Tag: Cancer

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Pediatric Brain Tumors: Understanding the Impact

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.
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.

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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Cancer, Community And The Power of Home-Cooked Meals

Can you share a positive example of where you’ve felt loved?

When a family receives a cancer diagnosis for their child it’s surreal. It has taken me eight years to finally talk about it with consistency.

At the time when my daughter received her stage four diagnosis she was three years old. Two days prior I had signed on the dotted line after being hired on the spot to work in public affairs. This came after a stay at home stint I had to navigate with my son after receiving his ASD diagnosis. I just felt as if I was finally catching my breath from therapies, homeschooling, and living on a strict budget—then this happens.

Everyone was devastated, including our Catholic school community where we had a lot of friends. I felt so isolated. I also felt too silenced to know what we would need. But a dear friend immediately organized a meal sign up.

There was a light for us in this very dark place. Over the course of a year we received the most thoughtful meals I have ever received to date. I actually had low expectations, only to discover that these moms were chefs! I learned that a bunch of largely “stay at home moms” were actually the heart of everything. I have never felt so loved. We have never felt so loved. They thought of every person in my family. Even my husband and provided wine, desserts, magazines, and toys. I will never forget it. I vowed to do the same. It’s love like that which inspired The House of Maryam. You can never have enough love of the good kind. I feel like in this regard, I continue to pay things forward. If you are going through something, I got something good for you.

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The Hardest Goodbye I had To Say Was To My Five-Year Old

If I was any different than I am now, I honestly don’t remembfer. In my opinion if you met me within that last three years, it’s the better version, and we can go from there.

February 22 would have been my daughter’s 11th birthday. I only just now thought of it in terms of years passing. I also realized that this month was ok. I am doing quite well in a way that feels authentic. I am not putting on an affectation to present myself as something; I actively count my blessings. I’ve probably been here before. (Actually, I’m sure I have.)
It’s kind of like anticipating getting off the train, but there are a few more stops to go–but you want to be there already.

Going out, being with friends, moving about the world, and taking risks has been the best medicine. I had moments of being irritable that I immediately attributed to the fact that my daughter’s birthday was passing. But I count my blessings because I have not only felt my memory returning, but I’ve also felt grounded and even emotionally generous. All of this growth signifies that my changes are sticking.

Have you ever wondered about the heaven in the sky?

Have you ever wondered where do we go when we die? I never truly pondered this question because I’d always taken what was told to me at church at face value. I simply believed that all souls go to heaven after purgatory and ultimately we all worship at the footstool of the big throne in the sky. It wasn’t until I’d spent time at hospices and dealt with the reality of my own child’s passing that I began to inquire and encounter something that felt like it moved beyond fiction. It would during times of deep comtemplation, many of which I wrote about two years ago, that

NO ONE EVER REALLY DIES

Losing my daughter to a brain tumor was difficult. It was a sobering goodbye. More importantly, it made a person like me, who has been a lifelong Believer, leading by example, understand that I am human. Even though it is hard to understand, I really know what it’s like to be chosen because through suffering and complete surrender is where you will get the gift. Oftentimes, that’s when you are still enough and alone and broken enough to receive the keys to your real freedom: True Love. Love is power. There is no force more powerful.

A few hours before she took her last breath, I turned up her oxygen and imagined that she would have to keep breathing if the air was flowing through her lungs, but that was just one last effort to hold her. But my heart was ok with it all. I cherished every moment and took advantage of every resource to make memories, which also gave me peace. Although she was the one doing the heavy lifting with her diagnosis, she turned me into a warrior. 

It was just her and me, and it was also peaceful. If that means anything to anyone who may read this–your loved one begins to go before you see it. If you are lucky, you will be able to feel the “spirit,” or what I believe is a holy, benevolent, and peaceful spirit, fill the room. When this happens, you can see what it means when people say, “you come in to the world alone, and you go out alone.” Not only is it powerful to witness, but, it will give you a different perspective on life–you become fearless.

“WOMAN LOST AND RUNS AWAY TO FORGET HER PAST“

In reality I didn’t run, at least not physically, but I absolutely was not fully present. My memory, like my emotions, would go in waves. It took lots of painting to understand that I was grieving although I felt good. That I was more truamatized over watching the suffering and dealing with the emotional rollercoaster of cancer. The pain of feeling helpless and the pressure to be strong for others but even stronger for myself.

