Please send Donation Checks to:
Children's Tumor Foundation
Attn: Cupid's + Runner's Name
95 Pine St. 16th Floor
New York, NY 10005
Meet Some of Our Heroes
In 2000 at 8 months old, Lilly Ann was prone to sinus infections, and on a routine Friday trip to a nurse practitioner expecting to get an exam and some antibiotic prescribed before the weekend, my wife called me crying and said the nurse told her she just didn’t think Lilly Ann looked right because her chest skin looked mottled (like the palm of your hand when you stretch it), and had some asymmetry in her tongue and the roof of her mouth. We had noticed the same as well but were told not to worry - she'll grow out of it. The nurse practitioner got the doctor to order an MRI, which freaked us out in and of itself. It was one of those Kennedy assassination / World Trade Center 9-11 moments. You never forget where you were and what your feelings were at that moment. Again, this was a Friday, and we were too worried to wait an entire weekend for an MRI to get scheduled the following week. In our rush of trying to get the MRI, we were blessed that my wife’s brother is a radiologist, and he got us in immediately. The film wet read showed peanut-sized tumors in her spine area and potential masses in the neck, which was devastating to say the least. We had only just begun a walk we could never have imagined.
NicoleNicole was diagnosed with a large Plexiform tumor in her lower abdomen and legs on her first birthday. There is the good, the bad and the ugly. The plexi keeps her from being able to walk on her own. The ugly came in January 2009 when the plexi which has caused damage to her kidney and bladder required a bypass of bladder. Unfortunately, the plexi continues to grow at a fast pace. Our prayers are to keep the plexi at a stand-still or slow pace to enable the research to catch up to make it melt away. Nicole has a wonderful support system with family and friends. She attends Holy Child school, where she enjoys learning, singing, dancing, and playing with her friends. When she is not in school, she enjoys playing with her dolls, shopping and watching movies. Her Mickey Mouse goes everywhere we go, including countless doctor appointments and every MRI, dinner, travel, church and school. Nicole's brother has taken his quest to teach the students of the Seckman middle school about NF. They are working on fundraisers for helping find a cure to NF. Our team is also joined by friends and family who are helping our family as we race to find a cure to give Nicole the ability to walk and be independent.
JesseJesse is 5 years old and has neurofibromatosis (NF1). This means he has multiple café-au-lait spots, many small tumors, at least 1 more complex tumor, a brain tumor, low muscle tone, nerve pain across his shoulder blades, and chronic/severe nerve pain at the back of his head. Even though one of his NF symptoms is a brain tumor, Jesse’s worst NF manifestation is the head pain. He has had surgery to help with the pain and even though it is much better since surgery, raging cries of pain do not begin to describe what he has gone through and still occasionally does. He takes pain medication daily and he is only five years old. This past summer, someone told me that Jesse must have walked into a nest of mosquitoes, he had bites all over him. My reply, “no, those are tumors”.