In 1999, Stephanie was a young mother of two girls, and was working as a brand marketing manager for a large company. After experiencing a number of symptoms which included mild seizures and jaw pain, her journey to a number of physicians began. On December 13, 1999, Stephanie was diagnosed with a low grade oligodendroglioma. This type of primary brain tumor is rare and often found in adults in their 30's. Two days after her initial diagnosis, doctors performed a biopsy which lead to a severe brain bleed in her temporal lobe which almost ended her life. As a result of this bleed, an emergency craniotomy was performed to evacuate the blood and save her life. Fortunately, this was a success and she only needed to rest and regain her strength.
Stephanie continued to work until Spring 2001, when she became symptomatic as the disease was progressing. Doctors had advised that we would continue to watch the tumor every 2-3 months with an MRI and keep an eye on any potential growth. A year later, October 3, 2002 she underwent another craniotomy in order to debulk the tumor. Due to the difficulty of the location of the tumor and the fact that this tumor is a very vascular tumor mass, they were only able to remove approximately 2/3's. Unfortunately the surgery lasted roughly 12 hours and because of complications she was left with left sided weakness due to a stroke that occurred while she underwent surgery. Stephanie remained in a rehabilitation unit for over 6 weeks while she learned how to compensate for the left sided weakness and how to walk again. Thankfully, she was able to gain 60% strength in her left leg but never regained the use of her left arm or hand.
Throughout the years, Stephanie learned how to adapt to her new "normal" and she was able to accomplish many things in those years. She made frequent visits to her neuro team in New York City for many years while the tumor remained stable. The tricky component at this time was managing her seizures. She sought the advice and expertise of many seizure specialists and used medication that was not FDA approved in an effort to be as seizure free as possible.
In November 2011, Stephanie received news that the tumor had grown and become more aggressive. She immediately underwent another craniotomy and unfortunately at this time, the doctors discovered that the tumor had become anaplastic (very aggressive) and it was determined that a regimen of chemotherapy would be necessary. Stephanie continued her treatment for a full year and endured harsh side effects which caused her to become very weak, tired and sick. In May 2012, Stephanie's family noticed very peculiar behaviors and a change in personality. After further review, it was found that Stephanie had an Arteriovenous Fistula, which is an abnormal connection between an artery and a vein, causing blood flow to move irregularly in the brain. After undergoing a lengthy endovascular surgery, the team of doctors were able to successfully reconnect her arteries, veins and capillaries in her brain to correct the flow of blood.
In the spring of 2018, Stephanie and her family received more bad news as the cancer was becoming more aggressive. Her best option at this time was to undergo a regimen of chemotherapy and radiation. Since the radiation was specific in nature and she wanted to stay with her team, she had to move into the city for 6 weeks in order to complete her treatment. The treatment caused a multitude of side effects including hair loss, nausea, weight loss, fatigue, loss of appetite etc. Stephanie moved back home and needed around the clock supervision and assistance. It was decided at this time that having an aide in the home was the only way to keep her safe as she dealt with issues of balance and severe weakness. After a number of falls which resulted in a broken shoulder, nose, elbow, ribs and a major subdural hematoma which required an emergency craniotomy, she spent 6 weeks in an out of the hospital and in an inpatient rehabilitation center.
This past summer, yet again the doctors informed Stephanie and her family that more treatment was necessary as the cancer continued to spread. She was enrolled in an immunotherapy clinical trial in NYC that required being transported from long island to NYC biweekly to receive lab work, specific test and infusions. However, after 3 months, it was deemed unsuccessful and Stephanie was removed from trial and scans showed a large amount of growth.
Since Stephanie was incredibly weak, had lost the ability to communicate and was no longer mobile, the decision by her family was made to stop any further treatment. Days afterwards, Stephanie had difficulty breathing and was rushed to the hospital. After a short stay, she was then placed in an inpatient Hospice facility in order to receive comfort care.
Her husband, Steven and two daughters, Halle and Jenna have devoted their life to making sure that Stephanie was provided the absolute best care. They have done all they could to make sure she was safe, healthy, happy and had the best quality of life. In doing so, they have incurred a number of medical expenses. Many of the treatments, medications and doctor visits were not fully covered by insurance. The cost of travel, home modifications, medical equipment, and medical attorneys have been an extreme financial burden on the family. With both daughters continuing their education on a single parent income, the hardship is causing great stress and anxiety during this difficult time.
Stephanie is an incredible fighter that has overcome every obstacle and has beaten the odds during this long 20 year journey. There are no words to fully express how strong, brave and courageous a woman she truly is.
Please help out Stephanie's family in this awful time of need. Any and all donations are greatly appreciated and will go directly to her family for medical bills and arrangements.
If you are unable to contribute, please pass this along to provide some much needed help for this incredibly strong family.
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