My sweet, spunky, fashionista and nature loving of a daughter Khloe was diagnosed November 2016 with Malignant Polycytic Astrocytoma Glioma. The main tumor was within her brainstem and caused major hydrocephalus, immediately they rushed her into the OR and placed an external ventricular shunt. After 5 days of draining the fluid she was able to have a resuction, 14.5 hour brain surgery and 90% was removed. (It was the size of a softball)The tumor metastasis to her spine and a new one appeared this past summer of 2017. She has had minimal complications compared to all the risks that were against us until now. I mean she does have optic nerve damage, neuropathy throughout her little body, balance and coordination struggles, some hearing loss and nerve damage to her throat, but we were handling it...last week (April4, 2018) we went to her 3 month routine MRI and it was also set to be her last treatment because of timing and that all changed...within 3 months there's been significant growth in her brainstem where the resection took place along with a new tumor in the cerebellum, right temporal horn and spine. Her Oncologist is absolutely amazing and has met with the North East Brain Tumor board to discuss our options. She also reached out to other colleagues in Boston and NYC. After further discussion Khloe's medical care team has decided that Boston is our best option. There they have 2 possibly 3 clinical trials which Khloe is eligible for and if all else fails we have radiation as well. Unfortunately these trials consist of several visits along with monthly stays in Boston. This is going to be difficult, I haven't been able to return to work since her diagnosis, so finances have been extremely worrisome, but if there is a will there is a way and I truly believe we are in good hands! We can't wait to get over this bump in our journey.
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