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Chordoma mom

Organized by: Joy Omote

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Follow up scan #2
January 25, 2017

Hello everyone, I had my second follow up scan yesterday. The results were great. Dr.Keole stated that there is no new cancer growth, the mass See More

THE STORY:



Chordoma is a rare form of cancer that occurs in the bones of the skull and spine. Only about 300 people are diagnosed each year. That's one in a million people; I happen to be that one. My story started last year on Father's Day. It was a quiet, ordinary day at first. I'm a single mom; our daughter's dad chose not to be a part of her life, so we don't really celebrate the holiday, although we did stop by my sister's house to drop off a card for her husband, and then went shopping. However, as the day wore on, I started having severe pain in my left leg. When we got home, I told my kiddo I was going to lay down for a bit, and she went outside to play. Still not too unusual, except that the pain would not go away. Instead, it got worse. I finally went to Urgent Care; the doctors were quite concerned and sent me immediately to the Emergency Room. From there I was admitted to the hospital for what turned into a four day stay. I had blood clots in my leg, some of which had broken off and traveled to my lungs. I was lucky none had reached my brain! The doctors checked me from head to toe, looking everywhere for additional clots, and it was during those CT scans that they found a mass in my neck. The next six months were full of more scans, doctor appointments, and surgeries until, on December 28,2015, the doctors removed as much of the mass as they could. Then came the waiting, anxious days dreading the pathology reports. On January 7, 2016 I was diagnosed of cervical chordoma. I felt my life was over at 41 years old! Chordomas are relentless, and because they are so close to vital structures, including the spinal cord, brainstem, nerves and arteries, they are very hard to fight, and need highly specialized treatment. I am fortunate enough to live near a clinic that offers proton beam radiation, the most promising new therapy. I made it through weeks of radiation, strapped to a table every day, with my head locked into a mask that even covered my face, because the least movement could have sent the beam into my spinal cord instead of the tumor. I just had my three-month check-up, and the MRI scan showed no regrowth. I'm so grateful to still be alive, despite the radiation burns in my throat that have made my voice so raspy and squeaky that I sound like a ninety-year-old asthmatic who's been smoking since childhood. Life is good. I savor it more than ever, and cherish time with my daughter, but even though I have insurance, the bills are all coming in faster than I can pay them. I owe Mayo Clinic alone $5000! That's why I'm asking for help, if anyone has money to spare. Thank you and Godspeed!

$50

 

1% Raised of $9,000 Goal

  • Manuela Mata

    $25

  • Stephanie Lelo

    $25

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Organized by

Joy Omote

This is a direct to organizer fundraiser.

Donor Comments

Stephanie Lelo

Stephanie Lelo

DONATION: $25

10 months ago

Manuela Mata

Manuela Mata

DONATION: $25

WILL BE PRAYING FOR YOU. 1 year ago

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