neurofibromatosis, nf, nf1, faces of nf, neurofibroma

Rory – A Face of NF

Aurorah (Rory), now age 9, was diagnosed with neurofibromatosis type 1 shortly after her sixth birthday.  She was born with café au lait spots all over her body as well as freckling in her armpits and groin areas and a big spot on her chest. The spots were always passed off by her doctors as birthmarks.

We were at a well child exam with a new doctor who noticed the café au lait spots and she brought up that she should be seen by a dermatologist as she may have a “neurologic disorder. “ From there we went to dermatology and they biopsied her plexiform neurofibroma (a tumor) on her chest, counted up her café marks, looked at her freckling, and further suspected NF1.  They recommended we see genetics down at Children’s in Milwaukee and take it from there.

I scheduled an appointment but it would be another three month wait to get into the NF clinic there. Being a terrified mother, I reached out to Mayo and was able to get in just a few weeks. A few weeks gave me time to read, research, and look further into the new world we were jumping into.  By the time we got to Mayo and saw the geneticist I felt pretty confident I knew what she was talking about when she went over stuff.  She was confirmed to have NF type 1.  We also told the doctor about Rory’s constant headaches, aches and pains, stomach issues and what not.  This led to a brain MRI, which confirmed an optic glioma (tumor on the optic nerve).

For two years, the tumor was stable and we didn’t have any signs of issues with it.  Last year, the tumor started shifting and creating problems with Rory’s vision.  Ultimately this led to a chemotherapy trial of Carboplatin every four weeks for 13 months.  It’s been a long and bumpy road. Therapy has for the most part been going okay.  The tumor has consistently been shrinking through treatment as the MRI’s have been showing. Everything has been pretty stable up until last month when her optic nerve is showing signs of thinning.  This also showed on her visual fields test this month, and her vision is getting worse.  We will see what next month brings and go from there.  That’s a general over view of Rory’s medical journey. There have been many hurdles.

Rory as a person, not a patient, is your typical goofy, fun loving nine-year-old.  She’s on an IEP (Individual Education Plan) for school as she has difficulty seeing stuff  and a bit of comprehension issues, especially with math.  She loves EVERYONE and is the first one to ask if you need help.  Rory is a great lover of arts and crafts, movies, softball, basketball and playing outside!  She enjoys spending time with family and friends and doesn’t let chemo stop her from doing the things she loves.  Aside from her family and friends, Rory’s second love is Wonder Woman.  She’s a HUGE fan and someday hopes to meet her.  We did the Madison NF walk a few years ago and will be returning to the Great Steps 4 NF walk this year on her birthday!  This is what she wanted to do for her birthday instead of a party.  She’s a pretty special kid and our hero!

– Heidi (mom)

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Comments (1)

  • Thank you for sharing Rory’s story. my nephew, Vincent, has nearly the identical story age timelines and optic nerve chemo etc.

    You are lucky you caught it early. He was blind in one eye before starting chemo, but it saved his second eye. He’s now 12 and never had to do chemo again after he did one round at age 7.

    I am from Madison and might have met you at a walk a few years ago. You got this!!!!

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