Help 22 Year Old Cancer Patient Afford Prosthetic

Ellie Doucette is organizing this fundraiser.

Donation protected

10/21/24 Recurrence Update:

It’s back.

Today was my surgical biopsy to remove the suspicious lesion I found recently. Unfortunately, upon reviewing the MRIs, I found out I had not one, but three new lesions. One in my bicep, one in my old tumor bed, and one in my bone. My surgeon was able to remove 2. Upon opening me up, she said the tumors appeared malignant and took frozen samples to send off to pathology, which unfortunately confirmed cancer cells. I am being sent to an oncologist and will have to go through chemo a second time. After my followup on the 1st, I will begin consults for an above elbow amputation.

My surgeon is going to do 2 procedures along with the amputation: something called osseointegration which involves surgically implanting a rod at the end of the amputation site in order to make future prosthetics easier and less tiring to wear, and targeted muscle reinnervation, which involves rerouting the nerves near my stump to hopefully cut down on phantom limb pain and make robotic arms respond better, since their inner electrodes will make direct contact with the nerves.

As you can imagine, I am in shock and don’t have enough words right now. I am so heartbroken over the upcoming loss of my dominant arm, and even more terrified to face chemo for a second time.

I am adjusting the funding goal accordingly and all donations will now go towards prosthetic costs, surgery, chemo, and the million other things I’ll need to spend money on soon. Some of you may know insurance typically does not fully cover functional prosthetics, if at all. This is my dominant arm, and an above elbow amputation is rare and considered more difficult to fit for prosthetics as well. I have no idea how I will fare, and hopefully I will be able to raise enough money for something not purely cosmetic. Today was the date my nerve graft surgery was supposed to be, and within 24 hours I found out I’ll now be battling cancer for a third time. I will never feel with this hand again, and knowing it was within my reach is a grief I can’t comprehend.

I’ll be sure to update when I have wrapped my head around things more but for now this is all I know. Thank you for following along.

The short version:

Hello everyone, my name is Eldiara, I’m 22 years old, and in 2021 I was diagnosed with stage 3 synovial sarcoma, a rare type of soft tissue cancer. Last year, after undergoing chemotherapy for a recurrence, I developed median nerve palsy (paralysis) in my right hand as a result of the 3rd surgery done to my arm in order to remove the tumor and its subsequent recurrence. I’m raising money to hopefully undergo two reconstructive surgeries - one that will restore function in my paralyzed hand, and one that will allow me to regain partial sensation in my fingers.

The long story:

Hi! My name is Eldiara, I’m 22 years old, and in 2021, I was diagnosed with a rare and aggressive type of cancer called advanced (stage 3, grade 3 cells) synovial sarcoma. My cancer was unexpectedly discovered during an unplanned excision of what was originally thought to be a noncancerous nerve tumor, so after undergoing 35 rounds of radiation therapy, I underwent surgery once again to achieve clear margins. My second surgery officially put me into remission, and though I had developed some permanent numbness in my fingertips, I was 19, still felt somewhat invincible, and I was grateful to be “in the clear.”

Unfortunately, at my one year set of followup scans, they discovered a recurrence larger than my original tumor. This time around, my oncologist recommended 12 weeks of chemo with a regimen called AIM: doxorubicin / Adriamycin, which is informally referred to as the “red devil” due to it being the harshest chemo drug available, ifosfamide, and mesna. I underwent chemotherapy all throughout my 21st birthday and the few months surrounding it, and on March 29th, 2023, I went in for my third surgery, done by my limb salvaging surgeon to try to avoid amputation.

Photos below

Upon starting the resection, they discovered much more disease than previously expected or planned for. As my cancer grew, it had traveled along my median nerve, making it difficult to spot on my pre-op MRI. They also found that my recurrence had still managed to double in size over the last few months, despite actively going through chemo. I again underwent an unplanned excision of what was originally only supposed to be a few centimeters of tissue, and my two hour surgery turned into 6 hours. This time around, I woke up from surgery with no sensation in the right half of my right hand, no sensation in the left side of my arm extending down to my elbow, and zero response from my middle finger, pointer finger, and thumb.

Essentially 1/2 of my hand and wrist was paralyzed from that day on. My surgeon predicted that the paralysis and numbness would resolve itself with time, but over the next few months, I failed to regain any sensation in my hand or my arm. I slowly regained partial usage of my middle finger, but not my middle finger, or thumb. I now live with a complete lack of sensation in half of my arm and three fingers, which has led to many issues, such as sticking my hand into boiling water while trying to cook because I wasn’t paying enough attention (you’re allowed to laugh).

Recently, a well-respected orthopedic surgeon from UCLA who specializes in upper extremity sarcoma took interest in my case and sent me in for a nerve conduction study - which unfortunately confirmed that I have complete median nerve palsy, some damage to my ulnar nerve, and a large portion of my median nerve had been completely cut out during my prior surgeries. This means my nerves have no chance to repair themselves, whereas in many cases of nerve damage, the nerves will regrow over time. My surgeon then brought up two possible reconstructive surgeries: a tendon transfer, and a nerve transfer. The only caveat was that she wanted to wait until my one year scans came back with no visible disease, in order to proceed with any reconstruction. I also learned that I ever happen to have another recurrence in the future, my only safe choice going forward is to undergo an above elbow amputation.

Recently, it was time for my one year scans, (MRI of my arm & CT of the lungs) and thankfully, they both came back clean, so I was finally able to discuss the next steps with my surgeon. Hearing that I have the option to not only regain function of my pointer finger and thumb, but also regain partial sensation in the right sector of my hand has been life changing. Your thumb and pointer finger are your primary sources of sensory input - I’ve spent the last three years trying to come to terms with the fact that I will never again be able to feel a guitar string, a hot stove, the hand I’m holding, a spoon, my own dog; you get the point. And more recently, I’ve spent the past year trying to accept that I’d have to live with this paralysis; I’ll never again be able to use what’s supposed to be my dominant hand to pick small things up off of the ground, hold a cup properly, turn a doorknob, button up my clothes, put earrings in, use utensils, or even hold someone else’s hand at all.

Being paralyzed in my dominant hand has proven to be so much more disabling than I ever would’ve imagined, and getting partial function and sensation back through transfer surgeries would be life changing. Cancer has more or less taken my hair, my time, my early adulthood, and now the use of my most important limb, but I feel so much more optimistic knowing that I now have the chance to regain some semblance of normalcy. I look forward to a time where everyday won’t come with the perpetual reminder that I’m not a normal 22 year old with a long, healthy future in front of me. And realistically, I don’t know how much time I have left before my situation may necessitate an amputation, so I would love to spend as much time as I can with two (mostly) functional arms.

All donations will go towards paying for the cost of the surgeries themselves, the estimated 2 years of physical therapy I’ll need afterwards, any medications needed, co-pays for office follow ups, lost income as I recover (I’m a dog trainer, and you need both hands for that unfortunately), and other miscellaneous surgery-related expenses that may arise. I don’t usually like asking for help, but the implications of these surgeries make me feel very optimistic about my chances for a more normal and functional future. Thank you all for reading this far - and I’m so grateful for any support I can get, even if it’s just a quick repost or positive message (:

Photos of my journey are nested below, along with more information on synovial sarcoma. Verygraphic imagery warning ⚠️

Overview of my most recent appointment:

Very bald, and very ready for surgery:

Second degree burn from radiation therapy:

My failed biopsy where they realized the tumor had grown into my median nerve, which ended up as one of the most traumatic medical experiences of my life: