About me: I am a 41 year old, Belizean-American woman. I’m an incredibly proud, single mother of 3 angel children aged 3, 9 and 11 years old. When I say angel children I do not exaggerate, they’re special and they just came to me that way. They are one of two reasons I will live a long life. I must raise them, nobody will love them like their momma, or maybe I’m so obsessed with them I can’t bear the idea of parting..
Reason number two is my utter fascination with this life. Everything; nature, animals, music, kindness, dark humor, art, strangers, best friends and family, getting weird, etc etc etc. I love myself and love my love of living. I have always been a rather carefree person; however after living with disease, in some odd way, many days I find myself more content than ever.
My Story:
In 2019, man I was on top of the world. I owned a sustainable marine tour business in southern Belize and a small organic farm. I had my two bigger children and we lived (thrived!) by the seaside. It was rather dreamy. I was pregnant with my third child early 2020 but there were complications. I decided to travel back to my hometown of St. Louis to get to a great OB doctor. Nothing was wrong with the baby. Covid hit hard and Belize shut its borders. We were stuck in the states. My tour business closed. I still felt as though something was wrong and my intuitive doctor listened to me and saw me again despite all the Covid restrictions. April 2020, four months pregnant I was diagnosed with cancer. Although I was strongly encouraged to have an abortion for medical reasons, I chose not to. Into the belly of the beast I spent the next year, in and out of hospitals during the madness of Covid. With my big belly and chemo bald head to tote! Silent oncology wards while outside rung of ambulances and MASH looking parking lots out my window. No visitors period. My baby was born at 3.1 lbs incredibly premature. Between all his and my hoses, monitors, IV’s, port, and wheelchair we managed skin to skin every day without getting too tangled up. Little guy needed to be named after the star he is, so he is my Nova. Nova only got to see half a face for his first weeks of life, everyone covered in masks. He is still known as Baby-No-Home, because since his birth we have lived a life of tumult. But still, full joy day to day. More than one thing can exist at the same time. I recovered. My family and I celebrated deeply. At this point, late 2021, tourism still hadn’t returned to southern Belize. Plus I’m not convinced the world won’t shut down again soon with another pandemic or economic disaster so I wasn’t returning to tourism. I went back to school for the most secure career there is these days; computer programming. I graduated with a technical degree from Washington University a bit after Nova turned one. I loved the field, felt so very excited for my future and absolutely full of gratitude. Very shortly after I learned the cancer had returned and was in many lymph nodes. I was placed on a strong chemo drug. One of the common side effects is eye damage. Unfortunately my eyes were strongly affected, to the extent where I can no longer stare at a computer screen for lengthy periods of time or drive much. No more career in computers for me. At some point in that hazy timeline I also underwent intensive radiation therapy which caused multiple fractures in my pelvic bones. And too many other surgeries and treatments to even remember at this point
From the beginning in 2020 the oncologists have told me repeatedly I won’t see the end of the year. Each new year I cheerfully enter their office and tell them “I’m expired, what are you going to do with me now?” I have found that I’m able to constantly correct them, and show them what can be possible. They have told me there’s no silver bullet for metastatic cancer, I have consistently pushed them to do better and find solutions. Or they have told me they are ‘extending life and quality of life’ – I’ve refused to settle for this and again, have told them to look again. Repeatedly – they have found alternative solutions when I refuse to concede. Not only have I had to fight my way through the cancers themselves, but I’ve had to battle with the entire medical system and mindset, and advocate for myself to avoid being strung along for years sick and medicated. Unfortunately, that’s the general mentality most oncologists have with patients with ‘mets’. Well I haven’t let them think of me that way. Just this January a young, ill-trained doctor that had never met me before, told me I had three months to live based on one scan he had seen. As exhausting as the constant battles with the doctors has been, I am grateful that I have the will and mindset to push and advocate for my life. It shouldn’t be this way.
So I remain positively full of strength and hope. They read my scan and ask me how much pain medication I take daily, or how often can I get out of bed. The answer is none, not even Tylenol, and I live an active life; most days. Mind over matter, and mindfulness. They look at me as a statistic, a sheet on a clipboard full of boxes to check. And that’s just the medical side, not even getting started on insurance and the greater flaws in the US medical system. People die because of the hospitals, because of the system, not because they are sick. Every single day I literally spend hours advocating for myself. Then hours more on self care so I can be comfortable. Living with disease is exhaustingly time consuming. I’m by no means fit as a fiddle either; I have bad ongoing health issues but I have to not dwell on them and persevere to enjoy today. It’s all so exhausting though. I have an amazing village. I would be dead without them. I have amazing financial support and same, I wouldn’t be here without it. It is still not enough.
It would be hard to understand unless you or a very close loved one has been in similar trenches. They say that someone that has never experienced cancer is compared to the spring, someone with cancer only once is the summer. If you’ve only seen the spring you can’t visualize the summer. Someone with metastatic cancer would be like the fall, so someone with cancer once would be unable to grasp that concept. And well the winter….I’ll face when I’m 95.
this is a real cancer cell dying, taken with an electron microscope. It’s a beautiful image that I use to meditate on.
