Check out our Current Events Page and then come see us at one of our upcoming events!! Lace up and walk at Freeman Lake! More details to come!! Help us honor Candace's memory and continue to fight against DIPG. Defeating DIPG, - - -one step at a time!
Thank you for your support!
** SAVE THE DATE AND MAKE A DIFFERENCE **
Could you ask for a sweeter face?? I think not. But then I am her grandmother.
Candace was born in July, 2004, to my son and daughter-in-law. She was their only child.
She was five years old when her parents took her to see a doctor for what they thought was an earache. She had been complaining her head hurt. No one ever expects to hear the words "brain tumor" and "terminal" when just the minute before, you had a perfectly normal child. She was diagnosed with a DIPG.
She was such a joy in life! Spirited, and, dare I say, strong-willed? She loved her family, the Disney princesses (like most little girls!), and of course, animals. Last, and certainly not least, she loved her Bambi. Bambi went everywhere with Candace.
No one knows how or why Candace developed a brain tumor. But she handled it with grace and dignity. She never complained, although she had to wonder. There were times when she would get very aggravated because no one could understand her when she talked, (the tumor had robbed her of her ability to speak, which was probably torturous for Candace because she loved to talk!) but that was obviously OUR problem, not hers. Her strong-will and determination carried her for 18 months after her diagnosis.
It is in her memory, we continue the battle for her, and all the other children who will be diagnosed with, and ultimately lose, the battle with DIPG. These children have contributed in their own way to finding a cure. What did and didn't work for them will be factored into new trial studies, new research. And now, it's our turn, to carry on their fight . .. the fight for more research, the fight for more trial studies, for answers, for options, and ultimately, a cure.
Diffuse Intrinsic Potine Glioma. The name describes a tumor that grows in the pons area of the brain, in the brainstem. Because of the tumor's sensitive location, surgical removal is not an option. Biopsies can be dangerous, as the tumor is located in the brainsteam.
The first symptoms of a DIPG can be deceiving. What child isn't a bit clumsy? What child doesn't experience a change in sleep patterns from time to time? Or complain of a headache?
Each child is different and symptoms can also differ. As the tumor's growth progresses, the pressure increases to the cranial nerves which can lead to double-vision, loss of control of facial muscles, and issues with chewing and swallowing, as well as difficulty walking and talking.
Ironically, DIPG does not affect the part of the brain that controls awareness. The children suffering with DIPGs are aware of the changes happening to their bodies, even if they never completely understand it. Thankfully.
DIPGs grow quickly and affect the nerves that control breathing and heart rate. "Treatments" usually include radiation, and if you're lucky to be accepted into a trial study, chemotherapy. These "treatments" treat the symptoms and at most, buy time. Less than 10% of the children diagnosed with a DIPG, will live longer than two years. Now, let's look at what that really says:
Ninety (90%) percent of the children diagnosed with a DIPG will die within two years.
(For more information, please visit dipgregistry.com)