tgr4life's Blog
Well, thank you all for your well wishes and prayers.  They are greatly appreciated....    Gwyns visit to Riley went pretty well.  Basically they did confirm what we already knew.  She does indeed have Neurofibromatosis I and she does have tumorous "gliomas" on her optic nerves.  That being said, she is quite an amazing child and is doing very well.  Due to the sensitive placement of these tumors we cannot know if they are cancerous or not.  Nor are they in a placement where surgery can be performed with out severe risk to the individual.    As those of you know that are aware of this disease and its effects- it causes nerves in the eyes, spine, and brain to tumorise.  Since these are nerves in such sensitive areas surgery is usually a non option.  And this disease reacts in an inverse nature to radiation which causes the persons tumors to grow exponentially.  If treatment would be necessary, it would be chemotherapy. That is why we are trying to take a wait and see approach with Gwyn as the effects of chemo on a person as young as Gwyn can hold heavy consequences.   This is very much a "wait and see" disease.  We will have to see how it will effect her.  We have to be on the lookout for new and obvious tumors but we have to be just as vigilant at "observing" her for any sudden neuro changes.  Such as, changes in her speech, her walk, if she is stumbling more, or if her eyes seem to be turning outward, or protruding more.  Subtle changes.  She is now truly under everyone's microscope.  And also- as friends and family of mine that see her, if you notice any kind of changes in her I encourage you to talk to me about it.  As her father I see her everyday, as subtle changes could make it past my eyes, while my friends and family that see her less than daily might notice these changes better.   The neurologist, who stresses she is not a genetist, said that she believes this is a "random mutation" .  She says you either have NF or you don't.  You don't carry NF 1.  So, given the fact that neither I, nor Steph, nor any of our siblings, parents or grandparents have this she doesn't believe it is hereditary.  But, she also cautioned them to meet with a geneticist at their next visit to Riley in 3 months to confirm all of that.    Gwyns plan of action is to return to Riley in 3 months for a repeat MRI of her head with sedation and contrast.  They want to do it all there so it is done with the proper views, or sections that they are specifically looking at.  At that time she will go through the NF clinic and Steph and I will meet with a geneticist.  At the end of their day they will meet again with Dr. Lisa who will go over the MRI and all results with them.    3 months after that she will go again for another MRI.  This time she will see the neurologist and pediatric opthmaology again regarding the gliomas.  So, for a couple years she is on an every 3 month rotation of repeat MRI and visits to Riley. Dr. Lisa said  that although Gliomas are typically slow growing when they do decide to grow they can do so quite quickly. And Gwynies are in a very sensitive area being on her optic nerves and close to her pituitary and adrenal glands.   That is why we all have to watch her so carefully.    So, for now, we are encouraged.  We know that Gwyn is getting the best possible health care available for this at Riley.      I will continue to update all of you on the ups and downs of Bug.  On July 11th we are all participating in a "walk for the cure" for neurofibromatosis with the "children's tumor association."  It is her first walk.  And technically, she will be the one on the red "Radio flyer" tricycle.     Again- I want to thank everyone for their time and attention, and especially your prayers.


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