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I Can Attest To The Fact That Brain Tumors Suck, Which Is Why I Go Hard For The Environment

More children die from brain tumors than any other cancer; those who survive must navigate a lifetime of side effects. The Pediatric Brain Tumor Foundation (www.curethekids.org/stay-connected) is the largest patient advocacy funder of pediatric brain tumor research and leading champion for families and survivors, providing patients, caregivers, and siblings with information, financial assistance, and a community of support from the moment symptoms start, through diagnosis, treatment, and beyond.

If you logged onto this site a few years back, you will notice that it has gone through several iterations. Initially this website began as a way to bring awareness to pediatric brain tumors and to share how I used art as therapy for my grief journey. I still do. In 2015, my 3-year old daughter named Calais, was diagnosed with a rare tumor called ATRT. At the time she was a perfectly healthy and an extremely active child–cancer was something we never saw coming.

How we got off our path 

When I took my highly active 3-year-old to a pediatrician’s visit, they wanted her weight to be slightly higher, and to have more protein because she was only drinking soy milk. I was told to add a protein drink like Pediasure if she isn’t drinking milk to make sure she was getting her protein and nutrients. Big mistake, it’s all sugar, and it’s the beast that fueled my fire for years after.  

My upbringing did not prepare me to deal with medicine as a parent. My husband often looked to me, and I didn’t always trust my gut–until it was too late. I can’t say sugar causes cancer, but cancer cells feed off sugar. According to Cancer.gov, roughly 1.9 million people will be diagnosed with Cancer in the United States. Education is something we all can benefit from. When you have a belief in something you need a community to keep you on the straight and narrow and to see you through. It’s important to educate yourself on your bloodline as well as your nutrition. One size doesn’t fit all in this area.

Although Calais was technically my second child and 17 months younger than her older brother, I often felt like I was still new and inexperienced as a mom. Especially living in Washington, DC, with a California mindset. As progressive as the city was supposed to be, I often felt talked down to as a Black mother. I shouldn’t have to defend myself or my parenting or be interrogated about things that have nothing to do with the situation. These factors made it hard to parent in general, coupled with the crippling and irrational sense of guilt I felt at being limited in my capacity to help my kids. Surprisingly enough, I lost all of those insecurities during our daughter’s cancer fight. I was empowered and present during her life and death situation. The doctors learned to respect me and often sought after my opinion, which must have been coming from the other side. To give you insight to the situation, I was using medical terminology that was correct. All that is gone now, however, in hindsight I realize I was helping my children more than I understood. My daughter said I was a good mother as her final words.

1.9 million people will be diagnosed with Cancer in the United States. Education is something we all can benefit from.

Going through approximately a decade of challenges made me question alot of things. I always thought to myself, God wouldn’t double down on us, would he? Yes, He would, and it showed me that people deal with even more while having little to no resources. 

My biggest regret has been having a level of knowledge that was ahead of its time and not always using it for myself. I was good for imparting it to others and not always able to apply it to myself when challenged by institutionalized mindsets. When you grow up around family members trained in the traditional medical system, you may receive a lot of pushback on ideas, treatments, and remedies that have no “scientific basis.” Today, many unproven folk practices are being recognized and investigated as treatments needed to cure illnesses. This is excellent news. Still, they all need funding in order to bring them to the masses and to allow for proper testing. 

 Get In Community

For me, a helpful group was Mocha Moms Inc. As a mother of color, you won’t find a better group of nationally organized, locally informed, and compassionate women who value family and children more.

During my daughter’s battle with ATRT, I went into overdrive making remedies and sending research papers to the oncologists to help her. Miracles were happening, and it was amazing. Our cancer journey took us from Washington, DC, to Philadelphia, and finally to San Francisco on a quest to discover a life-saving treatment. It was a constant emotional roller-coaster filled with countless heartbreaks and many triumphs. Eventually, she did leave us, but not without showing us a better way to live.

Sunflower (Helianthis annuus), Portfield Road
Sunflower (Helianthis annuus), Portfield Road by Maigheach-gheal is licensed under CC-BY-SA 2.0

Brighter Days Ahead

When a parent loses a child, it can be hard to recover. I am grateful to God that I did, even though it took a minute. Thankfully, we have been given a second chance with our daughter Monarch. She is the only child I carried full term. I did pregnancy my way and remained primarily stress free. She is my veggie, yoga baby, whom I spent lots of time forest bathing and grounding with while pregnant. I even had her at advanced maternal age–so never stop believing.  

Before my daughter’s death, I lived a high-stress life full of people pleasing. That is not the case today. We raise our children differently than we used to. Even as Black children, I want them to be free-thinking, have a close relationship with the environment, and radiate with love. Never underestimate the effects of stress on you, and how it transfers to your children. These things matter. They used to call me a hippie and a flower child. Now, Black hippies are everywhere, and I am committed to a life of sustainability to the best of my ability while educating others as well. Just maybe, you can will be inspired to become more concsious and live a better life, starting today.

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