Nicole’s Story

Site created on March 7, 2019

Nicole was initially diagnosed with a brain tumor in early 2019.  After seeking a second opinion, she was officially diagnosed with Erdheim-Chester disease, a rare type of blood cancer.  ECD is such a rare condition, for many years treatment options were minimal due to limited clinical data available. Due to recent advances in the field, the medical community has never been better equipped to identify and treat this disease. If you'd like to know more about ECD, better understand what Nicole is facing, and explore other ways to help in the larger fight against this disease, please visit the ECD Global Alliance at http://erdheim-chester.org/

We are filled with gratitude for our amazing family and friends who have surrounded us with love and generosity. We thought this site would be a great way for us to provide everyone with updates on her journey. We also want to create a space for all of you, near and far, to interact with her by posting your well wishes, pictures, favorite Nicole stories, and words of encouragement.

The words often used to describe Nicole: Kind. Thoughtful. Generous. Fun. Goofy. Wife. Friend. Mom. Daughter. Bestie. Sister. Neighbor. Family.

To those, we now add: Brave. Positive. Strong. Real. Courageous.

Newest Update

Journal entry by TJ Westphal

Hi everyone, 

We have more wonderful news to share! Nicole reached her 6-month treatment milestone and underwent a brain MRI, PET/CT scan and blood work. The tests revealed that the chemo medication is working. She has achieved a "nearly complete metabolic response," meaning the brain lesions are almost completely gone. After reviewing the MRI study, Dr. Ney said her brain stem looks like any other normal, healthy brain stem should look. There is no more evidence of any disease affecting that part of her brain. There is also improvement in the lesions affecting her lungs and bones. It is very encouraging to know that she is still tolerating the medication well with minimal side effects and it is working to essentially stop the underlying mutation in her blood. Dr. Ney is thrilled with her results so far. He said this is the best possible outcome he could have expected up to this point. 

Over the past few months of treatment, we've observed her symptoms improving steadily, but it was quite a relief to have objective confirmation from the Dr. to validate her improvement. Now that the disease process affecting her brain stem is under control, we are seeing clear signs that her brain is beginning to repair itself and compensate for the damage that occurred. Her energy and stamina levels are much improved. Her vision, balance and speech are improving as well. Dr. Ney said neurological recovery takes time due to the complexity of the brain, however, we are all thrilled with her excellent response so far. 

Nicole will go back for more tests in June of 2020 to track her progress. Until then, we’re staying the course and hoping for continued recovery. We remain ever grateful to everyone for their love and support. 2019 has been a tough year, but Nicole is tougher! 

We are excited to be traveling to North Dakota to spend the upcoming holidays with Nicole’s family. We’re looking forward to some much-needed relaxation and what will surely be a special time. Until the next update, we wish you all a very Merry Christmas and Happy New Year. Please know you are in our hearts wherever you may be. 

With love,

The Westphals

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