lily had another appointment with the neuro-oncologist. it was a good meeting and we are onto the next step. i am in good spirits tonight and honestly i think its because our next appointment/procedure is not for another 13 days. it does offer me comfort that i get spend more time with my little girl before we move on.
so, as we previously discussed, lily's tumor is sitting in a very difficult to access location upon her optic nerve. there will be no biopsy. no radiation. no surgeries. our one and only option at this time is chemotherapy. we will start with the smallest dose and hopefully it will work its magic. the regimen is effective in about 70% of cases. the course of therapy is about 1 full year.
our next appointment will be another MRI, a BEAR (hearing) test, and placement of a port. we are lucky in the fact that she only needs to go under anesthesia once to get it all done. the MRI that we will be doing will give us a baseline since it has been about 2 months since the last one. optic nerve pathway tumors of her type are very unpredictable. they can stay still for years, then grow. so, this will be a chronic condition. one we will continually watch. our reasons for treating are to try to shrink the tumor. it is close to the hypothalamus and we do not want it to grow there.
we now have a nurse coordinator. she will be assisting us with lily's care and helping me to stay organized (and sane) with all the appointments. lily will be getting weekly outpatient treatments, via her iv port. i am not sure how that is going to go.... the infusion takes from 1 to 2 hours. there is also pre treatment blood work to make sure her little body can handle the treatment. one risk of the treatment is developing an allergy.... so we will be sticking around after the treatment to make sure she does not have a reaction. its a lot to take in...
once again.... breathe... just breathe.... oooohhhhmmmm
then there are the other three littles to care for. oh my. where there is a will, there is a way, right?
she is one strong, happy little girl, thats for sure.
all my love to you.
goodnight.
she will do great. i believe in her and her mama to see her through. she will be okay. i promise. x
ReplyDeleteThat's our always happy and smiling little Lily! I think she will be putting smiles on our faces and laughter in our days, she has quite the personality and spunk.
ReplyDeleteShe is surrounded by lots of love and activity, of course those three brothers have so many interesting little things for her to focus on getting into also. She will be well.
Love ya, Mom
Love and blessings to you all......what a beautiful little girl.x
ReplyDeleteThinking of you always.
ReplyDeleteLily is a smily little that's for sure.
Love and blessings
Jen xoxo
The photos are just beautiful ... so lively and expressive!
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