Tori is truly an inspiration to all of us that knew her.
We now know Tori has Medulloblastoma. It was diagnosed when she was 19 months old, October 2005. [Tori would be four this February.] Tori only had five days of symptoms...this is due to doctors that truly listened to what we were saying as parents. Victoria had about 95-98% of her tumor removed October 13, 2005. Tori also had Posterior Fossa Syndrome after her tumor removal. She has 9 appointments with an assortment of physical, occupational and speech therapists a week. She continues to get better but, is still not walking or talking at a normal development level. She does continue to get better and stronger each day. Her original pathology consisted of 4 months intense chemo, 6 weeks daily focal radiaiton, 4 weeks off and lastly 8 months of maintenace chemo. This put her at a completion date of January 2007. As of May 22, 2006 Tori has two new brain tumors and a dozen spine tumors (including a film covering her spince of cancer cells) that were found prior to the maintenace chemo phase. Her full pathlogy was to continue on with radiation then move onto stem cell harvesting and a stem cell transplant of her own cells. She can not continue on with a stem call transplant if there is any signs of cancer calls present though. Tori has completed an additional 27 days of full brain and spine radiation. This takes her total number of days with radiation to 57. Once her counts get up to regular levels she will continue on with chemo and a stem cell transplant. While in this harvesting stage for stem cells Tori got very sick. Too sick to continue on with chemo. So, the docs suggested she take a 2 week break to get well again. At 2 weeks and 3 days I urged he doc to continue on with chemo, something - anything. Her scans came back with a film of cells covering her whole brain and just one pencil eraser sized tumor in her spine. Good but, not really. The cancer was taking over. We discussed the possibility of seizures and were refreshed on how to give the diastat. Jan. 1, 2007 started with Tori waking up in a seizure. It was one where she was just staring off and I could not get her to respond to me. We did get her out of it and she saw a neurologist. We had a plan writen up incase this happened again. And it did. Sunday the 7th and the last one was Tuesday the 9th. Tori was on a good amount of valum and pain relief meds at that point. She passes away at home surrounded by her loving family on Thursday morning the 11th. Original story from October below...
Tori is at Children's Hospital in St. Paul. She has been here since Friday evening. Originally, she was thought to have a flu bug. She was released on Monday afternoon since she started to keep down some fluids and food. Soon after returning home she started throwing up again and 'walking funny' from time to time. We brought her back to Children's Hospital right away.
On Monday, October 10th, she was in the Emergency Room at Childrens were a really great "old-school, pessimistic" doctor decided to run a CT scan on her head. At the time it was to rule out anything. He found a tumor in her brain.
The tumor is located between the brain stem and cerebellum (back of her head.) The cerebellum controls movement, muscle mobility and 'throwing up' reflexes. There is some swelling and that is why she was unable to keep down any foods. We are "lucky" she has only had symptoms since last Thursday and there is no back up of fluid on the brain. This makes everything less complicated for her and her future procedures.
She is comfortable and in the best care possible at this time. Tori will be having surgery on Thursday, Oct. 13th at 9:45 a.m. She is in the Pediatric ICU and will be there until surgery. The surgen is a Pediatric Neurosurgen who sees 25-30 cases of brain tumors a year. He operates on children on a regular basis. After surgery she will return to PICU for a few days. Then she will be transfered to the 4th Floor Tumor/Cancer Area.
Hopefully, the whole tumor will be removed in surgery. They will perform a biopsy at that time. The results may come in on Friday but, most likely Monday afternoon. We do not know if it is cancer or not until then. There is still hope it is not and we are praying for that outcome.
At this time we are just asking for your possitive thoughts and prayers for Tori. We pray for a smooth, uneventful surgery and speedy recovery.