Wednesday, June 17, 2009

Evan, my favorite St. Jude Dude

If it weren't for Evan, I probably wouldn't know much about childhood cancer. I might catch a St. Jude telethon on TV, or skim through an article in a magazine, but my life would pretty much be the same whether I knew much about childhood cancer or not. But now? I know a kid with cancer.

And he's an incredible kid. I love this video of Evan talking about St. Jude and singing one of the songs he wrote! Amazing, isn't he?

Evan's mother and I "go way back" ;) Back to the days when we wore our hair like this.
That's Melissa with the Cabbage Patch doll on her back (um, why, Mike??) and me in the center. See? My hair was so big it covered my whole face! Anyway...

We kept in touch after high school, and helped plan our 10 year reunion, but didn't get to see each other much other than that. Then, in 2006, she sent an email that just didn't even seem real. She was asking for prayers for her five-year-old son, because he had been diagnosed with cancer. I had the cliche'd "but this only happens to other people" moment. And realized what I already knew but had never had to really face: Kids get cancer, too.

Here's how Melissa tells Evan's story:
In the summer of 2006, Evan started showing early symptoms that something was wrong. He began to complain of pain in various areas of his body - his back, his legs, his arms, etc. He became very "crabby" and started sleeping a good deal. We ignored the symptoms at first, chalking them up to growing pains or attention seeking. Many times, the pains would conveniently come around the same time that we would ask him to do a chore or do something he didn't want to do. Throughout the summer, however, the pains became more consistent and worse. By mid-July, he was unable to get up from the floor without crawling over to furniture to pull himself up. He limped terribly and could not perform simple tasks. Alarmed, we visited our pediatrician.

After a blood test, they determined that he was severely anemic and was having muscle spasms. After several days of iron supplements and red meat, however, he did not seem to improve, but get worse. Fortunately, our pediatrician listened and scheduled scans at our local hospital. Immediately, during a bone scan, numerous tumors were found. By the end of the
evening, Evan had been diagnosed with stage IV neuroblastoma, a cancer of the peripheral nervous system. Although this cancer is fairly common, it accounts for 15% of deaths from childhood cancer. The survival rate for this type of cancer is low - 30% over 5 years. We went home, heartbroken, searching for treatments that would best benefit our son. After a full night of research, we felt that St. Jude Children's Research Hospital in Memphis, TN would provide Evan the best care and the most innovative treatments in hopes of saving his life. After a referral from our pediatrician, we were in Memphis and in the care of the wonderful doctors and nurses in less than 48 hours of diagnosis.

Evan entered into a protocol consisting of two rounds of a clinical trial drug, then on to more extensive chemotherapies. He lost his hair, lost a lot of weight, and spent countless nights in the hospital. Evan had a surgery in October of 2006 to remove the primary tumor located in the the abdomen, however, resection was unsuccessful. Evan's tumor encased vital arteries that would have been even more detrimental to his health. He underwent nine rounds of what we called "the tough stuff", as well as a stem cell harvest, in hopes to enter a stem cell transplant, using his own cleaned stem cells.

We never made it to transplant. After the chemotherapy portion of his protocol was complete, we discovered that Evan's cancer had not budged. It was ALL still there. So, we went on for three more rounds of extensive chemotherapy. Again, we discovered, the cancer had not budged, but changed. Many of the cells that were pulled from his bone marrow had
mutated to a benign form. This was encouraging, but doctors were not sure what to do with this information.

They did not feel that Evan would survive the disease, but because he was feeling well, they felt that a new clinical trial that had recently opened would be the best course of action. We began a new drug that would be administered once a week that was designed to kill the proteins that the cancer cells feed off of.

Two years later, we are still on the same drug. The drug does not make Evan sick. His hair has grown back, he has gained weight, grown taller, goes to school, participates in sports and other extracurricular activities and, except for a trip to St. Jude once a week for his doctor visit and chemotherapy, he is a normal, now eight year old boy.
It's incredible to see how much Evan has grown since his diagnosis. He has lived with cancer for THREE years. And we just pray for many, many, many, many more.

Don't forget to donate to St. Jude. Or run the 5k! Or go bald! Or all 3!

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