Our Survivor, Neymar

Sep 19, 2020 | Programs and Families

By Silvia Diaz, Camp Mom —

September is Childhood Cancer Awareness month and this year we invited a few of our CRG families onto our social media profiles to share their stories, the realities of pediatric cancer and how Camp Rainbow Gold has made a difference. Their posts are shared here, edited only for clarity.

I have 3 boys. Neymar, our survivor age 9, Valentino age 6, and Keegan age 2 1/2. Then me, Silvia (mom). I’m happy to share our story with you.

Neymar had been suffering from horrible migraines for about a year. May 20, 2015, he was sent to Boise Children’s Hospital for an MRI. That day we found out at the age of 3 he had a tumor about the size of a 50-cent piece on his vertebrates in his upper neck. The tumor was pushing on his brain stem. The next day we were sent to Primary Children’s Hospital in Salt Lake City, Utah. We met with a neurosurgeon; they did another MRI. We were told that it was indeed a tumor. Neymar would have to have a total of 3 brain surgeries to remove the tumor and then a neck fusion.

On June 9, 2015, Neymar had his first brain surgery. A few days later he had another surgery and his neck fusion. A few days after he had his third brain surgery. These all took place within a week in a half. He was in the pediatric ICU for two and a half weeks with a breathing tube and a neck brace. Once out of the ICU he was able to just relax and recover. He also had to relearn how to walk.

On July 9, Neymar was released from the hospital! He would go back to Primary once a month for an MRI to check on the spinal fusion. On September 18, 2015, he got his neck brace off. Then on December 16, 2015, we found out through another MRI that the tumor came back. So, in January 2016 we went back to Primary Children’s to have yet another brain surgery.

After that, the plan was to start radiation. We did a trial run and found out Neymar stops breathing when he’s slightly sedated. We had to come back a week later and have a trachea put in. After the trachea was in, we were able to go home after another week in the hospital. At the end of February 2016, Neymar started his 35 treatments of borderline fatal radiation at the Huntsman Center in Salt Lake City. He did radiation 5 days a week. On the weekends we would bring him home to spend time with family. His last day of radiation was March 28, 2016.

We went to Salt Lake every month for the next 6 months for MRIs to check on tumor regrowth. After we hit the 6-month mark, we did MRIs every 3 months, then every 4 months, then every 6 months. In the summer of 2018 we finally hit once-a-year MRIs. Every MRI after radiation came back tumor free!

In July 2018, we learned that the type of tumor he had is almost always fatal. There is usually no hope. His doctor never told us because he didn’t want us to lose hope or faith. Neymar is the only one his doctor knows of who has made it this far without regrowth.

The type of tumor that Neymar had is known to come back within three years. No regrowth after 3 years means its gone for good! This summer has been four years since it’s been gone. His doctor is pretty sure it will never come back since there aren’t any findings in any of the research or statics on the type of tumor that he had.

He is now almost 9 years old! Four years of being tumor free!

Joining the CRG Family

We heard about Camp Rainbow Gold from a family friend, Sharon Gause. Her son Alex attended camp as a child.

Neymar attended Youth Camp in 2018 and 2019. We have also had the opportunity to attend Spring Family Camp in 2018 and 2019. One of my sisters, Rosa, joined us at camp last summer in 2019.

My boys’ favorite thing about Camp Rainbow Gold is all the wonderful activities they can do. They loved canoeing at Family Camp last year. They love the Art Shack as well. We love the final Wishcone ceremony on the last night of camp.

We enjoy attending as everyone is so welcoming and they are like a second family. Other families can all relate to us. To know we are all in this together and we don’t fight this alone is something that is truly special. We feel so much love at camp. We love meeting new and old families. The staff and volunteers as well. They are truly some special people that put everything in so we experience an amazing unforgettable camp, full of memories, laughter, love, happiness and empathy. Camp is something will we forever be grateful to experience.

We SHINE for our entire camp family!