Braeden Burgess

Braeden was born a vibrant, healthy boy on May 16, 2005. He was our "healthy" child; the one who never got sick. He was, for the most part, good natured, adventurous, and playful. It was clear that he was "all boy." He loved bikes, trains, trucks, motorcycles (motoykos), playing in the dirt and climbing on things. When a "cool" car or motorcycle drove past, he would whip his head around to see it, almost as fast as Dad did. Most of all, Braeden loved people. He loved interacting with people of all ages...and they loved interacting with him. He was full of character, full of silliness, full of life.

Several weeks prior to his second birthday, he got up one morning and was unable to walk without falling down. At first, we thought that he had an inner-ear infection that was affecting his equilibrium. A trip to the doctor showed no sign of infection, and we took him home and were told to keep an eye on it. A few more weeks past and the problem only got worse. Another trip to the doctor revealed nothing, so we were referred to a neurologist. The day before Braeden's second birthday, we visited the neurologist. As expected, we were asked many questions about what we had been observing. As we answered his questions, we noticed that the doctor was very intently, studying Braeden's eyes. He then asked us if we had noticed Bub's eyes "dancing" back and forth at all. We said no. Then he said that he wanted to watch Braeden walk. We went out in to the hallway, and he watched as Braeden walked. Instead of walking straight down the hall though, Braeden headed over to the nearest wall and supported himself as he walked, so he wouldn't fall down. We went back to the examination room and listened as the doctor began to feel Braeden's abdomen, just to the left of center under Braeden's ribcage. He then said, "I think I know what's going on" and had us feel the same place he had been feeling. There was a lump. He proceeded to tell us that he believed Braeden had neuroblastoma, a form of cancer, and the stumbling and falling was caused by a secondary syndrome, called opsoclonus-myoclonus (OMS). While we hadn't noticed Braeden's eyes "dancing," he said that he had detected it a bit, and this was another symptom of OMS. He left the room for a bit and when he returned, he instructed us to go to the hospital, where they would be waiting for us. And so the journey began...

Braeden was diagnosed with stage III, high risk neuroblastoma and opsoclonus-myoclonus syndrome on May 15, 2007, the day before his second birthday. He received six cycles of intense chemotherapy, had surgery to remove the softball size tumor from his abdomen, had high-dose chemotherapy with stem cell transplant, and completed twelve cycles of radiation therapy at Helen DeVos Children's Hospital in Grand Rapids, Michigan.

He had clear scans for many months, but relapsed while still on treatment in August, 2008. This time, chemotherapy drugs had no effect on the growing tumors. Surgeons removed the tumors and Bub’s left kidney in October, 2008. We then traveled to U of M in Ann Arbor with the plan to do a targeted radiation treatment. While having scans at U of M, we learned Braeden’s tumors had already reappeared and there were several affected lymph nodes and a spot on his bladder. We were referred to Cincinnati Children’s Hospital so that he could be treated sooner. In December, 2008 Braeden was at our clinic receiving a blood transfusion when his blood pressure began to climb. He was admitted with his remaining kidney failing-the result of the tumor growing so much, so fast. The tumor that was gone in October was fingernail size in November and was fist size in December. More chemo and radiation were tried to shrink the tumor, but in January it became evident that nothing was affecting the cancer any longer and Braeden’s health was failing. He came home under hospice care on February 11, 2009 and received a wonderful wish from the Make-A-Wish Foundation. He rallied and spent a wonderful two months with our family. On April 18, 2009 at 2:27 a.m. he went quietly from our arms into the arms of Jesus.

Strong and courageous to the end…..he will be our little Super Hero, always.

By: Kevin & Dawn Burgess