On July 27, 2017 Anne endured yet another 6 month MRI only to find out Medullablastoma has reared its ugly head yet again. Four years was not long enough - she wanted a lifetime of hearing "your scans look good". She deserved that.
Medullablastoma destroyed the life she was expecting to live and gave her a different one. One of loneliness, heartbreak, fear, pain, disabilities, memory loss, lack of endurance, tiredness, depression. Yet, she was willing to accept that life, to challenge herself and make it a better life; to persevere and strive to overcome some of these hurdles. She was willing to move forward and fight for a future - one that would include independence, happiness, fulfillment. Medullablastoma has again destroyed that future - has again attacked mercilessly -without care or conscious. Has again caused devastation and chaos in her life.
She now has to fight an even harder fight - a battle against a demon that has become stronger - resistant. Her teams both in Madison and Chicago are fighting for her, working together trying to find a protocol that will work for her, trying to give her a chance, hope, a life. Her best chance at this point is a treatment called Antiangiogenic Metronomic Therapy. Anne underwent her 3rd brain surgery on August 7 where Dr Baskaya removed all the new growth. This time the surgery caused damage to her speech and further balance issues. It also seems to have affected her right hand - she is hoping this is not permanent as creating art is her passion. She then had to have her chest port put back in and an ommya reservoir so they can administer chemo to her brain. She also had to have a GI feeding tube put in as her weight is dangerously low. After healing they were able to start her treatment on Sept 18th.
This is a very aggressive treatment - it is a multi drug combination regimen (consisting of 5 different chemo's and 2 other drugs) Some of the chemo's are oral which she will take on a daily basis and the other ones will be administered through her ommya reservoir and chest port every two weeks (once a month she will get a chemo for 5 consecutive days). We were told there is no ending to this treatment. This treatment is hard on her - she is a fighter but there are days when she has no fight in her - that is when we hold her up - to try and give her the strength she needs to fight and then fight some more. This is all to be done in Madison as that is where her main team is. Dr. Puccutti suggested genomic testing and we agreed. We are hoping this testing will help them find a way to eradicate her cancer.