This Week’s Rally for Good: How to Give a Little Boy the Best Year of His Life
Today marks the first in an ongoing series on Shine! presented by Rally.org, the crowdfunding site for social good. Rally will be exploring thousands of user stories to find and share with you their most inspiring examples of people helping people across the country and around the world.
Meet Sam Lee. He's a lot like other two-year-old boys. He loves tall buildings, sharks, safari animals, and dinosaurs. He lives in South Carolina where he rules the living room from his cardboard fort, that is, when he's not watching Curious George cartoons. But before his first birthday, Sam was diagnosed with Ollier disease, a rare skeletal disorder, and in late July, Sam's parents, Mike Lee and Erin Benson, found out that he has a diffuse intrinsic pontine glioma, a type of large, inoperable brain tumor that affects mostly children.
Ollier occurs in about one out of every 100,000 people. Patients have benign tumors-essentially overgrown masses of cartilage-in and around their bones that can lead to skeletal deformities. To correct orthopedic problems caused by the tumors, Sam has had three surgeries, including one that left him in a body cast for several weeks when he was one and a half years old.
In recent weeks Sam's parents noticed that he was laughing differently and not smiling as much as usual. When his eyes started looking unfocused, they rushed him to a neurologist on July 26. That same day the MRI results confirmed the growth of the tumor among the nerves of the brainstem, so it can't be surgically removed. Brainstem gliomas like Sam's affect about 200 to 300 children in the U.S. every year. Doctors have given Sam about a year to live.
And Sam's parents have more than his health to worry about: they just welcomed twin daughters Ada and Mae to their family on Tuesday, Aug. 6. The girls were born prematurely and are being monitored at the hospital. Ada is stronger and healthier, but Mae the younger twin was low on blood and required a blood transfusion, so she's recovering in neonatal intensive care.
Since Sam's diagnosis, Mike and Erin have set about planning a once-in-a-lifetime series of trips. Among other stops along the way, they want Sam to see New York City's skyscrapers, look at the whale sharks at the Georgia Aquarium, and dig into the sand pits at the Dinosaur Journey Museum in western Colorado.
After Eric Taubel, Mike's roommate during their undergraduate years at the University of Georgia, learned about Sam's terminal condition, he says he wanted to try to make the family's life a little easier.
"When I spoke to Mike, I said, 'I am happy to help with anything.'" said Eric. "The sense among our friends was, we wanted to provide something."
People often feel powerlessness and dumbstruck when they learn that a loved one has a serious illness. Friends and family don't immediately know what to say in such a difficult circumstance, but they know they can and should somehow help.
Eric didn't have the words to reassure Mike and Erin, but he wanted to alleviate some of the financial strain they were facing with Sam and his sisters' medical bills. So Eric created a crowdfunding campaign on Rally.org and contacted the couple's friends to spread the word that he was collecting donations to benefit Sam. He reached out to pals from their graduate-school program at the University of Minnesota and Mike's old debate-team friends from Georgia.
And then "I just sort of sat back as information exploded and went through the social-network channels," Eric said. The campaign has made Eric and old friends feel like they are helping in some small way.
Since Aug. 2 the campaign has raised more than $20,000.
Sam started radiation treatment and chemotherapy two weeks ago at the Medical University of South Carolina in Charleston. He's expected to continue his Monday-through-Friday hospital visits for a total of six weeks.
Tegen Oakman, Erin's old roommate at the University of Wisconsin, recently returned from visiting the family and said that Sam experiences dramatic swings in mood and energy, especially in the hours after his treatments.
"Sam is such a tough boy," Tegen said. "But he's having a hard time understanding what will make him feel better. He can't make up his mind. Like if he wants a glass of orange juice and you give it to him, he'll then start screaming that he doesn't want the juice."
For their little boy's whirlwind tour across the U.S., Mike has been compiling a list of museums, aquariums, and zoos that specialize in the animals Sam's interested in. He hopes that once Sam's radiation and chemotherapy end and his twin sisters return from the hospital, the family can get ready for a September departure.
Until then Mike and Erin are trying to find a rhythm to their days of taking Sam for his radiation treatments and checking in on Ada and Mae.
"There's always one more thing that needs to be done," Mike said. It's easier to keep going and do and do and do for your kids, and you don't have as much time to think about the larger circumstances and how bittersweet our family's situation is," between Sam's diagnosis and the birth of his sisters.
Even during the turmoil of his morning radiation treatments and afternoon recuperation at home, Sam has had a chance to meet Ada, the older twin, when Sam, little sis, and Daddy visited his mom in the maternity ward.
"He immediately gravitated towards Ada," Mike said. "He asked, 'I hold her?' We were worried because he's very territorial with Mommy, but he was really gentle with the baby, touching her face.
"And his eyes lit up when he was with her. What's tough about his symptoms is the lost facial affect: He can't smile really well until the size of his tumor is reduced. You can only tell he's really happy when he has that twinkle in his eye."
Mike and Erin have hosted a stream of family and friends who have come to Charleston to help them with grocery shopping, household chores, and whatever else they can. Mike still can't believe the support that people have given him and his family.
"It's heartening and staggering the outpouring of love and help that we've gotten from friends, family, old acquaintances, recent acquaintances, strangers. This will helps us make the best of the time we have left with Sam."
Follow the rest of Sam's story at rally.org/supportsamlee.