I first met Emily at T.H.E. BRAIN TRUST’s original Birthday party. The organization was less than a year old. Emily was 12. She came to sing Happy Birthday with her singer-songwriter parents Valerie and Walter Crockett.

I’d known the Crocketts for years from their e-mails on our online brain tumor support group, although we’d never met. Valerie says, “We’re sure the BRAINTMR List helped keep Emily alive. We found out about treatments we would never have known existed otherwise.” 

At the party I told how T.H.E. BRAIN TRUST aims to serve people coping with brain disorders at each stage of the illness. I spoke about my own struggles with a brain tumor (difficulties seeing, hearing, thinking, walking, reading) and after the party, Emily gave me the biggest hug I’ve ever gotten from a 12-year-old. 

Now she’s 15 and has been living with an astrocytoma brain tumor for more than 9 years, which is both miraculous and dauntingly difficult for a teenager. She’s survived 7 brain surgeries and untold hours in treatment and clinics to fight this incurable brain tumor. 

I caught up with Emily the other day and had a great chat. She really enjoys talking on the phone now that she doesn’t get out much except to physical therapy, accupuncture and chiropractor appointments, to improve her stamina, sleep, headaches and low vision. 

 I asked what she thought about being a “survivor.” She said after a pause “I do think of myself as a survivor, although I’m not better or anything…” then she added playfully, “but I’m also not dead!” 

It’s not easy for a kid to have a brain tumor, and some people might think she is “lucky” to have lived for so long. Emily knows it’s taken much more than luck and that “being lucky” doesn’t make life easier. She recalled returning to a clinic she attended daily while in treatment. She really missed the friendly people there. A volunteer told her, “You won’t need us any more, you’ll get better and you’ll make new friends.” But outside the clinic Emily says realistically, “I’m not better… and it’s hard to make new friends. Most people in the world just don’t understand and they don’t treat you like a regular person.”

Well, there is one very special new friend that Emily has made. In 1998 The Marty Lyons Foundation arranged for Emily to meet her music idol Garth Brooks. “He’s amazing!” she exclaimed, still energized by the trip. “Sure, he was generous, but he was also so thoughtful.” Whenever they were in crowded, noisy locations he arranged to turn down the lights so Emily’s eyes wouldn’t hurt. Later, when she was resting with icepacks on her head, he said “You’re hurtin’ pretty bad, huh?” then he gave her something very special, his tour guitar! 

“How do you keep from getting down?” I asked her. “I play with my dogs… and I sing,” she replied. Emily has written and recorded a song called “One Special Day” about her visit with Garth Brooks. Listening to it is as good as getting a hug from Emily herself! It’s available on an album called Emily’s Angel  along with 11 other songs by Valerie and Walter Crockett, whose blue-grassy fanci-folk style warms the heart. You can get a copy for yourself by sending $15 postpaid to: The Crocketts at 32 Maple Tree Lane, Worcester, MA 01602 or through their website: www.vwcrockett.com 

I asked if she had learned anything about life from having a brain tumor. She said “Well, that’s like asking Garth’s kids what it’s like to have a famous father…they’ve always had one.” 

“Garth's the best hugger in the world,” Emily reports. And she ought to know, because it takes one to know one. 

Long live Emily and her hugs!

Read more about this special story at the Crockett's web site.

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