Hello, this is Nicole's brother Chris. I wanted to start this blog for her in the hope that there are some angels out there to help my sister.
She has been fighting a courageous battle against brain cancer for the last 23 years. Nicole has endured 3 brain surgeries, chemotherapy without a port for several months and numerous rounds of radiation. She was diagnosed when she was 19, just starting college and preparing for the rest of her life. There is no doubt she is a miracle as she only had a 10-15% chance to live more than two years. Tragically,the impending scar tissue turned into epilepsy and her life has never been the same. Because the epilepsy was debilitating, she lost her ability to work, go to school, drive or basically leave the house living at my Mothers for her entire life. Sadly, this is the first time she's ever lived anywhere but home and it happens to be a nursing home where she is the youngest member by at least 25 years.
How she got there I think is the most tragic story and I will attempt to tell it here as briefly and thoroughly as I can. As I mentioned, Nicole has been suffering with a progressive glioma related epilepsy for about 20 years now. That's not the official diagnosis but think it's an accurate description. The epilepsy is caused by the scar tissue that has been building up over time. She had one scar tissue removal procedure done around 8 years ago I think and the result was she lost more of her functioning brain, lost her ability to talk for around a month and seriously further reduced her cognitive ability. The really difficult part is the epilepsy returned and the seizures got worse.
This brings us to the recent past, 8-9 months ago now where Nicole was so fired up to go in and get rid of the scar tissue for good. She had dreams of driving again, perhaps getting a part time job, basically just re-acclimating to society. The doctor was touting an 85%-90% chance that this would be successful as I heard it. Apparently, there was another meeting where he mentioned the chance of stroke but nobody seemed alarmed by it so we moved forward...
The rest as they say is history, tragic history as the scar tissue allegedly was so dense that the doctor had to scrape (word he used) harder than normal and the result was a rupturing of her blood vessels inside the brain and ultimately a stroke.
This brings us to today where she is still paralyzed on her left side, her vision is extremely poor, she can't walk or talk. She suffers from Apraxia and can't even say her name. Needless to say, it's been difficult for everyone involved to deal with her new reality, I'm sure, most especially her. You would never know it though as she manages a smile every day and is the most gentle, kind and loving person anyone would ever meet.
I'm just bummed that she never really got a chance to recover. As soon as she was moved into her first rehab, she conducted pneumonia which anybody who's had it would know how exhausting and debilitating it is. So, there goes two to three weeks of precious rehab. She finally recovers, only has a few more days of good rehab at RIM of Michigan then gets informed that she has to leave because she's not making fast enough progress, what?!! Without getting too emotional here, everyone was stunned as she ended up in a smelly less than adequate nursing center called Clinton Aire. I called it Clinton stinky Aire because of how much it wreaked but she seemed somewhat happy there as she met a friend her age as was getting therapy. Could be better but also could be worse so we cautiously moved forward there.
After a couple or more weeks at stinky Aire, the nurses neglected the wound on the side of her head and she conducted c-diff which is a nasty intestinal bacteria that is difficult to treat. So, again, more down time without any therapy, time is wasting... She finally heals from that and has to endure a nasty plastic surgery procedure where they take a slice of skin from her leg (why they didn't take it from her bad leg I still don't know) and attach it to her skull so they can pull down the skin to close the open hole that was in the side of her head. This beautiful young woman now has a reverse Mohawk and it's not because she's trying to be a hipster or anything...
Meanwhile, her Medicare days continued to tick away... First going through pneumonia after brain surgery and now c-diff which takes a long time to recover as well and her therapy days are now pretty much gone. In fact, they have been gone now for over a month and she's finally relatively healthy and ready to start back on regaining her speech and motor functions that have been lost. The only bad thing is now there are no funds to pay for any of it. She is relying solely on Medicaid to pay for her bed at a very modest nursing facility and there are no funds for any type of physical, speech or occupational therapy, none...
This brings me back to the purpose of this blog. The most important thing Nicole needs now are donations. We have to hire therapists to come in from the outside to work with her wherever she is going to be for the next 10-11 months. Ideally, she's supposed to be getting some kind of therapy everyday, preferably all three Monday through Friday. As you can imagine, this is expensive, around $75-100 a session from what I understand. We want good therapists to work with her as right now is her best and only chance to regain just her basic functions. Right now, she is stuck in a bed completely reliant upon the pseudo nurses there to change her, feed her, I won't get into the rest of it, you get the idea.
My goal is to raise $7000-10,000 initially which would probably buy her 4 months of therapy and maybe some normal meals which myself and my mom have been providing the best we can instead of her normal grilled cheese or peanut butter and jelly sandwiches. She deserves so much more based on not only what she's been through but the kind of person she is.
So, if you can find it in your budget to donate, we as Nicole's family and I Nicole herself would be eternally grateful. If anyone would like to visit her to see what it's like to meet an angel on this earth, please reach out to me and I can arrange a visit. This is the most important cause of my life and I'd like to thank you for reading this and of course your consideration of a donation.
There should be a donate icon at the right hand side of the page. I plan to post her donations on this blog and would gladly keep it anonymous if you request. I also plan to update with Nicoles progress with videos of her going through therapy so you can see the struggle she faces and feel rewarded as she makes progress.
Thanks so much and God Bless,
Chris
