If you haven't visited our sweet Miss Lily yet please keep the following in mind: her ability to speak has been gravely impaired so she cannot speak very well. However, she CAN understand you and knows her surroundings so do NOT speak about her as though she isn't there. She's immobile as well so she is 100% dependent on others as of today. Now all of that being said we believe visitors are the best thing she to lift her spirits. Come and share news, tales of your travels or to just chit chat.
Our beautiful Miss Lily was diagnosed with a brain tumor called GBM earlier this year and has been severely impacted ever since. She's had two brain surgeries, the most recent on September 6th. Since this surgery she has experienced side effects from surgery, and her overall health has decreased.
My poor Mom started experiencing symptoms last Christmas. All of a sudden, she couldn't talk, couldn't see and needed to lie down. None of us realized what was happening and if it weren't for my Auntie Linda we never would have gone to the hospital to have it checked out. Even after going to the ER and having them run a million tests, they couldn't figure out what was wrong with Mom. The DRs noticed that there were masses but wouldn't know anything else unless they took a biopsy.
Over the next few months Mom was going through hell. Her vision issues impacted her day to day and her ability to perform her job. She was so scared that her peers would judge her because of the incredibly basic errors she was making. She also couldn't understand what was happening to her vision and why, all of a sudden, she couldn't read. She would call me so upset at the end of the workday because she had to read the same document 10 times before feeling like it was completed and she could move on to the next. It was rough.
Then one evening in March, I was supposed to fly in from SFO and Mom sounded off. My flight ended up being cancelled and just as I was about to give up and reschedule my visit I decided to call Mom instead of texting her and I realized immediately that something was off. That night she completely lost her equilibrium and ability to to talk while suffering from a massive headache. That night she went back to the ER.
She was in the hospital for over the week. What started as a biopsy turned into a brain surgery where they removed the tumor. Based on her symptoms they knew they needed to remove whatever mass they saw. This surgery was a walk in the park. Mom was definitely impacted but she was still able to be herself and live her life.
Her summer was filled with fun activities as well as chemo and radiation. I don't know if she understood how severe her diagnosis was. She kept her illness under wraps for so many reasons. She didn't want to be judged or seen as sick or old. And since she chose not to google her diagnosis I don't know if she ever understood what she was up against. I'm grateful though because she did use this time to connect with people that she cares about.
Then on September 6th, she had her second brain surgery but this one would not be a cake walk. She had a tumor the size of a peach removed. During the surgery, her blood vessels were damaged which caused some of the side effects we've observed since. The cause of her decline seems to be a mixed bag based on what the doctors say. The damage from the surgery plus the damage from the summer of chemo and radiation left her in weak shape. Now add exhaustion from surgery and trying to bounce back but being too weak to be able to.
Right after the surgery, she was using a walker, talking, doing PT daily and was able to clearly express her frustrations about the hospital. The first major side effect was the loss of her right peripheral vision. Then her speech was impaired. At first she spoke normally but the words she was using didn't make sense in the context she was using. Then the words she used just didn't make sense at all. And week over week her speech dwindled away. Now trying to speak takes more energy than I think she has.
So here we are, in a tough spot but she's in a beautiful setting surrounded by people who love her and are showering her in that love. We're focused now on keeping her comfortable and making sure she has everything she needs and then some.
I hope this fills some gaps. There's so much more that went on but that's what I've got for you as of now. If you would like to donate to help us with the many unexpected expenses, we would really appreciate it. Here's the link: https://www.youcaring.com/ashleydiruggiero-967798.
Much love from Joe, Mom and I .