KSON Going Gold for Aydain Dammer

September 30, 2016

Christie shared her son's story with us: 

Aydain was born On September 5th, 2010, he came into this world the same way he lives now….on his own terms. He was what one might classify as a typical boy, he was full of energy and laughter, always with a huge mischievous grin on his face. He was the perfect example of a healthy little boy. In December of 2012 our entire family caught a nasty stomach bug that was going around, while the rest of our family quickly recovered Aydain could not seem to fight off the virus, Christmas morning came and he could not even feign an interest in the holiday excitement. He felt so yucky  he would not open or touch one of his gifts. We had insisted on visiting his Pediatricians office numerous times as well as a visit to urgent care. His laboratory tests kept coming back as normal but we knew our little boy better, we knew something was terribly wrong.  After one last visit to the emergency room Aydain was diagnosed with Stage 4 High Risk Non favorable Neuroblastoma on January 7th 2012. He had a solid tumor filling the entire left side of his chest cavity, it had no more room to grow so it started to protrude through the side of his neck in mere moments. His Physician would later inform us that the tumor was putting so much pressure on his lungs his oxygen could have been cut off in his sleep and we would have never known. The odds given to us were 25-30% for survival.

Today Aydain is defying those odds. After 6 rounds of chemotherapy, 1 month of radiation, a successful stem cell transplant and a few enduring months of immunotherapy he was finally declared cancer free. We elected to be part of a trial outpatient Chemotherapy called DFMO, he is on round 18 of 27 months and is continuing to show promising results. He turned 6 earlier this month, birthdays we often times thought we would never see.  For Aydain the journey is not over. Cancer treatment options for children are so harsh they cause major life long, life altering side effects. He currently visits more specialist on a regular basis for life long side effects that any one person, especially a little boy should have to endure. The necessary treatments utilized to save Aydain’s life were so taxing on his tiny body and developing brain he is already showing signs of “long term side effects” in the form of numerous cognitive as well as neurological disorders. At 6 years old his brain function is the same as a typical 3 year old. You wouldn’t be able to tell him he is deemed a special needs child though, he strives so hard each and every day to play catch up to his peers.  He is currently enrolled in a special needs kindergarten class where he is thriving more than we could have hoped for.  He has 2 of the most amazing and devoted teachers.

This past June our world turned upside down once more when an MRI showed a mass on Aydain’s Brain, our biggest fears were about to come true….Relapse, those odds just seemed to feel smaller and smaller. After undergoing a craniotomy surgery to remove the dime size mass growing on his cerebellum; we, as well as his ENTIRE medical team were astonished when what we all thought was a tumor turned out to be a malignant malformation. It was a true miracle! He is still cancer free! No amount of cancer, side effects, brain surgery, painful procedures or fear of relapse have been able to take that mischievous grin from our little boy. Although we live in the presence of fear Aydain’s cancer will return at the drop of a hat we have learned to balance it with our complete appreciation for life outside of hospital walls. We are simply grateful. You can follow Aydain’s journey at facebook.com/AydainDammersfight.

Mom Christie joined us to tell us more about Aydain's progress: 

KSON Going Gold for Aydain Dammer