CHASE O'BRIEN
In August of 2021 Chase started his first year of school, Kindergarten! What was supposed to be a year full of joy, cultivating friendships, and learning quickly turned into the fight of his life. On November 2, 2021 Chase woke up with left-sided weakness, left-facial droop, and a general feeling of unwellness. Leading up to this, Chase had daily morning vomiting for approximately 2 weeks which was attributed to a virus by many providers. Chase was immediately taken to the Emergency Department as a Stroke Alert and taken back for emergency imaging. Approximately 45 minutes later, child life came to play with Chase while my husband and myself were taken to a separate room to be told our son had a very large brain tumor near, and possibly inside, his brain stem. The immediate prognosis looked grim.
Before we could even call our families, neurosurgery was in Chase's room preparing him for intubation to place a drain to relieve the severe pressure in his head caused by the tumor blocking the flow of cerebrospinal fluid. Procedures moved so quickly that we didn't have an opportunity to tell Chase what was happening. Chase was emergently intubated, the drain placed, and sent to MRI for 4 1/2 hours to determine if the tumor had metastasized anywhere else in his body. While Chase was having his MRI, the chaplain came to sit with us and take us to Chase's PICU room where we would spend the next 11 days of our life.
Chase came back to us around 1am. Shortly after, neurosurgery came up to give us the MRI report and the good news that the tumor had not metastasized to any other locations in his little body. On November 3, 2021 Chase went down for surgery for approximately 10 hours. During surgery a remarkable 70% of the tumor was removed and came out much easier than our neurosurgeon (Dr. Lisa Apfel) anticipated. The immediate period post surgery was very important. We had no idea if he would wake up and what deficits he would have. Chase woke up beautifully and followed the instructions of his neurosurgeon. Once he was awake, we partnered with our Child Life Specialist to help him understand what happened.
Near the end of his hospital stay, we received amazing news from the Hematopatholgist that his tumor was a Juvenile Pilocytic Astrocytoma WHO Grade 1. This tumor is considered benign, and the most slow growing pediatric brain tumor with the best long-term prognosis. Over the next 9 days, Chase worked hard to recover and after discharge we headed to Children's National in Washington, DC to finalize a plan of attack to remove and / or stop the growth of the remaining 30%. Despite the diagnosis, Chase would still need a plan to shrink the remainder of his tumor since it was in a location with such precious real estate.
In May 2022 Chase started chemotherapy to shrink the remainder of his tumor. Over 10 months Chase endured 33 chemotherapy treatments, a hospital admission for neutropenic fever, and two hospital admissions related to autoimmune hemolytic anemia which required several blood transfusions. Chase completed his final round of chemotherapy on March 24, 2023. He experienced an amazing response to chemotherapy with his tumor and cysts shrinking significantly, which isn't always seen with his tumor type. Chase will travel to Children's National every 3 months for routine MRI's to monitor the tumor.
Chase has made an amazing recovery and persevered through relearning to walk, feed himself, dress himself, etc. through over a year of physical and occupational therapy. Should you have the chance to meet Chase, you would never know he has a brain tumor as there are very little deficits thanks to our amazing neurosurgeon and entire care team. Chase is extremely active, playing soccer, baseball and swimming. He can't wait to try basketball and football next season!
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