UPDATE: SUMMER 2009

Since the update last December here is what has occurred. Katie's headaches remained constant through February. In addition to that, she developed an ovarian cyst that needed emergency surgery, so needless to say, Katie had a horrible winter. Over the winter we had ½ dozen trips to Cincinnati Children’s Hospital where Katie had more MRI scans and was examined by her neurosurgeon, a neurologist, a neuro-oncologist, a radiologist and even a cardiologist.

When all was said and done, there was no consensus on what was causing the headaches and dizziness. The doctors could not determine if the tumor or cyst was causing the symptoms and tried steroids and Amitriptyline which really didn’t do much. Katie missed over 6 weeks of school and as you can imagine, not feeling well on a daily basis began to takes its toll. Eventually they decided to try a new drug. This drug was administered in a 72 hour drip and was an absolutely awful experience for Katie. But by the end of the 72 hour treatment, her headaches were reduced from a range of “8-9” to less than “1”, where they have remained ever since. Over the past several months since her treatment, Katie has returned to her old self again and we are so thankful for that.  She returned to school and was able to get her grades back up so all in all, Katie did an exceptional job getting back into her routine.

Katie had an uneventful MRI and examination in Cincinnati this June - Thank God! She'll go back in the fall for more scans and we pray that this past episode was a one-time event.  

About this time each year, I ask Denni if we are going to do another fund-raising campaign for the Pediatric Brain Tumor Foundation (PBTF) and each year something happens to remind me of how Katie has to deal with the residuals of her brain tumor on a daily basis and how many lives this terrible disease impacts. This year we have more than enough reminders. Katie and her grandmother Holly "Nana" Cook were always very close. They had a lot in common including a knack for fashion and a love of music and theater. Defying statistical odds of 1 in 20,000 Nana and Katie also shared the unfortunate circumstance of having brain tumors  as Holly was diagnosed in February 2008 with a glioblastoma multiforme. Holly fought it with all her might, but tragically lost her battle in January 2009 at the age of 53. We were all devastated with this loss and none of us more than Katie. This year’s PBTF campaign is in loving memory of Holly “Nana” Cook.

UPDATE: DECEMBER 2008

Thanks for visiting Katie's Page! Some of you may be just getting to know Katie so here is a quick summary of her story.

Katie was diagnosed at age 4 1/2 with a brain stem glioma. She had surgery at Children's Hospital in Cincinnati in 2000. What remains of the tumor is a button-sized mass that is located at the brain stem where her brain, cranial nerves and spinal cord all come together. As a result of the surgery Katie is deaf in her right ear, has limited vision in her right eye, paralysis of the right side of her face, paralysis of half of her throat, and some limited abilities with her right-side muscular coordination. She has had physical, speech and occupational therapy and plastic surgery for the facial nerve damage. Overall, Katie has done exceptionally well in the 8 years since her diagnosis. Aside from a few minor blips on her follow-up MRI scans, she has been very healthy.

In June of 2008, one of her routine MRI scans showed some new growth in a cyst around the tumor so another scan was scheduled for December 2008. In October, Katie developed severe headaches, dizziness and nausea. After what appeared to be some improvement, the dizzy spells and headaches got worse and she also complained of blurred vision and even stumbled a few times. We returned to Childrens Hospital in Cincinnati where Katie has been seen by her neurosurgeon, a neuro-oncologist, a radiologist and a neurologist. Athough they all agree something is going on, they are not certain what is causing her headaches and dizziness. It could be that there are structural changes in the tumor or cyst and they want to see if her body can adjust on its own.

They have started her on a regimen of increasing dosages of Amitriptylene and will get another MRI in February. No one feels that additional surgery is an option as the remaining tumor is in such a delicate location that it could do more harm than good.  Chemo and radiation are being considered but nothing is definitive at this point.

Katie is finally back to school part time and will hopefully return to full days after the Christmas break. We are very thankful and grateful for the prayers, support and concern so many folks have expressed for Katie over the years. We get lots of "what can we do to help" offers and we encourage everybody to make a donation to the Pediatric Brain Tumor Foundation (PBTF). This organization has been so helpful to us and thousands of other families battling this terrible disease. Research is offering new treatment possiblities that weren't even on the horizon when Katie was diagnosed in 2000. But this research is expensive and pediatric brain tumor research is severely underfunded. The PBTF is the largest private funder of pediatric brain cancer research in the country and their donations drive an incredible amount of promising research. Won't you please help them fight this terrible disease?

Thanks again for your generosity.  Please keep "A Gift for Katie Proctor & Friends" benefiting the Pediatric Brain Tumor Foundation in mind. Note the amount of any donation is kept strictly confidential, and you can make anonymous donations as well. If you don't want to donate through this site, feel free to send your donation to "A Gift for Katie Proctor & Friends" • The Pediatric Brain Tumor Foundation • 302 Ridgefield Court • Asheville, NC 28806.

Many thanks for your prayers and support -- and feel free to forward this to anyone who you think might want to learn about Katie or donate to to the PBTF!

God Bless!

Team Proctor ~ Katie, Brian, Rob & Denni Proctor