The Abby’s Army NC foundation was started after our daughter was diagnosed with a malignant brain tumor, had surgery to remove it, and went through radiation & chemotherapy treatments for pediatric brain cancer. Since the beginning of our journey, we saw how our daughter and family were affected by the treatments, appointments, and time away from each other. We wanted to take what we’ve experienced and use it to help other children and their families cope with all that this diagnosis entails.
As of August 2023, Abby continues to do well and remains cancer-free. She has been in remission for 7 years. The number of medical appointments has lessened, but Abby still deals with the late effects from her treatments every single day. Thank you to everyone for your continued support, love, and prayers. We are grateful and blessed.
Abby’s story is below….it was the first post we wrote to let everyone know what our family and Abby were going through. To follow Abby’s journey, please visit her caringbridge site.
Abby is our 5 year old daughter. The second child of 4. The middle girl, or “the medium” girl as she likes to say. She started getting headaches in the summer of 2015. They were short, intense headaches right in the middle of her forehead. They only happened once every few weeks. We didn’t think anything of it. Thought maybe she was dehydrated from playing and swimming outside. The headaches went away quickly and then that was it. There was no falling down. There were no seizures. No vision changes. No nausea. No vomiting. Nothing. But, the headaches started getting more frequent and sometimes waking her up at night. Around December of 2015, they were frequent enough that we thought we should take her in to get checked. At the beginning of January 2016, we took her to her primary care doctor. I can’t thank Rex Pediatrics of Cary, Dr. Andrawes and Dr. Bell, for listening to what we said and doing something about it. They referred us to a pediatric ophthalmologist, Dr. Board, at the Raleigh Eye Center just to make sure it wasn’t related to having vision problems. Abby’s appointment with him was on January 13th. He said her optic nerves were swollen, which happens when there is too much pressure in the brain. He referred us to a neurologist, who we needed to see the next morning. On January 14th, we went to Raleigh Neurology and saw Dr. Shaeffer. She went through all the neuro tests, and Abby passed with no problem. But, she wanted to send her for an MRI due to the swollen optic nerves and the headaches. That afternoon, Abby was getting her first MRI. Seeing her tiny little body in that machine with her pink boots sticking out was an image I won’t forget. She was very brave. When they said they needed to give her contrast, which pretty much means a needle in the arm, I knew something wasn’t good. After 20 minutes of talking, Abby let them do it. When all was over, I thought we would be okay. When the tech took us back to a private room and told us the neurologist would be calling us, I knew something wasn’t right. I knew it was not good news. I waited, then we came out to the waiting room. In the middle of the waiting room, the neurologist called. Abby had a large mass in her brain. Large enough that we needed to go home, pack our bags, and go to Duke ER to get admitted so that a neurosurgeon could see her the next morning. In that second, everything changed….everything. I called my husband, Dave, and told him what I could. Called my mom in Pittsburgh and told her to fly to Raleigh. Called my work, who is like family, and told them I wouldn’t be in and I didn’t know when I would be back. Then, everything is a blur.
We went to the ER that night. The next day, January 15th, Abby had a 5 hour brain surgery to remove the tumor. We were in the hospital from January 14th to the 19th. Her neurosurgeon, Dr.EricThompson, and his team were amazing, and they completely removed the tumor. Her follow up MRI and CT scan were clear. On January 17th, we were told that preliminary tests are finding that the tumor was cancerous. They weren’t sure on a game plan for treatment, so we were able to go home on the 19th. By the second day home, you wouldn’t even know the girl had surgery. She was playing, dancing, singing, fighting, and enjoying everything she did before. It was amazing. But, we knew we still had treatments ahead. That’s when we met our neuro oncologist, Dr. Schroeder, and our radiation oncologist, Dr. Larrier. While waiting on genetics of the tumor, we were figuring out what Abby would need to continue treatment. The waiting was hard. During this time, she had x-rays, a lumbar puncture (which was clear!), was fitted for a radiation mask, had a suture removed, gave bloodwork, and had a radiation simulation….and it’s only been a month since surgery.
Abby was diagnosed with a supratentorial PNET, a rare, aggressive, malignant tumor. And, as I’m finishing this story, we found out that it did NOT have the high grade glioma mutation (good thing long term), but now instead of localized radiation, she would require 6 weeks of daily low dose craniospinal radiation and then four rounds of IV chemo.
So, here we are today. A day or two away from starting treatment. We have gone over what to expect. Every day Abby asks “is today the laser day?”. Nope, not until Monday. We talked to her about losing her hair, wearing scarves or hats, and she’s just taking it all in. She has amazing friends and family who are agreeing to also wear scarves, hats, and even get their heads shaved. We haven’t told her all the other side effects. Things we will just have to wait and watch for. So, we will keep moving forward, but not look too far ahead. Take it one day at a time. We are staying very positive. We ask for prayers and positive thoughts.
We want to thank every single person that has sent us a gift, card, text, prayer, dinner, dessert, stuffed animal, blanket, and toy. Each and every gesture means so much to us. We really appreciate all the love and support. Thank you!
xoxo,
Lisa and family
