Written By: Liz Lewis
Our story beings in August 1996. I saw the cutest boy across the room and over a period of a few weeks finally got him to ask me out on a date. On our very first date, I told him we would be married someday. He responded "I know". A few short months later, we were engaged, married a year later and welcomed our first child, Warren III, shortly thereafter and our two little girls followed, Jamison and Jennifer.
Ten years later, in July 2006, Warren started to fall asleep every night before 8pm. He was also losing some weight, but we didn't think anything of it. With 3 young kids at home, the youngest of which was only 12 months, being exhausted was pretty much expected. In August, Warren decided to go in for a check-up to our family doctor. No one really expected anything to be wrong as he was a healthy 42 yr old non-smoking male, who just had blood work, urine work, etc and was approved for life insurance in April. Our regular doctor wasn't there and we saw a new doctor - she was young and eager to help get to the bottom of the fatigue, but everyone agreed it was most likely fatherhood. The next day he received a call that his blood work came back with elevated levels (I can’t remember of what) and he should get a CT scan. Once again, we really didn't have a clue how serious that could be - figured it was routine when they couldn't find anything.
On August 31, 2006, we heard the news which will forever have changed our lives. Warren had a grapefruit sized tumor on his right kidney. Our family doctor said the prognosis was "excellent" and referred us to surgeon. The next day we saw a surgeon and he said "it's very worrisome and not good". There were questionable spots on his hip, spine and lungs. For the next 2 weeks he underwent a lot of tests, bone scans, MRI, another CT - to determine if it had spread, all anyone could tell was that it was HUGE but appeared to be contained, huge as in 14cm - his entire kidney was now a tumor. We fired the surgeon we were suppose to see based on his concern he wouldn’t be able to get all of the tumor out. With the help of other kidney cancer patients we met online, we were able to find a referral to the best urological surgeon in Kansas City. On Sept 14, 2006, he had the tumor removed, it had adhered itself to the liver and grown its own “immense” blood supply based on the surgeons report but appeared to be contained. A week later in receiving the pathology report, we found out it was much more aggressive than they thought. He was diagnosed with Stage 2 clear cell kidney cancer, Fuhrman grade 4 with sarcomatoid features. Based on the size of the tumor and its Fuhrman grade, we knew Warrens chances of recurrence were very high. Because of this, we looked into clinical trials; but, given our having 3 kids at home, we didn’t want one that would have significant side effects. We chose a trial that utilized the immune system to attack the kidney cancer cells which may have been lurking. This required us to drive every week for the next 6 months from Kansas City to St. Louis for an infusion of a drug called Rencarex, this trial drug was to basically put a bull’s-eye on the kidney cancer cells in the body and then Warrens own immune system would attack them. We do not know if he received the drug or placebo but for the next 2 1/2 years, Warren remained cancer free with a few scares along the way which turned out to be nothing. We hope the drug proves effective and that it helped delay the recurrence, which did happen later than anticipated.
On February 13, 2009, the doctors told us Warren had a "tree in bud" appearance on the lungs which was suspicious for RCC and two significantly enlarged lymph nodes. In the weeks that followed, he would have two biopsies with one confirming metastatic kidney cancer - lungs, lymph nodes and a spot on the pancreas which is unknown if RCC. We were very fortunate that our local doctor was a regional expert and a supporter of HDIL-2. Warren underwent a series of tests to confirm he was a good candidate and in April 2009 began an intense treatment of HDIL-2. He completed 8 doses the first week and 9 doses the second week. The first set of scans a month following treatment showed stability. He then went in for more HDIL2, weeks three and four. The following scans showed shrinkage. After HDIL-2 treatment weeks five and six, he was declared NED (No Evidence of Disease) which is what every cancer patient loves to hear. We have been so fortunate! The last two years, he has lived as a Stage 4 NED kidney cancer survivor. We live a lot of life, love on our three kids - now ages 5, 7 and 12; and we thank God for all of the wonderful blessings this cancer journey has brought into our lives - the people we have met, the stories we have heard, the kindness of strangers. We believe our faith has carried us through, that in all of this craziness our children are becoming more compassionate, empathetic people who will carry these traits with them throughout their life. So, while we would never wish this on anyone, we do feel very blessed for the perspective it has brought to our lives and the faith it has strengthened.
Thank you all for supporting each other,
Liz Warren
