Mighty Mia - Neuroblastoma

The first week of March 2019, Mia spiked a fever. She had been sick a lot on and off for the previous 2 months. We took her to the doctor and they noticed her lymph nodes were swollen, she had a fever and had a small scratch on her finger. They diagnosed her with cat scratch fever and prescribed her antibiotics. Despite finishing the full course of antibiotics she kept her fever for 2 weeks. She was so sick and was complaining of lower back and leg pain as well. Our best friend's son had just been diagnosed with leaukemia with similar symptoms and of course that's where our minds went. When her fever wouldn't go away the doctors decided to do blood work. All her blood counts were normal except her HGB was low. They told us we didn't need to worry about cancer since her counts were mostly good and they put her on iron supplements. Within a day of starting iron her fever went away. But she was having back pain and not pooping so they did an x-ray and found she was constipated so we stopped the iron and had to do a 3 day long clean out (miralax, suppositories and laxatives). At the end of her clean out the fever was back and she was still in pain.

On Saturday March 23, 2019, she felt okay enough to go for a walk with dad in the backyard. She bent down to pick a flower and couldn't stand back up by herself. The next morning she couldn't get out of bed by herself and was screaming in pain anytime she moved. That afternoon we took her to WakeMed Children's Emergency Room. I told probably 10 people the same story about why we had come in and everyone agreed something wasn't right and we weren't leaving without some answers. We ended up being admitted after labs and x-rays didn't give any answers. They ordered a CT scan for the next morning. That scan would change our lives.

After her CT scan the doctors came in and told us that had found a mass above her kidney and we had a choice to go to UNC or Duke for further testing/treatment. We were transferred to UNC where we learned that it was actually so much more than just the one mass. Over that week she underwent many more tests (MRI, MIBG, and bone marrow aspiration) and a biopsy to check the biology of her tumor. She had a baseball sized tumor on her adrenal gland, several affected lymph nodes, lesions on her lower 5 vertebrae, sacrum, pelvis, femurs and left shoulder blade and significant bone marrow involvement.

On March 29, we got our confirmation that Mia had stage 4 high risk Neuroblastoma. She began chemo the next day. Mia underwent 5 rounds of chemotherapy, a failed attempt at MIBG therapy, tumor resection surgery, 2 stem cell transplants, 12 rounds of radiation, and 6 rounds of immunotherapy. She spent 278 nights in the hospital during her treatment.

On May 15, 2020 Mia was declared no evidence of disease! She completed treatment in August 2020. We chose to enroll Mia in the DFMO trial as a way to hopefully keep her cancer from ever coming back. She has to take DFMO pills daily for 2 years as part of the trial.