We are out here soliciting donations on behalf of our daughter, Adrianne whom is overcoming brain cancer. Would you be willing to donate?
We have arrived at a point where Adrianne has far surpassed life expectancy for Medulloblastoma (pediatric brain cancer). Adrianne was a bright eyed five year old who started to endure headaches while throwing up in the morning. Adrianne was struggling in ballet classes with her balance, but she refused to give up…Our family had recently arrived back in the Berkshires after a long sojourn wandering the west coast homeless…refusing to be defined by our past, we settled in western Massachusetts broke, hungry and keeping warm in an in-law apartment. After many months of misdiagnosis, Adrianne couldn’t even walk independently when the doctor in Great Barrington finally decided to order a CT scan, no MRI machines in the Berkshires! A mass was discovered. We were doomed. The MRI in Boston would later reveal a 5.0 by 5.1 cm heterogeneous mass involving the fourth ventricle associated with significant hydrocephalus. We were sent into the abyss of pediatric neuro-oncology(Boston Children’s Hospital and The Jimmy Fund)..The neurosurgeons at Boston Children’s Hospital declared “If we don’t organize a resection immediately Adrianne doesn’t have a chance!”She won’t survive a week!” In a state of shock, horror, trauma, fear and confusion we signed away. The first neuro-surgery was twenty-three hours. The mandatory resection led to the brain stem where the tumor was then coronated. The air hit Adrianne’s brain. Life will never be the same. During an interoperative MRI it was discovered that the pin holding Adrianne’s skull in place allegedly was to tight. The pin punctured her skull which caused an epidural hematoma, requiring another major brain surgery. This hematoma left Adrianne paralyzed on her left side. The metal plate would later abscess during treatment (another brain surgery) drains to monitor cerebral spinal fluid.. on and on go all the problems once the brain was touched. The worst of all was radiation induced optic nerve atrophy. Adrianne has been left blind! Adrianne’s sister Abegayle was born nine days after this first surgery. Life is an amazing gift! Adrianne was gifted with a beautiful baby sister. How happy this moment was for all of us. Adrianne was alive, we had a new life to celebrate along with a second chance for Adrianne..I could write a novel at this point about all the sordid details of my initiation into the miracle mom club! I’ll continue to do by best to summarize :-)
Dana-Farber Cancer Institute ( Jimmy Fund) sent in the pediatric neuro oncology team an hour before the first surgery to prepare us for what may lay ahead. There is absolutely no preparation for what we and especially Adrianne have endured since 2008! I thought life was difficult, homeless, broke with healthy children. Facing a catastrophic illness then becoming homeless again with your daughter going blind isn’t a circumstance that anything ever ever could prepare you for!! We reluctantly agreed to putting Adrianne on a study with Dana-Farber. Even the neuro-oncologist at the time who was recruiting us for this study declared “I hope one day this is looked at as brutality!” The idea of radiating Adrianne’s developing brain and spine for seven weeks, five days a week with propofol then injecting the heaviest of heavy chemotherapy (cisplatin, CCNU, Cyclophosphamide and vincristine) into her tiny veins for two years didn’t set well in our heads…we deferred to the experts, donated her cells and prepared for hell! Since, we’ve spent time at Children’s National with the pediatric neurologist that put the study together for Medulloblastoma, we also spent time at Children’s Hospital of Philadelphia. Convinced that taking an integrative approach would and continues to give Adrianne the best chance possible we utilize donations for healthy food and supplimintation that Medicaid won’t cover..To date Adrianne has defied all the “data”. Adrianne being one of the fist kids to receive proton radiation…We still don’t understand the long term side effects of proton beams..During radiation therapy is when eighty percent of Adrianne’s eyesight disappeared. Adrianne is still legally blind and needs a cane to navigate. She also struggles daily with seizures I.e. Adrianne carries a diagnosis of epilepsy, short term memory loss and high frequency hearing loss. We currently are working on the right remedy to manage the severity of the said seizures. All this adversity is intertwined with being homeless with five of Adrianne’s siblings. We have adapted to hotel life while resonating with gratitude for all this time together. Our undying love for eachother won’t ever be abandoned. Adrianne has dreams. Adrianne used to run hoping to accomplish a marathon, but of late the severity of the seizures have deterred her from that goal..She recently tried adaptive down hill skiing which she talks of often, expressing the love for another opportunity to try. Adrianne frequently asks for a seeing eye dog, a home and loves to drink coconut water. Realizing I need to wrap up the narrative I have so much more to share. Our insights, our moments of laughter, our fears that we refuse to feed..The grim truth is that Adrianne will need life long follow up care. We will continue to update while seeping in gratitude for all those that continue to hold our family together..Please know your kindness will never we wasted.
