In a recent interview, we had the chance to catch up with 30-year old Alexa Huber, who was diagnosed with DIPG in Spring 2020. As a stay-at-home mom, Alexa values spending time with family, staying active, and making the most out of every moment. Though there have been many challenges throughout her journey, she has always remained strong and level-headed. Through her determination, she remains an inspiration to those, especially adults, battling the disease.
Before Alexa’s diagnosis, she had a few subtle and what seemed like minor symptoms of just simply overworking her body. She loved running and was at the time training for a half marathon race when she noticed she had a left foot drop; the inability to lift the front part of the foot due to weakness or paralysis of the muscles involved. Doctors advised her to rest and she also went to personal training to try and make it better. Another symptom that showed up was left-hand weakness. She started noticing how she would have a tough time typing at work and a tough time knitting and crocheting, one of her favorite hobbies and pastimes. One of her last symptoms to show was double vision. She had to close one eye when backing up her car, something she could have easily written off as minor. Although it took a few months for things to start adding up, the doctors were originally looking for a mass to be the explanation of all these symptoms as they run in her family. However, that’s not what they found. Alexa explained how the process of actually receiving a diagnosis for D.I.P.G. was long and convoluted because most doctors don’t want to diagnose adults since it’s more commonly seen in children. It wasn’t until Alexa met with Dr. Mark M. Souweidane, that she finally received a diagnosis.
Living as an Adult with DIPG
Because DIPG primarily affects children, it can be difficult to navigate the world as an adult with the condition. Alexa shares that finding care has been a tedious, drawn-out, and complex process. There is little information about adults who have DIPG, and she shares that “it is very hard to find doctors who are even willing to treat you or diagnose you”. Since many medical professionals are hesitant to approach the subject of DIPG in adults, she shared that she was happy to have finally established a care team in that regard. “Had I not advocated for myself and found the right doctors, I probably wouldn’t be here”, she remarked. In the future, Alexa will continue to advocate for more resources for adults with the condition. By working with existing charities and foundations to push this issue, she has helped educate others about DIPG in adults.
We also got to know a little bit more about Alexa as a mom and how she manages her diagnosis with her young son. Since she was diagnosed right before her son’s 2nd birthday, she feels as though his childhood has been colored by her diagnosis with thoughts like “Am I going to get this again?” or “Will I be here?” She misses the certainty she had before she had to think of any of these thoughts. Although there are some dark times and thoughts, Alexa has made sure that he was aware of her diagnosis in a way that was age-appropriate for him with the help of social workers and therapists. He sees it as just something that’s a part of their lives and although he understands there is danger in it and that things may be a little bit harder for her to do, he doesn’t hesitate to come to her defense! She talks about a time when she needed to check him in for school one day using a computer and he was quick to explain how she has a hard time typing because of her tumor. He understands that she is different but it’s okay and he will help her. She also talked about how he understands that a lot of children have the same type of tumor so he appreciates when he knows she “is going to help the other kids that have a brain tumor like mom.”
Staying Strong and Words of Wisdom
Alexa also remarks on how resilient people can truly be when they are put in a situation like hers. Before her diagnosis, she saw those battling similar conditions as ‘exceptional’, however, she now believes that anyone, including herself, can fight through it. “You’re stronger than you think you are. It’s okay if you’re not in that moment, but there’s people around you who are there to keep you on that path of strength and support you when you’re down” she voices. By leaning on her loved ones and focusing on the hobbies she enjoys, Alexa has remained positive throughout her diagnosis. She even shares that she has taken up gardening, stating that she feels her best when she’s outside. When asked if she has any advice, she admits that it really helps to stay active. Staying mindful and moving your body to any extent can benefit you greatly, especially when undergoing treatment. “Even if it’s just a walk around the block”, she says. Any little bit can help.
Lastly, Alexa shared how she loves the work that the Cristian Rivera Foundation is doing. The foundation supports Dr. Mark M. Souweidane, someone who was on her care team and supports a lot of the research that is going on at two facilities where she personally received care. It was nice for her to know that they’re always in the background relentlessly and tirelessly working to find a cure and any hope for children and adults like her. She admires and commends John “Gungie” Rivera, our Founder, and the other parents who have dedicated their lives to finding a cure after they’ve lost their children to such a horrible disease. On harder days, she says it’s nice to look back on events like the Cristian Rivera Foundation Celebrity Gala and see that there are all these people trying to help and it makes it feel less isolating to see so many people that care come together to help make a difference in so many people’s lives.
Although Alexa knows her diagnosis is a big part of her life for the time being, she chooses not to let it completely define her and her life. For anyone dealing with a similar experience as Alexa, she wants you to know that “You’re stronger than you think you are and it’s okay if you’re not in the moment, but there’s people around you that are there to keep you on that path of strength and to support you when you’re down. You’ll get back to your resilient, strong self.”
