<div>Hi, my name is Eily. I'm 24, and I was diagnosed in 2023 with Vulvar Epithelioid Sarcoma at the age of 21.
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<div>I had surgery and radiation that ended in March of 2024. I started my journey into remission until this April. <strong>My cancer came back with spread to nearby lymph nodes.</strong> I had surgery in May to remove them, but scans have shown as of July, only a few weeks ago, that more lymph nodes need to be removed with spread further up towards the left ovary. Doctors want me to go through chemo, surgery, and radiation to give me the best chances of having a long life without cancer.
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<div>Epithelioid Sarcoma has high recurrence rates and is one of the only sarcomas to spread to lymph nodes. With proximal cases like mine, <strong>we are trying to move quickly to prevent further spread to the lungs.</strong> Sarcomas are 1% of all cancer diagnoses, making research and available treatments limited.
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<div>With rare cancers, travel to other hospitals in different states is unfortunately common and expensive. Treatment alone is pricey, and my family is still paying off prior medical expenses. On top of this, my condition no longer allows me to work.
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<div>To anyone who can, I am seeking out funds to cover treatment, travel, and comfort/daily needs such as wigs for my cancer journey or occasional fun things that make life feel a little less scary. I am also using some of the funds towards necessities since my condition does not allow me to work.
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<div>I hope to in the future, use 25% of the funds that I will receive to donate to the Sarcoma Foundation of America to help current and future patients have more opportunities.
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<div><strong>Updates bellow</strong>
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<div>Hello all, thank you for your support! It truly helps a lot and it’s appreciated more than you know. ❤️
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<div>I wanted to add in some health updates.
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<div>I will be starting chemo on 8/29, due to my low blood platelet count I will only be starting one kind of chemo, doxorubicin, also known as the red devil. I will be taking two courses of this until October, when I am set to have a radical lymphadenectomy on my lower abdomen, which may change slightly if chemo is proven to be effective. Due to the rarity of this cancer, chemo has had mixed results in patients, and testing it allows us to explore more avenues.
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<div>Adding onto this, after my doses of chemo I will be having my surgery and further treatments in Boston, as they harbor one of the top three hospitals in the world for sarcoma treatment.
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<div>As news comes in I will keep this page and my social media accounts updated on my condition.
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<div><strong>Update</strong> <strong>Two</strong>
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<div>Hi everyone, I have had round one of chemo and a PET scan. The good news is the PET scan shows no metabolically active cancer after the first round of chemotherapy! The suspicious lymph node has shrunken and they do not see tumors elsewhere. I was told this rapid and well of a response is unusual with my cancer but I’ll take what I can get. This however doesn’t mean that there aren’t any microscopic cancer cells still at work. The plan that I previously outlined will still be in effect until otherwise changed by my oncology team.
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<div>Thank you all again! ❤️
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<div><strong>Update Three</strong>
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<div>Hello all, it has been about two weeks since my second dose of chemo. It has left me pretty much fully bald so using some of the funds in here I bought and installed a human haired wig! This has now become my daily wear wig and I even had it on for my first art show yesterday.
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<div>I will also be leaving shortly on Tuesday for Boston for scans needed for my surgery which has officially been scheduled for Oct 17th. These scans will show if chemo is or isn’t still effective, but we’re hopeful that with milder symptoms this time around, and a good response to the first dose that it is. They also help my surgeon plan out a more detailed course of action which so far will have multiple lymph nodes removed along with my left ovary.
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<div>With all of that being said I will most likely be in Boston for at least a few months to recover from the initial surgery and any sort of further treatment.
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<div>I will be back for my birthday next Sunday and I’m so grateful that people here have given me a wig that I can feel happy in. Alongside a wig, I am thankful to have been able to buy small comfort things here and there, making memories with the people I care about. It means so much to me that all of you have come together to support me and make my life as enjoyable as possible throughout my journey. Thank you all again so much for everything and I will continue to update this page and my social media accounts with information. ❤️
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<div><strong>Update Four </strong>
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<div>I know that I updated my social media pages with this so some may have noticed but, further scans showed that only two rounds of chemo shrunk my tumors by half! Chemo was very effective against the cancer and made my surgery less invasive.
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<div>I have had surgery which was successful! I have some neuropathy and trouble walking but I’m bouncing back. Seven lymph nodes were removed, part of my left ovary, and my intestines moved up in case the next steps include radiation. I am currently waiting on pathology to report back if there was microscopic spread to any of the lymph nodes outside of the two that were suspicious.
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<div>My father and I are currently waiting in Boston to hear back about what the oncology team believes is the best course of care for after surgery. If it is chemo I will be returning to PA soon and if it’s radiation I will probably be in Boston for at least a few months.
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<div>Thank you all for your continued support of my journey. ❤️ I will keep updating this page and my social media when possible, if you’d like to follow my Instagram for faster updates it’s @eilys.page which I keep public so you don’t have to follow to keep tabs.
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<div><strong>Update Five </strong>
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<div>Hello everyone, I just wanted to add in more recent news. Only two of the seven removed lymph nodes were cancerous, which showed on scans back in July, and there was no microscopic spread! I have returned back to Pennsylvania and as of next steps, I will be finishing chemo here, and hoping that the last three rounds are worth it. Thank you all once again. ❤️
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<div><strong>Update Six </strong>
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<div>Hello everyone it has been some time since updating here and I found I should inform you all of what has happened so far. I was put on a more rigorous chemo regimen, ifosfamide and doxorubicin, and I’ve experienced some small bumps in the road because of it. Nothing unusual for these cycles but hard on the body.
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<div>Due to surgeries, I have also been diagnosed with other conditions such as Lymphedema, and post surgical neuropathy. Lymphedema is a condition where your lymphatic system does not properly drain your bodies fluids, causing build up, difficulty with movement, and sometimes even pain. Luckily, I am a stage zero so I only require specialized compression gear, and safe exercise. Post surgical neuropathy is when there is a loss of sensation in a part of the body due to surgery, I have now been dealing with it for the last few months since my surgery in October. It predominantly effects my left leg, which in combination with the lymphedema has caused issues with my mobility, and I went from a wheelchair to now using a cane.
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<div>I only have one more round of chemo in a little over a week, I hope to recover in the upcoming months, and to continue gaining mobility so I can live as normal of a life after chemo as possible. Thank you all for aiding in my battle thus far. ❤️
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<div>(for fun and just to add a bit of variety I also bought a secondary wig!)
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<div><strong>Update 7 </strong>
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<div>Hello again everyone, I wanted to post that since my last update, I have finished my chemo on 1/30/26 and I am hopefully starting remission now. I have a pet scan on 2/11 that will show me if there is anything left, I’m hopeful though that this is the end. Thank you all for sticking by me and continuing to show your support for me, my family, and friends. ❤️
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Support Eily's Battle with Epithelioid Sarcoma

Support Eily's Battle with Epithelioid Sarcoma

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