This fundraiser is set up and managed by Stephanie's sister, Shannon. Our family has always used humor to get through the tough times, and this is no exception. From day one, Stephanie called her tumor "the butterfly in my brain", so that's where "Stephanie's Butterfly" originated from. If anyone knows our family, they know that we rally together when someone is in need. No one should face something like this alone and although it breaks our hearts that we can't take her pain away and heal her, we can at least take away some of the financial burden so she can focus on getting better. We are trying to raise money to help offset some of the expense that they will endure within the next few months. It was an unexpected surprise to find a surgeon willing to take on her medical case so soon, so funds are desperately needed so we can book airfare, hotel stay, food and any other expense that may be needed for her, her children and her husband. Her only wish is her kids are the last and first thing she sees when she goes into surgery. There is so much to worry about, money shouldn't be the greatest concern at this time. From all of us, thank you for your prayers, thoughts, generosity, and support during this time.
Please read for a little background of Stephanie's journey:
How do you handle the worry, sadness, and fear of looking at your beautiful children, knowing that any day could be your last with them? It’s the hardest thing I’ve ever had to do. I’ll never forget the day in 2009, just a few months after I started nursing school, when this scary and very painful journey began. A pain like I had never imagined possible. It brought me not just to tears, but screams for help at the emergency room. It literally felt like my skull was going to shatter into a million pieces. The pain was so unbearable that I had to squeeze my head with the palms of my hands as hard as I could to counteract the pressure. I couldn’t stand up. I was crying. I was vomiting, all at once. After many visits to the ER, with no diagnosis or explanation of why this was happening, I finally received some answers. The night my life came crashing down around me was another long night of excruciating pain that results in numerous tests and finally a CT scan. The emergency room doctor came in the room and bluntly said, “Your pain… it’s from the mass in your head.” And that is how I was told I had a brain tumor. Right away, I was scheduled with a neurologist and was told it wasn’t just any brain tumor, I had a Pineal Gland Brain Tumor, which also has a cyst on it. Of over 140 types of brain tumors, the type I have accounts for only 0.5% of all of them. My tumor is located in the center of my brain, in the deepest recess, the riskiest place for a surgeon to get to for treatment. It’s too risky to even biopsy to see if it is cancerous or not. To this day, we still do not know. Over the next five frustrating, hopeless years, I’m still dealing with the same symptoms that brought me to the ER that day. The difference is my symptoms are way worse and I have many more. My symptoms list goes on and on now. It has been observed through every MRI I’ve had done, which I have to have every 3-5 months, the tumor and cyst both have grown. However, all of the doctors that I have seen only offered the “waiting game”, as the risks outweigh the benefits at this point for such a risky surgery. The waiting game has been very scary and frustrating and has caused my medical situation to decline incredibly. My tumor last measured about 25mm (2.5cms) which is already five times the size of the gland it is in and is compressing everything vital. The National Center for Rare Disease says any Pineal Tumor larger than 0.5cm is extremely symptomatic. Mine is five times that size. Earlier this year, my lead neurologist at Hampton University Proton Therapy Institute discovered that the pressure of my brain tumor also caused my Pituitary Gland to stop functioning; which created a whole new set of life-threatening problems. I was diagnosed with Adrenal Insufficiency Disease. I see an Endocrinologist for that now. Because my Pituitary Gland doesn’t function, my body doesn’t make Cortisol, a hormone vital to all life functions and which makes our bodies able to handle any illness, big or small. I cannot even fight a low grade fever anymore. I have to take replacements through the day, every day… forever. I also have to carry emergency injections in case of Adrenal Crisis, which is when all of your body systems rapidly shut down. However, the Cortisol replacements can cause osteoporosis and diabetes, which I have the recently started showing symptoms for. I am currently awaiting tests results. I also have to wear face masks to make sure I do not get sick. Because of my lowered immune system, my body is highly susceptible to infection and illness. Even at the slightly onset of a fever or if I just don’t feel good, I have to immediately go to the ER to have my cortisol levels checked. If I do get sick, I have to be hospitalized (ironically, the worst