Beirut, Lebanon: As Suad mouthed the words to Twinkle Twinkle Little Star, her mother doted on her.
Later she sat on a hospital bed, sleeves rolled up, her tiny pigtails and full cheeks belying her recent illness, whose only hint was a faded scar on her neck from an IV.
Suad once had acute lymphoblastic leukemia, a common type of blood cancer among children. However, she is now all but cured. She still comes here regularly, to the Children’s Cancer Center Lebanon for blood tests to make sure the illness does not return.
About 80 percent of the center’s patients have been cured of cancer, just like Suad. But funding challenges are growing in a tough economy and amid the rising number of foreign patients visiting the center, particularly Syrian children fleeing the conflict next door who lack insurance.
The CCCL, founded in 2002, is affiliated with the American University of Beirut and St. Jude Children’s Research Hospital in Tennessee. The center relies on donations to cover the entire cost of the children’s treatment.
"Most of the parents cannot afford the treatment," said Hana Choueib, CCCL’s general manager.
The center’s annual budget is about $12 million. But fundraising is challenging due to Lebanon’s tough economic situation, while the cost of treating the children is rising as the center accepts more non-Lebanese patients.
Lebanese patients are more affordable to treat because the government helps pay for part of their medical bills.
That addition is crucial because the cost of treating each child at CCCL is about $50,000 a year, and on average, treatment lasts about three years.
The center has 250 patients who are fully enrolled and can accept a maximum of 90 new patients per year. About 30 percent of the current patients are non-Lebanese.
The type of leukemia that Suad had is the most common cancer seen at the center. Brain tumors are also common.
Hassan al-Solh, CCCL’s medical director, said the treatments encompassed chemotherapy, radiation and surgery, as well as psychological care to help children and their families cope with the onset of illness.
And for children who have no hope of survival, the doctors provide them with "palliative care" – a form of treatment that emphasizes pain relief and helps children and families cope with the idea of dying.
Treating children with cancer has its challenges, both medically and psychologically, with patients having to come to terms with life-threatening illness at such young ages.
"Children are very smart," Solh said. "We underestimate their ability to comprehend at a very young age what they are going through."
Through the Internet, many children have access to outside sources of information on their disease. The center’s approach is to keep parents in the loop as to exactly what is going on, from the diagnosis to the treatment plan to the chances of survival.
But the children themselves also need to know, Solh said.
"If they don’t know, they don’t trust you or trust their own family," he said.
For children between 5 and 7, doctors will usually tell them that they have cancer and will likely try to explain it using illustrations. For teenagers, it is easier to tell them about the disease, but harder for them to accept it.
"This is the period of their life when they have the issue of their image, of development of their personality, and this will impede the process," Solh said.
Solh says the high survival rate – 80 percent – is a result of advances over the last 30 years in cancer research and improvements in radiation and chemotherapy treatments.
But a large part of it is also teaching families how to come to terms with a loved one’s illness.
"You are talking about a child who is healthy and turns out to have a catastrophic disease," Solh said. "In the beginning, there are major difficulties in the acceptance of the disease by the family and by the child."
But the wide dissemination of knowledge about cancer on the Internet in particular has almost demystified the illness.
Sharifa Hussein, Suad’s mother, said those first few days were indeed gut wrenching.
"For a long time at the start, we couldn’t accept it," she said. "We used to weep at first, saying will our child die today or tomorrow?"
But with the treatment and the improvement in her daughter’s condition, the family adjusted to the reality. The results consistently showed the cancer cells disappearing, and doctors encouraged them to persevere.
"Right now, she does not have a single problematic cell in her body," she said.
With time, families come to realize there is a plan for treatment and that the majority of children recover and then they become an active part of the treatment.
But the intimate contact over such long treatment times can pose a challenge for staff, who develop powerful relationships with the children, even those who don’t survive.
"It’s tough sometimes," said Rola Ajjawi, a nurse at the center who has worked there for 10 years.
Ajjawi gave the example of a young patient, now in her early teens, who over 10 years was treated for acute lymphoblastic leukemia and has relapsed three times. Doctors say that this time there is no hope for her recovery.
"She is almost like my daughter," Ajjawi said.
Still, she often tries to instill hope in her patients.
"I try to make it easy, say that there’s a treatment, and if you take it, hopefully with the help of treatment and God, we will beat it," Ajjawi said. "With teenagers, you can’t deceive them because they go and read things on the Internet."
She said that she now tries to maintain a bit of distance outside the center from the families, to avoid being overwhelmed emotionally if a child does not survive.
She added that there were many happy cases, though she tended "to remember the ones who are gone."
"It’s good to see them healthy again, getting older, taller, gaining weight and growing their hair."
And for parents who discover their children have cancer, the families should stay strong and gird themselves for the long haul.
One of the hardest things is the toll that long treatment can take on families. Ajjawi said she had seen many couples turn on each other as a result of the stress.
"They have to stay strong together, not each one alone," she said. "They both have to be involved."
© The Daily Star 2014.Mar 2014