I wish this on no one. I hate the black hole void I have created in the lives of those closest to me. But I have to constantly remind myself that I am worthy of their care, they wouldn’t have it any other way, and I would be there for them. This plea for support isn’t to you guys by the way. There’s a handful of beautiful humans I wish I could never ask a thing of again, maybe you could share this but no more, you know who you are. This call is to my greater community or maybe those who don’t know me at all.
Current Situation:
I’m now in year four+ with cancer, baby Nova is a thriving and wild 3.5 year old and the light of our lives. My oldest just graduated primary school as valedictorian and my middle child is the sweetest little heart imaginable. For three years I was treated at Siteman Cancer Center in St. Louis. Last year they informed me they had no further treatment options, so I sought care elsewhere. I am so very fortunate to have gotten into MD Anderson Cancer Center in Houston where I continue to be treated. However they are close to running out of options as well. Still I’m full of hope.. Living between Belize, Houston, and St. Louis (with three kids in tow) has become unfeasible so we have to move to Houston. I’m in the process of selling everything I own and moving to a city where we know no one. We are (mostly) handling it with grace, although no one is impressed at life decisions being so far out of our control. Surrender. The kids understand it’s for momma’s health and they’re going with the flow as best they can. I’m trying to frame it as a new adventure to my family. Regardless, I’m very grateful for the opportunity to receive world class healthcare.
Finances:
Numerous appointments and hospitalizations that I have no control over, pain, vision issues, tremendous weight and muscle loss, inability to drive, and single parenting have made it impossible to work.
Despite many people getting government aid in the US, it has been a challenge for me since I’ve spent most the past few decades living and working outside the country. That disqualifies me from many aid programs. Except Medicaid, good God thank you for that. A typical chemo infusion is $23,000, and needed every three weeks and that’s just the single bag of chemo. Medicaid has saved me. I’m now entering the realm of clinical trials though and they are not covered. People often think of clinical trials and imagine getting paid to be in them or at least at no cost. Holy moly not these ones. Pharmaceutical companies don’t need to compensate patients to enter these types of trials because people are dying to get in. Sorry (terrible cancer joke. Cancer jokes are worse than dad jokes btw….) Then to be transparent cuz people be talking… The very nice property I’ve been living at in Belize did just sell, but it wasn’t for me at all, I was more of a caretaker. And yes I have some very affluent friends and family that have provided for me in unimaginable ways. For example, during my T cell therapy clinical trial in December, one infusion, a single two hour treatment was over $400,000.
And the devastating thing is, it didn’t even work. I’m not ashamed to admit that despite so much generosity from loved ones and strangers over the past four years, I’m now completely tapped out. My village and I have scrapped ferociously to get this far and now I need to reach out further. Not to say that ends aren’t met either. Things still come together in unexpected ways. My loved ones would sell their last shirts off their back to help me if they could, but I am at a crossroads and am not too ashamed to seek help from whoever may be able to provide it. My love of life and my children far exceeds any pride or embarrassment or fear at this point. Those are my reasons for this plea.
Ways to support:
I am completely vulnerable and experienced in asking for help at this point. Oddly, help is a really funny thing to receive. It comes in a somewhat weird and wonderful variety of forms because really people don’t always know what is really needed in a given situation. So I will take the liberty of being pretty specific about my needs. Everything listed below are absolute needs, and would be so gratefully received by this funny, weird, geeky, life loving momma that I hope I’ve given you an insight into:
- “Share if you care.” Jeez face palm did I just say that lol, but for real please share this for me broadly.
- Reach out to my caregivers and support them and love on them massively, check in, or send them a massage gift certificate. Anything that could nurture them would nurture me and boy do they need it. I can’t imagine how it would be to watch my daughter, sister, or best friend endure this.
- Good (actually) healthy food. If you live near me, meal prep. If not; gift certificates to restaurants like True Foods or cold pressed juice bars, or healthy grocery stores.
- Doing fun stuff with my kids, without me having to plan it all. My kids are easy and I don’t have strict rules for them, just go have fun, they’re cool lol! This could also apply to me btw wink wink, I want to go out and feel normal and have fun when I am able. A lot of the time I can’t, but please keep inviting me or making attempts to come visit. Socializing delights me.
- Cold hard cash baby!! Goes to medical travel expenses, OTC meds, supplements, ‘general cost of living while unemployed making ends meet’, sometimes very demanding childcare needs when I’m sick or hospitalized, healthy food…to name a few. I really want to go to an upcoming retreat too to learn more about how to emotionally deal with all this; but that would be a major luxury at this point financially.
- Prayers, vibes, virtual hugs; whatever you want to call it. Send me the good love and hope. I feel it, it matters, and I appreciate it greatly.
- Visualize me old and wild with a big amount of grandkids and too many dogs in a tiny home somewhere up north. It will be so, don’t see me any other way. Don’t treat me as sick and do not be sad for me. See me thriving. As I am today and will be for years to come. Thank you. And you live well too, I love you, you too are worthy of a good day today and tomorrows’. I am a miracle and truly you are too.
Thank you
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Why GoFundMe Articles and URLs Appear on Our Website and How We Support Other GoFundMe Campaigns
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Conclusion
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