Let's Armor Genessis Against This Rare Cancer!

For: Genessis Nubia Nedwick
Los Angeles, CA
Organizer: Lillian Castel de Oro
Let's Armor Genessis Against This Rare Cancer! (Genessis Nubia Nedwick)
$11,139
of $20,000 goal
55% Complete
Raised by 150 donors

The Story

Edit, March 8th, 2018

Our dear, sweet, snarky sister Genessis is nearing the end of her tenure on earth. This fundraiser is still going to support our family as we help her transition gracefully into the next world. 

Genessis' time on earth has been so rich, so touching, so impactful, and we will not let her leave this earthen plain without her feeling impact of her life. Thus, we are holding a "living wake" where she will get to hear all the beautiful things said at funerals. We will fill her up with joy and purpose before she transitions. All money goes to this celebration, the doula who is guiding this transition and the memorial service which will be held afterwards (and outstanding medical expenses).


At the tender age of 26, Genessis Nedwick, sister, daughter, friend, girlfriend, beauty, has been diagnosed with an incredibly rare form of bile-duct cancer (Intrahepatic Cholangiocarcinoma with Metastasis to the Liver and Lymph Nodes). There are only 20,000 cases in the United States a year. Not only is it rare, but the average age of a diagnosed patient is 70 years old, which means there is little information/research about how it came about and how her body will be able to recover. This crowdfunding is to help her support herself as she quits her job, seeks appropriate insurance coverage, and receives the help from a Hepatobiliary Oncologist who will treat her case appropriately. Below, I’ll go into the timeline and details of why these funds are needed.

Who Is Genessis, and Who Am I:

Genessis Nubia Nedwick is a 27-year-old adorable woman with sharp writing skills, great wit, a talent for organization and spreadsheets, a take-charge attitude, and a sweet yet powerful demeanor. She is my sister, my littlest sister, third in a line of “Nedwicks” -- Lily, Andrea, and Genessis. Genessis has provided years of service to her community of friends by being an exceptional and honest friend, running gatherings, coordinating volunteers, cleaning up afterwards, participating in community events, and being an all-around badass.

We sisters show up for each other when help is needed the most, to kick butt and take names when one of us is unable to it alone. We are a team of Pandas, cute and wickedly funny, and we do not want to imagine life without our youngest sister.

These funds would go to helping sustain Genessis as she navigates our tangled medical system, receives treatment for this unfortunate diagnosis, and recovers into determined remission. There is nothing more impressive than watching her advocate for herself, insisting that doctors pay attention, pushing referrals through insurance, and making appointments that aren’t over a month out. At this point, she needs the financial support to make her efforts effective.   

The Diagnosis:

In December of 2016, Genessis felt a sharp pain in her upper right abdomen and a lump under the ribcage. The doctor ordered an ultrasound, and over the course of three months and many tests, they found of a malignant mass larger than a tennis ball in her liver, which seems to have started in the bile ducts.

The process to get to where we are has been slow and full of anxiety. It took over three months to get this diagnosis. Now it has been six months, and she is finally in treatment. The HMO referral-and-wait-to-get-an-appointment system was achingly difficult. It was waiting game while this invader carried on, having its way with my sister's body. Every month that went by put her life in more danger. The final diagnosis is even still murky: the cancer is in her liver, bile ducts, and lymph nodes (happily not the pancreas), and thus seems far along enough to be considered as stage 4, but between all the doctors she’s seen and various pathology reports, the results are inconclusive of the actual source of the cancer., However, the oncologist treating Genessis is cautiously optimistic about her progress and ability to recover.

The Aching Difficulties of our Medical System, or Why We Need Crowdfunding:

The insurance Genessis originally had through her work was an extremely limited HMO whose medical group referred her to an oncologist who was unprepared, disinterested, and pessimistic about her case. He did not even bother to look at her scans, dismissed surgery, and wasn’t confident about any form of treatment.

Through a caring friend who works at Cedar’s Sinai, we found a fantastic oncologist, Dr. Hendifar. Through the insurance obtained through her work, she was able to get the first appointment with Dr. Hendifar covered. In that first appointment, Genessis finally found the confidence and patient care she was looking for. He was kind, concerned, and just as determined as she is.  However, after weeks of research and detangling her insurance, it was found that there was no way she could continue to be seen/treated by him. Because the cancer was now making it difficult to work and essentially disabling her, she had to quit her job and apply for Medi-Cal. Thankfully, Cedars Sinai and Dr. Hendifar accept full scope Medi-Cal.

It’s been nearly two months since she quit her job and applied for Medi-Cal so that she could be treated by this oncologist who specializes in her form of cancer, and who actually wants to help her. The medi-cal application can take weeks or months, so in an act of desperation, extenuating circumstances, various ER visits, Genessis was able to achieve qualifying for Emergent/Immediate Medi-Cal to start treatment as soon as possible. Since we now have the appropriate oncologist, she set the goal to find the insurance coverage needed to move forward with treatment. Genessis is now in treatment by receiving Chemotherapy, which considerably weakens her so for the foreseeable future, she will not be able to return to work.

