Trying to keep BeliEVAN

September is Childhood Cancer Awareness Month, and the little boy who brought me into the world of childhood cancer is fighting harder than ever to stay alive.

Everything Melissa posts breaks my heart into smaller and smaller pieces. Evan is "through with treatment," and he is home. His kidneys are starting to shut down. He is becoming less and less mobile and is feeling increased pain throughout his body. I've read similar words from other mothers, and the terrible truth is that they don't end well.

It's devastating. HE'S TEN. TEN YEARS OLD! He has battled this disease for HALF HIS LIFE. Melissa and Andy and the doctors and nurses have worked incredibly hard for five years to avoid--or at least postpone--what is happening now. But now it's really happening.

There have been times when it seemed Evan would beat the odds. In fact, just two months ago, Evan surpassed the five year mark. The survival rate for neuroblastoma is 30% over five years, and in my head, I always thought, "If Evan can just make it five years... c'mon, five years." Then what? Well, I don't know, but it had to be good, right? I know it defies logic, but still that five year mark was really significant. It had to mean that Evan could survive. Right?

When my husband Sandy and I visited Evan at St. Jude, I worried that I would have to fight back tears the entire time. But St. Jude is so bright and hopeful... I can't say that I forgot why I was there, but it certainly made me thankful that ST. JUDE IS THERE. It feels--I'm struggling to find the words here--like a party hospital. Laughter is good medicine, and so are hugs and toys and bright colors and art.

Evan walked us through the hallways proudly, introducing us to his doctors and nurses, freely giving hugs and high fives. As Evan sat getting his chemo, he played a video game, joked and sang for us. In the next room, a little girl received her LAST dose of chemo, and nurses and friends from around the floor surrounded her, threw confetti and celebrated her 'No Mo Chemo' day! I looked back at Evan, and for a moment I truly, honestly, believed--there in that hopeful place--that Evan would survive this. I had heard the statistics, and Melissa has never sugar-coated the slim survival rates. But still. I forgot about all that and just pictured this pretty blond haired boy as a grown up.


I can't wrap my head around this. I want the world to stop just long enough for me to figure out a way to fix this. To fix Evan so that he can celebrate No Mo Chemo, and his 11th birthday, and getting his drivers license, and his high school graduation, and his college fraternity bid, and the birth of his own child...

Evan has a little brother, Adam, who has never known life without Evan in it and probably doesn't remember Evan before cancer. And somehow he'll have to figure out how to manage. He will grieve in a way that we grown-ups can't understand. One day he will be older than his big brother ever was. That makes no sense!

None of it makes sense. Every day gets scarier, more fragile. Melissa has always said, "Keep BeliEVAN," and I'm trying, but where's that miracle??



That day at St. Jude, when Evan sang for us, I watched him and thought, 'This is an incredible kid. And I'll never hear this song the same way again.'

...I keep waitin', waitin'
waitin' on the world to change...