Charli Carr
Written by Charli's Mom, Jami:
"I remember the exact moment I heard Princess Diana had died, that Jerry Garcia was gone, when 9-11 changed our world. That moment in life where everything stops and you know, in every bit of your being, that nothing will ever be the same. Nothing prepares you for the moment you learn that your child has a “mass” in the center of her brain.
Charli was admitted to the PICU and at 3 AM taken for a more thorough MRI of her brain and spine. During her MRI, they played music of Charli’s choosing. She chose Bob Marley. Charli loves Bob Marley. A few songs into the album, Three Little Birds came on. The MRI techs somehow knew exactly what I needed to hear. They put the song on repeat. As I prayed and cried, Bob Marley told me over and over again that every little thing is gonna be alright. I held onto those words!
We exited the MRI room at 5:30 AM where we were met with a team of doctors. Pediatric Neurosurgeons. Not the type of doctor you ever want to meet over your child's hospital bed. Our nightmare was confirmed. My precious daughter had tumors in her brain, one in particular that was clogging the ventricles, not allowing her brain to drain into her spinal cord. The fact that Charli was alive, awake, coherent was “amazing” to the team as they looked at these images showing just how sick our sweet girl was.
Charli required emergency brain surgery to remove the largest tumor causing the clog and illnesses. They could not tell us she would survive surgery let alone what longterm side effects she would have from it. The team lifted all PICU rules for Charli for the following day. They suggested we have her sisters, Duffy who was 13 at the time, and Mariner who was 9, to come in and spend the day with us. It dawned on me then that the doctors were making sure the three sisters had some time together as it may be their last time. So we threw a PICU party! Her room was decorated to the nines (thanks, Aunt Lisa!). We had music, their favorite food, crafts, gifts, everything you could imagine. Just the 5 of us. My family. My heart. God, please give my baby back to me!
The following morning was her surgery which lasted around 8 hours. Charli was so much sicker than the MRI’s even showed. The team later told us that they watched in amazement as her brain suddenly relaxed when they removed the tumor. The entire OR cheered when they witnessed this moment. They were able to remove that tumor completely and while in surgery, found that the other tumors were inoperable due to their locations. This little girl needed a big miracle! And in the following months, she received many! She not only made it through surgery, but healed so well! She was quick to walk and talk again and had minimal long term effects. After two long weeks in the PICU, she graduated and was moved to the pediatric oncology floor and after a short stay there was allowed to go home! I had my family of 5 back. Not the same as we were - none of us ever will be. But we are together and that is the greatest gift I could ever receive. Every little thing is gonna be alright!
We met many times over the course of the next 6 months with the Hopkins oncology team. It was a rollercoaster of information. It is not brain cancer, it is brain cancer. She needs chemotherapy, she does not need chemotherapy. As Charli’s parents, voice, and advocates, we needed to find out more. This is what prompted us to seek a second opinion, a team willing to work with Hopkins for the good of Charli. So naturally I turned to google! I searched for who the BEST in the world for this exact form of brain tumor is. Dr. Eugene Hwang’s name popped up. Where is this man and how do we get to him immediately? We will go anywhere under the sun for our girls, who wouldn’t? And suddenly, it was like Bob himself was singing again in my ear - every little thing is gonna be alright. Dr. Hwang is in Washington, DC, a 45 minute drive from where I sat googling. Within 2 weeks we were sitting with Charli in Dr. Hwang’s office. His team at Children’s National, which consists of so many amazing doctors, is working to find a treatment other than chemotherapy to rid our Charli of these remaining tumors. And while they work behind the scenes on this life-changing treatment, our daughter is flourishing. She is currently in the 7th grade, has a most supportive group of teachers and friends, and is “simply” going for surveillance MRI’s every 3 months to check the status of the remaining tumors. And so far those tumors have done exactly what God (and Bob Marley) promised - they have stayed out of her way and are not currently causing an issue. We know this could change at any moment, but right now in our hearts, we believe that every little thing is gonna be alright. Charli has the most amazing team of “Charli’s Angels” watching out for her, praying for her, and fighting to find a cure for brain cancer. Thanks to you all, Charli’s story has just begun!"