A Mother’s Perspective…
It seems fitting that our new website is launching in March. Five years ago in March Cassie was diagnosed with cancer, one year ago in March she moved on from here to heaven. That first year, the year everyone dreads including myself, was a sad one but we plowed forward with Cassie’s dream to help young adults with cancer. I was as prepared as every other protective mother who has a child with cancer could be. I’m not sure anything in life prepares you for what lies ahead.
In the beginning of her diagnosis it felt like I was living someone else’s bad dream. We had so much love and support with well-meaning friends (and some strangers) giving us advice. It seemed like everyone who knew anyone with cancer had a story to tell. The over whelming suggestion was “You’ve got to do research online.” At first, I protected myself from the Internet and all its information. Cassie’s cancer was one of the rare ones; in fact we were told she was the fourteenth diagnosed case in the world. A piece of knowledge that somehow made Cassie feel oddly special, and it honestly freaked me out. It meant little information was known about her cancer. When I was ready to WebMD this cancer into remission I was only finding facts about the common kidney cancer patient. There are several types of renal cell carcinoma but clear cell is the most common therefore plenty of trials were geared toward that type. It makes sense, let’s try to have the most effect on the biggest population of patients. Cassie, at 17 quickly fell into to the ever-growing abyss of cancer tweens. Too old for pediatric oncology and way too young for adult oncology we found ourselves being seen by both. Our hospital stays were in the pediatric ward of a suburban hospital. Cassie was a child at heart so she loved being a big sister to her roommates and playing in the beautiful pediatric gardens. The oncology appointments at the doctor’s office were the polar opposite. She was by far the youngest and appeared to be the healthiest person in the waiting room. It wasn’t long before the realization of cancer and all its horrors gave her panic attacks. We talked to her general oncologist about her emotional issues but he had no real advice; just a kind pat on the knee and a promise that she was strong and could beat this.
Cassie’s cancer quickly metastasized; it was time to find a group of doctors that specialize in urology oncology. By now I was a pro at Google Search and networking, both important in being the self-proclaimed CEO of Cassie’s cancer. The Internet became both friend and enemy. It was my way to evaluate hospital systems and determine who had oncology specialists in our field, the most trials and the best renal cancer treatment options. There are also many non-traditional options those were… interesting. We did seek the advice of a holistic doctor who did all sorts of blood, skin, hair and free radical testing. He concluded she was the healthiest sick person he’s seen in a long time. Well-intentioned folks sent me websites proclaiming of cures for cancer. Unfortunately for Cassie, my mind was a sponge and she was my guinea pig. Before forcing her to choke down any of the “cures” I always checked with her doctor. She was also mom; she understood my need to try everything to help my child. Cass usually went along with my Internet potions but she never liked them. I finally took my WebMD certificate off the wall and left things in the noble hands of God.
For me the Internet was (and still is) a valuable tool in research. I soon learned some of the research was difficult to internalize. When I first read the statistic, live expectancy of a renal cell patient with metastases’…18 months! Not my daughter, she’ll beat those odds. Cassie did beat the odds but more importantly she lived a full life in the time God gave her. Cassie beat cancer because she was able to set the disease aside for a bit with the help of peer support and get busy living. (That’s a tag line from First Descents young adult cancer camp.)
While the first year without Cassie was personally difficult I am very proud of the work our Board of Directors and many volunteers have done. We have brainstormed what we hope will help young adults with cancer and their loving support network find to be useful information. This website is about encouraging young adults to experience life while dealing with cancer, not the opposite. It was my personal connection with Cassie that gave me a special “mom’s eye view” of her dramatic transformation after she participated in cancer camps and made new friendships with those who related to her situation best. After camp Cassie’s fears changed…she was no longer afraid of dying from cancer, or living with cancer. She just wanted there to be more time in everyday so she could have more adventures. Now that’s living!
Cassie’s mom and CEO of her cancer