Deb Kelly Medical Support Fund

$31,536 of $40,000 goal

Raised by 310 people in 12 months
Created September 25, 2017
Sandra Paniccia
on behalf of Deborah Stayer Kelly
Dear friends,

Try to imagine: You’re 46 years old, two sons (Bryce, 14, and David, 12), a single parent household that requires two jobs to make ends meet, and being diagnosed with cancer twice in 10 months. Stage 4 is a terrifying diagnosis….

The directors of the Marketing and Communications team at Cornell University have created this GoFundMe campaign on behalf of our colleague and friend Deb Stayer Kelly.

Deb has worked with us for four years, originally in the Marketing Department at the Samuel Curtis Johnson Graduate School of Management. Through her various roles, she’s been a critical part of marketing support for all schools within the Cornell SC Johnson College of Business. She’s a high-performer that sees every project through to the best of her ability. She’s a loyal Cornellian graduating from the Employee Degree Program in 2000 and serving the University for a total of 13 years.

She’s also a wonderful, giving mother of two active teenage boys. She’s been struggling to provide for her sons and often works two jobs just to keep the household bills under control.

In December 2016, Deb was diagnosed with Stage 3 colon cancer requiring a colon re-sectioning. She was also diagnosed with Lynch Syndrome, a genetic form of cancer for which there is no cure. There is an 80% chance Deb will develop a secondary cancer.

Pathology revealed that the cancer had spread to a lymph node requiring two forms of aggressive chemo during winter/spring 2017. The treatments created several side effects including severe neuropathy in her hands, feet, and throat. Oncologists made the decision to discontinue chemo after six treatments. Despite the toll these treatments took on Deb’s body, we were happy to see her return to our team as her normal self.

Deb experienced ongoing pain that went undiagnosed by physicians for almost four months. Four days after her September birthday, an MRI revealed that the colon cancer metastasized in a lymph node located in her pelvis resulting in a large mass resting on a bundle of nerves. To complete surgery at this point could possibly result in paralysis. Deb is now Stage 4 and facing another aggressive treatment that includes chemo and radiation five days a week for five weeks with the goal of shrinking the mass to allow for surgery.

When asked what her plan of action was, she responded that she’ll need to drive to the treatment center (approximately an hour and a half each way) daily. We said that was unacceptable, since she’d be too fatigued from treatments to safely drive.

As you can see, Deb’s optimistic, which is great. However, we feel daily travel will be too much for her. For that reason, and many more, we are creating this page, despite her best efforts to keep this information private and manage herself.

We’d like to raise enough money to pay for a modest room near her treatment center where she can rest from Monday to Friday for five weeks. Additional funds raised will be used to manage fuel oil bills, gasoline and vehicle maintenance, furnace repairs, meals for the boys, healthcare deductibles, and everyday expenses.
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Hi everyone. Thank you for your generosity thus far. Here's an update from Deb. Please consider helping.
Much appreciated,

August 30, 2018
The past few months have taught me that life with cancer is often an emotional rollercoaster filled with peaks and valleys. After receiving a favorable PET scan in April, the Tumor Board approved me for surgery. I was SO excited!! I want nothing more than this disease to be removed from my body.

My parents traveled from TN to attend my appointment with the colorectal surgeon on June 5. I was excited, nervous…a full range of emotions. As soon as the surgeon walked in, I knew this was not going to be a typical appointment. She explained that the Tumor Board approved a Total Pelvic Exenteration/Evisceration Surgery if scans in September showed consistent or improved results with the Keytruda. However, we soon learned surgery details that left me broken and loss. This is a radical surgery that removes everything in your pelvis - lymph nodes, reproductive organs, rectum, anus, portions of bowel, and possibly urethra and bladder. I will have a stoma, colostomy, and possibly catheter. Surgery lasts 10-13 hours with a handful of surgeons, a three week hospital stay if all goes well, high risk of bleeding out as well as infection, possible physical therapy, and a recovery period of six months to two years.

