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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

Livv Lyfe!!

Livv Lyfe Prom Team with the queen!  April 26, 2015

Livv Lyfe Prom Team with the queen! April 26, 2015

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Happy Spring…almost summer! The last several months have been jam-packed with activity and we are closing in on some big events in the next few weeks.  Lauren has been through a lot since January,but true to form, she has bounced back and is looking forward to some big end of the school year events, especially…GRADUATION!  She had surgery in January and again in April for removal of a few benign tumors and major reconstruction of her mouth and jaw to replace all of her teeth which were damaged and malformed from the ten years of constant chemotherapy she received. She has one more surgery in August, and then should be well on her way to a healthy, functional mouth.  It is this in between stage that is difficult – trying to keep her weight up while eating mostly mush is not the greatest thing for this food loving girl.  I keep telling her to keep her eye on the prize, and she has a great attitude about it most of the time.   Her brain tumors have been stable, spine remains clear, blood pressure, blood work and hyperthyroidism under control and her stroke and myasthenia appointments last week were both stable.


Grace is doing well. She finished up lacrosse season last week, had her last orchestra concert on Friday and starting her first paying ‘job’ this spring, reffing little girls lacrosse games. She has been so great, helping me manage everything going on here and supporting Lauren through the last six months.   


We had a special Livv Lyfe Prom for Lauren at the end of April – something she and Blake have been looking forward to since they planned it 10 years ago.  We are forever grateful to Megan and Jene for styling Lauren and making her beautiful, custom dream-dress and pulling together the wonderful team of Jenna, Jessica and Therese to complete the look with hair, makeup and a custom bow tie for Blake. For those whoknow or have followed Lauren, you must be aware of the elaborate birthday themeideas she comes up with for her Vermont birthday extravaganza every year.  We incorporated 17 of those themes into tablecenterpieces/themes for the party, which sounded like a good idea until my sister,Lauren’s ‘Amper’ and I realized what we had gotten ourselves into.  All the work was worth it to celebrate Laurenand thank all of the family and friends who have loved and supported herthrough the most difficult and happiest of times.  


In between all that, we were able to put the house up for sale and be in contract within a week – thank you super team Tracey and Fred for guiding me through.  Planning for Lauren’s First and Goal on June 7th in PA and June 14 in OH is in full swing and with Lauren’s graduation on the 9th, and a move at the end of the month, we are setting ourselves up for a busy June.  The beach is definitely calling my name if  I can survive until July!


Thank you for all the love and prayers for Lauren. 



8 people hearted this



Dawn and Christopher Holloman
By Dawn, Christopher, Bill and Sarah Holloman and Gertrude Van Tassel
What an inspiration you are Lauren and family! We're so looking forward to you and Christopher and his friends graduating! We will be whistling for you when you get your diploma! Congratulations Babe!!! Dawn, Christopher and the Holloman family
My Mom will be there to see you graduate, you have been on her prayer list at church since you were younger and it will be a very special moment when she sees you get your diploma.
1 person hearted this
Glenda Kremer
By Glenda Kremer
so glad to get my computer fixed today so I could finally read this update--so thankful for all the positives. answered prayers for sure! which beach do you go to? we now own a villa in Hilton Head South Carolina. Let me know if you would ever like to check it out--5 minute walk to the beach with tennis court and large pool, hot tub out our front door! my favorite place in the world.
love and prayers from Ohio
1 person hearted this
Donna Beech
By Donna, Marty, and David
Hi, Marianne and Lauren and Grace and John,
Thanks for the whirlwind update and great reports all around! Wish I could have seen the Prom; when you get time to breathe this summer, post the pictures!! Graduation, Lauren --- wow! --- you know how proud we all are; we'll be looking for those pictures, too. Grace, so glad to hear that your orchestra playing continues ;+)
Miss you all; wish we lived closer!
Lots of love from the Beech Family
1 person hearted this
Helen Doornbos
Lauren, you are truly an inspiration! Continue to stay strong. Always prayers. Beautiful picture!!
Love to your family.
1 person hearted this
Lynda Murphy
So happy to read all the wonderful adventures past, present and future. I keep you close to my heart and so happy to read that you are doing so well. Wishing all the best always to a favorite bt family who we miss seeing. Hopefully, we will get to see you when you make your transition north! Continued love and prayers always! The Murphys
1 person hearted this
Nancy Cincotta
As ever your lives amaze me-
Always with you all in spirit-
Happy graduation!
1 person hearted this
Charlie Henry
By Charlie Henry
Great, if very busy report. I know, Lauren, you are looking forward to the end of the teeth project and it will all be worth it. Loved your prom and you made so many memories for all of us that night. We loved it. Best of luck with all you have going on in the family. The brownies for the June 7 camp are on order and the chief baker is ready to swing into action. Hugs. See you at the camp.
1 person hearted this
darlene searfoss
By darlene searfoss (cousin from Pa.)
Praise the Lord for good report on Lauren
1 person hearted this
Deirdre Darragh
By Deirdre Darragh
What a blessing it has been to be part of your lives. I thank you for the years of love, inspiration and lessons in resilience you have given me! May happiness and peace follow you all, wherever life leads. Team Lauren Forever!!!! XOXOXOXOXOXOXOXOXOXOX, Nurse Dee
1 person hearted this
Kristin Camiolo
By Kristin Camiolo & the Cams crew
GRADUATION??? Huzzah times infinity.
So glad for all of the good happening for Lauren & your family!
1 person hearted this