My Doernbecher Story

Lexy's Story - Doernbecher Children's Hospital

Lexy's Story

By Monica, Lexy’s mom

Lexy was diagnosed with neurofibromatosis (NF-1) when she was two months old, and diagnosed with brain cancer at 14 months. When your child has cancer there are so many different ways you are pulled: We went to several different hospitals, but returned to Portland and OHSU Doernbecher when I was told about Dr. Stacy Nicholson and how wonderful and caring he was.

Dr. Nicholson really is so nice. I felt comfortable with him right off the bat. Lexy liked him too. She wasn’t even talking yet when she met him — because of the tumor, she wouldn’t start talking until she was 3 years old — but she smiled at him.

In addition to Dr. Nicholson, there’s a whole team for Lexy’s care at Doernbecher: Dr. Nazemi is very sweet and she helped us adjust a special kind of chemo to work better for Lexy. Dr. Tilford was always there with a smile and quick wit. We also love Chris Conrady. (He is Dr. SpongeBob to her!) Kathy Perko was great, and we adore the intake coordinators and nursing staff.

At Doernbecher, Lexy has had several rounds of chemo and many surgeries over the past seven years, including procedures to de-bulk her tumor. But it always grows back. Her tumor is like “The “Blob” and it has engulfed all the live vessels in her brain, rendering it inoperable. The cancer took her sight in 2012 on Friday the 13th. Her condition also has caused diabetes insipidus because her brain no longer can regulate her thirst and amount of urine output. She’s cold all the time due to hypothyroidism, she doesn’t sleep well and her left arm is paralyzed.

Lexy is “11 years young” and going through chemo once again at Doernbecher. She’s learning Braille and how to count with the abacus. She’s the happiest girl, always thinking of other kids: She has more than 5,000 followers on her Facebook page, and is always leaving encouraging voice mail messages to friends and family. She sings to them on their birthdays. Social media is really important when you have cancer. Lexy is also part of the Warner Pacific College Knights’ women’s basketball team under the direction of Coach Matt Gregg, with the help of Team IMPACT. She has her own jersey and is the sixth man on the team.

Everyone at Doernbecher has been so uplifting and hopeful. All the treatments, rounds of chemo and surgeries — we need a cure. We never want to hear “We can’t do anything more for your daughter.”

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