Life in this fallen world can be joyful and heartbreaking, messy and miraculous. And of course life and death are part of the journey. Everyone not in either infancy or dementia understands the fact that death is inevitable.
However, understanding the surety of death does not mean we welcome it one minute sooner than we absolutely have to. We’re created for life and yearn for life. And every now and then we hear a story that makes us count our blessings and, yes, even feel ashamed of our moments of self-pity.
Enter the story of Shawn, the youngest of five children, son of Dale and Kim Benson.
Shawn was a healthy fifth grade boy, only a couple months shy of his eleventh birthday, when some troubling symptoms manifested: he began having headaches, fatigue, and then vomiting in the mornings. His parents knew something was amiss, but thought perhaps an intestinal ailment rather than some nefarious illness.
His mom, Kim, took him the doctor, who recommended a CT scan of Shawn’s head. Kim and her husband, Dale, were puzzled. Why a scan of his head when it appeared his problem was in the digestive system?
But they followed orders and Kim took him to St. Luke’s Hospital for the CT scan on a Sunday. The scan revealed a tumor in the brain, the severity of which was made clear when they immediately transferred Shawn via ambulance to Texas Children’s Hospital in Houston.
Mom Kim rode with Shawn to TCH, watching as the medical team worked at an alarming pace. Shawn underwent an MRI 2AM. Kim was texting Dale and the family with the play-by-play.
I can’t imagine how Kim felt watching her youngest son undergo these tests confirming the worst fears any parent could ever have. And Dale? He was manning the homefront with the other kids, most likely feeling helpless to do much but wait.
Talking to Dale, he thinks the world of Kim and laughingly says, “She’s a tough broad.” Though not a native Texan, Kim seems imbued with that strong, Lone Star steel resolve, and she would need that strength for the journey her son was about to embark upon.
After the 2AM MRI, Shawn was kept at Texas Children’s Hospital and prepped for surgery on Tuesday. Kim, Dale and the kids waited while Shawn underwent a nine hour surgery.
The tumor, a medulloblastoma, which was about the size of a peach, was located in the cerebellum:
The cerebellum receives information from the sensory systems, the spinal cord, and other parts of the brain and then regulates motor movements. The cerebellum coordinates voluntary movements such as posture, balance, coordination, and speech, resulting in smooth and balanced muscular activity. It is also important for learning motor behaviors.
A medulloblastoma is described at the American Brain Tumor Association:
Medulloblastoma is always located in the cerebellum—the lower, rear portion of the brain. It is unusual for medulloblastomas to spread outside the brain and spinal cord.
Medulloblastoma is a fast-growing, high-grade tumor. It is the most common of the embryonal tumors—tumors that arise from “emybryonal” or “immature” cells at the earliest stage of their development.
Medulloblastoma is relatively rare, accounting for less than 2% of all primary brain tumors and 18% of all pediatric brain tumors.
One can only imagine the finely-honed skill necessary to perform such surgery: thank God for such gifted surgeons and medical teams.
At one point, driving the other four kids to the hospital (three boys and one girl), Dale brought the rambunctious siblings to attention with a question, “You do realize that Shawn is undergoing brain surgery? One even slightly wrong move and you no longer have a little brother?”
Nine long, gut-wrenching hours later, Shawn was taken to the recovery room and when he finally awakened, he couldn’t see. A while later he could see, but had double vision. Dale made a trip to a costume store to buy a pirate’s eye patch for Shawn to wear at first until that double vision subsided.
Shawn spent eight days at Texas Children’s Hospital, then underwent 6 weeks of radiation — proton therapy — at MD Anderson Hospital. Proton therapy, unlike the old radiation that zapped a large area surrounding a primary cancer site, is able to focus a beam on the exact site the doctors map out.
Four months of high-dose chemotherapy followed the proton radiation.
That whirlwind of medical treatment began in November of 2013, and finished in May of 2014. Shawn, his parents, the doctors…everyone was optimistic that the cancer was gone, eradicated.
But by November of 2014 MRI’s revealed the cancer was back, and in new spots. By March of 2015, Shawn began twelve fierce rounds of chemo over the course of two months, after which the family was once again optimistic. Shawn was gaining weight and feeling good.
Until recently. Just in the last week an MRI revealed the cancer is back, and worse than ever.
Think about it: this kid has endured the surgery and radiation and rounds of chemo which caused extreme sickness as soon as the drip started. He’s lost his hair and been “homebound” for schooling, visited by teachers 4 days a week and doing coursework on the computer. He’s missed the 5th, 6th and 7th grades in the classroom — and now may possibly miss the 8th grade.
Dale has a home office with a server that allows him to do all of his work from home. Kim is a teacher and will now, thank goodness, be home with Shawn all summer.
Talking to Dale he was quick to praise the staff at the Texas Children’s Hospital, “The doctors are outstanding and the nurses even better. You don’t want for anything. They are literally the tops in the field.”
Asking how Shawn has taken this all his dad’s voice breaks up as he replies, “That kid has been through all this.. .and he has never complained.”
I had to stop typing briefly to wipe my eyes. I count this family as friends, and have just fallen in love with Shawn. He is a sweet kid who’s always smiling. Always.
The future is no sure thing, but the Benson family is facing it together with love and determination.
Kim has started a GoFundMe page for Shawn and I would love to see thousands visit and, if you’re able, to donate. But equally important, even if you can only spare a few bucks, write something encouraging. Promise to pray for Shawn and the family.
Consider that, though Shawn has medical insurance that is fairly good through Kim’s teaching position, with the advent of Obamacare, the insurance pays less every year and the copay and deductible is more. So much so that the MRI’s, tests, and treatments are virtually prohibitive. Thank-you very much Mr. Obama.
But Shawn, the brave kid is, as Dale describes, “…even keel. He knows what he has to do and does it.”
I’m praying that Shawn will win the battle and have many years to watch his beloved Blackhawks and NASCAR.
Years with his mom and dad, Kim and Dale, making memories.
And I’m praying that this story might cause all of us to not only pray for that tough Texas kid, but also count our many blessings. I don’t know about you, but I think Shawn is a hero and an inspiration.