His mop of blond hair is gone for now, but his blue eyes and smile are unchanged. He’s glued to the TV, where he’s watching “The Greatest Showman” for perhaps the 50th time, pounding along with the music on his drums.
This is a good day for Charlie Lane. The 3-year-old is propped up on a pillow, his head resting against images of Superman and Batman on his favorite pillow case brought from home. Mickey Mouse is snuggled under one arm, Rocky from “Paw Patrol” under the other.
Charlie has the comforts of home around him – his toys, his books, his parents, Kate and Pat Lane – but he is not home. He is on the stem cell transplant unit at Riley Hospital for Children, where every day is a battle to get better.
He is seven months into a fight against medulloblastoma, the most common type of brain cancer found in children. Surgeons removed the biggest tumor in March; smaller tumors, including some on his spinal cord, have been zapped by chemotherapy.
What hasn’t been zapped is Charlie’s spirit. He grins shyly for the camera, while also telling his parents to turn up the volume on the TV because he’s missing his favorite songs.
Charlie is at Riley for the second of three autologous stem cell transplant treatments, following several months of chemo. In an autologous transplant, a person’s own blood-forming stem cells are collected and stored, then given back to the patient after treatment to kill the cancer. If all goes well, he’ll go home by mid-November, then return in early December for the last stem cell treatment.
His mom is praying for a family Christmas at home this year. “That would be a good present,” she said.
For now, she takes joy in watching her little boy pedal a trike through the halls of Riley, spurred on by physical therapist Jake Copeland, who popped in to see Charlie on a Monday morning.
Copeland saw Charlie in his weakest moments, in the days and weeks after brain surgery, when the toddler was listless and sad. But in time the two forged a bond over basketball and movies.
“It’s amazing to see how far he’s come and just to see him smile,” Kate Lane said while following her son down the hallway. “I’m just so proud of him. And it’s cool to see them work together now, compared to six months ago.”
As if on cue, Copeland yells out, “Let the trike races begin!”
Charlie’s little head bobs from right to left as he pedals the trike while his dad pushes from behind. They’re not setting any speed records, but Charlie is out of bed, he’s moving, and he’s smiling. That’s a big win.
Soon they’re off to the play room, when Charlie heads straight for the train set. He stands on his own to play, but after about 15 minutes he is tired. He reaches out to his mom, who encourages him to walk a few steps into her arms. Charlie plants his feet and refuses.
Mom takes a step forward, Charlie moves an inch, and just like that, he’s in her arms, burying his head in her chest.
“Mommy’s weak sometimes,” she says to no one in particular. To which Copeland replies, “Well, Mommy’s been through a lot too.”
The goal is to encourage kids to try to do as much as they can, he explained. “It’s a balance. If you set the precedent that as soon as he reaches out and says, ‘I’m tired, come get me,’ then you swoop in and grab him, that’s what he’s established will happen every time.”
It’s a hard lesson for parents who only want to comfort their child.
Caitlin Krater is another therapist who has worked with Charlie, but she plays to his musical side.
When the board-certified music therapist first met him after surgery, he was not able to speak or move on his own, but he was watching “The Greatest Showman” every day, she said. She began playing music that his mom said he would like, and little by little, he began moving, laughing and talking.
He continues to be motivated by music, Krater said. It has helped him achieve goals such as sitting up, standing and speaking, all through active music making, she said.
“He now sings loudly and dances in the bed. He actually has started taking over the session and will say things like ‘Ready everybody?’ or ‘Good job drumming, mom,’“ Crater said. “Kate and I joke that we need to get him a purple polo and he can join the music therapy team.”
A musician in the making perhaps? “Something special for sure,” Kate Lane said.
Since Charlie’s diagnosis, the Lane family, which also includes Charlie’s two older sisters, has been wrapped in the arms of a team of supporters called Charlie’s Angels.
This group of angels on Earth, many of whom know the Lanes through Immaculate Heart of Mary Catholic Church, have been at their side throughout the difficult journey, cooking meals, holding fundraisers, babysitting, whatever is needed.
Their faith, Kate Lane said, keeps them going on the hardest days, and on the good days, too.
What does a good day look like?
“Today is a great day,” she said. “When he gets out of bed and he wants to move and play and just be a kid and have that sense of normalcy. The best day is being home, but any day that he is feeling good and smiling is a good day.”
-- By Associate Senior Journalist Maureen Gilmer
Contact her at firstname.lastname@example.org or on Twitter: @MaureenCGilmer