I had a major decision to make - place my faith in Keytruda, a relatively new drug for colon cancer, or a radical surgery that will change my life forever. We had a lengthy conversation with the surgeon to understand why everything in my pelvis had to be removed versus removing only the mass. She explained that they need to remove everything in my pelvis so the cancer had nothing to return to. However, there is no guarantee that the cancer would not metastasize in other organs prone to Lynch Syndrome (liver, kidney, brain, etc.).

Without a guarantee that this journey would be over following surgery, the decision became quantity versus quality. I researched the surgery and spoke with oncologists, family members, and fellow cancer patients. I made the decision to not pursue surgery. I don’t want to be a burden to my sons or family. Living a quality life after this surgery would be exceptionally challenging. I pray that I’ve made the right decision. Additional scans will be completed in September to see what the Keytruda has accomplished since April.

Meanwhile, I received a call from Cigna stating that they are reducing my pay by an additional 20%. This news is devastating. I expressed that the disability system is flawed, punishing those with illnesses while others abuse the system. I didn’t choose this disease. It chose me. Why am I being punished by reducing my ability to provide for my family and increasing stress levels at a vulnerable time?

The GoFundMe campaign has been extremely helpful but the funds won’t last forever. If only I could pay off the mortgage…it would be a huge relief but I know that isn’t feasible. Meanwhile, Cornell and my colleagues continue to be outstanding, helping in any way possible. I will forever be indebted to this remarkable institution.

Efforts to finish renovations on the house, in the most economically method possible, continue through the incredible assistance of friends that are graciously donating their time and skills. My goal is for the house to be sellable immediately upon my passing so that my family won’t have to deal with unfinished projects or struggle to pay estate expenses. If I am unable to address Cigna’s additional reduction in pay, it leaves me with only one option - to return to work full-time while enduring treatment and dealing with corresponding side effects.

Thank you to everyone that has walked this journey with me and supported me along the way. It seems we’re not done yet.
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Hi everyone,
I'm so happy to share this news I received from Deb with you:

"It has been an incredibly emotional week. Thank you to everyone that inquired about the PET scan results. I apologize for making you wait but it was worth it.

The PET scan showed that I am no longer glowing and that the masses are shrinking thanks to the Keytruda. This is great news. I have contacted the Colorectal Surgeon to see if the largest mass next to my sacrum is now operable. We won't know the answer until at least next Friday after my tests are shown to the Tumor Board at University of Rochester.

Being the planner, Type A person that I am, I peppered the oncologist with lots of questions that just can't be answered. I will never hear the blessed words, "You are cured." Sadly, that will never be in my future. He said planning beyond three months isn't possible with this type of cancer. That makes it all the more important to enjoy every single day God gives me.

Instead, I will remain on Keytruda for life. We will periodically complete scans to see if anything has changed. There is a chance the Keytruda could stop working or a different kind of cancer could develop due to the Lynch Syndrome. But there are lots of positives as well. Perhaps the Keytruda will keep my cancer in check forever. Maybe my immune system now knows how to battle the disease.

There is a good chance that my future will include times of remission alternated with times of treatment. There really is no way to know. Keytruda has only been on the market for a year with this type of cancer. Only time will tell. Our goal was to prolong my life for as long as possible. That goal is being achieved.

I continue to deal with extreme fatigue, rectal pain, headaches, weight gain, and other aches and pains. That will likely never change. But, if that means I can see my boys graduate from high school, maybe graduate from college, purchase their first homes, marry the love of their lives, and more...it is worth it.

We did have a bit of a scare after receiving good news that my blood work came back abnormal with a glucose level of 391 and alkaline phosphate of 240. Keytruda not only attacks cancer, it attacks healthy organs and tissue with sudden onset. I was terrified I was going to be a Type 1 diabetic for the rest of my life. Alkaline levels can indicate liver issues or bone cancer which terrified me even more. After hustling to have blood redrawn at Cayuga Medical Center, Rochester called to verify that my blood results were accidentally switched with someone else. What a terrible scare! Apparently, those levels are normal for the other patient.

Treatment #6 was yesterday so the fatigue is rather significant today but I didn't want my prayer warriors to wait any longer. I truly believe in the power of prayer. Thank you for all the prayers, thoughts, and caring words. It means a lot to me and my family. Love to you all."

