Of the many reasons behind my decision to participate in the Pan-Mass Challenge on behalf of my patients, perhaps the one that is most important is my desire to acknowledge and repay the gift that these children and their families give to those of us who care for them. Of all of the children I have encountered thus far in my young career, none represents that notion better than Jackie. This beautiful little girl came to the pediatric neuro-oncology program in the summer of 2004 after having been diagnosed with an exceptionally rare brain tumor, a primitive neuro-ectodermal tumor (PNET) of the brainstem.
Tumors of the brainstem in children are more commonly gliomas, and are very difficult to treat because their location makes surgery extremely risky. In fact, many times the diagnosis is made based on the results of MRI scans because of the high risks involved with biopsy. When Jackie began to have symptoms of weakness on her right side and difficulty walking, her parents took her to her doctor, and shortly thereafter her tumor was discovered on a scan. Rather than accepting the assumption that this was a brain stem glioma, her parents bravely opted for a biopsy that revealed that her tumor was the less common PNET, and brought her to the Jimmy Fund Clinic for treatment. Because of the nature and location of her tumor, we proposed a very aggressive chemotherapy regimen, one that required several long hospitalizations and involved unpleasant side effects. Despite these challenges, Jackie tolerated the treatment and as her weakness began to improve her sense of humor beautiful smile soon reappeared.
Despite two cycles of aggressive chemotherapy, scans showed that Jackie’s tumor continued to grow. Confronted with this difficult news, her parents made the equally brave choice for continued therapy that could be administered at home so that Jackie could enjoy her home, her sister, and her family. Over the next two months Jackie was able to enjoy life, including a very special Make-A-Wish trip to Disneyworld, and her parents were able to enjoy her laughter and smiles. Very shortly after her trip she developed more advanced symptoms and two weeks later she died peacefully in her parents arms, surrounded by her family.
Jackie was my one of my very first brain tumor patients, and she was also my first patient to die from her disease. The experience had a profound impact on me both personally and professionally. Many of the lessons that I learned in caring for her continue to inform me in the way I care for patients today. I remember clearly being in the clinic one morning while Jackie was having her port-a-cath accessed in order to draw her blood. As I stood in the corner of room I watched the anxiety and fear of the needle used to access the port melt away only to be forgotten. Her look of fear was almost instantly replaced by a broad smile and a laugh as she insisted on being able to push the plunger of the syringe used to flush the line. I had never witnessed this before, and while it is bittersweet that a child should take pleasure in flushing a central line, this very moment has come to represent for me the resilience and remarkable strength of children with cancer. As a result, I frequently tell this story in order to reassure the parents of other patients who are starting treatment that their child will continue to smile, laugh and play, even under the most trying of circumstances. In addition to lessons learned from Jackie, her parents taught me a great deal about the relationships that can form between doctors and their patients and families, and the remarkable strength of the bonds that can grow between people who under other circumstances would otherwise be strangers.
Because I met Jackie at the start of my training, the lessons that I learned, both medical and personal, in caring for her have helped shape the way I care for subsequent patients and their families. As a result her life, even though it was tragically brief, has touched and helped countless others. It is in thanks for all that she taught me, and in thanks to her parents for allowing me to care for her, that I am exceptionally proud to ride in her honor.
Please click here to make a donation today in honor of Jackie’s life and her fight with cancer. Your donation will directly support programs in pediatric neuro-oncology at the Jimmy Fund Clinic and the Dana-Farber Cancer Institute.
