At 3 months Vincent started tilting his head to the right and the pediatrician thought he had a common condition called torticollis and sent him to physical therapy. After about 2 weeks in physical therapy and some of our own research we started to doubt that torticollis was the issue. We went back to the pediatrician and realized that Vincent's head had grown very rapidly over the past 2 months. We were immediately referred to CHOP Neurology where they performed an MRI and told us that he had 2 brain tumors and they were almost positive they were malignant. We felt like our world was ripped out from under us. The next day Vincent underwent a 9.5 hour brain surgery to reduce the pressure on his brain and remove as much of one of the tumors as possible, one of the tumors is inoperable because it is located on his brain stem.
The surgeon was only able to remove less than 50% of the large tumor and we were left to wait for the biopsy results while Vincent recovered in the PICU. The biopsy results came back and it was worse than we imagined, Vincent has atypical rhabdoid tumors (ATRT), a very rare & aggressive type of brain cancer with a very dismal prognosis particularly for children diagnosed under 6 months of age. There are no clinical studies available and limited treatment options. High dose intensive chemotherapy is the only option, radiation has been shown to be more effective but children under 2 can suffer serious effects such as brain damage so it is not an option in Vincent's situation. He has also lost some motor function in his left arm and leg from the surgery.
Vincent had to have a VP Shunt permanently placed in his brain to drain the fluid and keep the pressure down. The original shunt malfunctioned and he had to have another surgery to revise it. He also had a port placed in his chest for administering the chemo intravenously. He spent 3 weeks in the PICU then transferred to the oncology floor to receive his first cycle of intense IV chemotherapy.
We have reached out to specialists across the country who are working on Vincent's case and we are holding onto hope that he will defy the odds.
After 4 weeks at CHOP Vincent was discharged to spend a few days at home before the next cycle of chemo starts. He has to go to the oncology clinic at CHOP twice a week to check his blood counts and receive any required blood, platelet, or electrolyte infusions. 9 out of 10 kids end up being readmitted due to complications.