Being nearly two months since she has worked, she is out of resources and has no income to cover living expenses; medical debt incurred from pay-out-of-pocket procedures to find out how far advanced the cancer really is; medications; and future surgery/treatments/clinical trials that may not be covered by her Medi-Cal.

We don’t have more time to wait. Please help us save our sister, our friend, our community member, our Genessis.  

Thank you, for reading this, and for your contribution and/or your share! Your efforts will not be in vain; her determination to live is inspiring, and she already has the Cedar’s Sinai staff in an uproar.

Fundraiser Updates

Posted on March 9, 2018

Posted on March 9, 2018

Edit, March 8th, 2018

Our dear, sweet, snarky sister Genessis is nearing the end of her tenure on earth. This fundraiser is still going to support our family as we help her transition gracefully into the next world. 

Genessis' time on earth has been so rich, so touching, so impactful, and we will not let her leave this earthen plain without her feeling impact of her life. Thus, we are holding a "living wake" where she will get to hear all the beautiful things said at funerals. We will fill her up with joy and purpose before she transitions. All money goes to this celebration, the doula who is guiding this transition and the memorial service which will be held afterwards (and outstanding medical expenses).


Posted on October 26, 2017

UpdateImage

Posted on October 26, 2017

So last Saturday, (10/21) I had the honor the represent cancer patients on behalf of Cedars Sinai during the We Can Survive cancer benefit hosted by 97.1 APM Radio, at the Hollywood Bowl. I was asked to go on stage and introduce a surprise guest artist. This was quite the incredible experience. Admittedly, top 40s music is not typically my jam, but I was able to spend a delightful night with my handsome boyfriend, be treated as a VIP, and be on the Hollywood Bowl stage.

There were three highlights that I don't think I will ever forget.

The first is walking out onto the stage and staring at 18,000 people, knowing that the majority of them are staring at me, and they know that I have cancer. It was nerve wracking and exciting at the same time. That feeling was paired with the knowledge that the team at Cedars Sinai chose me to represent my peers as we go through the journey of having cancer. When I was informed that they wanted me to do this, I was told, "We want the face of cancer to be seen as a vibrant 27 year old woman." It truly was an honor to be able to show people that cancer doesn't necessarily mean a patient makes a left turn into a sickly lifestyle that is advertised with a balding head and skeletal body. Cancer does not discriminate. It affects any kind of person regardless of their age, lifestyle, health, demeanor, temperament, culture, religion, race, ethnicity, gender identity, or sexual preference. Cancer doesn't give a fuck and anyone can be a victim of it. I was asked to be proof of that, and I felt like I was also able to show people that as cancer patients, we don't have to allow it to victimize us into a limited life. 

The second highlight was singing Macklemore's Same Love with everyone else in the crowd. I'm very cynical and pessimistic about the masses and their actions/thoughts as a whole. It was amazing to sing along with so many other people who agree with such an important message. We all were a part of a mass of people who in the same moment, were singing about the same idea that should be a reality. 

My favorite moment happened very candidly. Jon and I escaped to the bathrooms and decided to meet at a particular stain on the ground. As I was staring at the ground, trying to find the stain, a girl approached me. I can't remember exactly what she said, but she congratulated me for my journey. I think she may have had the wrong idea and thought I was a cancer survivor and not a patient, but that didn't matter. The fact that she recognized me and approached me to offer her best thoughts and wishes surprised me. She gave me a tangible experience of genuine kindness from a complete stranger. In retrospect, I wish I had asked her name because I will always remember her and her bright smile. 

Posted on October 20, 2017

UpdateImage

Posted on October 20, 2017

It’s about time for an update!


This is Genessis here. First I would love to graciously thank everyone who has donated so far. Every contribution, big and small and been an incredible help!


Through lots of turmoil and effort, I was able to find a wonderful oncologist at the Cedars Sinai Samuel Oschin Cancer Institute. In June of this year, I started chemotherapy. We started with the standard chemo for my kind of cancer. After months of a miserably hot summer, the chemo was ineffective to shrink the cancer.


The cancer itself has been more defined. On the right side of my body, about 25% of my liver is tumor. I have another tumor that is much smaller than the larger. My lymph nodes are also cancerous.


Now that we’ve gone through chemo, we’re going to go the immunotherapy route. I have entered into an immunotherapy clinical trial. I am very excited about this because immunotherapy does not have many terrible side effects as chemo. Even though the chemi I was administered wasn’t as aggressive as others, it still made me very tired and weak. The immunotherapy will not have many side effects. My first infusion will be on monday.


Before, the goal was surgery. Now the goal is to find a treatment that will gain control over the cancer so that it shrinks. Only when the tumors are smaller can we start thinking about surgery.


At this time I continue to live and maintain the best quality of life as possible through experiences and adventure. I appreciate any and all well wishes, thoughts, and support.

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