Help Emily Pay Medical Expenses #BrainTumor #BrainCancer

For: Emily Suess
Urbana, IL
Organizer: Emily Suess
Help Emily Pay Medical Expenses #BrainTumor #BrainCancer (Emily Suess)
$5,698
of $11,300 goal.
Raised by 93 donors
50% Complete

The Story

I'm fighting a rare brain tumor, but like so many people these days I need help with the cost of treatment.

Financially speaking, it sure doesn't help that it took doctors more than two years and dozens of unhelpful medical test before finally ordering the MRIs that would lead them to discover my tumor.

During that time, I was misdiagnosed with fibromyalgia. And I incurred a few thousand dollars in medical debt while my condition declined to the point of disability. I couldn't get out of the bathtub. I couldn't walk. I couldn't drive a car. I had to work as a technical writer entirely from home because I was constantly dizzy, my heart rate and blood pressure were too high, and I had trouble breathing.

My initial goal of $4,226 might seem a bit odd for a fundraiser. But it's significant because that's how much I owe the local hospital system for tests--including the MRIs that finally found the tumor--that occurred up to February 2, 2017.

If you can give anything at all, you have my sincerest gratitude. If you can't, you have my complete understanding.

Fundraiser Updates

Posted on December 9, 2017

Posted on December 9, 2017

Holy cow, you guys! Dan and I are so stinking lucky to have Phil as a friend. 

Thanks so much to Phil and the Xmas Bash 2017 crowd for the generous donations and, of course, the hours of laughter (AND DRILLING!) last night. 

Words just can't express what it means to have the support of so many people--friends and strangers alike. We wish you all a Merry Xmas and can't wait for next year's bash!

Emily and Dan


Posted on October 27, 2017

UpdateImage

Posted on October 27, 2017

I've been blurting this everywhere since Wednesday afternoon, but in case I missed anybody...

Wednesday's MRI reveled that my tumor has shrunk! I'm attaching a clip of the good news straight from my patient portal. 

Thanks to everyone who's helped us financially and cheered us on. It feels so good to be able to spread some happiness around.

Love,
Emily and Dan

Posted on July 29, 2017

UpdateImage

Posted on July 29, 2017

Here's a brief rundown of what's happening after my visit with the neuro-oncologist earlier this week:

  • Once again, my MRI was stable -- meaning no significant changes in the size or behavior of the tumor.

  • I'm starting on new chemotherapy pill that I can take from home. Right now the plan is to take that first dose on Monday evening.

  • The name of the medicine is gleostine (also called lomustine, Ceenu).

  • I take it for one day and have six weeks off, as opposed to the five-day regimen for Temodar.

  • I will resume weekly labs to make sure my blood counts are good, or at least passable, but I can do them here in Urbana. I'm going to need some fresh veins!

  • My doctor gave me a new script for PT/OT. I have to check with insurance to see if I can even afford it. But I’m hoping it will be possible and that it will help me get over some pain and numbness that’s overtaking the left side of my body lately. I will have to adjust to my new dexamethasone dosage before I can even contemplate PT though.

  • My dexamethasone dosage is being reduced from 2 mg daily to 1 mg daily. (Fingers crossed, I can stay active but a little less hungry on this dosage. I gained another 10 pounds since my last doc visit.)
For more frequent updates, visit and/or subscribe to my blog at www.emilysuess.com.

Thanks to everyone who's been donating, sharing links, sending us notes of encouragement, and cheering us on. We love you all so much.

Emily

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