Deb, Bryce, and David

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February 9, 2018
From Deb:
A heartfelt THANK YOU to everyone that has donated to the GoFundMe campaign. Friends, family, colleagues, former associates, community members, and strangers… my heart overflows with the generosity of those around me. I can never thank each and every one of you the way you deserve to be thanked. Please know how much the boys and I appreciate your act of kindness.
The past few months have been a journey. I completed oral chemo and radiation treatments on November 8, 2017. It seemed like the five days a week for five weeks would never end. I struggle immensely with chemo regardless if it is IV or oral. It absolutely tears my body up. Around the clock anti-nausea cocktails were required but I made it! Then we waited as the radiation continued to work for three months.
I was strongly encouraged to seek a second opinion from Memorial Sloan Kettering Cancer Center. I secured an appointment for December 15. My oldest sister, Michelle, made the trek with me after several kind individuals helped to secure seats on the Corning Inc. jet. We arrived the day before the appointment, paid a premium for a hotel (many thanks to the kind couple that covered the cost), and arrived at 8:30 a.m. for the appointment.
Without going into all the details, I can say it was the worst doctor’s visit I’ve ever had. All my hopes for a cure/treatment were placed in their hands and they failed miserably. After waiting hours, the oncologist finally speaks with me and says preferred treatment is: 1) surgery to remove the large mass in my pelvis, 2) Immune Therapy (Keytruda) if surgery isn’t an option, and 3) Clinical Trial for a different form of Immune Therapy if Keytruda doesn’t work. We then waited hours to see a surgeon. After six hours at the clinic, we ran to the shuttle pick-up location and left NYC no better off than when we arrived. I have never been so heartbroken, felt so insignificant. I was failed again by the medical system.
I continued my care at U of R and completed an MRI and PET scan, per the colorectal surgeon. The scans indicated that one small mass was gone, two were smaller, and the large mass shrank but not significantly. Surgery is NOT an option as the malignant lymph node is resting on the sacrum bone and creating an indentation in the bone. If the large mass is removed, they will also have to remove the sacrum. This is critical bone holds the vertebrae, hip bones, and pelvis together. The surgeon described it as a “horrific” surgery, one she refused to perform on me as it would not be a quality life. I would urinate and defecate in a bag and be unable to walk for the rest of my life. That is not an option. I refuse to be a burden on my family…more than I already am.
The decision was made to begin Immune Therapy (Keytruda) immediately as the large mass aggressively grows when not actively undergoing treatment. I’ve since completed two treatments via my medi port. We hit a speed bump last week when my medi port malfunctioned. Luckily, after four hours, the talented nurses at Interlakes Oncology were able to open the port for future use.
Keytruda infusions are every three weeks. After six months we will conduct another round of testing to see if the treatments are successful. If not, the only remaining options are chemo combinations or clinical trials that require me to be in NYC. I’ve expressed my continued refusal to future chemo treatments. I just don’t think I can survive that again.
January was a challenging month financially. County taxes, car repairs, medical expenses, and so much more have taken a significant toll on our finances. I am now on long-term disability. My Cornell colleagues/supervisors have been incredible. I could not ask for a better support group.
I do want to clarify that the boy’s dad, Dave, has been extremely supportive and providing for the boys. He is an outstanding father. However, I am no longer his responsibility and I cannot expect for him to provide for me as well. It’s important that people don’t think Dave is a “Deadbeat Dad.” Nothing could be further from the truth. I know if I lose this battle, my boys will be well cared for by their dad.
I promise to be timelier with my updates, as they become available. Meanwhile, I appreciate your generosity, prayers, and motivational words. This is a something I wouldn’t wish on my worst enemy and never thought would happen to me. I was wrong.
If you can find it in your hearts to share our GoFundMe campaign on your social media platforms, please do. Every little bit helps.
All our love,
Deb, Bryce, and David
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Thank you all for your continued support and well wishes. Please consider sharing this post to continue the momentum for Deb!
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$31,536 of $40,000 goal

Raised by 310 people in 12 months
Created September 25, 2017
Sandra Paniccia
on behalf of Deborah Stayer Kelly
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