Help Gwen Fight Brain Cancer ATRT

I am setting up this fundraiser for my sister Gwen and my family to help better support her during her journey of fighting a rare brain cancer and to help ease any financial burdens for my parents during this already very life altering and stressful time.

A few weeks ago my sister Gwen whom has trisomy 21 (Down Syndrome) was rushed to the emergency room after she was unable to hold down food or water for days, was experiencing dizziness, weakness on one side of her body, and seemed to be in more distress than normal among other symptoms. While we were told by paramedics and nurses in the ER there wasn’t likely a reason to take her in, that she probably just had a stomach flu, and because she was able to laugh through her pain it couldn’t have been anything very serious my mom knew there was something really wrong despite what everyone else assured her. I too told her not to worry, that she was probably fine and that the weakness in one side of her face just looked like she was squinting from the sun being in her eyes. Thank god for mothers intuition because if it weren’t for her pushing that something was wrong with Gwen we’d likely be in a very different place right now. Within a few hours Gwen went from “having the flu” to finding a large mass on the left side of her brain. We were told it was likely a benign tumor called an acoustic neuroma, though due to the size steroids or radiation was not an option and they were going to have to operate. They explained to us the risks and recovery after surgery and we made a plan. 4 days later Gwen went into an 8 hour surgery, my mom and I waited at the hospital the entire day, sitting right by the phone, waiting for each hour they’d call to check in and tell us the surgery was still going well and there were no complications. After what felt like forever, Gwen was out of surgery, alive, and asking for a burger. Recovery in the ICU was longer than we expected as Gwen bit her tongue during surgery and it had swollen immensely so steroids, chocolate ice cream, and Lilo and Stitch was Gwen’s entire life for about a week before the swelling went down enough for Gwen to finally be released back home to her puppies and family. While a long recovery was anticipated, we never expected what news the biopsy would bring August 4th. Results of the biopsy of the tumor were not what we had hoped for. It was not an acoustic neuroma, it was not benign, it was a rare cancerous brain tumor that they could not even identify. There are no words to describe what this has been like for my family, especially for Gwen so this is all I feel I’m able to share at this time but I will update as we learn more information and the next steps to Gwen’s fight and recovery.

Any and ALL donations will be going directly to my family to take care of any expenses that come up and to Gwen to decide what she’d like to do with it and what will make her happy. Above anything else we just want Gwen to be happy and want to fight this so anything that will improve her quality of life we want to be able to give her. Any donation is appreciated, no matter how small as well as shares/reposts and thank you on behalf of my whole family for following along on Gwen’s journey to fight brain cancer

*A team of specialists are meeting August 11th to discuss diagnosis and next steps we will update asap*

Update: We received the final pathology back on Gwen's tumor on 9/8/22 and did not receive the news we had hoped for. They have identified her cancer as Atypical Teratoid Rhabdoid Tumor (AT/RT). This is a very rare brain tumor that normally is only found in children under three years of age, very, very rarely affecting adults. It is an aggressive and fast-growing tumor. As far as we know, Gwen is the first person with Down Syndrome reported to have this particular cancer. This is extremely overwhelming for our entire family, and we ask that you please keep us in your thoughts and prayers.

We are now waiting for word of definite next steps, which are looking to be chemotherapy and radiation. We are hoping that with this brain tumor being more common in children and with Gwen having Down Syndrome that we will be able to get her into the Phoenix Children's Hospital for treatment which we believe will make a huge difference for her. We are ready to do whatever it takes to save Gwen and prolong her life as long as we can. I can't begin to put into words how incredibly heartbroken and terrified I am watching her go through all of this, knowing I can't do anything to stop it. I wish so bad it was me instead. She doesn't deserve any of this.

I am going to ask my mom to update with more information as she knows a lot more than I do regarding Gwen's upcoming appointments and what specialists she will be seeing. Please continue to share and encourage anyone you may know that would potentially want to donate to do so. Again, all donations are going directly into an account for Gwen and my family should they need it for treatment, transportation to/from appointments, or anything Gwen might want or need, etc.

Thank you for reading, we will update soon.