hi all --
more hard-to-digest news:
rebecca went in for a brain and body scan this morning, it was part of the prep work for the new drug she was going to start taking. part of qualifying for the trial is proving that there aren't any growths in her brain (the pinneal gland didn't count because it's outside the brainm, although it's inside the head).
just got off the phone with our oncologist. it appears that the growth they didn't think was tumorous on the pituitary gland actually was a tumor and is growing. they additionally found a new growth on one of her cranial nerves that corresponds to some newer symptoms she's had of feeling numbness on the left side of her face.
what this means:
* we no longer qualify for the trial of the new drug, tarceva 3.0
* since that drug has been approved by the FDA for prescription, the other "compassionate-use" trial has ended
* because it was approved very recently, our insurance has not determined a co-pay for it yet
* if we pay out of pocket, it costs $12,000 per month
beyond all of that
* the new drug typically doesn't penetrate into the brain cavity particularly well
* the cranial nerve growth may mean that there are tumors in the fluid of her spine ("leptomeningal disease") in which case the treatment would be something like injecting chemo directly into the spinal fluid
* also because there's two growths in her head, they're ruling out surgery to work on the pituitary gland growth
* so they're recommending a ten-day whole-head radiation in the hopes that it successfully treats the cranial growth and the pituitary, and that the cancer hasn't metastasized to the spinal fluid
* potential head-radiation side effects include short-term memory loss and early-onset dementia, which is less likely given rebecca's overall health and age, but something we'll be weighing
we meet with the radiation specialist on monday to talk it over, and if it seems like the appropriate way forward we'll start radiation that day.
this is scary stuff! our hearts are beating quicker but our faith is strong. thanks for holding us in this time.
we give thanks for Life
we give thanks for Love
we give thanks for the health of baby solas
we give thanks for the restoration of rebecca's eyesight
we pray for rebecca's body to be clear of all tumors
we pray for wisdom in discerning the right path forward
in the name of jesus
in the name of mary, mother
in the name of mary, disciple
in the name of brigid of the well
in the name of the One
-- the macai-bolgers