After 10 years of Denni and I writing fundraising letters asking for donations for the Pediatric Brain Tumor Foundation, this year 15 year old Katie wanted to do it herself. After all, no one knows better than her just how devastating brain tumors can be. Please read what she has to say - and please make a donation to the Pediactric Brain Tumor Foundation (PBTF). And now, "Here's Katie!" 

I'd like to ask you to make a donation to the Pediatric Brain Tumor Foundation (PBTF) . We need people to donate money for brain tumor research because it can change lives. By donating, you can help many people, and you can make a difference. How do I know? I have had a brain tumor for over 11 years now.  As a brain tumor patient and survivior I am involved in a research project and I talk with doctors and scientists. I am part of the PBTF organization so I hear about the importance of research (and donations) a lot.

We all know cancer is a horrible disease and brain tumors are one of the worst forms of cancer. By donating you can help someone with an uncertain outcome be one step closer to knowing what the outcome will be - maybe even a cure. Put yourself in my situation, if the roles were reversed, wouldn’t you want someone to help you too? Wouldn’t you want to know that people are trying to help find a cure?

When you donate you are helping doctors and scientists gain knowledge so that they can develop better medicines, surgeries, therapies, and eventually find a cure.  Dr. Crone, my neurosurgeon at Children's Hospital in Cincinnati, developed a new surgery that allowed treatment for a type of brain tumor that couldn't be operated on before. With research, we are one step closer to a cure! Kids like me will have the chance to make it to another birthday or another Christmas.

I had a friend named Courtney. Even though there was an age difference between us, we connected over one of the worst things possible - a brain tumor. Hers was a lot worse than mine. It was inoperable and there was nothing the doctors could do. She was pretty, tall and athletic, the kindest person you could ever meet. She didn’t complain and she wasn’t at all selfish. We knew each other for less than a year, but we were great friends. One week before Courtney’s 16th birthday I was at school. It was a normal day for me. When I came home from school my parents sat me down and told me that Courtney had passed away.  I never got to talk to Courtney again. It was horrible. After her funeral her mom came over to our house and she gave me a cross necklace that Courtney wore. I wear it every day. I won’t leave the house without it. For me, it’s the only thing I have left of her.  I don’t think that anyone should ever have to be told that their friend died of a brain tumor.

I have gone through this many times now. My grandma died of a brain tumor at age 53 and so have several of my PBTF friends. I do not want anyone else to have to feel this type of pain. If I can do anything at all to stop it then I will.  

Won't you please make a donation to the Pediatric Brain Tumor Foundation?

Thank you,

Katie Proctor - Brain tumor survivor since 2000

KATIE PROCTOR UPDATE - SUMMER 2011

Katie met with the plastic surgeon at Children’s Hospital Medical Center in Cincinnati and she has decided to pursue the “smile surgery” that will hopefully correct some of the effects of the facial palsy caused by her brain tumor. Katie underwent a nerve graft surgery in 2001 when she was 5 years old. The surgery wasn’t successful but they did tell us another more complex surgery was available when she got older. This is that surgery.

The process involves 2 separate surgeries, about 6 months apart. This December, Katie will have a nerve removed from the back of her leg just above her heel. The nerve will be inserted into the right side of her cheek, run under her skin and connected to the existing facial nerve on the left side of her face. After 6 months, when the nerve is fully established, Katie will have the 2nd and more delicate surgical procedure. A muscle from the inside of her thigh will be removed and inserted into her right cheek. It will then be connected to the newly established nerve.

The result should be that when Katie smiles or expresses emotion, the working nerve on the left side of her cheek will trigger the same response in the newly inserted nerve on the right side. Although it won’t be 100% symmetrical, it should create a much more natural look. And Katie will undergo physical therapy to help teach her how to manipulate the facial muscles to create more natural looking facial expressions.

The surgeon will also position the crease under her nose so that it lines up symmetrically. And, she will have a gold weight inserted in her right eyelid so that gravity will allow her blink to look more natural. The surgeon is optimistic that Katie will get good results and overall, the surgery has a success rate of about 90%. She’ll be in the hospital overnight for the 1st operation and about a week for the second procedure, which takes upwards of 8 hours. She’ll be on very restricted activities following both procedures as it is important to protect the nerves and muscle as they grow together.

