Well I said that I would never blog, but I also never thought we would be in this situation. We will use this blog as a way to update everyone on the latest status of Carly's health. We are visualizing her with a healthy brain and are surrounding her with positive thoughts and energy. All we ask of you is to do the same.
Here is how we got to where we are today:
On Friday September 12 we went to a last minute appointment with a developmental specialist at UCSF to make sure Carly was on track. We had a few concerns about her gross motor development and thought we might need a few exercises to help her in that area. While we were there they recommended an ultrasound of her brain to make sure all was good there. What they found, and what was later verified with an MRI, was a tumor about the size of a plum in the center part of her brain. This is a very large tumor for anyone, particularly a little girl.
We were admitted to the hospital that day and on Tuesday the 16th they performed a biopsy to get a small piece of the tumor to determine exactly what it is. The surgery took about one hour, and Carly recovered really well afterward. Blood labs have shown that all of her hormone levels are normal which means that she has normal pituitary function at this time (the tumor is right on top of this important gland.) Yesterday, Wednesday the 17th, we were discharged from the hospital and allowed to go home to rest and recover. In times like this you become thankful for little things, and we are thankful to be home.
The good news:
Carly is not in pain, and is acting like her cute little self. The fontanelle on her head has not closed yet, which means that the pressure on the brain from the tumor is being released. She has not suffered any brain damage (the brain is squished, but not damaged or bleeding). UCSF Children's Hospital is one of the 8 Pediatric Brain Tumor Centers in the US. Carly's doctor is the Chief of Pediatric Neurological Surgery and a renowned expert in pediatric brain tumors. The hospital is within walking distance of our home and we are surrounded by loving friends and family. In all, Carly couldn't be receiving better care or love.
We are now waiting for final pathology results from the biopsy. They gave us immediate feedback on Tuesday, but will not be 100% certain of the tumor type until they finish additional tests. These tests will most likely be completed by this Friday, and they will meet with us to discuss the results. The results will determine whether Carly will have surgery next, or whether she will have chemotherapy to attempt to shrink the tumor prior to surgery. Either way, one of these treatments will begin in 2-4 weeks. In the meantime we will continue to fill Carly with loving energy, envision her brain healthy and take it day by day. Thanks to everyone for your love and support, we are grateful to have such an amazing group of family and friends.