Bedside Wedding Fulfills Patient's Final Wish
She wore a long white gown and had a rose pinned behind her ear. The room was decorated with streamers and flowers. The guests feasted on cake, and a torrent of well wishers gathered around the hospital bed to toast the bride and groom. Anna Moukhina had the wedding she always longed for, but the bedside ceremony turned out to be her dying wish. Two days after she recited her wedding vows, Anna died of glioblastoma, the most common malignant primary brain tumor. Stories like Anna’s inspire the world class specialists of Northwestern Brain Tumor Institute to research this deadly disease, in hope that someday, glioblastoma will be a treatable illness.
In March 2009 Anna first visited the Brain Tumor Institute, a collaboration between Northwestern Memorial Hospital, Northwestern University Feinberg School of Medicine, and the Robert H. Lurie Comprehensive Cancer Center of Northwestern University at Northwestern Memorial Hospital.
“Anna had been complaining of headaches, double vision, and had had trouble walking for a few weeks, so we ran some tests to figure out what was going on,” said Sean Grimm, MD, a neuro-oncologist at Northwestern Memorial Hospital.
The tests showed grade four glioblastoma. Patients with the same type of stage four tumors were given 14 months to live. Twenty-five percent of them made it to year two, and odds for survival increased the younger the patient was. Anna was 32 years old at the time of her diagnosis.
Consistent with the Institute’s mission of improving patient survival through clinical and scientific research, Anna’s doctors offered her the option to enroll in a clinical trial, in addition to having both radiation and chemotherapy treatments. The Institute offers a number of clinical trials in-house based upon their own research findings. Given the poor prognosis of the brain tumor, Anna and husband Alex Ognev agreed to enroll in a trial, hoping it would buy Anna more time.
“Only a small percentage of patients are referred for clinical trials, either because the patient is unaware of the trial’s existence or is too sick to participate,” said Grimm. “But I felt Anna’s participation in a trial was key, because it gave her another treatment option and could contribute to advancing the treatment options available for patients with glioblastoma.”
Anna was given the traditional drug therapy used for glioblastoma and a drug typically used to treat lung cancer.
“She was realistic about her prognosis, but she also was hopeful,” said Grimm. “We wanted to stop the tumors from growing.”
A month later, however, Anna had to withdraw from the trial, as the cancer had now spread to her bones.
“Gliobastoma is a very aggressive disease, and Anna’s cancer began to advance quite rapidly,” said Grimm.
As her condition continued its decline through the summer and fall, Anna’s treatment shifted from trying to shrink the growing tumors to trying to make the 32-year-old as comfortable as possible. In mid-December Anna was admitted to palliative care for pain management, and began to discuss with the palliative care team her dream of wearing a white gown and marrying Alex in the presence of family and friends. Knowing the end was near, nurses arranged a bedside wedding ceremony. Dr. Grimm attended and spoke at the reception following the service.
“It was a very happy occasion, but also incredibly sad because of how sick she was,” said Grimm.
On New Year’s Day, a mere nine months after her glioblastoma diagnosis, Anna died. For Dr. Grimm and his colleagues at the Brain Tumor Institute, however, the work continues.
“My hope is with the research the Brain Tumor Institute is conducting, we’ll develop new treatments that can prolong and enhance a patient’s life,” he said. “I just want there to be more options for patients like Anna, so that they don’t have to die so young.”