We are excited for Katie that she has this option available. But it underscores the continuing struggle kids with brain tumors have. At 16 years old, these will be her 6th and 7th surgeries and yet again her life is disrupted because of this darn tumor.

Katie is finishing her freshman year of high school. We are thrilled to report that she has practically all A's in her classes and does exceptionally well in school. We are so thankful that she has been spared the learning difficulties so many other brain tumor survivors have. As Katie continues to blossom into such an incredible young lady, her mom and I are proud beyond words.  

In many ways, she is a typical teenager. Cell phone constantly in hand, checking Facebook every minute or so - just in case somebody posted something interesting about Justin Beiber or Will & Kate's marriage. She is taking Drivers Ed and frequently flies off the handle on what we assume are hormonal rampages that will eventually pass. 

But Katie's life hasn't been typical.  She has had 5 surgeries and been hospitalized over a dozen times for cyclical vomiting - a side effect of her tumor. Katie has been in or at the hospital on every holiday - with the exception of Memorial Day & Labor Day. She has spent hundreds of hours at the doctors’ offices, getting tested, poked and prodded. She has lost several friends and her beloved grandmother to brain tumors. She understands the world she lives in and the fact that the pain goes well beyond the medical aspects. 

Physically, Katie continues to deal with daily headaches. Always present, they range from mild, where she goes about her business, to debilitating, affecting her ability to do much of anything. She takes a number of medications on a daily basis - some simply to counteract the other medications required to combat her symptoms. Aside from the daily headaches, Katie deals with the facial paralysis, partial deafness and vision loss, and balance and coordination issues because of her tumor.  

All in all, Katie takes it in stride more than I could ever imagine doing. She rarely complains and doesn't wallow in self-pity. She really doesn’t like the attention focused on her and she does her best to live a "normal" life. Katie is my hero. She is brave, strong, courageous, optimistic, - a true survivor in every sense of the word. That tumor has met its match in Katie Proctor. I'll put my money on her any day! Won't you put your money her too - in the form of a donation to the PBTF? 

KATIE - MEDICAL UPDATE - JUNE 2011

Katie had a full work-up of MRI scans, X-Rays, blood work and physical examinations with the Oncology/Neurology doctors at Children’s Hospital Medical Center in Cincinnati. We are thrilled to report that Katie’s MRI results showed no signs of growth in the remaining brain tumor or the cyst that sits next to it. Yeah!!! We get to go a full year between MRI scans which is a 1st since 2007. Another Yeah!

 The doctors are changing medications in hopes of better dealing with Katie’s chronic headaches. And she will add occupational therapy on top of her physical therapy program to try and improve her arm strength and lessen the numbness and tingling issues on her right side. Finally, they are going to see if there are any new procedures that we can look into regarding Katie’s facial paralysis. All in all, a great visit for Katie and our family!
 

For more information go to:
www.pbtfus.org  –  The PBTF is the world's largest private funding source for pediatric brain tumor research. This site provides lots of information on the work being done by this incredible organization. Over $.85 of every dollar donated goes directly to PBTF Research and Family Support programs. The PBTF has provided over $40 million in funds for brain tumor research since its founding in 1984.

BRAIN TUMOR FACTS:

• About 4,000 children under the age of 18 are diagnosed with a brain tumor each year in the United States. Despite our best medical efforts, about 1/3 of these kids will die before reaching adulthood.

• Brain tumors are the leading cause of death from childhood cancer.

• We spend 3-5 times the amount of research money per patient on most adult cancer research than we do on children with cancer.

•There are more than 120 different types of brain tumors, making effective treatment very complicated.

• Because brain tumors are located at the control center for thought, emotion and movement, their effects on a child’s physical and cognitive abilities can be devastating.

• In the United States, the overall incidence of all primary pediatric brain tumors is about 1 in 10,000 kids.