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Lauren’s Story

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.

Be sure to read the latest in the journal, view the photo gallery, and drop us a line in the guestbook.

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.  She was hospitalized for an extended period in March 2012 in myasthenic crisis, and after much intervention, was sent home on high dose steroids, which she continues to take.  She developed multiple thyroid nodules which have caused hyperthyroidism, as well as hypertension requiring medication.  

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.


Latest Journal Update

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I am so far behind on an update.  The scary part is that I am further behind on other things and am procrastinating by updating!!

 

Lauren has been stable and feeling well, so we have been taking advantage by filling life with as much fun, activity and every-day celebration as possible.  November marked 17 years since her diagnosis, which seems totally impossible to me.  She enjoyed a wonderful summer, highlighted bya return to Maine & Camp Sunshine after a 7 year absence, beach time, andher final year as a camper at Camp Can Do.   We enjoyed several football games at West Point with friends and family this fall, and are looking forward to celebrating an Army win at Army-Navy on December 13.  (John is loving his new job!)  Her raffle ticket was chosen for one of the coveted spots to light the Easton bonfire on Friday night – check out the photo.  Her first semester of senior year is almost over, and she has many exciting plans for the spring.  Two very special and talented New York fashonistas,Megan and Jene, have been working with Lauren to design and create a custom prom dress.  It has been so fun to experience an ‘insiders’ view of the NY fashion world and creative process.  On Saturday, she was trying on the same earrings and head piece Beyonce wore!  I posted photos on the Lauren’s First and Goal Facebook page. She can’t wait to reveal the final product at her very own Livv Lyfe Prom in April.

 

We are waiting for results on blood work for her myasthenia antibodies so she can hopefully and finally get off steroids after 3 years, and we have a date set for the first of several surgeries to restore her teeth that were damaged by chemo. Her brain and spine scans are coming up later this month, and providing they are stable, we can move forward with the surgeries.Her blood pressure and thyroid function are both under better control, and she hasn’t had any TIAs in several months. All in all, life is GOOD and we are very thankful.

 

Grace is great – she had a busy fall with volleyball and has moved on to winter track -this from the kid who was looking for a sport where she didn’t have to run!  The move to highschool didn’t seem to faze her and she is doing very well academically, in orchestra and has a very busy social calendar.

 

Thanks to all who follow Lauren’s page and continue to keep her in your prayers.  Wishing you all a wonderful holiday season and a healthy, happy 2015!!  

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Comments

13 Comments

Alice Williams
By Alice Williams
Prayers for all good medical news, and love hearing how much fun you are all having !!!!
Loved seeing you in person, and hope it happens again soon... A certain puppy is growing up and learning to behave!!!! Lauren and Grace, you would be proud!!!
Love, Alice, Emily and Lexie
Glenda Kremer
By Glenda Kremer
can't remember when I started nor how I knew to pray for Lauren but have been lifting her name for healing every morning and every time I am up at night for it seems like a few years now--is that possible? every time I hope for an update so thank you. I hope you will post when surgeries are happening so I will know to pray for them! thanks!
love and prayers from Ohio
glenda
Barbara Soloe
By
wonderful to hear good news. I may not post very often, but am always wishing, praying, and following her on her journey. Hope you all have a blessed Christmas
Jeff Justice
By
So, so good to hear from you all! Prayers to keep the good news good and for a blessed Christmas Season as we once again celebrate the 'reason for the season'. Godspeed.
Natalie Dominguez
By Natalie Dominguez
Lauren just keeps on keeping on! Beyonce's headpiece! How cool is that?! Congrats Lauren. Praying for good scan results. I hope you have a fun filled December!
Janet Hawkins
By Love from The Hawkins
Hello Loose family,
It brings a huge smile to our faces to read such good news! We are excited for all of you, and feel proud and honored to have you in our lives. You're ALL survivors!!
We'll pray for continued stability for Lauren's health, and for her spring plans. (Don't go too crazy out there, Lauren. :>) She continues to inspire us!....Grace, you ROCK as a sibling and teen with your positive traits!...And Marianne and John, you are parents extraordinaire!
Stay well through the holidays, and enjoy the peace of the season.
Suzette Flores
By Suzette Flores
Lauren and family, I cannot believe it has been 17 years! You are truly a remarkable young woman. I am thankful to know you and your wonderful family. Wishing you a wonderful holiday and a very happy and stable new year filled with all the adventures life can bring.
Charlie Henry
By Charlie Henry
Hey Lauren. Best wishes as you move through your EAHS senior year and, of course, with all the fashion things as spring approaches. Time has really flown by and all I need to realize that is to note that you and Grace are both Red Rovers. Best wishes to you and all of your family and extended family for a wonderful Christmas season, and of course, best of everything with the tests you have coming up. Working on your June 7 speech yet?
Carol Sykes-Bowen
By Carol Sykes-Bowen
So happy for all of you!
Nick continues to be stable... God 's Blessings to all .
Love, The Sykes- Bowens
Donna Beech
By Donna Beech
Thanksgiving Blessings to you four! Good to hear from you and get filled in on your busy lives with lots of exciting events. Lauren, you're in our prayers, and we trust that all will go well. Grace, I read your paragraph very quickly, looking for that 'in orchestra' phrase to pop up, and was happy to see that it still remains! :+)
Lots of love to you all.
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