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Help Amanda in her fight against Neuroblastoma!

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Hello! My name is Amanda! I am an illustrator, a soccer player and fan, an appreciator of good books and good coffee, and I’ll be needing all the help I can get to fight a very rare form of cancer!

I’m no stranger to rare “conditions” as I am also intersex, with a very rare intersex variation! Ovotestisticular DSD! I’ve discovered a sense of self and a sense of pride in being intersex, I can’t say the same for this type of cancer.

Long story short: A CT scan on January 5th revealed a large mass in my back. Necrosis seen in some of the tissue and other factors spelled out a malignant tumor and many of my doctors’ initial diagnosis was Lymphoma! which, I’ve heard can be very treatable depending on the type.

I do not have Lymphoma.

Pathology tests and stains revealed that I have an extremely rare cancer called a Neuroblastoma. It’s supposedly primarily found in children. Finding it in adults is super rare, like 1 in 10 million rare. So, that’s…something!

I’ve been trying to find the humor (in this tumor) in all this, and this new diagnosis has thrown a bit of a wrench in all that. Still trying to stay positive!

From what I understand, treatment consists of a combination of surgery and chemotherapy. I don’t yet know my prognosis. I’ve been at Tufts, but since this is a very rare form of cancer, My doctors would like to transfer me to a specialized cancer center here in the US.

There are a few specialized cancer centers, even one in Boston, but my doctors think I would be better served somewhere else that has experience with treating this type of very rare cancer. I know despite how abysmal the US heath insurance system can be - I’m lucky that it’s actually served me fairly well so far, Thanks MassHealth! - I expect all this to cost a pretty penny.

In addition to dealing with the transfer to an out of state hospital, and all the costs that might happen because of that, my parents are going to travel to help be with me through all this - which I will be forever thankful and indebted to them.

We will need to think about lodging, food costs, travel costs, pre-existing bills (I still have a car to pay off that I’d really like to keep through all this as I imagine there will be lots of traveling and trips to and from various places), loss of income (I’d love to continue my book illustration work through all this but I don’t know how feasible that will be), and just general peace of mind that fighting this rare little bugger won’t financially devastate us. I’d also just love to be able to fight this with as little stress as possible and get back to living my life ( with a new appreciation for the gift that is existence and the fragility of life itself! ), however long it may be!

Any show of support helps and me and my family would be eternally grateful, please share this if you can!


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Fundraising team (2)

Amanda Erb
Boston, MA
Anita Erb
Team member

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