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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.

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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.  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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Summer!!  I would rather be dripping with sweat in the blazing sun for hours than lift one more shovel full of snow off my driveway this year. Actually, sitting in my beach chair with the ocean tide lapping over my toes would be ideal, but whatever –anything but snow.

 

The best part of summer this year is that we are starting it off with three stable MRIs.  Lauren had three scans in the past 6 days, all of which were stable!  Brain and spine are unchanged and the scary lump on her thigh turned out to be a run of the mill neurofibroma sitting on the base of the femur that we don’t have to do anything but keep an eye on.   She ison a new med for hyperthyroidism that seems to be doing the job, and we bumpedher high blood pressure med up a little which she is doing fine with.  Her stroke issues and myasthenia are undercontrol and her hemoglobin is holding steady. We have a few more appointments to get through for dental, nephrologyand ophthalmology, but all in all, she is feeling well.

 

June has been a busy month. We had our annual football camps on the 1st and 22, which were great successes thanks to the army of volunteers and coaches who volunteer year after year.  Between the scans we took a little drive out to OH for a great camp thanks to the wonderful crew led by Allan Moore and Kathy Mazza at Otterbein University.  You can check out the video clip of Lauren’sspeech to the camp here: http://www.lfgf.org/Media-Room/Multimedia/

 

We are looking forward to a few get-aways and relaxation before football preseason ramps up later in July. Hope that you all enjoy some down time and sunshine this summer. Thank you for remembering Lauren in your prayers!

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Comments

10 Comments

Lynda Murphy
By Lynda Murphy
Wonderful news! Have a happy, relaxing summer!
Love,
The Murphys
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Kathleen Schaeffer
By Kathleen Schaeffer
Great news! Hope you all have a fun summer! Lauren is always in my prayers and I look forward to your updates.
Keep smiling, Lauren!
Lots of love, Kathy Schaeffer
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Glenda Kremer
By Glenda Kremer
I can't remember when nor how I found out about Lauren but prayers for her are every morning and each time I'm up at night and I have prayed for her for some time. was hoping for an update so appreciate this one--esp. since it is so positive!
love and prayers from Ohio!
Glenda Kremer
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Charlie Henry
By
Hi Lauren and family. So glad to hear of the good scans you have had and enjoyed the Pa. camp again this year. Your speech served as a motivator to all of us to keep up the work of Lauren's First and Goal. Enjoy your summer
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Jeff Justice
By Jeff Justice
Godspeed Loose Clan, Godspeed. Lauran continues to be such an inspiration . . .
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Natalie Dominguez
By Natalie Dominguez
Thats great news. Hope the next appointments bring more good news! And hope you guys have a great summer. All my prayers, Natalie
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Donna Beech
By Donna Beech
Dear Marianne, John, Lauren, and Gracie,
Thanks for posting the video clips --- they are so beautiful, just like the four of you! We think of you often and would love to see you sometime and get caught up with everything. David had a great time with his freshman year at West Chester Univ. as a music major (Hmmm......now where did that come from???! ;+) .
Lots of love to all of you.
Donna, Marty, and David
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Kathy Mazza
By Kathy Mazza — last edited
I thought Lauren looked fantastic at camp this past Sunday! She stayed a long time interacting with the zoo animals and seemed to enjoy all the activities surrounding the kids tent area! So glad to hear that her test results are coming back with good news. While we so very much enjoy the football camp (and for you it is two!) we look forward to a few weeks of quiet before we get going on preseason as well. Enjoy the rest of the summer to the entire Loose family! As always, I will have Lauren and the family in my thoughts and prayers. p.s. Lauren knocked her speech out of the park this year!
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Ellen Eggenberger
By Ellen Eggenberger
Miss you so much. Glad she's so stable! That's great!
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