Honored Kid

Savannah D.

Age 14
Savannah D. Kid Photo

Location

Saint John, IN, US

Diagnosis

Neuroblastoma

Date of Diagnosis

February 2013

Status

In treatment

Treated At

University of Chicago Comer's Children's Hospital

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My Story

Thank you for supporting me and the more than 300,000 kids worldwide who will be diagnosed with cancer this year. By sharing the gifts of your time, talent and money with the St. Baldrick’s Foundation, you're supporting research to give all kids with cancer a better chance for a cure. Savannah had always been a healthy happy child. Then suddenly in January 2013 we started to notice significant weight loss and her hair was beginning to fall out. She couldn't stay awake most of the time. She completely stopped eating. We had no clue what to do. It was apparent that our daughter was dying right in front of us and no one could give us an answer why. After repeated doctor appointments and a few trips to the ER that got us no where because the doctors wouldn't listen to me. I finally begged my husband to drag both my children into the ER at 4 am on a cold February morning. I finally found a doctor that would listen to my story and took my seriously. She was immediately brought to the CT scanner. I helped her through it because I knew in my heart something was gravely wrong with my baby. I just had to make sure she couldn't see me cry. I just kept praying the whole time that it was something simple like a bowel obstruction. Since it was close to change of shift in the ER, I walked back up to my unit to finish out my own shift while waiting for her results. Yes, folks I was punched in when I found out my life was going to change forever. Within 15 minutes my husband was calling me to come back down to the ER because the doctor needed to speak with both of us. I immediately felt like throwing up. We were pulled into a separate room and told to sit down. The doctor then told us they found an extremely large mass on her right adrenal gland that was suspicious for malignancy. Then next day was a complete blur. I couldn't even look at my own child because I was too afraid I would completely lose it in front of her. We were transported to the University of Chicago Children's Hospital that day to begin another whirlwind of paper signing, talking with 900 doctors, and basically being told how grim my daughter's diagnosis was. Not knowing I was dealing with the NB expert, Dr. Cohn, I ended up telling her she was probably mistaken at that point and I just knew I was going to never leave the hospital with my daughter again. We spent 12 days in the hospital. She was officially diagnosed with stage 4, unfavorable, high-risk Neuroblastoma. Piled high with a oncogene called N-MYC amplification, which is just a fancy way of saying your daughters tumor is extremely aggressive and doesn't have a good outcome. Over the past year I have watched my baby girl endure treatments, medications, 6 rounds of chemo, a 9 hour surgery, a brutal stem cell transplant that almost killed her, 20 rounds of radiation, and finally we are in the middle of antibody therapy. Her last set of scans showed NED. Those 3 letters are music to a NB parents ears, but we will always live in fear. Nothing will ever be the same again. In spite of all of that, my daughter is the most amazing little person. She has developed a wisdom beyond her years. Has more medical knowledge than a 6 year old should ever have. She is the bravest person I know. Not knowing how long I will have my baby around is the hardest part. She's healthy now, but that evil lurking monster can come back at any moment. This has to stop. We need more research. We need funding for research. This is where organizations like St. Baldrick's come in.

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