Welcome to our CaringBridge site. It has been created to keep friends and family updated about our loved one.
My Story is the introduction to our CaringBridge site.
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Lauren was born with a genetic disorder called Neurofibromatosis Type I. NF1 is an autosomal dominant genetic disorder which causes tumors to grow along nerves and can affect the development of non nervous tissues such as bones and skin. It causes tumors to grow anywhere on or in the body and may lead to developmental abnormalities. It is the most common neurological disorder caused by a single gene, affecting one in every 4,000 births.
As a result of NF, Lauren developed brain tumors, bilateral optic and hypothalamic gliomas, just before her second birthday. She had been on chemotherapy for about four years, with periods of progression and stability, and development of a new lesion in her brain stem, when she developed Evan's Syndrome, a rare blood disorder in which the body makes antibodies that destroy red cells, platelets and white blood cells. Her chemotherapy for the brain tumors had to be discountinued, and a different chemotherapy coupled with synthetic steroids was introduced to try and control the blood disorder. In the meantime, vision in her "good" eye had deteriorated. She started back on a new chemotherapy regimin in the fall of 2004. It kept her stable until January 2006 at which time scans showed that one of her tumors more than doubled in size. She was enrolled in a Phase I clinical trial of Lenalidomide from Jan. 2006 until March 2007, at which time she developed lesions in her cerebrum and had to discontinue. In March 2008 she was diagnosed with malignant peripheral nerve sheath tumor, an aggressive soft tissue sarcoma. She had surgeries on March 11 and 14th to remove the tumor and completed 7 weeks of radiation. In June 2008, she was diagnosed with severe Moya Moya disease, a progressive narrowing of the blood vessels that feed the brain, after having two strokes. She had a double craniotomy with a procedure called pial synangiosis at Children's Hospital of Boston in August, 2008 to try and revascularize her brain. Since then, she had a bout of Rotavirus that led to another stroke, and recovery has been frustratingly slow. This was complicated by speech and swallowing problems, and then progressive weakness in her eyes and face. In July 2011, she was diagnosed with Myasthenia Gravis, and started medication to try and help with the muscle weakness and exhaustion.
Like so many children battling brain tumors, both the disease and the side effects of treatment have taken their toll on Lauren. She is blind in one eye, and has visual deficits in the other. Her endocrine functions have been affected, requiring treatment, and chemotherapy has damaged some of the nerves in her extremities requiring leg braces. Her permanent teeth are falling out because the chemo caused her teeth to develop with no roots. She has endured surgeries, needle sticks, port flushes, bone marrow biopsies, blood transfusions, chemotherapy infusions, radiation, long hospital stays, physical, occupational and speech therapies, and too many doctors visits to count.
Despite all she has been through, she is a happy, enthusiastic and optimistic child, with a crazy, infectious laugh and a true love for life. She takes great joy in helping others, finds treasure in what others may see as ordinary or mundane, and never lets a day go by without some kind of exciting discovery. No matter what challenges are placed before her, she never gives up. Her courage, resiliency and relentless spirit are an inspiration to those who know her.
Lots going on, but little time or energy to stop and write it all down. I have come to the realization that the period of time between August and December is not my best season for keeping up.
Lauren – she was sarcastically labeled a ‘Renaissance’ girl by one of her doctors a few months ago. She dabbles in so many interesting disciplines and provides hours and hours of thought provoking conversation and debate. Her latest adventure? … leading us through the hospital’s hidden doorways, last bastions of unexplored departments and hours of contemplative thought in crowded holding pens, while the TV on the wall screams Disney princess songs. Right under my nose, they converted the old McDonald’s into the Nephrology Department, with a hidden entrance behind the glass elevators of the atrium. Last time I rounded that corner, it was a dead end! It’s like freakin Alice in Wonderland around that place. Despite changing up her meds, her blood pressure has become alarmingly high, and the days of testing and scanning still haven’t given us any clues as to why. It is not a good situation for her to be in,and because of her Moyamoya, history of strokes and autoimmune disorders, there is no easy solution. We are working on it.
Grace finished up with volleyball season, is on to basketball and made her Confirmation last week. In true Hurricane Grace fashion, she accidentally punched a hole through the side of her viola last week, just in time for her upcoming concert and chambers performance. That little giant keeps me on my toes!
Football season is over, and although things were looking pretty shaky in the beginning, Lafayette wound up winning the Patriot League championship and going to the playoffs. John was home yesterday for his first Saturday since August….watching football.
Wishing you all a wonderful Christmas and holiday season. Thanks, as always for your prayers for Lauren.