Full of Hope—No Matter What. Meet Jose.
“When I tell people that I have cancer they always ask, ‘Oh, are you ok?’ and they act totally different around me. I don’t like that, so I just never tell them.”
Sixteen-year-old Jose Rodriguez is just like most teenagers—he likes video games, listening to music and hanging out with his friends and family. He also loves snakes and has two of his own, Mozzarella and Beelzebub. He plans to open his own restaurant one day and serve classic Hispanic and fusion dishes that his parents taught him to make. But unlike most teenagers, Jose has an inoperable brain tumor that he has been battling since he was 7.
“I just heard, inoperable brain tumor… womp womp womp….’”
“We started noticing a lot of episodes of him getting very sick and being unable to sleep. His pediatrician was weirded out by the whole situation so she got us in right away to the neuro department at the Children’s Hospital of the King’s Daughters,” Jose’s mama bear, Sigmarie, recalls. After Jose’s first neurological evaluation at the children’s hospital in Norfolk, VA, he was quickly sent for a CAT scan, and that’s when his family received the news that he had a cancerous brain tumor. “I just heard, ‘inoperable brain tumor…’” Sigmarie remembers. “It was my greatest fear.”
“It just had everything we would need for an emergency trip to the hospital.”
Shortly after, Jose’s family received their Roc Solid Ready Bag in the hospital. The family remembers that Jose was so excited to see the tablet and Sigmarie and Jose were thrilled to see the toiletries and blanket. “It just had everything,” papa bear Jose recalls, “everything we needed then and everything we would need for an emergency trip to the hospital.”
“We always forgot toiletries,” Sigmarie explains about their trips to the hospital during times of Jose’s treatment, “so it was amazing to not have to think about it because everything we needed was in the Ready Bag. It just stayed packed.” Years later, the family still has their Ready Bag and has even taken it with them on vacations.
Although the type of tumor that Jose was diagnosed with is normally located in either the front or back of the brain where it can be dissected and removed, Jose’s is in an uncommon location in the center of his brain which means it cannot be removed surgically. The medical team told Jose’s family that he had very few treatment options.
He had surgery to have a shunt placed to try to drain fluid from the tumor, followed by four weeks in the pediatric ICU and an initial round of chemotherapy to try to shrink the tumor. Jose then went off treatment for about a year and a half, until one day when Sigmarie noticed something wrong. “We were at a water park and I noticed the whole side of his face was drooping,” Sigmarie explained, “so I called the emergency oncology department immediately and they told us to come in right away.” Jose’s medical team determined he would need to start treatment again and explained that this round of treatment would be a 55-week program.
“We were able to celebrate his last chemo together”
Unfortunately, Jose’s papa bear, Jose, was about to go on a deployment with the US Navy two weeks later, meaning Sigmarie had to do the entire 55 weeks of Jose’s treatment alone. She leaned on the support of her family and friends to help take Jose to his appointments and care for him during that time. Jose returned from his deployment just in time for the last couple of rounds of Jose’s treatment. “We were able to celebrate his last chemo together,” Jose shared.
Shortly after, his parents started noticing more symptoms associated with his tumor and returned to the hospital to find out what other treatment options were available. Unfortunately, even after getting second and third opinions, the only other suggestion for treatment that might help Jose was radiation therapy. So Jose underwent 33 radiation sessions in 2022, with high hopes and nothing but positivity from his family. Despite his family’s unwavering positivity, his radiation treatment wasn’t able to provide any positive results.
Today, Jose’s family has exhausted all treatment options for right now, and they are in a “hope and see” stage in his cancer story. “We take nothing but positivity from our family and friends. We have no space for negative outlooks here,” Sigmarie explained with a smile on her face. Although Jose will never be considered in remission, he and his family remain hopeful for the future.
A light in the tunnel of childhood cancer
Jose also received a Roc Solid playset during the early years of his treatment. “It was daunting to me, that people would actually be that kind.” Sigmarie shares about their playset build day. “It showed us that people actually care—people coming together to help us out, it was a beautiful thing. It was a beautiful moment.” Jose shared.
As Jose prepares to start his junior year of high school, his family remembers the early days of his diagnosis and treatment almost ten years ago and what they wished people had understood about their experience then. “People think that all chemotherapy is the same and that the child will lose their hair and have pale skin, but that’s not always the case. Every chemotherapy medication is different and treatment can look very different,” Jose shared. “People would sometimes say, ‘oh he doesn’t look like a cancer child,’ but that’s the most heartbreaking thing to hear as a parent and you’re already going through so much. It’s helpful for people to educate themselves or just ask the question,” Sigmarie added.
“Always stay positive.”
Jose and Sigmarie offer encouragement to other families who are just beginning their fight against pediatric cancer by saying, “Put the pride to the side and ask for help when you need it. And always stay positive.”
Help us reach more families like Jose’s with the message of hope and community by making a donation here.
For more information about Roc Solid’s playset and Ready Bag programs, check out our website at rocsolidfoundation.org.
If you or your team would like to sponsor a Ready Bag or playset project for a family like Jose’s, email us at [email protected].
If you or a family you know is fighting pediatric cancer and interested in receiving a Roc Solid Ready Bag or play structure, let us know by clicking here.
