For 7-year-old Baha, an exciting, extended trip across the world to live with his grandparents and learn more about his Palestinian heritage was cut dramatically short when a visit to his doctor in Jerusalem for allergies turned into something much more: acute myeloid leukemia (AML), an aggressive form of cancer that starts in the bone marrow. It is the second most common form of leukemia in children after acute lymphoblastic leukemia (ALL,) and it requires quick, aggressive treatment.
“Baha was having allergy problems, and there was a swelling in his nose,” explains his mother, Linda. “We had taken him to a few doctors while we were still in Orlando, before the trip.”
Doctors had recommended over-the-counter antihistamines and sent the family home. But an alert doctor in Jerusalem knew Baha didn’t look right and ordered blood work. The distressing results were faxed to Linda’s brother, Assad, back in Florida. On the recommendations of both the Palestinian doctor and Assad, the blood work was immediately forwarded to All Children’s Hospital Johns Hopkins Medicine (ACH JHM). Our pediatric hematology-oncology program is a regional and national leader in pediatric oncology care, and a referral of choice in Florida. It was the only choice for Baha.
The staff at All Children’s jumped into action and told the family to find a way to get Baha to the hospital within 24 hours. It would be no easy task for parents toting three small children across the world – one of them terribly sick.
“The doctors took it seriously right from the start. It was overwhelming,” recalls Yazan, Baha’s dad. “It took two days. We had to first get him to Jordan to wait for the flight, and that’s when his fever spiked.”
“Baha was diagnosed preliminarily in Jerusalem with AML and stopped in Jordan to get Allopurinol to protect his kidneys until he arrived at All Children’s,” explains his oncologist, Nanette Grana, M.D.
“They told us he wouldn’t have survived the trip without it,” Yazan adds. “The hospital was on the phone with us the entire trip, offering to contact the American Consulate. Whatever it took to get Baha in for treatment.”
Stress was high, and the family was beyond the deadline that All Children’s had set. Exhausted and terrified after their long journey, they landed in Tampa and drove immediately to the emergency center.
“All Children’s was ready for us,” Yazan remembers. “In 10 minutes we were checked in and heading up to the seventh floor,” where the Vincent Lecavalier Center for Pediatric Cancer and Blood Disorders is located.
“The minute I knew he was safe, I collapsed,” Yazan adds. The family had some idea what it would take to heal Baha,but they were awed by the support and the treatment they received by the doctors and staff at All Children’s.
Providing Care at All Levels
“Dr. Grana came in and explained to us what we were facing,” Yazan says. “The doctors, nurses … everyone there took the time with us to explain everything. The doctors actually got on their knees when they talked to my son – to be at his level. I can’t explain what that means to me.”
His wife agrees: “Dr. Grana is like an angel from heaven − Baha loves her,” Linda says. “There are no words to describe the doctors and nurses in this hospital. There is a team of doctors talking with you and explaining every step of the process. We couldn’t be more grateful.”
Baha had surgery to insert a port that would deliver his chemotherapy and the family prepared for what would be a six-month stay at the hospital. No one in his family was a match for a bone marrow transplant, typical treatment for this type of cancer, so Baha instead faced five cycles of chemotherapy. Each cycle meant seven to nine rounds of the unforgiving but life-saving drug.
The entire family was impacted by Baha’s plight. “We lived in that hospital, all of us. Thank God for Ronald McDonald House,” says Linda. Her 4-year-old daughter, Dalal, and her 11-year-old son, Aladden, also spent their summer in the hospital – they didn’t want it any other way.
“Aladden didn’t think he should be having fun while his brother was sick,” Yazan explains. “He was the one most affected by
Baha’s illness. The hospital became our home, the nurses and doctors are family. Now the children go to the seventh floor for hugs and kisses from the nurses. Baha would rather come here than go to Disney World!”
Meeting a Family’s Needs
Six months is a long time to put a family’s life on hold. Things happen. Money is tight.
“The hospital helped us in ways I could never imagine,” Yazan explains. “Our other kids eventually needed to go back to school. The car broke down making all of those long trips back and forth to Orlando. I didn’t mention it to anyone, but our case manager saw my rental car and before I knew it she was calling around to help me get it fixed. They even arranged for gas cards and Sunpass cards to help with travel expenses.
“When you are dealing with All Children’s, everything is taken care of,” Yazan continues. “You don’t have to worry about anything. You just focus on your son. With us, there was no talk of insurance or money. It was just, ‘Let’s get him healthy.’ That’s the priority.”
It took five spinal taps, two surgeries, five cycles of chemo and just over a year, but Baha is now a healthy boy in second grade. “These days he only goes to the clinic once a month for blood work and once every two months to cardiology to get his sweet little heart checked,” says his dad.
This past September was Baha’s first anniversary of being cancer-free. He still doesn’t speak much about his life-threatening illness. In fact, Baha was only seven when diagnosed, so his family never used the words “cancer” or “leukemia.” They wanted to keep it light and teased him that he had a “chicken” inside him that needed to be removed. Baha never replied, so imagine his mother’s surprise when one day the nurses mentioned the questions he’d been asking them about his disease. His mother said, “Baha, why didn’t you tell us you knew about cancer?” and he replied, “I didn’t want you to think I was sick!”
“Can you imagine?” says his mother, shaking her head. “He was worried about us!”
These days, perhaps not surprisingly, Baha tells his dad he wants to be “a cancer doctor at All Children’s, nowhere else.” There are, after all, still “chickens” to be dealt with.
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