Welcome to our journey... Our daughter, Paige, was diagnosed with an ependymoma brain tumor on Friday, January 14th, 2005. That day, she was taken for surgery where they were able to remove the entire tumor. Two weeks later, she underwent a second surgery that was a result of complications with the incision from the first surgery. She had a Hickman IV inserted for sedation for 6 weeks of radiation treatments and now has had it removed. She's now officially tumor and cancer free! For current updates, please visit Paige's CaringBridge Journal - www.caringbridge.com/visit/paigeann! The CaringBridge Journal for Paige Ann will be updated way more often than we do this page with her current events, upcoming tests and whatnot. We'll also be announcing exciting charity events that we participate in! Join us at this year's Race for Hope in Washington, DC!
SymptomsPaige's symptoms came very quickly - looking back, they started on January 2nd. The first thing that we saw was that she vomited once on the 2nd and once on the 3rd. The vomiting stopped for about a week and started again on Monday, January 10th. From Monday to Thursday, she would vomit one to three times per day. And, on Wednesday and Thursday, she became very lethargic - to the point that she wouldn't walk, sit up from lying down and, ultimately even had troubles keeping herself sitting. In hindsight, also on Wednesday and Thursday, we realized that we started seeing issues with her being able to control her eyes and she was having problems with her eyesight. On Thursday, January 13th, we took Paige to the ER at the local hospital. There we met Dr. Karyn Kassis, the ER pediatrician who was on duty that night. Dr. Kassis was spot on when she ordered a CT scan that revealed that she was suffering from hydrocephalus, the accumulation of cerebrospinal fluid in the ventricles of the brain. I give a world of credit to Dr. Kassis for Paige's quick and accurate diagnosis - it was Dr. Kassis' sharp thinking and critical eye that made her decide to do a CT scan before anything else. Without that, we could have spent even more time tracking down a mysterious "stomach flu". We later found out that Dr. Kassis and the nursing staff from the ER would call John Hopkins regularly to get updates on Paige. SurgeriesOn Friday, January 14th, we were transferred from the local hospital to John Hopkins hospital. That morning, the neurosurgeon, Dr. Geoge Jallo, diagnosed Paige with a brain tumor. Dr. Jallo scheduled the neurosurgery for the same day where he was able to remove the entire tumor.Paige spent the rest of January in the hospital. While she was in the hospital, she developed an infection that required anti-biotics and her incision was seeping spinal fluid (CSF). To try and combat the seeping of CSF, Paige received additional stitches on 5 separate occasions. We were discharged on Tuesday, January 25th but had to go back to the hospital on Friday, January 28th where Paige was operated on a second time where they reopened the incision and fixed a patch of her dura mater layer (which was causing the seeping of CSF). She was operated on a second time, again by Dr. Jallo and was discharged on Monday, January 31st. Since then, we've had no problems with the incision. Pathology (What Was It?)
The brain tumor was identified as an ependymoma and described as anaplastic, stage 3 tumor. The tumor was located in the 4th ventricle. This primary brain tumor accounts for 8 to 10% of pediatric brain tumors. These tumors occur in the ventricles of the brain and often cause obstruction of the cerebrospinal fluid. Treatment
Even though the neurosurgeon was able to remove the entire tumor, the oncologist, Dr. Aerang Kim, recommended that Paige still receive radiation treatments. We met with the radiation oncologist, Dr. Moody Wharam, where we were told that her radiation treatments would be a 30-treatment, 6-week course. They were 3D Conformal radiation treatments. Post-Treatment Follow-up
Prognosis
Paige's overall prognosis is good (75% long-term survival rate). However, because she received radiation treatments at her young age, there are possibilities of long-term side effects. In August 2006, she has completed a neuro-psych evaluation to check her for cognitive and motor skills deficits. I'm happy to report that she received above-average scores on the cognitive/verbal and is on track/average for her motor skills. Pictures / Photos
Pictures and Photos - See more pictures and photographs of Paige Ann Setzer. More pictures...
Friends of JaclynIn October 2008, Paige was "adopted" by the Johns Hopkins Women's Lacrosse team through the Friends of Jaclyn foundation. The coaches, players and even families of the players have taken us in like Paige was really on the team. They've showered her with love and affection and us with support. It's been truly amazing - a picture perfect dream, to say the least! The Friends of Jaclyn needs kids! They have more teams than kids right now! If you're a BT family, call them!!! American Red Cross
Give Blood! Schedule online at GiveLife.org - Paige needed blood during her first operation and they had blood ready for her second operation. I always knew that giving blood was important, but now that Paige needed blood for her brain surgery - I found out that giving blood truly means that you're saving someone's life. Personally, I've decided to give blood every 8 weeks (which is as often as you can give)! LinksWe've had great support from different people & places on the Internet. Online Support Groups
Brain Tumor Awareness Merchandise & Gear
Non-Profit Organizations
Angel Friends
Companies (that have helped us)
This page was last modified: 2009-Apr-16 |
