When Mya was five, she was diagnosed with Non-Hodgkins Lymphoma. After two years of chemotherapy and radiation, she might have been considered cancer free. But before she could catch her breath, she was diagnosed with Acute Myeloid Leukemia (AML), just like me, caused from the chemotherapy she received for the first cancer, just like me. She quickly received a stem cell transplant from a donor, but within a few months, she relapsed. After receiving a custom made regimen to get her back into remission, she suffered multiple organ failure, causing the second transplant to be delayed. She finally received the second transplant from a different donor in October 2011. Everything was going well until she relapsed again last summer.
Mya returned to St. Jude Children's Research Hospital in Tennessee and received her third transplant, this time from her parents, last September 2012. Her struggle to remain in remission was surpassed by complications from the treatment -- again, multiple organ failure. Keeping a 24 hour vigil for months in the ICU with the medical staff, Mya's family did everything they could to bring a sense of normalcy and hope to Mya and to themselves. The day before Mya was scheduled to return to New Jersey via Medivac, she rallied one last time to share precious moments with her parents, and slipped away.I spoke with Mike and Kelly Terry over the phone just before Mya's last relapse to discuss the prospect of interviewing all three of them for a writing project. I was referred to them by friends, Matt and Jodi Savare (Matt is also a co-worker). Their son, one of triplets, was diagnosed with another form of leukemia (Acute Lymphocytic Leukemia, or ALL) when he was two and a half years old. I have been following Mya's story on her CaringBridge webpage, where Kelly kept everyone informed with moving and informative posts on Mya's journey. These posts were so important to me, I had to remind myself that I never actually met anyone in the family.
When I heard that Mya had taken flight, I was relieved for her, and devastated for Mike, Kelly and their son Michael, who was closer to his sister than siblings can ever be. The chances of a cure from AML get smaller with each relapse, so I can't say that it was a shock. But Mya's spirit was so strong.... It was as though the world wasn't quite ready for that much goodness and love. And yet, it was. As the Terrys write:
Some of [Mya's] legacy efforts include St. Jude spokesperson at TUMI General Managers Conference in Long Branch, NJ; modeling for Back to School edition of the Money Saver Magazine; featured hero of the Leukemia and Lymphoma Society Pennies for Patients spokesperson; and Team Lead for Relay For Life. Mya performed as a guest chef at Nicholas in Middletown NJ; Ragin Cajun in Belmar, NJ; Tommy’s Coal Fire Grill in Oakhurst, NJ and was a St. Jude Executive Chef Assistant at Thanks and Giving Campaign Editor’s Conference in New York, NY....
Mya enjoyed being part of the Girl Scout Troup 100, Swimming, Playing Soccer, all things technical like her Iphone, Ipad and movie creating, crafting, cooking, gardening and riding her bike. Mya received the Kohl’s Cares Awards: Store Winner and Regional Winner in 2012. Her philanthropic activities include: Mya’s Mommy Bags, Bone Marrow Swabbing Drives; annual Blood Donation Drives and the Mya Sent Me - Pay It Forward/Random Act of Kindness Movement. Mya aspired to attend culinary school and open a restaurant, to become an oncology nurse and a veterinary volunteer.
Perhaps the most amazing thing I learned the weekend that I attended the visitation and funeral (where I finally had a chance to meet Mike and Kelly), was that Mya published a book called "The Day I Got My NG Tube." Instead of writing a book on princesses or shopping or dolls, as you might expect of a ten year old, she wanted to help other kids who might be scared of getting a feeding tube.The outpouring of support, grief and the need to pay tribute by the New Jersey shore community was like nothing I've ever seen. I arrived at the funeral home ten minutes after the visitation started and had to stand behind at least 100 people to get in. More than 150 were still in line when I left -- a sea of purple for Mya. Most of the eulogies given at the funeral were given by children, telling us how Mya changed their young lives. It was heartbreaking and beautiful all at the same time. A few days before Mya's passing, I heard a song on the radio by The Script that could have been written with Mya in Mind:
"Hall Of Fame"
Yeah, you can be the greatest
You can be the best
You can be the King Kong banging on your chest
You could beat the world
You could beat the war
You could talk to God, go banging on his door
You can throw your hands up
You can beat the clock (yeah)
You can move a mountain
You can break rocks
You can be a master
Don't wait for luck
Dedicate yourself and you go and find yourself
Standing in the hall of fame (yeah)
And the world's gonna know your name (yeah)
'Cause you burn with the brightest flame (yeah)
And the world's gonna know your name (yeah)
And you'll be on the walls of the hall of fame
You can go the distance
You can run the mile
You can walk straight through hell with a smile
You could be the hero
You could get the gold
Breaking all the records they thought never could be broke
Yeah, do it for your people
Do it for your pride
How you ever gonna know if you never even try?
Do it for your country
Do it for your name
'Cause there's gonna be a day...
When you're standing in the hall of fame (yeah)
And the world's gonna know your name (yeah)
'Cause you burn with the brightest flame (yeah)
And the world's gonna know your name (yeah)
And you'll be on the walls of the hall of fame
Be a champion, be a champion, be a champion, be a champion
On the walls of the hall of fame....
The essence of Mya Terry is best summed up in the message with which Kelly signed most of her posts, "N.E.G.U.!," Never Ever Give Up! Mya never gave up. I'm not giving up. I've never met a cancer survivor who didn't fight like hell. Cancer may take some, but it's warriors like Mya who give the rest of us the strength to keep fighting.Stay tuned for more information on the foundation that will soon be set up "that will Pay It Forward to other research foundations, other smile foundations, other families, and other care centers" in Mya's honor. In the meantime, remember this little girl and be a champion.
Kathy
CANcer + HEALth = CAN HEAL
.bmp)
.JPG)
