Jan 10, 2018 Latest post:
May 20, 2018
We will never forget November 16, 2017. This is the day life as we knew it forever changed. We took Olivia into her primary doc after he listened to our concerns about her head growing in size. It had in fact grown by 2 inches in 4 weeks and we were headed to a bigger hospital to have an ultrasound to look for fluid in the brain. At this hospital Olivia was diagnosed with severe hydrocephalus and we had to travel to an even larger hospital for further tests. There is where we found out her hydrocephalus was due to “something being there that shouldn’t,” a tumor. She also has some in the back of her brain and along her spine. Her first surgery was on November 19 where they took a piece of the tumor for a biopsy, inserted an external tube to help drain the fluid and also a new path was created in the brain with a 50/50 chance it would be successful and a shunt wouldn’t be needed. Shortly after surgery she had a seizure, which has probably been the scariest moment throughout this journey. 11 days after her first surgery it was determined that the path that was created wasn’t working so a shunt would need to be placed. On November 30 she had surgery for the VP shunt. On December 10 we returned to Children’s because her tummy started to expand and we found it was because her stomach wasn’t absorbing the fluid like it should so on December 13 she had another surgery to remove the VP shunt and have an atrial shunt placed. So far this seems to be working beautifully and we pray that continues.
Through all this our little sweetie was diagnosed with grade 1 Juvenile Pilocytic Astrocytoma and she would start chemo asap. Grade 1 typically means benign and no spread but Olivia’s has spread and is not benign but we are hopeful this treatment will eliminate the tumors! She remains a positive, inspiring little girl and is keeping us strong with her incredible smile. Thank you for following our journey and keeping us in your prayers