Dara is spunky and stubborn and funny. She has a wonderful imagination that has its own beautiful logic, which drives her older brother crazy. She was diagnosed when she was three, but she is happy to tell everyone that she is four now.
The first signs of obvious illness were the day after Christmas 2017. We were away from home, and she became sick enough that our Pediatrician said to stop by an urgent care center before driving the three hours back to Maryland. Urgent Care sent us to the ER, the ER in Johnstown sent us to Children’s in Pittsburgh, and Children’s in Pittsburgh took out her appendix and treated her for a leg –infection. A scraped knee—from falling down—wasn’t healing correctly, which they knew because her fever was 105, the appendix had looked normal when they went in, and there was a large, raised red welt on her leg. Days later, we left, thinking the worst was over.
Over the next six weeks, although her cellulitis was healed, she was upset, bothered, and afraid, and we had no idea why. On President’s Day, we found out that it wasn’t a matter of parenting or discipline—it was a brain tumor. We had taken her to the doctor because she started walking like a drunk person. The next day, we found out the prognosis, and our world flipped over.
Our community and our church rallied around us and helped get us all through the initial radiation treatment. Weeks 2 and 3 were the worst—the steroids and the radiation and the tumor itself were really tough on her small body. I questioned why we were doing this. Over time, though, she felt better. All symptoms disappeared, and she was happy. The four of us- Dara, my husband, Dan, and our older son Sam- enjoyed a wonderful summer as a family. We went to Disney World, and she met Elsa and Anna!
Dara enrolled in an immunotherapy trial, but before the cells were ready to be reintroduced, we discovered that the tumor was growing back. It was the day after Halloween, All Saints’ Day. The MRI was showing progression before her symptoms caught up, so we were surprised. So, no immunotherapy.
We tried a chemotherapy trial for a month. That didn’t help. She was exhausted and increasingly symptomatic. Over the Christmas and New Years’ holidays, she had another round of radiation. That one was also tough. She experienced different symptoms and side effects than she did the first time around. We were not prepared! But who is? She was briefly back on steroids, then Avastin. In a few weeks, we’ll start another experimental medication.
Today, January 20, 2019, she is happy and cheerful and feeling much better than during the chemotherapy and the radiation. We are focused on her and her brother feeling loved. Although it is heartbreaking and hard, it is also, at times, joyous. It is also sacred. Our friends, family, coworkers, and church have supported our family in incredible, loving ways this entire time without pause, as has Defeat DIPG. Thank you all for enabling the time with our daughter to be as stress-free as possible given the circumstances. She is clearly loved by many.
Dara died on March 30, 2019.