Our recent discussion with Maria Kuenster, a DIPG warrior of 4 years, has provided us with a new understanding of her inspiring battle with the condition.
Maria, now 26, was first diagnosed with DIPG shortly after her college graduation in June 2020. After experiencing recurring headaches, an MRI revealed the culprit: a brain tumor. Since receiving the news, she has undergone a series of treatments in hopes of stalling the prognosis of the disease.
Living as an Adult with DIPG
Since Maria was diagnosed as a young adult, there have been a few challenges as far as medical care specifically for adults with DIPG. In 2021 because of Maria’s age, she was only eligible for certain trials, one being the Seattle Children’s Brainchild 3 clinical trial where the age limit was 26 and Maria was 24 at the time. Because she is in the early stages of this new growth, Maria imagines finding more trials will unfortunately be a headache.
One of her biggest challenges with her diagnosis is being an adult and the responsibilities that come with it. Being 26, she mentioned how she is now under her own insurance as well as how she’s recently jumped back into working, after being on medical leave for a while. She explains how the treatment she is on currently along with the chemo she’s undergone has really wiped her out making it challenging to work. Although daily life tasks such as speaking are also a little challenging, Maria has found ways to keep herself positive and still reach her goals. Little things like walking her 4-year-old puppy, Liza, are incredibly beneficial because it helps her regain her strength and gets her moving and outside which she says really improves her mood.
New Challenges and the Discovery of a Second Tumor
Despite all Maria has endured, she still faces new challenges ahead since doctors have discovered the second brain tumor that stretches from the pons to the cerebellum. Her new symptoms include double vision, facial numbness, and issues balancing.
“The left side of my face, including my eye are completely numb,” she shares.
Maria has also struggled with walking since the cerebellum is primarily responsible for coordination and balance.
“There was a point in radiation where I was having to get wheelchaired into treatment,” she recounts.
Fortunately, she has since regained her walking skills, however, they have not returned to the level that they were before. While Maria hopes to continue treatments in the future, she shares that she is unsure what the next stage will look like.
Advice and CRF’s Impact
While she is unsure of her future, she has still made time to fulfill her dreams and aspirations. After being diagnosed in 2020, she started a merch campaign called Maria’s Miracle, raising around $24,000. One of her other dreams, as with anyone fighting DIPG, is to one day be in remission.
One of the biggest pieces of advice Maria brought up was to have a strong support system. “I’m extremely lucky with my parents and my fiance that they are there for every step of the way.” She goes on to say it would be next to impossible to go through these times alone and even says one of the best ways to show support for others going through something similar is to check in and keep checking in as a lot of people tend to fade out after initial diagnosis.
Maria finished by praising the Cristian Rivera Foundation and our Founder John “Gungie” Rivera on how amazing they have been throughout her entire journey. “John has been one of my biggest supporters over the years and especially recently with the second diagnosis. John is someone who regularly checks in. He checked in right when I was diagnosed and still continues to.” This sheds light on how important it is to check in and be consistent. It could be the best source of support and comfort for those who are fighting for their lives.
