Help Emily Pay Medical Expenses #BrainTumor #BrainCancer

For: Emily Suess
Urbana, IL
Organizer: Emily Suess
Help Emily Pay Medical Expenses #BrainTumor #BrainCancer (Emily Suess)
$4,933
of $11,300 goal.
Raised by 78 donors
43% 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 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

Posted on July 2, 2017

UpdateImage

Posted on July 2, 2017

This past week I was feeling alert enough to successfully complete two applications for disability insurance -- one is a private policy I purchased through my former employer and the other one is for SSDI. I can't say whether or when I will start receiving any income from these sources, but I am at least relieved to have completed the tedious application process. If approved I could, at least for a certain amount of time, replace about 60% of my former income while I continue to receive treatment. This would be such a huge help.

I also have health insurance again, which makes me feel a little bit better about our financial future. And that means it's about time to start seeing ALL THE DOCTORS again. Next week I have an appointment with an allergist to determine whether or not I am allergic to the chemotherapy pill my oncologist had originally prescribed for ongoing treatment. Once I get a definitive answer on that, the doctor will formulate a plan for continued treatment. We are all still hoping we can shrink the tumor.

Thank you to every single one of you that have given to this campaign. Your donations helped us pay our mortgage this month!

Love,
Emily & Dan

Posted on May 13, 2017

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Posted on May 13, 2017

Thanks to all of you, I was able to make another payment to Carle Hospital this morning!

w00t!

Yesterday, total donations raised reached the 50% mark and my friend Kristin at Aubrey's Boutique gave away a pair of cultured pearl earrings.

If that's not awesome enough, she's offered to do another giveaway when my YouCaring campaign reaches 75% or $3,169.50. Details available here: https://www.facebook.com/AubreysBoutiqueandMore/posts/276108452800089

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