JOIN NICOLE IN HER JOURNEY TO CONQUER BRAINSTEM GLIOMA
My name is Nicole and I am a 24 year old woman living in NJ with much life ahead of me to experience and live. I am a full time college student nearing graduation of a dual degree in Psychology and Social Work and have aspirations of continuing my education to a doctoral level. Friends, family and colleagues would likely describe me as hardworking, motivated and dedicated and most of all loving. My passion for helping others has always gone undoubted and this time I am asking for YOUR passion, help, support and empathy as my journey continues.
I have been diagnosed with brainstem glioma, also known as DIPG. My journey began on January 20th, 2016. At the time, I was being treated for a neck injury due to a motor vehicle accident. Upon reviewing the MRI of my neck for this accident, incidental findings of a mass located on my brainstem were unfortunately present. From that point forward I was under supervision at Sloan Kettering which included routine MRIs and neurological exams. Throughout my care with Sloan Kettering, I had not posed any alarming symptoms that may be thought of as being associated with the glioma for two whole years. In late January 2018 I was hospitalized twice for symptoms I was sure to be related. Unfortunately, my care providers at Sloan Kettering believed they were otherwise unrelated and I was posed with the options of seeking a second opinion. I have since transferred my care to Mount Sinai where I have found a spectacular proactive team to better address my symptoms and begin treatment. As you can imagine, seeing dozens of specialists, undergoing dozens of MRIs and the overall cost of treatment is an extraordinarily expensive treatment plan.
WHAT EXACTLY WILL YOU BE SUPPORTING?
In the upcoming weeks I will begin an Onco-fertility process to preserve my fertility also known as “freezing of eggs” in preparation for the other portions of treatment I will undergo. With many types of chemotherapy and radiation the risks of infertility later in life are quite present. This portion of my treatment like the rest, is very important to me as a young woman. There is nothing more I would want in this world than to experience motherhood and have the opportunity to start a family after a successful completion of treatment. With your help, that experience can be made possible for my loved one and I.
Radiation & Chemotherapy:
After successfully preserving my fertility, I will begin Proton Therapy, a type of radiation specifically designed for sensitive areas such as the brain. Proton therapy uses a technology of radiation beams that have a much lower risk of damaging surrounding tissue as there is no exit site of radiation, it remains in the tumor, working to destroy tumor even after radiation has been completed for the day and in total for a month after treatment has ceased. Due to the fact that my mass is located on the brainstem, the most sensitive and crucial part of the brain, Proton Therapy is my only option. There are only ten facilities in the United States currently using Proton Therapy and luckily one of those facilities is located in New Jersey. I will be receiving radiation once a day for six weeks. Although this facility is located in NJ it is about an hour from where I currently live. Between the out of pocket costs of Proton Therapy not covered by insurance and the two hour minimum daily commute, this portion of my treatment will also be a hefty expense. With your help I will be able to attend all treatment sessions and have access to the radiation available to me while reducing the stressors of maintaining full time work (while attempting to finish my semester) to fund my treatment. I am a very busy girl but I will need to step down during this process and allow myself to rest in order to aid in a successful treatment. Below I have attached a site in which includes multiple videos to better explain how proton therapy works for anyone’s own interest.
Along with receiving Proton Therapy radiation, I will be also be receiving Chemotherapy medications. Chemotherapy will continue some time after radiation ceases and is a crucial part of my treatment. The chemotherapy will make my mass more susceptible to the radiation in hopes to completely destroy this glioma!
I also have a surgical plan for emergency precautions. I am currently experiencing intense amounts of inflammation surrounding the mass on my brainstem which causes excruciating headaches and debilitates other basic functions of the body when the inflammation gets really bad. During times of increased inflammation, symptoms can interfere with balance, vision and a weakened control of facial nerves resulting in a noticeable asymmetrical smile and in some cases even numbness of the face occurs. Radiation will naturally cause an additional amount of swelling and inflammation during the course of treatment which can be negatively impactful on my basic functioning and health during treatment. As an emergency plan in case the severity of inflammation is unable to be controlled with medications, I will undergo a Decompression Surgery which will simply provide more space within my skull for my brain during times of swelling.
OTHER WAYS TO SUPPORT:
A simple share and promotion of my story to friends, family and colleagues can help tremendously! Tell a friend to tell a friend and help get my story out there! DIPGs are rare and those of us who are fighting are not just fighting for ourselves but as a community to conquer Brainstem Glioma together
THANK YOU! THANK YOU! THANK YOU!
To everyone who has taken the time to read my story, promote and support my cause. Remember, no donation is too small and will be more appreciated than you can imagine. Prayers and positivity are welcome this way!!
Stay tuned —-> updates will be periodically added to indicate the progress of my treatment ! So please, join my journey ❤️
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