Team Brayden--Peace, Love, CURE!!
Donation protected
Brayden Denton is a typical 5 year old boy. He loves baseball, Spiderman and all things SUPERHEROS!! On April 20th, 2013 he was diagnosed with a rare brain tumor called a DIPG Tumor. A Diffuse Intrinsic Pontine Glioma (DIPG) is a tumor located in the pons (middle) of the brain stem. The brain stem is the bottom most portion of the brain, connecting the cerebrum with the spinal cord. The majority of brain stem tumors occur in the pons (middle brain stem), are diffusely infiltrating (they grow amidst the nerves), and therefore are not able to be surgically removed. Glioma is a general name for any tumor that arises from the supportive tissue called glia, which help keep the neurons ("thinking cells") in place and functioning well. The brain stem contains all of the "wires" converging from the brain to the spinal cord as well as important structures involved in eye movements, face and throat muscle control and sensation. As of today, April 3, 2014 he is fighting for his life. His mom, Staci Denton, is a single mom who has stopped working in order to take care of Brayden and make sure he is receiving the best care possible. Here is his story written by his mom:
Brayden was born on February 12 2009. I was so proud he was perfect. It was tough for me being a single mom but that was the life that was handed to me. In March of 2013 brayden was diagnosed with a strep throat. He was treated and we went on with our lives. Then in April he started acting sick again. I took him to his primary care doctor because his head started leaning to the right. I figured it was a ear infection. He checked his ear and they were fine but he did have strep again. They were concerned with his walking and his head leaning though. They told me it was probably something to do with the strep but they wanted me to go to riley children's hospital for an evaluation. I took him to the ER that day which was April 19th. They did neurological evaluation and sent him to his first CT scan. When that came back they told me there was a spot on his brain stem. They were admitting us then. At that time they told us nothing. It took forever to decide what floor to put us on because they didn't know what they were dealing with. They finally decided that we would go to the oncology floor. I was so scared. That next morning they sent us to our first MRI. My poor baby was scared and so was I. We get the results back that he has a tumor and it can be 2 different types. The first was a pnet tumor and we wanted that one because the chances for survival was better. The other was a dipg tumor and that has very bad chances of survival. At this time no surgeon wanted to biopsy it. We finally met his oncologist Dr. Markel. She told us more than likely it was dipg. I felt my world stop. They started him on high doses of steroids. They kept trying to get someone to do the biopsy. They kept going back and forth on treatment plans. My head was spinning. I was in that hospital for 4 days. Brayden was very grouchy. He was a 4 year old that weighed 30 pounds at this time and all he wanted to do was eat and yell. The first time I left the hospital room without him I run into a girl that I went to high school with. Her daughter has ovarian cancer and was in there that weekend getting treatment. Later Kristen told me they named those episodes roid rages. I still use that term. It was terrible. Those roid rages made my life terrible. We were discharged from the hospital and had a surgery planned in 1 week. We finally got someone to do the biopsy. At this time they were going to insert the port also. We came back down for the surgery and Brayden could not eat or drink anything. He was so mad he tells me where is my milk mom. I say Brayden you can't eat or drink yet. He started shaking and he screams you are stupid so stupid. I hate you. Of course I started crying. We get him in there and the surgery went well. He was able to get the biopsy. The next day we get released. We have a visit scheduled the next Tuesday to find out what it is. The only thing I was hoping for was not the dipg. My mom came in with me and they took brayden to a toy room and let him pick out new toys. We got the worst news of our life. They say he has dipg. I ask what the survival rate is and they say there is not one. I wanted to vomit. The first treatment was radiation with a new experimental chemotherapy drug. I stayed in the Ronald McDonald house for 6 weeks and 2 days. He had to be put to sleep 30 times. I really started getting used to it. We would go home on weekends and come back on Sunday night. He was gaining weight like crazy. At the time he was diagnosed he could wear size 2T. Now a year later he wears a 10. His wardrobe was changing very fast. As soon as we would go up another size he would then grow out of it. The cycles were starting every 2 months he would get another MRI. The make a wish foundation came and gave brayden his wish to go to Disney World. We set that up 1 month after his radiation was over. When we did that it was great. His dose of steroids were very low so he was not having as many out bursts. That week was great we stayed at give kids the world and brayden got to go to the front of every line at Disney and universal studios. He even got to meet spiderman. He loves spiderman! We got back home and then all of my fmla time was used so I had to go back to work. Brayden had to go back to day care and preschool. Then we get another MRI and find out his tumor grew. It is now consuming half of his brain stem. I cried so hard. I always thought my baby will be the first to fight this and win. This was not the plan. It couldn't grow. So he got kicked off his experimental chemo. My world was crashing again.
