at the peak of COVID-19, we rushed her to the emergency room. Even after she was treated, I insisted on another opinion, and on May 29, 2021, after an X-ray and ultrasound, we were told she had a mass in her mediastinum, the area between her lungs,” Hasanin said.
Scared and uncertain
“Having lost two girls already, this felt like a devastating blow, and we were filled with fears. Would she survive? There was also the pandemic, and I was worried she might not get the care. It was so scary for us, because we were told that the mass was pressing on her blood vessels, compressing her airways, and even pushing her heart,” he added.
At this early stage, Hasanin said he and his wife felt blinded by the uncertainty of what would happen next, even as doctors diagnosed Lulu with T-cell lymphoma, a rare type of cancer that begins in white blood cells called T cells and impairs the body’s germ-fighting immune system.
“We had to stick together once again to help our daughter” Hasanin recollected.
Lulu was hospitalised for treatment, and underwent two rounds of chemotherapy for nearly two months. At the end of it, the cancerous mass could no longer be detected. But there was more treatment required in order to ensure that the cancer did not return.
“We had to continue treatment, but Lulu had presented with a lot of different concerns. And the doctors wanted to be extra careful, and have her treated by specialists who had experience with such complicated cases,” Hasanin said.
The family chanced upon Great Ormond Street Hospital (GOSH) in London, famed for its care of seriously ill children. As Lulu underwent maintenance chemotherapy at home, her parents figured out their insurance and work-from-home plans.
“My work was very understanding, and I can do much of my job remotely. We also wanted to ensure that Omar continued to have as much of a normal life as possible as we worked to treat Lulu,” Hasanin said.
The arrangement that they settled on saw Hasanin travel to London with Lulu, while Asmaa stayed on in Dubai with Omar to continue his schooling. There, Lulu received her last block of chemo treatment, and also underwent other testing to ensure that she would remain healthy overall.
Hasanin said his daughter enjoyed being in a new city, and understood that her mother and brother would be available over video conference.
“She is very much a daddy’s girl, and she enjoyed being in a new place. We did not get out of the hospital much when the treatment was ongoing, but when we were eventually able to, she was happy,” Hasanin said.
“Given how hospitals had always been associated with illness for Lulu, she tends to treat the medical professionals as hostile individuals. But she slowly warmed up to the play team at GOSH, and began to get excited whenever she saw them. This truly helped her get comfortable,” he added.
The duo spent about three months in London for treatment, and Asmaa and Omar were able to join them during the term break.
Since then, Lulu has been back in London three times to continue her treatment. Her case is complicated by the hypoglycaemia she faces, and some lesions that have developed in her brain. In addition, her parents’ history with child loss has prompted much caution and care during Lulu’s treatment.
Lulu is now four years old, but as a cancer patient, the little girl has missed a number of developmental milestones common for children her age. Hasanin said her mobility is still limited, and she is not yet able to communicate how she is feeling in words.
Learning about the world
“With that being said, it is a joy to see her learning. She is becoming familiar with colours, and she does her best to tell us how she is feeling. For instance, she associates the Arabic word for cold — ‘baarid’ — with pain, as she learnt the word when a cold breeze in London made her feel uncomfortable,” Hasanin said.
From time to time, whenever she is seeking comfort, Lulu will stick out her finger and indicate pain. A kiss from her father immediately soothes her.
“My daughter has been our strength, and although she is battling such a scary condition with multiple complications, she finds joy in little things. She is very fond of animals, and adores the colour pink. We are also happy to see her learning new words,” Hasanin said.
The challenging experiences have helped the family forge a strong bond with one another, with nine-year-old Omar also being very conscious of his sister’s needs.
“We have all changed for the better. I have developed so much empathy and patience, and am a completely different man than I was two years ago. For instance, I have had to learn how to insert a nasogastric tube with as much gentleness as possible, to persevere through the pain to help my daughter when she needs,” the father said.
“I can also see how much our son has grown. He is wise beyond his years, and shows so much compassion for his sister, sharing his devices, feeding her occasionally, and even learning about cancer and cancer treatment,” Hasanin said.
For now, Lulu is continuing her maintenance medication at home, and will soon fly to London for her next round of tests and treatments.
While they would not wish a similar fate on any other family, Hasanin and Asma said they sympathise with other families in a similar fate.
“When we see parents learning of such a diagnosis, we remember how hard it was for us and I feel for them. If we were to give them some advice, we would urge them to treat problems one at a time, and to ask for help when needed,” Hasanin said.