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RARE DISEASE SPOTLIGHT: Neuroendocrine tumors

Garage 10 would like to introduce the latest recipient of a financial gift, Mrs. Danielle Blackwood. Below she shares with us her journey through rare disease

  • Tell us about yourself

My name is Danielle Blackwood I have been married to my husband, Brian for 35 years. We have two grown children; Andrew (29) and Madeline (27) married to Alex. I

have been teaching for 30 years. Fifteen years in EBR and the last 15 at the LSU Laboratory School. I am passionate about teaching and building relationships with kids (middle school science). Brian and I are very active in our church, St. John’s UMC and love spending time with family and friends.

  • When were you initially diagnosed

I was diagnosed on June 12, 2020 after many misdiagnoses. The problem with NETs is that it can appear to be so many other illnesses. I had been having colonoscopies since 2006 complaining of “stomach issue,” but besides finding small noncancerous polyps there were no other significant findings. In 2019, I had my ovaries removed after years of pelvic pain and menopause symptoms. Again, no change and many of the symptoms persisted. Finally, in early 2020, I had severe pain in my right back, persistent shortness of breath and feelings of extreme fullness and I ended up at the after hours clinic to be diagnosed with a kidney stone. After follow up with my urologist that diagnosis was also ruled out. Lastly, I met with my gastroenterologist for my regularly scheduled appointment. Of course COVID did not allow for colonoscopies until June 5. I had a completely clear colonoscopy, but my doctor decided to go up into my small intestine to check for anything suspicious and she found “something.” The pathology came back a week later (June 12) with a diagnosis of Neuroendocrine Tumor of the ileum. On June 29, I had a right hemi-colectomy with removal of my terminal ileum and parts of my small and large intestine. Very typical of NETs patients the diagnosis can take 5 to 7 years and is often found by accident.

  • Feelings about a rare it curable, treatable and do you have to travel to see a specialist?

My cancer is not curable, but it is treatable. There are seven NET clinics in the United States and luckily one of those seven is in New Orleans at Ochsner’s Hospital (NOLA NETs). People come from all over the United States to see the doctors at the clinic and receive treatment. Since being diagnosed in June my feelings have been all over the place, but being rooted in my faith with constant reminders that I am not walking this path alone, but with family, friends, total strangers who have blessed me and very capable doctors I am taking life one day at a time.

  • Describe NETs

Neuroendocrine Tumors (neoplasms) can be found anywhere in your body. The tumors secrete hormones that cause other health issues beside the effects of the tumors. The most common place for tumors is in the midgut, but they can be found anywhere in the body from the lungs, pancreas, and liver to the brain. They are a “zebra” because they are usually the last thing a doctor would be looking for during diagnosis.

  • What does treatment look like for you?

The first line of treatment for me was to have surgery to remove the tumor in my small intestine. The surgery included removing my ileum and part of my large and small intestine. The next step is to monitor the symptoms of Carcinoid Syndrome (flushing, shortness of breath and other stomach issues). I will have blood work and/or scans every 3/6 months for the rest of my life. If my symptoms digress then the next step will be to have a monthly injection that works to control the hormones in the body, PRRT therapy, chemotherapy, radiation or more surgery. Another issue with NETs is that no two cases are alike. The plan of treatment for each patient can vary greatly so it is difficult to get a good idea of what might be in store for me.

  • What does it mean to you to be nominated for and receive a gift from Garage 10?

Again, I can only say how very blessed I have felt through out the last 9 months. I love my students so much and to think that one of them took the time to nominate me is just extra special. I am overwhelmed with gratitude. I am also so thankful for people who have taken the time to help others. I am in awe of people who follow through on an idea that is a true service to those in need.

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