My daughter, Brianna, was born on September 3, 2002. She was 9 lbs 11 oz and 20 ½ inches long. Little did I know what a roller coaster ride we were about to embark on. I better give a brief background. I had an absolutely normal pregnancy. I had an ultrasound at 5 months and that was normal. Three days prior to her birth, I was sent for an ultrasound to check her position because my OB/GYN thought she might be breech.
My husband and I went for the ultrasound and they immediately told us that she was not breech (I believe that she flipped the night before). The technician left the room and waited for what seemed like forever and he finally returned with a doctor. The doctor proceeded to review the ultrasound and turned to us and said "I'm sorry but your baby has hydrocephalus". We both looked at each other and said "what's that?" He explained what it was but I don't think that I heard a word he said. I was devastated. I thought, "how could this possibly be happening... there must be some kind of mistake". Well, there was no mistake.
The day after Brianna was born, a CT scan and an MRI were performed because there is always a reason for hydrocephalus. The news could not have been more shocking. Brianna was diagnosed with a brain tumor that was located in the third ventricle. Initially, they didn't do anything and she came home with us. About three weeks later, the hydrocephalus was becoming a problem. Brianna was irritable and had frequent vomiting episodes. This was due to the increased pressure. Neurosurgeons decided to place bilateral VP shunts to alleviate the pressure. They wanted to wait to do the resection until she was at least three months old.
Things were good for a few weeks but Brianna then developed yet another shunt problem and subsequently developed a shunt infection. She then had to have her shunts externalized and was put on IV antibiotics for 14 days. This was our longest hospital stay to date - 5 weeks. During this time, the neurosurgeons and pathologist thought that she might have "malignant" tumor cells in her cerebral fluid and decided to do a resection. She was only two months old when they performed the craniotomy. She did wonderfully and in fact was throwing her toys out of her crib in the PICU that evening. I was amazed that a child who just had major brain surgery was throwing toys, but that is just how she is. She always keeps me guessing and is always full of surprises. They were able to remove approximately 50% of the tumor. Fortunately they were wrong about her tumor being malignant. She was diagnosed with a Ganglioglioma.
After the debulking, we were told that Brianna would be receiving eight rounds of chemotherapy because the tumor was shedding and they believed that the shedding was causing all of her shunt malfunctions. She has had 13 surgeries, one being the resection. This began many hours spent in the hospital receiving chemotherapy. Brianna was on Vincristine and Carboplatin. She also was given Zofran to prevent nausea. We also went through several long hospital stays for central line infections and the shunt infection. All in all Brianna did very well with chemotherapy and didn't really have any side effects. In fact, Brianna is in the 98th percentile for height and weight. She had several blood transfusions but these were post-op not low blood counts. She also has what is called precocious puberty. Her body was trying to go through puberty and she was developing breast tissue and was menstruating. She is presently receiving Lupron to prevent these symptoms . So far, she has had stable MRI's and no shunt problems since we stopped chemotherapy.
Presently, things are going well. She finished her 8 rounds of chemotherapy in March and is presently on a three month MRI schedule. It is very unnerving every three months, especially waiting those few days for the results (it feels like months!). She receives PT, OT and speech therapy several times a week. She is finally beginning to walk and talk. She is a very happy child who is the light of our lives. She loves Elmo and is enjoying her newfound freedom walking with her push toy. We have tried to give her as normal a life as possible. We go on family vacations, shopping, and trips to the Zoo.
We feel very fortunate that Brianna has done so well. I believe that this experience has changed my whole family and me. We no longer "sweat the small stuff" and live every day to the fullest. We will be always be indebted to the Children's Hospital of Philadelphia, for without them, I don't know that my daughter would have survived. We have complete trust in CHOP and the team of doctors, nurses and staff who have cared for Brianna have been exceptional.
Life changed forever for us on that hot August afternoon. We know that we still have a long road ahead of us but the future looks bright. For this, I am very thankful. She is an amazing inspiration to me and everyone who knows her. I am writing Brianna's story to give hope to parents who are new to this terrible journey. In the beginning, I found myself feeling very alone and I hope that reading this story will give other parents hope.
by Aimee Disney, Brianna's mom