Fernando Whitehead: Overcoming Leukemia Thanks to CAR T–cell Therapy

Age: 16Rosedale, New York

A message from Natalie Whitehead, Fernando’s mother

My son Fernando was 13 when he was diagnosed with acute lymphoblastic leukemia (ALL) in May 2017. After four months of aggressive chemotherapy failed to control the leukemia, his doctor suggested we consider a clinical trial testing a new type of treatment called CAR T–cell therapy. The treatment [now called tisagenlecleucel (Kymriah)] was a miracle for Fernando. He has been in complete remission with no evidence of the disease for more than two years, and he enjoys playing video games and hanging out with his friends.

I’ll never forget the day that Fernando’s experience with leukemia started; it was March 28, 2017. He loved playing sports; he played lacrosse and basketball, and he was thinking of starting to play soccer too. That day, when I picked him up from lacrosse practice, he was limping so badly that I took him to the pediatrician. An X-ray showed nothing concerning, so the pediatrician said he thought it was a sprain and that Fernando should take ibuprofen for the pain.

Over the next few days, Fernando’s pain got worse and by the following week he couldn’t walk. Neither the doctors at the emergency room we visited nor the orthopedic specialist I took him to could figure out what was wrong.

It was finally the rheumatologist that Fernando was seeing because he had an autoimmune disease called uveitis, which affects the eyes, who suggested the MRI that led to the leukemia diagnosis. The MRI showed some areas of concern and I was told to pack a bag and take Fernando straight to the emergency room.

Fernando was admitted to the hospital on May 1. He did not leave that hospital until August 24.

The initial blood work done at the hospital did not find signs of leukemia, but a bone marrow aspiration and biopsy showed that he had ALL.

When I told Fernando, he seemed almost relieved to have finally found out what was wrong. By this point he couldn’t walk and was in so much pain that even morphine was not helping him.

Fernando’s cancer was difficult to treat, so his oncologists put him on an aggressive chemotherapy regimen. It had lots of terrible side effects, including causing such severe lung and breathing issues that Fernando had to be admitted to the intensive care unit and stop the leukemia treatment.

Even though the chemotherapy was resumed after Fernando left the intensive care unit, he never went into remission. It was at this point that his oncologist suggested that we consider the CAR T–cell therapy clinical trial, which was being conducted at Children’s Hospital of Philadelphia. I researched the trial. Everything I read about it was positive, and I felt that it would help Fernando.

Fernando was among the last group of patients to be part of the trial. He received the CAR T–cells in December 2017. The difference between CAR T–cell therapy and chemotherapy was unbelievable. The chemotherapy had made Fernando so sick he could not leave the hospital. After receiving the CAR T–cells, Fernando was bouncing around, like the Fernando before leukemia.

The CAR T–cell therapy was a miracle. Since he received the treatment, there has been no sign of Fernando’s leukemia. He has a checkup every two months during which the doctors not only look to see if the leukemia is still gone, but also give him intravenous immunoglobulin because his immune system has still not recovered after the chemotherapy that he had to receive in order to get the CAR T–cells.

Fernando does have long-term effects as a result of his chemotherapy treatment, including asthma, low bone density, and problems with his short-term memory. Because of the bone density issue Fernando hasn’t been able to return to playing sports, but he is enjoying life and we are thankful for each and every day.

This process with Fernando’s cancer has shown me how important it is to be joyful. I also feel that the treatment Fernando was able to get through the clinical trial in Philadelphia should be available to everyone. I don’t think color, ethnicity, or money should be a factor.