17-year-old wonders about bone marrow donor; soon, she’ll get answers

April 18, 2014 | by

For most of her life, Southern California teenager Kayla Saikaly described herself as healthy, even very healthy. She played basketball. She never missed school with as much as a fever. Her worst childhood illness was nothing more than a cold.

Kayla Saikaly, 17, and her mother Samar fought her aplastic anemia together. They will meet the match who donated bone marrow for her lifesaving transplant at City of Hope May 9.

Kayla Saikaly, 17, and her mother, Samar, fought her aplastic anemia together. They will meet the donor of her lifesaving bone marrow at City of Hope on May 9.

Then, when she was 13, her nose started bleeding after a basketball game. That incident, coupled with unexplained bruising on her arms and legs, worried her mother. She took Kayla to a physician. A series of tests ruled out leukemia, but the Cerritos teenager was found to have aplastic anemia.

“It basically means your bone marrow is not producing the blood cells it needs to be producing – red blood cells, white blood cells and platelets,” explained Kayla, now 17. “Once those get thrown off, everything gets thrown off in your whole body. One day I was healthy, and the next, it was like everything was not right in my body.”

Her doctors at Kaiser Permanente considered a bone marrow transplant, but neither Kayla's mother Samar, father Riad or older brother Alex were a suitable match. So instead Kayla took medications to boost her cell counts. The drugs worked for a year and a half, but then they began to impact her kidneys, ultimately forcing Kayla to stop taking the medications. Eight months later, her blood cell counts began to drop again. Kayla needed a bone marrow transplant.

That's when she came to City of Hope. This time, a match was identified within two weeks.

“They said they found a perfect match for her,” said Samar. "We were very lucky. We were blessed.”

Good news, but a difficult road ahead

Finding that match marked the beginning of a grueling road to recovery – a road that will bring the teenager to City of Hope’s Bone Marrow Transplant Reunion on May 9 to meet the donor who made the recovery possible. More than 6,500 people attend the annual reunion, including bone marrow, stem cell and cord blood transplant recipients, their families and, of course, their donors.

“I was really thankful it wasn’t cancer, but it turns out what I had was just as bad,” Kayla said.

Before her transplant, Kayla endured 10 days of chemotherapy. After her transplant, she spent 40 days in the hospital. During that time, she said, she always felt sick and exhausted, dropping 22 pounds.

Ultimately, however, the news was good. A rash and a fever nine days after her transplant were followed by rising cell counts, meaning that the new marrow had engrafted. Her new immune system was taking hold.

Kayla said she missed the little comforts of home, like her own pillow – which was eventually brought to her. She missed her own TV and her DVR, which would have been handy considering how often she missed a favorite show.

“I know in the beginning, she was very, very scared,” her mother said. “All of us were. But she was the one going through the procedure and didn’t know what was going to happen – how it would turn out. But she was very strong, and when things were looking good, she was hopeful, positive and happy.”

Every day of her hospital stay, Samar stayed by her daughter's side. Riad drove out to City of Hope after work and stayed until it was time for Kayla to sleep. Although Samar remembers how difficult it was to see her daughter in pain – her mouth riddled with sores from the chemotherapy – and the long days when she wasn’t allowed beyond the door of her daughter's hospital room, she also recounts the good things. Among them were how helpful everyone was, from the nurses, physicians and therapists to the housekeeping staff, and how they made sure Kayla always understood every stage of her treatment.

Kayla never caught an infection, never showed a hint of rejection.

“She progressed very well, and she never gave up,” Samar said. “We went day by day. We didn’t think about two weeks from now or two days from now. Just today.”

Many teenagers dream of getting a car on their 16th birthday. Kayla just wanted to get home – and two days before her 16th birthday, she was able to leave City of Hope – get back to her own bed, her own pillow, her own TV, and see her father and brother more often. She even had a birthday party – of sorts. Her friends visited, brought presents and cake but waved to her through a window, staying outside because Kayla’s immune system was still too vulnerable.

Home, but not out of the woods

In fact, for her first 100 days home, Kayla stayed largely isolated inside her home on doctor's orders, and Samar stayed with her. Samar went only where her daughter went. When Kayla’s father and brother came home from work or school, they showered and changed clothes immediately. Her grandparents took care of the shopping, dropping the bags off before leaving.

Kayla had her own phone that only she used. She even had her own couch on which only she sat, with Samar covering it in clean sheets every day – taking every precaution to protect her daughter’s new immune system while it was growing stronger.

“We completely followed all the instructions from the doctors and nurses from day one,” Samar said. “You have to get up every day. You have to take a bath every day, no matter how bad you’re feeling. Food, it was hard to make her eat because her mouth was sore – but she tried. Medications were taken on time and not skipped. She was only 14, 15 and 16 when she went through all this – but everyone understood, our family and friends understood that this is what we had to do to make sure she got better.”

Kayla missed her entire sophomore year of school, though she studied at home with a teacher. She kept up with her friends on Skype. She celebrated a sweet 16-and-a-half party – still outside in the yard, and not in the house, but this time face to face with her friends. Everyone who wanted to see Kayla took any measure necessary to help prevent her from catching a cold or other infection, from meticulous hand hygiene to flu shots.

Now Kayla is 17, and her parents wonder what happened to her teenage years. She was just two months past her 13th birthday when her illness began – and Samar said she would have welcomed some of the traditional mischief that marks teenage years.

Kayla's since given up basketball, sticking instead to playing trumpet in the school band.

“I don’t think I could fight somebody else for the ball anymore,” she said – but it doesn’t get her down. She stresses positivity, and that she faces every day with a smile on her face.

That doesn’t mean she’s given up sports entirely. She coaches 5- and 6-year-olds in basketball, baseball and soccer. She says she loves teaching them the basics, and that the kids are cute, fun and just a little tough.

Questions that will soon be answered

Kayla has exchanged some anonymous letters with her donor. She knows that, at the time of the donation, the donor was a 23-year-old woman.

Her first question: Did it hurt?

“She said, ‘Probably nothing compared to all of your pain,’” Kayla said. “I wonder what she looks like. I wonder what she likes to do. I wonder where she’s from.”

Kayla will find out at City of Hope’s Celebration of Life Bone Marrow Transplant Reunion on May 9. She hopes to have the chance to show her donor around Southern California, checking out her favorite attractions like Disneyland. But mostly, Kayla wants to tell her thank you.

“Getting the bone marrow means everything in my life,” she said. “I wouldn’t be able to live my life and do what I want to do. I’m very grateful.”

 

**

Learn more about the Hematopoietic Cell Transplantation Program and the BMT/HCT reunion.

And watch Stephen J. Forman's explanation of the power behind City of Hope's BMT reunion