Jenna and Annie-bell

Jenna Barber Jenna Barber

First post: Feb 24, 2006 Latest post: Jun 28, 2011
June 28,1993 - May 1, 2006

Jenna was diagnosed with a brain tumor called a Juvenile Pilocytic Astrocytoma in her Brain Stem in October of 2005. She fought a very brave battle with humor and dignity for 8 months. Jenna became an Angel on May 1, 2006. Please read her story and sign her guestbook.

Jenna's story begins in September of 2005 when she started having headaches as soon as she woke up in the morning. The headaches continued for about 3 days and would retreat in the afternoon. On Wednesday, I took Jenna to her pediatrician because she was missing school and said her neck was also sore. The doctor spent a good bit of time with us and all of the normal neuro tests...(walk in a straight line, touch your nose with your fingers, follow my hand with your eyes) displayed nothing out of the ordinary. But he was concerned about the headaches appearing first thing in the morning and ordered Jenna to have an MRI. At this time I really thought okay...we will do this and it will come back okay and maybe she is having migraines.

Jenna had the MRI on a Friday morning and we received a call on Monday morning with News that would change our entire world. Jenna has a tumor in her Brain Stem - probably the worst place you could have one. We were admitted to the hospital that evening where they started her on Steroids and everything just moved fast forward from there. She had another series of MRI's and specialists coming in and out of her room to talk to us. The tumor was located in a place that was impossible to operate, however they did see a chance to grab enough for a biopsy and open the fourth ventricle to release some of the pressure that was causing her headaches.

We were home within a week of the operation - however recovery was harder than I anticipated. Bad days of nausea followed by one Good Day - it took a few weeks but Jenna was feeling much better and continued school through a homebound program. She started radiation therapy in November and we had to drive to Orlando every day for a 4 minute session. The hardest part was probably the initial appointment where they had to fit Jenna for a mask so they can pinpoint the locations for the beams. Everyday she would lay on the table for her session and they would have to strap the mask over her head lock in down to the table. I think it bothered me more than it bothered her. Jenna took everything as is came and never complained about going to Radiation every day for 6 weeks.

Radiation ended on 12/28/05. We were very excited- no more driving to Orlando everyday - Jenna was getting ready to go back to her Middle School for the first time since October. Things were moving right along and she was feeling pretty good. Our follow up MRI was scheduled for the end of February 2006 so we were in a wait and see mode. It never entered my mind that this would not work and Radiation would not have a positive effect on her tumor.

By Mid January we started going downhill again - Increasing headaches - even while still on the 1 mg of Decadron - we were never able to fully wean from the Steroid. Nausea and Dizziness were introduced for the first time as a symptom. Jenna was not herself and was increasingly tired all of the time. I was very concerned and finally was able to make an appointment with her Oncologist - We went in for an MRI and met with them to discuss the results - They were pretty certain that the tumor was growing - It apparently was not following the usual pattern of a typical benign JPA.

After many meeting with every specialist from the NeuroSurgeon to the Pediatric Oncologist and several more MRI scans we concluded that the tumor did indeed seem to be progressing and opted for Chemotherapy. Jenna started Chemo the end of February - Please read the journel entries as we continue our journey.

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