Archives for November 2020

I am Sandy Meaders from Laurel, Mississippi. My wife Barbara and I are retired from the general rental, hardware, paint business. We have four grown children and five grandchildren. We are also rescuees of a dog named Apple.

During the pre-op for knee replacement, a tumor was detected in my chest. It was removed via a thoracotomy in December of 2018 and I was diagnosed with EHE in January of 2019. Because the tumor was encasing my vena cava, ten percent of it could not be removed. Since then, I have had regular scans and tests done at MD Anderson. Dr. Ravi has recommended a “watch and see” approach and I have not had any treatments to date. Like most others, I had never heard of EHE. This began an educational journey.

The EHE Foundation and its supportive community have been invaluable to my learning curve. EHE is challenging because it is extremely rare and therefore there is lack of data. This underscores the value of The EHE Foundation. The foundation funds EHE research, which is the best chance of finding a cure, providing effective treatments and giving hope to those who have been diagnosed. Again, The EHE Foundation has been a wonderful source of information. I was given an added level of hope when I found out about this special group. It has given me a sense of empowerment, inclusion and strength that I really needed.

Kari was only 44 when she passed away after fighting a two-year battle with EHE. We continue to fight in her memory and to honor her absolute pride and joy, her young daughter Serenity Paige.

Kari always dreamed of being a mother, but wasn’t sure it would happen. When finally realized she was going to be a mommy, she was so incredibly excited and glowed throughout her entire pregnancy. The little baby she was carrying quickly became her whole entire life. Shortly after Serenity Paige was born, Kari began having severe pain. Doctors originally thought it was her gall bladder, which was quickly removed. When the pain continued and there were no answers, we all knew something wasn’t right. Just months after having her baby girl, Kari was diagnosed with EHE, which affected her lungs.

Our world was turned upside down. Kari knew the only thing to do was to fight because she wasn’t going to allow her baby to grow up without a mama. Kari began chemo and radiation all while working and being a single mother to her daughter. Kari fought hard for two very long and tiring years. Two years of watching Serenity grow, two years of back and forth trips to the Mayo Clinic, two years of appointments, tests, scans, chemo and radiation, two years of insufferable pain and agony, and two years of trying to make the most out of her situation, and two years of making more memories with her loved ones. She took her last breath surrounded by the people who loved her most…her family. Her baby girl said her final goodbye to her mommy and with a kiss on her cheek, we let her go.

Now two years after her passing, we still continue to love and miss her every single day. She was the glue that bound us together. Kari was always full of life. She was an amazing mother, daughter, aunt, cousin, and friend. We find comfort in knowing that she is no longer in pain and is free from all the hurt this world brings. Kari always knew what she wanted out of life and always went for it no matter how easy or hard it was. Her stubborn, independent, and opinionated personality is what made her beautifully her. She could be hard headed, but she also had the biggest heart and compassion for those around her.

The biggest blessing is that she left us to care and love for her now 4 year old daughter. Serenity is a bright light in our lives and shares her mother’s personality and infectious smile. We are so lucky to have a little piece of Kari right beside us every single day. All of Kari’s pride and joy is wrapped up in her precious daughter. Our family is grateful to all of you at The EHE Foundation who walked through this with her, encouraged her, and supported her in many ways through this difficult journey. – Michaela Delgado, Niece of Kari Kewish