Melissa's Story 13thirtyMelissa’s Story

In April of 1998, Melissa was a typical, high school senior preparing for the Senior Ball, graduation, and life’s many opportunities when she was diagnosed with Myelodysplastic Syndrome, a rare bone marrow malignancy. She had just been accepted to the University of Pennsylvania where she dreamt of pursuing a career in advanced practice nursing.

Sadly, Melissa Marie Sengbusch died on June 22, 2000 at age nineteen after living with cancer for two years. She became yet another statistic in the tragedy we know as childhood cancer. The way in which she lived life and ultimately faced death is a story of extraordinary determination and celebration of the human spirit.

Myelodysplasia strikes fewer than five in one million Americans each year. Statistics continue to be discouraging with survival rates averaging only about twenty percent. Following diagnosis, Melissa was no longer typical but was determined to minimize its impact on her life. Burdened with weekly blood tests and disquieting uncertainty, she told no one about her illness as she continued to finish high school. She wanted no special treatment, no extra accommodations. She just wanted to be a normal kid living a normal life.

flatbed_211With deep disappointment, Melissa was forced to defer enrollment at UPenn and began intensive chemotherapy on July 28, 1998. Despite the debilitating effects of her treatment, Melissa’s spirit never faltered, her focus never blurred, her passion for living never dulled. She was determined to stay ahead of the game. Over the course of her treatment, while undergoing aggressive chemotherapy, total body radiation and other serious medical procedures, she enrolled in five courses at the University of Rochester. Weakened by weight loss, nausea, and other side effects, suffering the insult of hair loss and the trauma of brain seizures, she would complete all courses with a 4.0 GPA.

Her chemotherapy continued through December 1998. By February 1999, Melissa was officially declared in remission but the celebration was short-lived. Within six weeks, a biopsy showed she had relapsed and bone marrow transplant was now the only viable option. A desperate donor search, including a local donor drive, was begun – to no avail. Time was running out but Melissa was still living her life. Knowing she would once again lose her hair, she laughed and said,

flatbed_13“If I’m going to lose it again, I may as well see how I look as a blond,” and bleached her hair.

A cousin was finally identified as the best possible donor even though the match was far from perfect. The transplant was scheduled for June 21, 1999 with sobering expectations that Melissa would suffer serious complications due to the unmatched donor. To everyone’s delight, Melissa breezed through transplant, leaving the hospital in three and a half weeks instead of the anticipated six to eight. She was going to be well. She was sure of it.

However, a cerebral infection resulted in a severe seizure in the fall of 1999 leaving Melissa with no speech and little neurological functioning on her right side. A nightmarish period followed with Melissa unable to speak, walk, or even feed herself. A brain biopsy confirmed the preliminary diagnosis of toxoplasmosis, a rare parasitic infection. After three weeks of intensive therapy, she began to regain functioning.

flatbed_241Barely able to walk, speaking with slurred speech, unable to read because of double vision, and unable to write, Melissa declared herself fit to return to class at the U of R. For the next six weeks, her father accompanied her to every class, leaving her wheelchair in the hall, so she could walk into the lecture hall unassisted. By mid-semester she was going by herself and achieved A’s in Organic Chemistry and Political Science.

By December, everyone believed she would prevail and plans were made to finally go away to college. On January 5, just five days before leaving for UPenn, Melissa had what was supposed to be a final bone marrow biopsy. Within one hour, however, the cruelest blow of all was dealt. Once again, Melissa had relapsed. There were no options. There was no hope. There was nothing left to do. Nothing except live – which Melissa continued to do with passion. Throughout all the challenges, Melissa viewed herself as always living, never dying. She knew she would eventually die, as would we all. While she valiantly fought the disease, she did not fight death. She accepted that she could not know the when or why. But until she died, she intended to live. She decided to go to UPenn anyway, saying,

flatbed_291“If I don’t go now, I never will.”

So off she went to the university she had so longed to attend. For eight short weeks, she reveled in just being a “college kid”. She went to class, ate in the dining hall, studied with her friends in the dorm and even went to a few fraternity parties, quickly earning the respect and admiration of all who knew her. While there, she underwent an experimental treatment that offered some small hope, leaving the hospital on pass to attend class. She required transfusions every day, often twice daily, frequently sitting in the Emergency department at 2:00 a.m. doing her homework so she would be prepared for class in the morning.

By spring break, Melissa had become very sick and had to return to Rochester. A biopsy showed that the experimental treatment had had no effect on the disease now ravaging her system. Melissa now made her final and most courageous decision – to stop all treatment. She had come to accept that her time on earth was very limited. With continued chemotherapy she knew how sick she would be and opted for quality of life versus quantity.

Impressed by her courage and determination, the University of Pennsylvania presented Melissa with her Bachelor of Science in Nursing degree, a rare tribute bestowed upon those deemed worthy of being a Penn alumna despite being unable to complete their coursework. In Melissa’s honor, the University established the Melissa Sengbusch Inspiration Scholarship for which Melissa proudly established the eligibility criteria.

In the three months until she died, Melissa never stopped living – a “joyous, turn your head to the sky and shout” kind of living.

She took a glorious vacation with her family to the Grand Canyon, rode a hot air balloon over the Arizona desert, planted an herb garden, crocheted an afghan and took a pottery class at the local art gallery, all while writing profound poetry and prose in her journal. She said goodbye to her friends and family. She made plans for her death and burial, donating her body for medical study. Before she died, she asked a promise of her mother.

pottery“If you have learned anything from me through all of this, do something with it to make a difference – to make things better.”

13thirty Cancer Connect is dedicated to Melissa’s ever-present spirit and is committed to “making things better” for other adolescents with cancer.