Barbara, Hodgkin Lymphoma Caregiver

Before my son David Saltzman returned to Yale for his senior year in September 1988, I noticed he had a dry cough. Since David had a history of bronchitis as a child, I didn’t think it was too serious, but urged him to see a doctor as soon as he could to have it checked out.

The next month, David called me from his doctor’s office at Yale — he had just been diagnosed with Hodgkin lymphomaOne of the two major types of lymphoma that begin in the lymph nodes and tissues of the lymphatic system. All other lymphomas are classified as non-Hodgkin lymphomas. Hodgkin lymphoma has characteristic cell, the Reed-Sternberg cell, seen by the pathologist under the microscope when looking at the tissue from the biopsy.. The unexpected diagnosis took our family completely by surprise. That night, my husband and I flew to meet David at Yale.

We had every confidence in his doctor, who was medical director of Yale Health Services, on the Yale Medical School faculty and an oncologistA physician who specializes in treating cancer. experienced in lymphoma treatment. The doctor started David on chemotherapyTreatment with drugs to stop the growth of rapidly dividing cancer cells, including lymphoma cells. immediately. David didn’t let chemo and later radiation get him down. He continued with his studies as an art and English major, did cartoons for two student newspapers, acted as a tour guide and worked endlessly on his senior project, an illustrated children’s book called The Jester Has Lost His Jingle. Drawing The Jester’s colorful, upbeat illustrations and writing its whimsical rhyme kept his spirits up throughout his treatment.

“David called me from his doctor’s office—he had just been diagnosed with Hodgkin lymphoma. The unexpected diagnosis took our family completely by surprise.”

David was in remissionThe absence of disease. Remission does not necessarily indicate that a person is cured. Patients may have complete or partial remission. when he graduated with high honors in May 1989, but his doctor suggested that he have his bone marrowSpongy material found inside the bones containing stem cells that develop into three types of cells: red blood cells that deliver oxygen to the body and take away carbon dioxide; white blood cells that protect the body from infection; and platelets extracted immediately after graduation in case he needed a bone marrow transplant. A month later, he relapsed and began the arduous bone marrow transplant process.

Throughout his treatment, David maintained a positive attitude, buoyed by working on his lively picture book about laughter. One day during an x-ray appointment at the hospital, he met two 7-year-olds with cancerAbnormal cell growth that cannot be controlled by the body's natural defenses. Cancerous cells can grow and eventually form tumors., visibly sad. To cheer them up, he told them about The Jester & Pharley and their search for laughter, then drew each a picture of The Jester & Pharley to take home. They immediately began to laugh and smile. For David, this was the first and only time that he actually saw how The Jester Has Lost His Jingle could lift the spirits of anyone who read it.

Before David died in March 1990, our family promised him that his book would live. Five years and a second mortgage later, we published The Jester Has Lost His Jingle with an Afterword by Maurice Sendak (Where the Wild Things Are). The book became a New York Times best-seller and has become the inspiration for our nonprofit Jester & Pharley Phund. Our bilingual English/Spanish edition of the book will be reprinted this year, and we are developing an English/Japanese bilingual edition that has been endorsed by Japanese First Lady Akie Abe.

“It is important for those diagnosed with lymphoma and their families to maintain a positive attitude, stay informed and stay connected with others.”

It is important for those diagnosed with lymphoma and their families to maintain the kind of positive attitude that The Jester imparts, stay informed and stay connected with others. There was no organization like the Lymphoma Research Foundation available to David when he was diagnosed 27 years ago, but he always felt the need for one. LRF’s Lymphoma Support Network (LSN) pairs those coping with lymphoma with volunteers who have had similar experiences to answer questions and provide support. It is an excellent program that helps so many find comfort, strength and information.

I believe the uplifting message of The Jester Has Lost His Jingle complements the Foundation’s LSN by giving children and adults of all ages the resilience, hope and laughter they need to cope with their illness and treatment. As one cancer survivor, now 38, told me recently, “Your son has been speaking to me for the last 19 years. I can’t begin to tell you how much this book has meant to me, and continues to inspire me and my family to this day… thank you and David for giving me the strength I needed to survive.”