September 1, 1999
Dear Dr. Lange:
In August ’97, Alicia, my 7-year old daughter, began a difficult medical journey that still continues today. In short, she was diagnosed with a tumor of the posterior fossa (brainstem). She underwent a 10-hour neurosurgical tumor resection. Near the end of the procedure, she developed a serious coagulopathy (disseminated intravascular coagulation) that threatened to end her life. Surgery was terminated prematurely and hematologists were summoned to arrest this peracute crisis. Following approximately 3 hours of uncontrolled hemorrhage, miraculously, she clotted.
Although life-saving, the blood clot subjected the delicate brainstem to pressure-induced trauma. As a result, Alicia lost total motor control of all voluntary muscles. For the next 2 months, she could not smile, frown, move, talk, eat, or walk. Her convalescence was further impeded by the need for 4 additional surgeries: a gastrostomy for installation of a feeding tube and 3 shunt procedures for control of intracranial pressure. Finally, in early November, her motor skills gradually began to return. She began rehabilitation therapy and within 6 months (May ’98) substantial progress was realized. Although ataxic, she could now walk with assistance and aside from the slight, generalized left-sided weakness and a left-sided visual defect, all other bodily functions appeared adequate.
Slight but definite neurological improvements continued through the end of 1998. Early in 1999, her recovery seemed to plateau. By springtime, some nonspecific regression was noted but the doctors didn’t seem overly concerned as CAT and MRI detected no abnormal changes. Alicia’s condition, however, continued to deteriorate: stumbling and falling occurred frequently, she tired easily and her vision became further compromised. In late July, she experienced incapacitating headaches that occasionally resulted in periods of non-responsiveness. She was hospitalized in early August. Another MRI of the brain and brainstem was conducted and this time, doctors were able to identify a fluid-filled, granulation tissue cyst on the brainstem. Surgery to remove the cyst was scheduled for Monday, August 30.
On August 20, Alicia was informed of the treatment plan. She adamantly opposed surgery and pleaded for its cancellation. She reminded us that the original surgery nearly proved fatal. She was scared and was completely content to endure the debilitating symptoms. Neurosurgery recommended that Alicia consult with the hospital’s child psychologists.
Meanwhile, back at work, my Bayer colleagues were extremely concerned. I returned to the office that evening and found, on my desk, a note and a box from Dr. Arthur:
“. . . Meet “Josh.” Josh’s story, written by a veterinarian, is intended to provide comfort to children who are facing surgery or a hospital stay. Bayer has provided Josh’s creator with some financial assistance for this project. I hope Josh can help Alicia. . . ”
That night, at bedtime, I introduced Josh to Alicia and asked her if I could read his story to her. Alicia readily identified with Josh’s situation: doctors, blood work, examinations, radiographs (like a mini-MRI), I.V. fluids, anesthesia, AND SURGERY! As I continued reading, I could see that Alicia was holding Josh tighter and tighter: Suddenly, Josh’s creditability was innocently challenged: Josh’s surgery was over and Alicia asked if he had a scar from the incision. I turned Josh over; she closed her eyes (she didn’t want to see it) and extended her finger. I placed her fingertip on the midseam. She moved her finger over it, back and forth. She opened her eyes and visually inspected the “scar”. Apparently satisfied, she gave Josh another hug. JOSH HAD PASSED THE TEST! From that point on, Alicia no longer resisted surgery. She was still scared but Josh convinced her that it’s normal to be scared, that he and her family truly love her, that he would be by her side throughout surgery and that she would be OK! Alicia’s appointment with the child psychologists was no longer needed and was subsequently cancelled. On the day of surgery, Josh accompanied her to the hospital. The nurses put a hospital ID band around his paw and decorated his ears with happy stickers. She was clutching Josh as she was transported down to surgery and Josh remained next to her in recovery, in ICU and in her hospital room. In addition, Josh was correct—surgery proceeded uneventfully and Alicia is OK!
Thank you for all that you have done. Your contribution to Alicia’s well-being is immeasurable and I am forever grateful.
Daniel K. Ciszewski