Natalia - Journal
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This is the ugly face of Ewing’s Sarcoma.
Ewing’s Sarcoma is a blue cell tumor that is unmistakable when you see it under a microscope. Our sarcoma specialist was 100% certain the day that he took a biopsy of the large tumor growing on Natalia’s femur. Without a doubt. It was a shock to me that he didn’t wait for the pathology report to come back.
Our lives changed forever that day.
Imagine your child woke up one morning with a cut. A cut that would kill them if left uncovered. But the only FDA approved bandage available had poison in it. But the FDA tells you "it's ok", because the bandage "works", even though it could cause more cuts, neuropathy, nerve damage, PTSD, internal bleeding, seizures, and death. But it's ok because they studied these bandages FORTY years ago. And guess what, if you want a better bandage it's up to YOU, to march on Capitol Hill, to raise money for less toxic bandages, to BEG people to care. You have to put that bandage on your baby every day, knowing the damage, because your government will not research safer ones. They tell you they are, but they are lying, because the current studies are the SAME drugs used now. Welcome to Childhood
*ETA- I shared this last year and borrowed from another fellow cancer mom, I did not write this.[...]
Welcome to the Natalia support family! This site is for family and friends, old and new, to organize our efforts to support this extraordinary person. This page will serve as your home base for rallying the troops, receiving updates , and raising dearly needed funds to support Natalia . Here's the plan:
Your First Step: Please take 30 seconds to click on the "Follow" button on the top right of this page. This will allow you to receive updates, read journal entries, make donations, share Natalia ’s story on social media, and help the family with week-to-week calendaring needs. Though not mandatory to follow Natalia ’s page, we encourage you to easily create an account with your name and email in order to be able to post photos, leave comments and sign up as a helping hand on the Calendar page. Feel free to upload a photo of yourself to your profile so we can get to know and recognize others on Natalia ’s support team. After clicking “Follow” above, read on to learn more about what you can do to help.
Journal: This tab is where you can read the latest entries posted for Natalia and our support team. You may see additional authors writing updates here to help alleviate pressure for Natalia and expedite information sharing. Each post is followed by a photo and name of the author of the entry. You can reply with supportive comments to any journal entry, or click on the name of its author to send a private message.
Posts: This is where you can leave an encouraging message for Natalia and family, and to read thoughts left by others! If you have something pressing you'd like suggest that everyone sees (e.g. a fundraiser or upcoming event you're spearheading), please don't hesitate to contact us via private message so we can consider sharing it more widely in the Journal sections. There will undoubtedly be many coordinated efforts and events ahead, and we want to make certain they’re organized and publicized through this site to help drive the greatest possible impact.
Calendar: Please see this important section to learn what the family needs NOW. This will be an especially helpful section for locals in close proximity to Natalia . This is an up-to-date calendar which will list the family's immediate needs such as child-care, rides, and meals to help most in the short term. If you see a need posted and can fill it, please sign up through the calendar page directly (i.e. not through private communication) to let us and others know that you've committed to that need. Please check back often to help out with the most recently posted needs!
Donations: The very most impactful way to help Natalia ’s is to make a direct donation right now. After insurance participation, bills and related costs are expected to reach several thousand dollars. This fund will be used at the sole discretion of Natalia and family to help manage all related expenses, and will give them the flexibility to take time off work as needed to directly support Natalia ’s. Donations can be made securely using credit or debit card for any amount. PostHope.org generously makes these donations free of any fees. All donations, large and small, come with the eternal gratitude. Thank you for your generosity in considering what amount you are personally able to give.
Perhaps more importantly, you will also find the tools to share your donation and Natalia ’s story with friends and family via Facebook and social media. After donating, please click the social media buttons to share far, wide, publicly and OFTEN! We believe that many kind strangers online will feel moved by Natalia ’s journey.
Notifications: After clicking “Follow” above, you’ll then see a tab to manage “Notifications”. If you feel you’re receiving too many or too few email notifications, please check this section to tailor notifications to your areas of interest. For example, if you want to receive journal updates but not new calendar posts, or any combination of notifications from this site, you can do set them to your preference this section.
Don’t Forget! If you haven’t done so already, please click “Follow” on the top right. It’s your very next step to showing your support!