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Cooper's Story

“Hi, I’m Cooper!” That’s how our adorable little guy greets everyone,

Cooper was 2 ½ when we noticed the lymph node on the ride side of his neck was enlarged. That was a Thursday in April of 2021. By the following Tuesday we took him to his pediatrician to have it checked out. They checked everything medically explainable that they thought it could possibly be, and ended up ruling out Lyme Disease, Cat Scratch Fever, ear infections, etc. We really received no answers except that they knew what it wasn’t.

As time passed, our energetic, silly, loving, cuddly, strong-willed boy was continually getting sicker by the day. He was running 103 temps constantly, laying in our lap every day refusing to eat or play, all while we were struggling to get answers, appointments, & tests scheduled or even someone to answer us at all. Frustrated, worried, disappointed, heartbroken; those are all words that you could use to explain the emotions of how it feels to go through the process of even trying to get answers when it comes to getting a diagnosis of a histiocytic disease.

Finally, after two long months of advocating and fighting, our ENT decided it was time to remove the right lymph node for a biopsy.

We were told the pathology results showed an “abundance of abnormal cells”. It was then explained to us by our ENT, that the cells they are referring to are called histiocytes, and although they didn’t believe Cooper had cancer, he was being referred to a pediatric oncologist.

No one ever wants to hear that their child is being referred to a pediatric oncologist. However, if there was an upside to this, we found it. We were so extremely blessed that our new oncologist had just moved to town from a large cancer center in New York a month before she received Cooper’s case. She had seen one case of Rosai-Dorfman (in a teenager) in her career, the disease that they had suspected Cooper to have. We truly believe God placed her into Cooper’s life.

A few weeks later, we were sent to Kansas City to have a PET scan done. This finally gave us the definitive answers that we were searching for.

The PET scan not only confirmed the diagnosis of Rosai-Dorfman Disease, but also showed that it was currently only in the lymph nodes of his neck, instead of spreading anywhere else in his body. The bad news was that the masses were impeding his airway. Now, it may sound strange that any parent would be excited that their child got a diagnosis of RDD, but at this point, we were just relieved to have answers and could finally come up with a treatment plan. We were given a few options but decided that chemo was our best option for shrinking the masses in Cooper’s neck.

After 18 months of chemo, Cooper was able to stop his daily oral chemo. Cooper must undergo MRI’s every three months to check the masses in his neck and we pray that they will not return.

We all want our little ones to be special, but this is not how we expected Cooper to become that way. His prognosis is good, although this is something he will live with for the rest of his life. So much more research is needed to help all who battle with histiocytic diseases. Thank you for allowing us to share the story of our precious Cooper.

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