You can follow his story here:
http://www.caringbridge.org/visit/braydendentondipgjourney
Brayden was born on February 12 2009. I was so proud he was perfect. It was tough for me being a single mom but that was the life that was handed to me. In March of 2013 brayden was diagnosed with a strep throat. He was treated and we went on with our lives. Then in April he started acting sick again. I took him to his primary care doctor because his head started leaning to the right. I figured it was a ear infection. He checked his ear and they were fine but he did have strep again. They were concerned with his walking and his head leaning though. They told me it was probably something to do with the strep but they wanted me to go to riley children's hospital for an evaluation. I took him to the ER that day which was April 19th. They did neurological evaluation and sent him to his first CT scan. When that came back they told me there was a spot on his brain stem. They were admitting us then. At that time they told us nothing. It took forever to decide what floor to put us on because they didn't know what they were dealing with. They finally decided that we would go to the oncology floor. I was so scared. That next morning they sent us to our first MRI. My poor baby was scared and so was I. We get the results back that he has a tumor and it can be 2 different types. The first was a pnet tumor and we wanted that one because the chances for survival was better. The other was a dipg tumor and that has very bad chances of survival. At this time no surgeon wanted to biopsy it. We finally met his oncologist Dr. Markel. She told us more than likely it was dipg. I felt my world stop. They started him on high doses of steroids. They kept trying to get someone to do the biopsy. They kept going back and forth on treatment plans. My head was spinning. I was in that hospital for 4 days. Brayden was very grouchy. He was a 4 year old that weighed 30 pounds at this time and all he wanted to do was eat and yell. The first time I left the hospital room without him I run into a girl that I went to high school with. Her daughter has ovarian cancer and was in there that weekend getting treatment. Later Kristen told me they named those episodes roid rages. I still use that term. It was terrible. Those roid rages made my life terrible. We were discharged from the hospital and had a surgery planned in 1 week. We finally got someone to do the biopsy. At this time they were going to insert the port also. We came back down for the surgery and Brayden could not eat or drink anything. He was so mad he tells me where is my milk mom. I say Brayden you can't eat or drink yet. He started shaking and he screams you are stupid so stupid. I hate you. Of course I started crying. We get him in there and the surgery went well. He was able to get the biopsy. The next day we get released. We have a visit scheduled the next Tuesday to find out what it is. The only thing I was hoping for was not the dipg. My mom came in with me and they took brayden to a toy room and let him pick out new toys. We got the worst news of our life. They say he has dipg. I ask what the survival rate is and they say there is not one. I wanted to vomit. The first treatment was radiation with a new experimental chemotherapy drug. I stayed in the Ronald McDonald house for 6 weeks and 2 days. He had to be put to sleep 30 times. I really started getting used to it. We would go home on weekends and come back on Sunday night. He was gaining weight like crazy. At the time he was diagnosed he could wear size 2T. Now a year later he wears a 10. His wardrobe was changing very fast. As soon as we would go up another size he would then grow out of it. The cycles were starting every 2 months he would get another MRI. The make a wish foundation came and gave brayden his wish to go to Disney World. We set that up 1 month after his radiation was over. When we did that it was great. His dose of steroids were very low so he was not having as many out bursts. That week was great we stayed at give kids the world and brayden got to go to the front of every line at Disney and universal studios. He even got to meet spiderman. He loves spiderman! We got back home and then all of my fmla time was used so I had to go back to work. Brayden had to go back to day care and preschool. Then we get another MRI and find out his tumor grew. It is now consuming half of his brain stem. I cried so hard. I always thought my baby will be the first to fight this and win. This was not the plan. It couldn't grow. So he got kicked off his experimental chemo. My world was crashing again.
You can follow his story here:
http://www.caringbridge.org/visit/braydendentondipgjourney
Organiser
Christina Marshall
Organiser
Earl Park, IN
