This Star Won't Go Out

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I first met Esther and her family in August 2007 at Boston Children’s Hospital as they hoped to find assistance in finding a remission and cure. In general, the long-term prognosis of pediatric thyroid cancer is quite good with up to a 90 percent survival rate at twenty years. But Esther’s case was different; she presented with more extensive disease. Her cancer had spread throughout her body and had resided in the lymph nodes in her neck and lungs. A team was assembled, including a thyroidologist, (doctor who specializes in thyroid cancer), pulmonologist (doctor who specializes in lungs), endocrine nurse (nurse who assists in hormonal disorders), and social worker (specialist who helps with financial and emotional hardships and adjustments), to assess Esther’s medical status.

Typically, patients with thyroid cancer require visits to the hospital every six to twelve months, but Esther needed to be seen much more regularly. Our first approach was to administer high doses of radioactive iodine (radiation) to target the disease in her lymph nodes and lungs. Not only did this require an extremely restrictive diet, but it also necessitated further isolation from friends and family. Although Esther began to respond to therapy, both she and her family began to experience many additional challenges associated with her treatment. Esther was no longer able to attend school regularly due to the number of doctors’ appointments. The amount of medications she was required to take on a daily basis grew dramatically, and the stress on her body resulted in daily headaches, nausea, and further weight loss.

I was cautiously optimistic about Esther’s response to therapy until June of 2008 when she began to take a turn for the worse. She was no longer able to breathe on her own without the assistance of oxygen, and her weight loss was quite striking. Esther very much resisted the idea of having a tube placed in her stomach to help with nutrition and medication delivery, but after an extensive discussion about fashion forward ways to hide the G-tube, we finally agreed to have it surgically placed. Then, in October 2008, Esther arrived in the ICU with a major setback after experiencing two episodes of bleeding from her lungs. Esther did not tolerate the sedation, and moving forward, she was quite adamant about mind-altering medications.

After her admission to the ICU, I had an extensive discussion with Esther and her family in regards to the next steps of her care. We decided to consult with the Dana Farber Cancer Institute and pursue a new, experimental therapy. Although it would not be curative, it could potentially provide more quality time for Esther. The risks and benefits were reviewed with both Esther and her family, and although the decision was difficult (further bleeding into her lungs was a potential outcome), Esther was willing to trial this new therapy. During this transition, she required additional nursing support at home and was no longer able to sleep in her own room. The family transitioned their dining room into Esther’s room as she could no longer walk up and down the stairs.

Over the following eighteen months, Esther fought valiantly and was transitioned between two different experimental therapies. During this time, her oldest sister became an outstanding caregiver and spent a lot of time transporting her to and from the hospital. Esther developed many side effects, including hair loss, fluid overload, rashes, nausea, and headaches, but despite these, she was always positive. Over the summer of 2010, Esther developed kidney failure. Throughout all of her medical experiences, Esther was greatly involved in her medical decision making.

I felt blessed to be present on a warm summer night in August of 2010 when Esther peacefully passed away in the presence of her family due to complications related to her thyroid cancer.

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I was asked to contribute a small portion of this text to the dedication of Esther Earl. The medical piece, although a painful reminder of a beautiful life lost, is a part of my livelihood as a physician. I had the great fortune of meeting and caring for Esther and her family. I also faced the difficult task and associated challenges of explaining her long-term prognosis, which was accompanied by great anxiety, shock, and unexpected disappointment.