In humble gratitude,
Elyse (Adrianne’s mom)
We have arrived at a point where Adrianne has far surpassed life expectancy for Medulloblastoma (pediatric brain cancer). Adrianne was a bright eyed five year old who started to endure headaches while throwing up in the morning. Adrianne was struggling in ballet classes with her balance, but she refused to give up…Our family had recently arrived back in the Berkshires after a long sojourn wandering the west coast homeless…refusing to be defined by our past, we settled in western Massachusetts broke, hungry and keeping warm in an in-law apartment. After many months of misdiagnosis, Adrianne couldn’t even walk independently when the doctor in Great Barrington finally decided to order a CT scan, no MRI machines in the Berkshires! A mass was discovered. We were doomed. The MRI in Boston would later reveal a 5.0 by 5.1 cm heterogeneous mass involving the fourth ventricle associated with significant hydrocephalus. We were sent into the abyss of pediatric neuro-oncology(Boston Children’s Hospital and The Jimmy Fund)..The neurosurgeons at Boston Children’s Hospital declared “If we don’t organize a resection immediately Adrianne doesn’t have a chance!”She won’t survive a week!” In a state of shock, horror, trauma, fear and confusion we signed away. The first neuro-surgery was twenty-three hours. The mandatory resection led to the brain stem where the tumor was then coronated. The air hit Adrianne’s brain. Life will never be the same. During an interoperative MRI it was discovered that the pin holding Adrianne’s skull in place allegedly was to tight. The pin punctured her skull which caused an epidural hematoma, requiring another major brain surgery. This hematoma left Adrianne paralyzed on her left side. The metal plate would later abscess during treatment (another brain surgery) drains to monitor cerebral spinal fluid.. on and on go all the problems once the brain was touched. The worst of all was radiation induced optic nerve atrophy. Adrianne has been left blind! Adrianne’s sister Abegayle was born nine days after this first surgery. Life is an amazing gift! Adrianne was gifted with a beautiful baby sister. How happy this moment was for all of us. Adrianne was alive, we had a new life to celebrate along with a second chance for Adrianne..I could write a novel at this point about all the sordid details of my initiation into the miracle mom club! I’ll continue to do by best to summarize :-)
Dana-Farber Cancer Institute ( Jimmy Fund) sent in the pediatric neuro oncology team an hour before the first surgery to prepare us for what may lay ahead. There is absolutely no preparation for what we and especially Adrianne have endured since 2008! I thought life was difficult, homeless, broke with healthy children. Facing a catastrophic illness then becoming homeless again with your daughter going blind isn’t a circumstance that anything ever ever could prepare you for!! We reluctantly agreed to putting Adrianne on a study with Dana-Farber. Even the neuro-oncologist at the time who was recruiting us for this study declared “I hope one day this is looked at as brutality!” The idea of radiating Adrianne’s developing brain and spine for seven weeks, five days a week with propofol then injecting the heaviest of heavy chemotherapy (cisplatin, CCNU, Cyclophosphamide and vincristine) into her tiny veins for two years didn’t set well in our heads…we deferred to the experts, donated her cells and prepared for hell! Since, we’ve spent time at Children’s National with the pediatric neurologist that put the study together for Medulloblastoma, we also spent time at Children’s Hospital of Philadelphia. Convinced that taking an integrative approach would and continues to give Adrianne the best chance possible we utilize donations for healthy food and supplimintation that Medicaid won’t cover..To date Adrianne has defied all the “data”. Adrianne being one of the fist kids to receive proton radiation…We still don’t understand the long term side effects of proton beams..During radiation therapy is when eighty percent of Adrianne’s eyesight disappeared. Adrianne is still legally blind and needs a cane to navigate. She also struggles daily with seizures I.e. Adrianne carries a diagnosis of epilepsy, short term memory loss and high frequency hearing loss. We currently are working on the right remedy to manage the severity of the said seizures. All this adversity is intertwined with being homeless with five of Adrianne’s siblings. We have adapted to hotel life while resonating with gratitude for all this time together. Our undying love for eachother won’t ever be abandoned. Adrianne has dreams. Adrianne used to run hoping to accomplish a marathon, but of late the severity of the seizures have deterred her from that goal..She recently tried adaptive down hill skiing which she talks of often, expressing the love for another opportunity to try. Adrianne frequently asks for a seeing eye dog, a home and loves to drink coconut water. Realizing I need to wrap up the narrative I have so much more to share. Our insights, our moments of laughter, our fears that we refuse to feed..The grim truth is that Adrianne will need life long follow up care. We will continue to update while seeping in gratitude for all those that continue to hold our family together..Please know your kindness will never we wasted.
In humble gratitude,
Elyse (Adrianne’s mom)
Organizer
