Ralph Knapp’s Story

 

By: Ralph Knapp, Co-founder KCC

My story began June 9, 2014, the day I was told I had cancer…..kidney cancer and that it had spread to my lungs. Wow…not me…I’m only 53!

The first appointment with a local surgeon, my wife Brenda and I were told I had 2 to 3 years, we left that appointment in shock, disbelief and tears. Within 2 weeks, thru divine intervention, I was a patient at Johns Hopkins and had my right kidney removed and a partial lung resection.

Three months later, September 2014 my story begins with my oncologist Dr. Hans Hammers, a kidney cancer specialist and researcher at Johns Hopkins. My first post op scan revealed two cancerous nodules in my lungs. I’ll never forget his words “Cancer is back” in his thick German accent. Once again, shock and sadness.

He then told us about a randomized trial that involved two immunotherapy drugs which had shown success in earlier clinical trials. After weighing my options, I decided to wait for the trial to open. After 5 agonizing months, I was randomized to the standard of care drug. After six weeks my tumors seemed to explode on this drug and he immediately put me on an off-label use drug.This drug halted my progression, but made me feel terrible.

While on this drug, I continued to research my next treatment option. I read a blog on Smart Patients about a new trial Dr. Hammers wanted to start at Johns Hopkins with the same immunotherapy drugs plus high dose radiation…but he needed funding!!

Can you imagine the excitement I felt, instead of getting two immunotherapy responses I’ll get three!

We learned Dr. Hammers had secured millions of drugs through BMS and was trying to get funding from various departments at JH. We let him know that if he needed us, we would help. On June 9, 2015 (1 year to the date of my diagnosis) Hans called and said he could use our help. Within a month, 103 of my friends, family and business associates came together and contributed $300,000 for the RADAX clinical trial for 25 advanced kidney cancer patients. An incredible act of kindness and love shown by everyone!!

My personal journey continues as I fight this cancer. I have come to realize my survival rate as well as 60,000 other newly diagnosed kidney cancer patients depends on cutting edge research. These efforts need funding!!!

After a thorough search for a private funding vehicle for kidney cancer research and hearing the direct appeal from not only Dr. Hammers but other researchers in the field, it was obvious there was a need for a national non-profit to fund kidney cancer research.  In July 2016, my wife and I co-founded Kidney Cancer Coalition.

This has become my hope and my passion to raise funds for research, clinical trials and find a cure for Kidney Cancer.

– Ralph Knapp

Merlinda Chelette’s Story

merlindaimageAugust 2012, I learned I had Stage IV Renal Cell Carcinoma (Kidney Cancer). For several months I had been experiencing low back pain.  Thinking that I had pulled a muscle while working as an ER Nurse, I ignored this pain.  Finally the pain became too intense and I sought medical care. A CT scan revealed I had a tumor in my right kidney with a metastatic lesion to my 2nd lumbar vertebrae. I immediately thought “Hey God, it’s me”.

As my husband and I drove home with the news of cancer, I looked at my wonderful husband of 24 years realizing all our dreams of growing old together had vanished. My future looked bleak and my dreams were shattered. When I asked my husband “what are we going to do?” He immediately responded “We are going to trust God. He will see us through. He has never left us nor forsaken us. He is the same yesterday and today and forever.” Amen.

God indeed has been faithful these last 4 years. He has seen me through two back surgeries, one kidney removal surgery and three rounds of high dose radiation.

When I came to UTSW to participate in a clinical trial, I met Dr. Brugarolas and a fellow kidney cancer patient, Tony. Both encouraged me to participate as a volunteer and be a member of the patient council. Through my volunteering at UTSW, I was able to meet other Stage IV kidney cancer patients. My eyes were opened to the fact that some patients do not respond to current therapies and die within 20 months. I suddenly realized that I was unusually blessed to be a 4 year survivor of Stage IV kidney cancer.

After the loss of a dear man in his thirties, I became energized with the desire to help raise funds and awareness for kidney cancer research. We are losing too many men, women and children to this dreadful disease. I ask you to join us!  Research Saves Lives!

“Alone we can do little but together we can do much!”

-Merlinda Chelette

Joe Bird’s Story

In 2014 my husband of almost 30 years began not feeling “like himself”. He had only missed two sick days in 28 years of working for the same company. After several months of back pain and losing weight, our GP sent Joe for a CT scan. On March 13, 2015, our GP revealed Joe had a softball size tumor on his left kidney. We were stunned, shocked and devastated.  After a dear friend made an appointment at UTSW, Joe and I began our journey with cancer. After having his kidney and a spine tumor removed, Joe’s weight went from 215 to 150 pounds. A spot was found on his brain which turned into 22 spots. Gamma-knife was performed and we were basically told to go home and say goodbye to our loved ones.

But Joe did not give up, he started gaining weight. He went hunting and fishing. We celebrated our anniversary in Galveston in September 2015!

In March 2016, an Immunotherapy drug (Nivolumab) became FDA approved for kidney cancer. Joe began infusions of Nivolumab and   commuting every two weeks to UTSW in Dallas. While turkey hunting with friends in April 2016, Joe developed a severe headache and was rushed (after killing his turkey) to UTSW. A 45 mm brain tumor was removed. Since his brain surgery, we have taken trips to Austin, New Orleans and Galveston. LIFE IS GOOD!

Because of this Immunotherapy, Joe’s cancer is stable and MIRACULOUSLY six spots have disappeared. My husband’s journey has proven that even with Stage IV kidney cancer with a softball size tumor covering the left kidney, two layers in his back, adrenal glands, pancreas, abdominal lymph nodes, spinal cord and brain, IT CAN BE TREATED! IT CAN BE SURVIVED!

Joe is still hunting, fishing, and doing all of the things that make his life-well his life! We are BLESSED beyond measure!

-Anita Bird

 

 

 

Debbi Wells’s Story

I was initially introduced to Kidney Cancer in December 2010 when my mom was diagnosed with Stage IV RCC. I knew immediately that I wanted to help her fight it. My mom had been there for me my entire life, and I wanted to be there for her in return. I soon got involved in fundraising, as a way for me to not only help my mom with the fight but to also help myself with the nagging feeling of helplessness. My mom needed a cure, and the only way she was going to get one was if there were enough researchers out there looking for it. In February 2012 I ran the Austin Marathon and raised over $3,000.

As my mom continued her journey with Kidney Cancer at USTW, I learned of all the great work that Dr. Brugarolas was doing in his lab. My mom loved Dr. Brugarolas and trusted him completely. Over time, our whole family was on board, and we wanted to do what we could to further his research.

My mother died of kidney cancer on May 2, 2015. I will never forget that day, as it runs in slow motion through my brain almost daily. The disease also runs in my family. Since my mom passed, I have also lost an uncle to kidney cancer, and my aunt is currently fighting it. There is a chance that my siblings and I could one day have kidney cancer.

My mom wanted to be a part of the cure. She didn’t make it to see one in her lifetime, but I am hopeful that we will find one in mine. Until we find a cure, I will always be involved in fundraising for this cause that is so close to my heart.

-Cassidy Pearson