Mom finds her 'why' in the too-short, precious life of her son

There was a time Lauren Shaffer hated running. Like, hated it, like “if you see me running, something is wrong.” She had the ironic t-shirt to prove it. She had the 0.0 sticker on her van, in sly reply to all those marathoners proudly touting their 26.2. Running? Yeah, no.

So what changed?

Well, there was the day the chaplain walked into the room and back out again, because the news had not yet been delivered. There were the seizures; there was the spread of Caleb's cancer. There was the summertime Christmas that didn’t happen. There was the birth that did.

There was so much in between. And then, there would be the pounding of her feet on the pavement, the beating of her heart, and thoughts of Caleb urging her on. Running has become their time together. And when she feels like stopping, Caleb seems to say: “C’mon, mom, I’ve been through a little bit worse than this. You can run another mile.”  

So she does.

Caleb's story

“Noise with dirt on it.” This is how Lauren and her husband, Jake, describe Caleb from the very start. He made a dramatic entrance six hours before Lauren’s scheduled C-section. He was crawling at 5 months, walking at 9 months, too young to understand danger, too go-go-go to care. “It really wasn't out of the ordinary for him to be just a mess,” said Lauren.

So on the long and tedious drive back to Virginia after visiting family in Memphis over Christmas 2015, when 2-year-old Caleb was not his usual hypermobile self during the bathroom stop, well, it was the middle of the night, and the kids were so over it. They thought Caleb wouldn’t walk, never that he couldn’t walk.

Still, in the following days, though walking, Caleb somehow didn’t seem right. His pediatrician agreed and suggested they take Caleb to the ER.

They wouldn’t return home for months. But they would go back to Memphis, this time as a patient family at St. Jude Children’s Research Hospital, referred there because Caleb had brain cancer.

Caleb underwent surgery to remove the brain tumor in Virginia. On intake at St. Jude, he had an MRI and a lumbar puncture that indicated medulloblastoma in his spinal fluid and up and down his spine. He was placed on high-dose chemotherapy, with frequent scans to monitor his progress. In Lauren’s recollection, and in her words, the scans went like this:

Scan one: We were holding steady. One part was a little bit worse, one part was a little bit better, but in all it was steady.

Scan two: He started lighting up all over his brain. It’s something called leptomeningeal spread, which is kind of like a sugar coating of tumors, tiny. Like if you imagine powdered sugar everywhere. This coating caused decreased absorption of cerebral spinal fluid, things like that.

Scan three: We were just kinda going downhill at this point, and we said, "All right, let's regroup." We added a different chemotherapy.

Scan four: I remember a couple days before this scan, or it might have been his third scan, his smile just looked weird to me. He was making some great progress with PT and speech and OT, and then he just stopped wanting to walk as much. And we attributed that to chemotherapy because it's terrible and it hurts, and he was 3 at the time, newly 3. His doctor said, "Let's move up the scan a little bit." And sure enough, the leptomeningeal spread was bad, and he had a little bit of tumor bed regrowth where it had been removed, and it was coming back in his spine, which was covered.

One night not long after, Lauren woke up to the sound of beeps, a sound she had become so acclimated to after so long in the hospital that she still doesn’t know how this time, it woke her. Caleb had thrown up, and was having a massive seizure. The metastasis was out of control.

Caleb’s care team believed he had six to eight weeks. Time for one more Christmas, albeit in June; time for one more family vacation, to make memories together. Six to eight weeks to wring every drop from each precious moment. But Caleb died three days later, on May 28, 2016. His funeral was held the day they would have left town.

“That’s why I say, Caleb came into the world on his own terms, and left the world on his own terms,” said Lauren. “He always had his own timeline in life. As much as you can make peace with it, we've had to; we don't have a choice.”  

Her 'why'

This is part of why Lauren runs too: to strive for a healthy body, because Caleb didn’t have a say in what ultimately happened to his.

That’s why, when her friend alerted her to the St. Jude IRONMAN® 70.3 event scheduled to take place in Memphis in October 2020, she felt 100% called to do it — as a personal challenge, a way to honor Caleb and a way to fundraise for the hospital that is still so dear to her family’s heart. Lauren and Jacob remain so dedicated to St. Jude, they named Caleb’s younger brother after the place.

“St. Jude is our home, and our family,” said Lauren. “They did everything possible to save Caleb. As much as St. Jude is doing and will continue to do, it's not all happy endings. I don't want to say my son died; I enjoy talking about Caleb's life. But the reality is that this is terrible, what happened. Here are some terrible pictures, here is a terrible word. My 3-year-old died.”

That’s what happens to one in five children diagnosed with cancer.

So Lauren threw herself into preparing for her first ever triathlon, for Caleb, and for the kids coming to St. Jude after him. She’d never done anything close to road cycling, and it terrified her. But when her friend offered her a used specimen dubbed Old Yeller, she mastered her fears and got on it, because Caleb never got a chance to learn to ride a bike. He never got to swim, other than in his little puddle jumpers at the YMCA. So she plunged into the deep end of the pool, in winter.

It was a great disappointment when the race was cancelled due to the COVID-19 pandemic. But, she decided, “I had been saying ‘this is my race, this is my race.’ I was saying mine so many times. It has nothing to do with me. Regardless of when and where it takes place, I feel I was being pointed by Caleb to do this race, and being encouraged by so many friends and family. It doesn't matter where it's held, I just feel that I need to do it. Life doesn't go, clearly, the way you plan it. You just gotta bend and dodge and weave.”

You’ve got to get on the bike, and keep peddling. You have to keep breathing, even when it hurts, and putting one foot in front of the other, remembering what a privilege, what a gift it is that you can.