place for me to be) and my cortisol replacement medication is doubled (up to multiplied by about ten times the dose I normally take daily) depending on the medical situation. Another side effect of the tumor is that the pressure of my tumor causes intermittent compression of my cerebral aqueduct, which is how cerebral spinal fluid drains from your brain, to then circulate around your brain and spinal cord, to be replenished with new cerebral spinal fluid. The pressure change from going from laying down over night to standing in the morning makes me dizzy and causes me to throw up most mornings. I have had temporal lobe seizures but since I have bad reactions to every anti-seizure medicine, I cannot take any. These seizures have left me unable to move for hours. For monitoring my condition, I have had many spinal taps and have had terrible reactions each time, caused by spinal fluid leaking into my surrounding tissues. It was the most horrific pain I have ever felt in my life and resulted in emergency blood patches, which is where they draw blood out of your arm and inject it into the spinal tap site to “patch the hole”. I then had to lay flat for at least two more weeks. Yet another side effect that I have experienced is with my eyesight. I also see a Neurologist Ophthalmologist because my optic nerves cross over my tumor, which has caused my vision to be blurry and doubled. The pressure in my eyes (my IOP- Intraocular Pressure) is very high, so I have the beginning stages of glaucoma as well. Due to the continuous medical problems and never knowing how my day will be, I have missed the last few semesters in nursing school because my memory and concentration, along with my other symptoms, has made it impossible right now. I went from a 4.0 GPA Honor Society nursing student, close to graduation, to barely being able to make it through a normal day. The only requirements that I had left to get my RN degree was clinicals. I had already even added classes for my bachelors. Now, medically, I have zero energy, some days to even talk or walk. A career in nursing is now just a dream that I cannot achieve, something that I worked so hard for, for so long. I simply cannot complete the requirements for my degree, and working in a hospital around people who are sick, would surely be a death sentence for me. I wanted so badly to be a pediatric oncology nurse so I could help save sick children with cancer. This disease has taken so much from me I cannot even begin to count. But after everything I’ve been through, what makes all of this unbearable is that I have four beautiful children that need me. I have to make it through this for them. They are my strength and what I would fight through anything for. It destroys me to think about them having to lose their mommy at such young ages. My sons are 15, 12, and 10, and my daughter is 7. My children are amazing. They are my absolute world. The thought of not being able to be there for them is extremely heartbreaking to think about every day and causes immense anxiety attacks often. If you research treatment options, it always says that the removal of the tumor is the first step to survival, but for the past six years I have been to countless doctors, many of them not taking me seriously because of my tattoos, or repeatedly being dismissed because my tumor is so rare and surgery is so risky. They agree I need it removed, but no one would do it or help me find a surgeon that could and would agree to. Finding a surgeon with experience and willing to take the risk had proven to be impossible. Impossible, that is, until I came across the Skull Base Institute in California, specializing in intracranial surgeries! I sent my MRI disc to them and scheduled a conference with Dr. HrayrShahinian. He called me and said I was a perfect candidate for surgery and that the tumor needed to come out! That was a first! He caught me so off guard, I didn’t even have a response. I was prepared to hear what I hear every other time “You definitely need the tumor removed, but I’m not going to do it, and I don’t know who will. Best of luck. Bye”. But not this time! Surgery is now in the process of being scheduled! I will be flying with my family across the United States, from Virginia to California within the next couple of months for surgery. I’m scared to say the least, but I am so thankful for this opportunity to finally get help. Though my journey is no way near over, we are hopeful that the removal of my brain tumor will stop everything from continuing downhill. We so often take the little things for granted, until we realize they may not be there one day. I’ve learned to laugh at the spills, and that I’m never too busy for my kids and family. There’s nothing more important than making the most of today. After all, if something can wait until tomorrow, shouldn’t it be the dishes and not getting to play Hide-n-Go-Seek? From the bottom of my heart, thank you so much for listening to my story and for every thought and prayer sent my way! God Bless you and yours always.