Family Stories
Alex Johnson, A Tall Tale
As the MetLife Snoopy II blimp coasted over Frederick, MD, a few of Alex Johnson’s neighbors shaded their eyes and pointed to the blimp…was that Alex waving at them??
Fourteen-year-old Alex and his mom, Carolyn, rode in the blimp through a Believe In Tomorrow Hands On Flying Adventure, which happened to take place practically in their backyard! Not only was it a cool experience, but it also gave Alex bragging rights around Carolyn’s aunt – a retired Army General who, you name it, she’s done it! When she saw pictures of Co-pilot Alex, a few thousand feet in the air, she responded, “You’re one up on me, kid; I’ve never been in a blimp.”
Alex has another reason to brag – he recently surpassed his mom when he hit 5’11”, a pretty challenging thing when the average height in his family hovers around 6’. But these aren’t the only recent achievements for Alex – he’s a fighter (and a tall one at that).
In 2009, Alex began coming home from 6th grade completely exhausted; needing three to four naps to make it through the evening. Carolyn noticed that he could never fully regain his energy and appeared to be wasting away before her. When he began walking with a limp, she knew something was up.
Doctors were convinced he had Lyme’s Disease, even though tests repeatedly came back negative. Even after a three-month whirlwind of appointments with different specialists – neurologists, cardiologists, rheumatologists – still nobody had a cause for Alex’s symptoms.
With x-rays showing nothing unusual, Carolyn repeatedly requested an MRI, but was always told it would just show that Alex had a leg. Finally, after five grueling months, her persistence paid off. When Alex was unable to fully straighten his leg during an appointment with a pediatric orthopedist, he was sent off for an MRI. Carolyn returned to work that day, hoping for an answer.
But within a half hour, the pediatric orthopedist called with devastating news. She thought Alex might have Ewing’s Sarcoma, and that it had spread throughout his body. Carolyn rushed home to get Alex and they headed to Sinai Hospital in Baltimore, MD.
After further scans and testing, Alex was diagnosed with multi site, single system Langerhans cell histiocytosis (LCH). He had tumors in his head, ribs, pelvis, fibula, and femur, which caused the bone to fracture and led to Alex’s limp. He began chemotherapy in September 2009 and underwent several surgeries to remove some of the tumors.
Just before Alex finished treatment in the fall of 2010, Carolyn, Alex, and younger brother Andrew stayed at the Believe In Tomorrow House by the Sea – the kids’ first real experience at the beach. And BOY, were they excited!! Carolyn said, “I know it’s just Ocean City, but to them it was Australia!”
The Johnsons tried to pack in as much as they could during their stay – a visit to Jolly Roger’s, the OC Rocket, crabs at Hooper’s, mini golfing, and dinner out on the town! They also connected with other families at the facility and still keep in touch via Facebook. Even a year later, the boys still talk about the beach trip – a great memory for all.
Though the past few years were certainly challenging at times, they gave Alex a bit of an esteem boost, especially since he could do more pushups than ever before and grew a whopping three inches in just a few months! Although some of Alex’s tumors still exist, they are not a big concern unless they start to grow. Carolyn is cautiously optimistic about the future. “I keep reading about other families in remission, and I cannot wait until we get to that point,” she said.
So what was Alex’s biggest accomplishment in the midst of everything? Even though he started treatment at the beginning of 7th grade, including chemotherapy for 13 consecutive weeks followed by oral chemo and steroids, Alex had zero unexcused absences and earned straight A’s while taking all honors classes. Now that is one tall feat!