It was late 2009 and Ava was four years old when she started developing neck pain. We took her back and forth to our pediatrician without any definitive answer. After a few occurrences of severe neck accompanied by vomiting we felt as though blood work should be taken. The blood work showed that she had lymes disease, however both her Infectious Disease and Orthopedic doctors felt the two were not related. Not being convinced this was the true cause to her pain, we kept a close eye on Ava while she finished the medications. Call it a mother’s instinct, but I was the only one who really knew something else was going on. There were subtle things that only a mother would pick up on which led my worries to grow.
On the night of March 8, 2010 Ava’s pain was very severe and was vomiting all night long. Both my husband and I thought it was time to bring her to the hospital the following morning. After consulting with our pediatrician in the morning, he said we should get an MRI to rule out any sort of mass. With an immense amount of fears and nerves, we rushed her to Monmouth Medical Center to get her MRI. After her getting a consultation from several different doctors that morning (including a Pediatric Neurologist) they all said there was nothing wrong with her and we should go home. In fact, I remember the Neurologist specifically stating to us, “I wouldn’t worry about anything, she’s perfectly fine.” After nearly going home that night, we decided to stay and get the MRI the next morning.
It was now March 10, 2010 and we finally got Ava’s MRI. My husband and I were sitting in the waiting room when the unthinkable happened. The same Pediatric Neurologist who gave Ava a clean bill of health 12 hours earlier walked in while Ava was still getting her scan. She sat down in front of us with tears in her eyes and muttered the words, “I’m sorry. I was very wrong.” I felt like I was dreaming as she continued to go on stating there was a very large mass in Ava’s brain and it needs to be addressed immediately. We asked if it was cancer and her response was “yes, almost certainly.” I wasn’t even comprehending what she was saying when my husband asked “is she going to die?” The Neurologist then nodded and said, “it’s a possibility.” And with those three words, we knew our life would never be the same.
After a complete body scan revealed the tumor was localized to one spot, we were rushed by Ambulance to Columbia Presbyterian Hospital where we were greeted by Dr. Neil Feldstein, Director of Pediatric Neurosurgery at Columbia. She underwent her first surgery that night to relieve some of the pressure and swelling with the big surgery scheduled for the following morning.
On March 11, 2010 Ava went through a 6 hour long surgery to remove the tumor in the lower forth ventricle of her brain. Immediately following her surgery, Dr. Feldstein greeted us with the best of news. He was able to complete a 100% resection of the tumor and the early pathology reports stated the tumor was benign and it was Pilomyxoid Astrocytoma. While we were thrilled with the early diagnosis, Dr. Feldstein suggested we temper our excitement until she awakes from surgery because waking up from that long of surgery with no side-effects is sometimes difficult, especially speech. He told us to hope we hear her crying when she’s brought back to her room. 30 minutes later, the elevator doors opened to the most beautiful cries I’ve ever heard. As they wheeled her back to our room the nurse pulled me aside and said, “as soon as the anesthesia was done, Ava looked at me and said, GET MY MOMMY!”
It’s two years and several MRIs later and Ava is completely tumor free and is doing great! She continues to go through MRIs and doctor visits every 6 months. She loves playing at home with her brothers and is doing great in school.
This has changed our lives forever and we are truly grateful that Ava is happy and healthy.
(Ava’s mom, Jess)