Not only did I learn that I am calm under pressure but I had the ability to carry others on my back during tragedy. I learned that when you surrender to your human limitations you access an unseen power. Like Maya Angelou describes our eyes open with a new clarity. For me, the eyes of my understanding first opened to compassion for me and others which is why I largely felt immense gratitude and hypersensitivity for years. It was through making papercrafts, collages, paintings and ceramics that I have learned what the root cause of so many things are for me.

The Otherside of This

Shortly after my daughter Calais passed, I had an intense desire to see where she went. I wanted heaven to be proven to me. I wanted to be shown the place where she went if it was real.

But I feel that through meditation and sheer spiritual pleading, I was shown the cosmos, and I could feel the energy. Although I could only go so far up, I felt this connection to stardust and the galaxy, and then this feeling of love washed over me, although I never saw my daughter out there physically. Yet when we talk about it from the “dust we come and the dust we return,” I feel they are referencing the cosmos.
And each day that I am painting and sewing, I tap into that energy. This practice also helps me write.

Ascending Into The Forever

When my daughter began to wind down and transition, she talked a lot about the moon. Then she saw her grandparents in her room. Finally, she said that Santa was coming and the last time she saw him he was with Mrs. Claus, and she said they had a present for me. All of this explaining to me and watching her gently ascend allowed me to feel so much peace. It was goodbye, yes, and it’s still beyond my comprehension. Yet, it never felt final because I saw her in my dreams. It felt like more of ellipses because she sent me her twin (my daughter Monarch).

So when you try to explain the inexplicable, it’s ok to know that sometimes you can’t. Knowing that you don’t have all the answers and that life can be senseless –signals the beginnings of true understanding.


Although it can be difficult, I learned from volunteering at a hospice and watching my grandparents transition that it is way more beautiful where they are going. They will tell you that if they see it. Although they are not with you in their flesh, they are probably right there with you, and you can feel them. So, even though my goodbye has been ongoing, in many ways, it still feels like she never left.

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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.
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.

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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#TBT Navigating Loss: Lessons from Grief and Art Therapy

Original Artwork by Chiara Luz circa 2018

Look closely at the image what do you see? This was one of my first collages in 2018 from an art therapy class when words had failed me after dealing with my daughter’s cancer and ultimately death. When I look back this small innocent collage said so much. This is the power of art as therapy.  What you can’t see are the words from the cartoon of the family at the dinner table where the mom says,” I think I am going to get an apartment,” and the husband has kind of a non-response. 

Thoughts: 

Sometimes you crave a fresh start but feel tethered by those you love. It’s not easy. Life strips away illusions, yet gratitude can reignite hope. My strongest bonds were forged through struggle and loss. Grief felt like coming back from a war.

During my daughter’s cancer, I faced countless challenges that prepared me for her passing. Looking back through my journals, I saw that surrender was essential—not giving up on her but accepting what I couldn’t control. Releasing the need to save her let me truly support her and witness her light. During this time my writing reflected more of my inner battles than her treatments.

I thought keeping peace at home might keep her here, and blamed myself when she worsened, but her life had its own path. Cancer made us practical: I focused on creating normalcy, my then-husband on financial stability. Neither role was glamorous, both exhausting. At the time, I felt we should “uplift” each other more. Today I understand that it was the fight that drained us.  It’s devasting to lose someone you love.

It is the fight that signifies the love and also a struggle I wouldn’t wish on anyone. Later I learned that it was love, not duty, that sustained us. Love shows up when quitting feels easier and  it’s often found in simply being present. I quit drinking long before her death, knowing alcohol wouldn’t help. Faith and meditation gave me strength I never imagined. I told myself over and over: I will not die. I am loved.

Through loss, I learned love’s freedom. In her final year, my mission was clear: show up and love her. Love demands sacrifice—a truth we often avoid. Ask yourself: Who shows up for you? Time brings clarity. While making a small art piece, I saw life’s cycle and remembered to keep believing. Love endures, hopes, and acts boldly in uncertainty. Who do you love?

However, on the flip side of this knowing I could never fully love someone who loved the world more than their soul. I explored this concept in my story “A Time of War: Two Nations One Heart.” I guess I am just a person that looks to God for my validation and less from the people and things outside of me to tell me that I belong. So, when random people from state to state would ask me Chiara Luz, “Quienes tu familia?” now I know. I now know that all of my lack, my pain, my loss were ultimately things that I would survive whether I wanted to or not. Because I have done so and remain smiling, hopeful, and with my integrity intact I know what true love is. “Dios es Amor.”

Note: Make a collage. Write what matters. Stay open. Don’t judge yourself. See what emerges. Revisit it often.