In November of 2021, Amy was diagnosed with Glioblastoma (GBM) after sudden seizures. At this time, there is no cure for this type of cancer and treatment for GBM has been only moderately helpful in general. Amy, Khush, her kids, and of course her team of doctors at The Ivy Brain Tumor Center at Barrow Brain & Spine in Phoenix evaluated existing treatment options, and determined that she was a good candidate for participation in a research study with a chemotherapeutic drug called Niraparib, coupled with surgery and radiation. In March 2022 she had a right frontal craniotomy and tumor excision, essentially meaning they removed as much of the tumor matter as they could. This was followed by radiation therapy and ongoing Niraparib. She did really well after this until November 2022 when she began to suffer some severe neurological symptoms due to the harsh treatment effects. In other words, the successful treatment had now resulted in severe swelling in her brain and she needed to have that managed. She was put on high dose steroids and chemotherapy infusions to control the swelling. Almost immediately, she experienced a lot of relief and was again doing well in general. She was weaned off of steroids and she saw some blue water until mid-November 2023 when she had a tumor recurrence.
December 1, 2023 she underwent tumor debulking surgery, removing the tumor matter they were able to access. Recovery was uneventful at first, but when the stitches were removed, a spinal fluid leak thru the incision on her right temple developed. Subsequently, she had surgery in mid December to have a right VP shunt placed, which is a device inserted into the head down to the abdomen to divert the flow of cerebrospinal fluid and allow the incision to heal. Unfortunately the leaking continued. A left VP shunt was placed in the end of December. During the time from December 1-27, she had 3 more seizures due brain irritation and her underlying problems from the tumor and its treatment. The leaking continued after the new shunt was addes so the nuerosurgery team revised the left shunt mid January 2024. Even then, the leaking continued. Ultimately, she had a 5th surgery in 8 weeks to revise the incision for the surgery in early December and patch the leak on January 31. Hopefully this works and we can get her home.
On a brighter note, she really has done very well with the research aspect as well. Her data and response has allowed the drug to go phase 3 trials, allowing it to become available to many more people. Amy has been incredibly brave and strong in her fight against this terrible disease. We are incredibly grateful for the outpouring of love and care of friends and family from all points of the compass has been of immeasurable help. Please reach out to Lily at (520)955-1063 to schedule a time to visit if you would like to :)
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