Brittany's Story

Childs name: Brittany
Parents name: Brad and Rhonda
Diagnosis: Germaninoma Brain Tumor on her Pinenal Gland (directly in the middle of her brain). Emergency 3rd Ventriculostomy was performed..
Diagnosis date: 04/21/08
Childs age: 13
Treatment summary: Radiation
Proton center: University of Florida Proton Therapy Insitute-Shands Hospital Jacksonville, FL
Oncologist: Dr. Sameer Keole
Number of treatments: 30 Treatments/45 REMS
Proton dates: 06/08-07/08
Insurance carriers: BCBS Federal Employee Program-PPO
Learn about treatment: Through a family friend who was having Proton treatment for Prostate. My husband went online and researched the difference between conventional and Proton and the side effects. Thus leading us to opting for Proton.
Story: My daughter could probably explain this story much clearer and less words but I will try. For over two weeks my daughter had diaplating headaches, and took bottles of iboprufen just to make it through the day. On the second week I had contacted her doctor and was unable to get an appointment. I was told it was probably just miagranes. On Wednesday of that week she blacked out in class in the school nurse contacted me saying she did not believe it was her eye-sight that I needed to call her pediatrician. I contacted her pediatrician and was told it was probably allergies to try Zyrtec or some other allergy medicine. My daughter attended school on Thursday. On Friday morning she was unable to get out of bed and her speech was a little slurred. She complained that she could not sleep on her stomach all night because she felt something running or pulling down her neck and spine. She said she could only lay on her back. I contacted her pediatrician office again and no one was returning my call. I then contacted the BCBS nurses line and they told my daughter what to do. They said if she was not better in a few hours to take her to a clinic. My daughter did as told and went to get up and she said everything started turning black before she even took a step. All she had to do was glance with her eyes towards the floor. So I took her to a clinic. There they did blood work, which, all came back fine. They had her do several test with touching her fingers to her nose, holding her hands out and closing her eyes, etc. She passed them all. The doctor told me he did not have all the equipment needed but that he did not think it was her eyesight or any syptoms concerning menagitis or flu. Then her neck would bother her to turn it sideways. He said that the back of one of her eyes there is a small round circle and this circle was fuzzing in and out not clear as it should be. He told me that the neck and spine issue also had him concerned that it could be a brain issue. He scheduled us for a CT Scan on Monday. Saturday my daughter still was standing and walking but clearing not feeling well at all. She was scared for me to leave her to go get medicine. By Sunday she was vomiting everytime her head lifted from the pillow. I took her to the E.R. and requested a CT Scan. They did a CT Scan and told me the devastating news. I was told she would need an MRI done and then the doctors would know more what type of surgery but she would need surgery soon. She was transferred two more times before she had an MRI and then surgery at MCV/VCU hospital in Richmond, VA by Dr. Gary Tye. A third ventriculostomy was performed on April 23, 2008 to release the pressure from the fluid build up in her brain. They cut a little path on the side of her brain for the fluid to flow until she could have treatment to see if the tumor would shrink. A week after surgery they removed her stitches and her fluids began leaking from the top of her brain. A clear fluid that looks like water. She complained that her face and hair was wet. I contacted the hospital and took her in to have the spot re-stitched. My husband and I were told that with her type of tumor radiation was the main source used. We were told she did not need chemo but needed to begin radiation soon to try and get rid of the tumor. They did not know how long the path would stay open and they did not want to have to go back in to put a permanent Shunt. We returned to Chesapeake and met with the Oncology team of doctors. We were told of a protcol where she could do have the amount of radiation and have the amount of chemo. My husband and I opted out of that option. We met with the local Radiologist. My husband had many questions and was not overly impressed with the answers and all the side effects. My mother contacted us about Proton. We contacted our local doctors in the ones in Richmond. We were told they had heard of it but didn't know much about Proton but that traditional radiation would handle the job. I questioned about the center in Hampton being built. They were all determined, including the radiologist that regular radiation was fine. Only a few days before beginning radiation did I hear from Proton in Florida and was told we could come for a consultation. The only problem was it would be a week after we began radiation here in VA. We were already three weeks out and pressing for time. So Proton in Florida called me back within minutes and ask us if we could be there the following week. This was a Friday. We packed our bags praying that Brittany would be accepted. On Wednesday we were told she was a candidate. On Thursday we had a local neurosurgeon, eye specialist, oncologist doctor and a radiologist. Three different hospital saw my daughter for the next nine weeks. She went through the process of stimulation, having her mask and molds made. She had to have fidicuals put in her spine and on her skull to line the radiation up precisely within a mm of target. They broke everything down where an average individual could understand the process and were very family friendly. My entire family was able to come and have a tour of the whole facility. Everyone from the Social worker, the receptionist and the entire staff at the Proton Center and Wolfson's Children's Hospital and Baptist became our friends. My daughter did have some difficulties the first few days dealing with the pain from the mask but they gave her some nerve medicine to calm her down. They had Pizza parties once a week and really cared about all their patients and families. At the end of the six weeks my daughter was glad it was over but said she would miss the people at the University of Florida Proton. We had a party before returning to Chesapeake and the physicts, and social worker attended. After returning home Brittany began school in September. About two weeks into school she began vomiting everday. We ended up at the E.R. several times pumping fluids. She eventually was so weak she was admitted for five days. Greatfully, they could not find anything wrong and figure it was from stress of the radiation. I contacted the Proton center in Florida everytime she got sick in was in and out of the hospital. The neurosurgeon and radiologist were very concerned and wanted her to come back before her original checkup. So we headed to Florida for a full Brain and Spine MRI with and without contrast. They viewed their own films with every team doctor we had down there and could also find nothing wrong like the doctor's in VA. So my daughter did has some side effects but nothing serious. On the BEST NOTE I can leave, we were told from the tradiational radiation doctor that one of the side effects could be to lose 10 IQ points. My daughter was a Honor's Straight "A" student. This information had horrified her. My daughter has been through a tough past year. At the end of seventh grade she received awards in every subject for the highest grade of her class. We were not surprised she was near the end of the school year before she was diagnosised. However, after the middle of her Brain had 45 REMS of Radiation 60 being the highest they do to anyone and being sick the entire first quarter and part of second quarter vomiting and missing school she just received the PRINCIPAL"S LIST AWARD FOR STRAIGHT "A"s all year, She received the Excellence in MATH, ALGEBRA 1-8th Grade, AVID, HONORS ENGLISH, HONORS, HISTORY AND HONORS PHYSICAL SCIENCE and CHORUS. Her Grade are 99, 100, 93, 100, 99 and 100. SO that is our testimony that PROTON DOES WORK and YOU CAN STILL KEEP YOUR BRAIN. Also, that the University of Florida Proton Therapy Insitute loves children. My daughter says she may work there some day. She is thinking about actually trying to get a scholarship to Florida to see if she can work for them upon Graduation. If not maybe Hampton University.