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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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Deck The Halls With Gingerbread Walls: Plus, The 14th Century Recipe!

By Chiara Luz

This past weekend I picked up a gingerbread house from Costco. It was too sweet of a deal to pass up at only $13.99. A little girl who was with her mom saw it in my cart and said, โ€œA gingerbread house, Momโ€”no fair!โ€ Her mother started to head over to the aisle after I told her the price.

I had fun putting it together with my daughter. There were some gingerbread people in the front of the house that seem to have gone missing (hmm) โ€” I wonder how that happened! But I love making traditions with my family. I actually did not grow up putting together a gingerbread house, but a friend from my kid’s Catholic school kept giving me a kit and I finally got into it. If you are looking for a fun, no-stress activity, this is it. Plus, the icing is yummy.


How Did Gingerbread Houses Become a Christmas Thing?

Gingerbread dates back to medieval Europe, where it was a luxury treat made with honey and exotic spices. The first recorded English recipe appeared in 1390 in The Forme of Cury, written by the cooks of King Richard II.

A page from late 14th-century manuscript in the John Rylands Library, Manchester[a]

The idea of building houses from gingerbread started in 16th-century Germany, inspired by the Brothers Grimm fairy tale Hansel and Gretel. Side note: as a child my mom used to read me these very scary Grimm’s fairy tales as a kid. I think they liked to scare kids in the 80s. But anyway, German bakers turned this into an art form, and immigrants later brought the tradition to America. Today, decorating gingerbread houses is a festive way to combine creativity, sweetness, and family fun.


The Original Gingerbread Recipe (14th Century)

This medieval version was more like a spiced honey candy than a cookie:

Ingredients:

  • 1 quart honey
  • Saffron (for color)
  • Powdered pepper
  • Grated bread (to thicken)
  • Powdered cinnamon
  • Optional: sandalwood (for red coloring)
  • Cloves (for decoration)

Instructions:

  1. Boil the honey and skim it clean.
  2. Add saffron and powdered pepper.
  3. Stir in grated bread until thick enough to slice.
  4. Sprinkle cinnamon on top.
  5. Shape into squares or slices.
  6. Decorate with box leaves and cloves; color red with sandalwood if desired.

This treat was served at feasts and cut into diamondsโ€”sweet, chewy, and spiced, a far cry from todayโ€™s molasses-based cookies!


So if youโ€™re looking for a cozy holiday tradition, grab a kit, gather your loved ones, and make your own sweet memories.

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Creative Tooth Envelopes for Kids

“Tooth Envelopes” by Chiara Luz

With young kids, a lot of my mental space is taken up, especially since my daughter is still losing teeth. I got tired of the usual โ€œput it under the pillow and leave moneyโ€ routine, so I decided to make little money envelopes. Theyโ€™re great because when your child loses a tooth, they can color the envelope and place it under their pillow. While theyโ€™re asleep or out of the room, you can use a matching envelope to add money, or use the one they decorated. Iโ€™ll be adding these to the family section of my shop later this week, along with a tooth fairy envelope that tells a story. Subscribers will get exclusive access to one-of-a-kind original artwork and some fun extras for everyone. Do you use tooth fairy bags for your kids? Iโ€™d love to know how you handle it.

I am adding these in the family section of the shop later this week if you want to grab a few for yourself. I am creating a tooth fairy envelope that can tell a story as well.

For my subscribers there will be an invite only to one of a kind original artwork and then some fun stuff for all.

Do you use tooth fairy bags for your kids? Let me know how you manage that. I would be curious.

Don’t forget to share our posts. We have lots of goodies coming ๐Ÿ™‚

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Forgiveness And Joy Keeps The Spirit Young

Written By La Luz

Daily writing prompt
What does it mean to be a kid at heart?

I woke up this morning with hearing the saying, “After you’ve done all you can, you just stand.” After I heard that, I felt a peace wash over me. Some may or may not know, but I am an intercessor and I proudly stand in the gap for others who cannot pray for themselves. That is all of us some time.

In these days and times that feel very tense, and like we are having a battle between true and false, and light and dark–after we plead our case, it is time to stand. The world right now seems to be fueled by anger. There is a desperate need to stir up a hatred so palpable that if we succumb to this void, it will overtake us. There is a general belief that the truth rings true, and if it does, we don’t need to be cajoled within an inch of our life to receive it. However, there is nothing that we can do about the heaviness that exists. It is by design and has existed from the foundation of the world in an effort to steal your joy, faith, peace, and ultimately your hope. Anger robs us of the promise of happiness and cloaks our inner child with disbelief and agitation. Once this happens, we lack the ability to forgive. Forgiveness is a major conduit of change and transformational energy. It is of the highest vibration we lay hold of when we are able to forgive. When you forgive those who have wronged you, you are rewarded with a gift of youth and vitality because you have made your heavenly Father proud.

“Be kind to one another, tenderhearted, forgiving one another, as God in Christ forgave you.” Ephesians 4:32

It is not easy to forgive. This is I know. If it is easy intellectually, we know that healing takes time. But when I really feel stuck, I like to look at my children who sometimes fight like cats and dogs but they could never be apart from each other. Even though my daughter knows that her brother is going to say something mean or do something mean, it never kills her desire to love him. I lived like that for a long time. In many ways I still do. It’s only when my ego kicks in and I worry about looking like a fool or being mistreated do I go down the rabbit hole of hypotheticals and scenarios of what could be instead of what has typically been–God’s protection, grace, and favor over my life.

โ€œJudge not, and you will not be judged; condemn not, and you will not be condemned; forgive, and you will be forgiven” Luke 6:37

We often forget that everything is actually working in our favor. Every setback, every situation, and burden is strengthening our resolve to surrender. We know that sometimes forgiveness feels like a tall order, but that’s why Lamentations was written, every know and then we are going to complain. That’s ok. But, if you want to experience true freedom, true joy, then you must forgive. It has a way of lightening your spirit and allowing laughter to come in. When laughter comes in, you aren’t taking yourself so seriously. When you stop being so serious you can connect with your inner child and see the good in others. If you are guilty of wearing rose colored glasses, well, I’ m inclined to believe that you still made it out of your past situations ok.

Confession

I am a believer in going to confession. I go once a month and each time I go, I try to go deeper into identifying what my issues and faults are against others. Almost all of them are rooted in pride or unforgiveness and the absolution redirects me towards family time. We have to be thankful for our families. Everything that we are doing is about family. I am a big kid at heart so I play too much with my kids. I like to scare them or roll around my house chasing them. I like to dance and sing loud and laugh. All of these things keep me happy, youthful and young. It also shows my kids that there is a contrast to my seriousness and that I am learning and growing too. If you feel you need permission to enjoy yourself or be a kid at heart, take this as confirmation. Go do something you used to love to do. Get some friends together or go roller-skating. Whatever you do, enjoy your life. It is a gift.

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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.