The Event
May 16, 2021 by Stephanie Daigre, Team Member
Emily and Ben have been so humbled and completely overwhelmed with gratitude for the abundance of generosity, love, and support their family has received since Emily’s story went public. They want everyone to know that you have all made a difference and your contributions are valuable to them on so many levels! Every single message, prayer, meal, care package, donation, social media post, Etsy purchase, etc has sparked joy and hope, and has boosted their spirits during this dismal and terrifying time. To all of Emily’s Warriors out there, thank you for joining her army of fearless fighters… we see you, we feel your energy and we’re touched by your prayers, THANK YOU ! ! !
Update as of Saturday 5/15/2021
Early in the morning on Tuesday 5/4, Emily was struggling through her basic morning routine and as she was stepping into the shower she could feel that something wasn't right. She was frightened and she called out for Ben (her husband) and told him that she was lightheaded and could feel all kinds of things inside herself. While Ben was helping her back to their bed, she had another massive seizure. This time was different from previous seizure events and as she regained consciousness it was obvious that she was not okay.
The left side of her face was flaccid, her arms and legs were not functioning properly, and she didn't recognize her own husband. She was transported to Mercy Folsom Hospital where they did lab work and another CT scan of her head/brain. Her symptoms did not improve. Walking was difficult and unsafe, but as most of you know, she is a strong independent woman and nobody gets in her way, even when she doesn't know where she is or where she's going! She was given some medication to keep her calm and to help prevent any subsequent seizure activity.
Her labs indicated that her kidneys and liver were still not doing well and she was anemic. According to the ER physician, the CT looked the same as it had a week prior and since she was already under the care of an oncologist, he was not concerned with her condition. He wanted to send her home to have her follow up with the oncologist the next day. This was deeply concerning because Emily had already been prematurely discharged three times without a definitive diagnosis on her brain and liver masses.
The plan had been to “watch, wait, and hope,” that the liver and brain masses were related to the lymphoma, but the disease processes within her body were progressing faster than anyone was diagnosing and treating them. Stanford was progressive and they tried to keep her there. However, her insurance wouldn't continue to pay for her care once she was stable, so they were forced to send her back to the Mercy system. Perhaps we will add more later in a separate post about insurance and hospital bureaucracy, and how these things impacted Emily’s care, but for now we want to keep focused on Emily’s condition...
After hours of frustrating and exhausting negotiations with doctors (& HMO case management) we were finally able to get an emergency authorization for treatment at UCSF and they transported Emily directly to their neuro oncology unit under the care of Dr. Rubinstein. Within the first 24 hours, Emily was evaluated by countless doctors, nurses, and surgeons. Emily was still not herself so they allowed Ben to remain at her side 24/7. It was incredible and comforting to finally receive such attentive and collaborative care after their previous experiences.
Neurosurgery quickly diagnosed the brain tumor as a glioma. They want to surgically remove it as soon as possible. Oncology, hepatology, nephrology, hematology and the medicine team decided that they wanted to review ALL diagnostics including the tissue samples, labs, and scans from the other three hospitals before they can confirm or rediagnose the cellular type of her lymphoma. They are still waiting on one piece, lymph slides from MFH. The past 12 days have been focused on stabilizing Emily’s body systems for the safest possible surgical approach which will lead to the most positive outcome and longevity.
The first six days at UCSF were the most difficult for Emily because she was in a constant state of confusion and didn't remember anything beyond waking up on the morning of her last seizure. She was agitated and impulsive to the point that she was a danger to herself and she had to have a nursing assistant with her 24/7 even though Ben and Stephanie (sister-in-law) took turns being with her at all times. She had also lost her “filter” and her personality was set on hyperdrive. She simply wasn't herself.
For several days she was convinced that she was being trapped and experimented on. She thought Ben was part of it and she didn't trust anyone, so she ripped out her chemo port access and tried to fight her way out of the hospital. She couldn't differentiate between reality, hallucination, and dreams. Her body and her mind were both betraying her and everyday was a battle to reorient her mind, keep her safe, and help her body heal.
With the incredible staff at UCSF and with the support of the world's greatest husband, Emily’s cognition, neurological status, and memory have improved dramatically over the last week. She is still struggling with some memory loss and definitely still isn’t 100% back to her old self, but she is well on her way.
Emily will be taken into neurosurgery during the early morning hours on Monday 5/17/2021. The plan is to remove as much of the glioma as safely possible. They will determine a continued course of treatment depending on the stage, cellular type of the tumor, and if anything gets left behind. Once they know these things they can decide if she will need radiation and chemo, or just chemo to treat the rest of the metastases throughout her body. Emily and Ben will be needing our love, positive healing energy, and prayers now more than ever!
Thank you for being a part of our army and for following along on Emily's journey.
We’re forever thankful for all your love and support.
Please continue to share her story!