Leanne’s Story

Site created on February 22, 2021

Welcome to Leanne's CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.

Introduction: Leanne Bossert (maiden name Schwab) is 38 years old and lives in Canandaigua, NY with her husband Nick and four children ages 1, 3, 5 & 7 and has been battling brain tumors since 2017. She was diagnosed with her second and third brain tumors in October of 2020 and has been trying to get her insurance to cover her treatment since that time and has repeatedly been denied. This would mean that Leanne would have to pay the entire cost of the treatment (almost $300,000). We are raising funds to help this family of 6 get their mama the treatment she needs, to be there to raise her 4 precious babies. The funds collected will go directly toward paying for her treatment, her travel  expenses (lodging, food, gas), and any help the family might need with their children etc., during this time.  Even if her insurance decides to do the right thing and cover their portion of her treatment, we would still be raising funds to help cover her portion as well as travel expenses etc. Her 4 children have only just begun their life and need their mother now and as they grow. It would certainly be a tragedy for this young mother of 4 to go fully blind or worse. We all want to see her well again and help her and her family on this healing journey. 

To donate, please visit https://gofund.me/c7338695
 
Her full story is below.
 
#fightforleanne 
#braintumorwarrior 

Initial Diagnosis: Just after giving birth to the Bosserts’ third child, Aurora, Leanne experienced a small blurry spot in the vision of her left eye, and after much testing, she was diagnosed with a meningioma brain tumor near her left optic nerve, pituitary gland and carotid artery. Her life and that of her family was immediately turned upside down. In the midst of recovering from the birth and taking care of her newborn and two other young children, she underwent a slew of medical tests, procedures and appointments. Her doctors were telling her that she would need surgery very soon. With babies in tow, she traveled all around New York State trying to find a doctor that could help her with a tumor in such a difficult location. Finally, she found a neurosurgeon 5.5 hours away in New York City. His speciality was endoscopic endonasal brain surgery. It was a very difficult decision for Leanne and her family to make, but she had to leave her newborn baby and 2 other children behind and travel to NYC to have her surgery in January 2018.

 Brain Surgery: The Bossert’s have a high deductible insurance plan through Leanne’s husband’s primary employer (he actually has 5 jobs). Having just had a baby in November of 2017, and Leanne’s surgery being in January of 2018, they had to pay the maximum out of pocket expenses twice just three months apart, and Leanne’s surgery was out of the area. So, the community helped raise funds, the family put a second mortgage on the house and she was able to have her surgery. Her first tumor was removed during surgery but unfortunately, she was left with much damage and side effects. She is now legally blind in her left eye. She has some vision around the sides of her visual field, but the center is like a gray blurry cloud, combined with the vision in her right eye (which is still good at this time), she sees a blurry cloud over her vision. Her recovery has been long and difficult for her and her entire family. After several months, a lot of PT, a special driving course, and a grant to outfit her vehicle with additional cameras and sensors, she was finally able to drive herself and her children again. These days, she always has great pain, but some days she can power through and other days are extremely difficult. She still needs so much help from her family and friends just to get through her difficult days and all of her medical appointments, procedures and tests. 

 Aftermath: Prior to all of this, Leanne was an active and healthy mom. Leanne worked for the New York State Pollution Prevention Institute at the Rochester Institute of Technology. She was still doing CrossFit during her 9th month of pregnancy with her 3rd child. But that body and life she had, are no longer and she now has a new reality, that she is still dealing with 3 years later. She lost most of her sense of smell, has severe nasal issues, permanent nerve damage down the center of her head and face. She has extreme pain if her head moves in certain ways. Things that should be normal, every day movements, such as bending to pick something up, changing elevation or looking under furniture for baby toys, all cause severe pain. She deals with  constant head and neck pain that vary in severity. She often has what she calls her “episodes” where her head and neck pain become so overwhelming that even this tough mama becomes almost paralyzed by the pain. At these times, she can barely move, let alone take care of her four precious babies. This puts a lot of difficulty and stress on her children, her husband and her parents that help take care of them whenever possible. 

 Reoccurrence: In October of 2020 Leanne was diagnosed with her 2nd and 3rd meningioma brain tumors that they presume to be benign. Dealing with all of her health issues and taking care of now 4 children was challenging enough. When she went for one of her routine MRI’s, she and her doctors did not expect to see any new tumors. She was devastated to find out that she had two new tumors adjacent to where her first tumor was found. Apparently her tumors were more aggressive and faster growing than they thought. She was told that due to the rate at which these are growing, her worsening vision, and the fact that they are located near so many important areas (optic nerve, pituitary gland and carotid artery) she needed to treat them soon. Repeat surgery was not an option for several reasons. This time she had to look into radiation. Due to COVID, she was not limited to doctors just in her area. She was able to have telehealth appointments with the top experts from several states. As there are no proton radiation centers near Leanne, these experts came up with a treatment plan for her to go to Massachusetts General Hospital to have proton radiation therapy with a doctor that has the most experience with tumors just like Leanne’s, and a very high success rate. She would need to be treated 5 times a week for about 6 weeks. 

 Currently Seeking Medical Treatment: Proton radiation rather than photon radiation was carefully chosen for many reasons. Proton radiation goes in the head from one side and has a calculated stopping point, whereas photon radiation goes in one side of the brain, through the middle and out the other side. Photon radiation has more fallout going to the healthy areas near the tumors. Proton radiation has been recommended to maximize preservation of all the normal tissue function such as pituitary, vision and her cognition. Being that the median age for meningioma brain tumors is 70, Leanne is a relatively rare and young patient. For this reason, the doctors are very hesitant to “blast away” with other forms of radiation or surgery that could have devastating effects on the very important areas surrounding her tumors. Reducing the risk of vision loss, hypopituitarism, neurocognitive effects and a secondary tumor should receive the utmost importance in this case, rather than saving the insurance company money. Leanne will hopefully have a need for a healthy body for many more years to come. Leanne’s family prepared themselves to have someone accompany her during her treatment and other family members take over the daunting task of caring for her 4 young children (even on homeschool days). All of their preparing was made unnecessary when they found out that Leanne’s insurance company, Excellus, denied coverage for the treatment her doctors were recommending. Apparently, proton radiation will cost almost $300,000 and her insurance company would like her to have the much cheaper version of photon radiation, against her doctor’s wishes, because it is a fraction of the cost. Leanne’s expert physicians have been appealing to the insurance company with evidence, references etc. to rationalize the medical necessity of this treatment. Her doctors have even engaged in a peer to peer review with the insurance company’s medical professionals, and still they are denying coverage. The denial of the coverage would require Leanne to pay the entire $300,000 cost to undergo the treatment that would be most effective in saving her 
remaining vision and other essential brain functions. 

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