Cheers for Charlie keep getting louder

Patient Stories |

01/12/2021

Charliesmithwebmain

Fourteen months into his treatment for neuroblastoma, a 2-year-old Franklin boy is closing in on the home stretch.

By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

Ask 2-year-old Charlie Smith if there’s someone new in his Franklin home, and he’ll tell you straight up: “It’s Baby George Walter.”

Baby George Walter is Charlie’s baby brother, born to parents Cody and Stephanie Smith in late November and marking the third boy in the family. Now Charlie is sandwiched between older brother Henry, 4, and George Walter, 7 weeks.

The birth of baby boy George was a high point in a difficult year. As the coronavirus tightened its deadly grip on the country and the world, the Smith family continued navigating the grueling course of Charlie’s cancer treatment.

Charlie was diagnosed with neuroblastoma in November 2019. Just 16 months old then, his life since has been a whirlwind of chemo, radiation, stem cell transplant and now immunotherapy. He’s a regular at Riley Hospital for Children, where his faith-filled parents have spent long days and nights praying fervently for their son and his Riley team.

Supporting them from near and far has been their Facebook group Cheering for Charlie, with more than 6,300 fans.

We caught up with Charlie and his dad just before Christmas at Riley as they finished up another week of inpatient care while Charlie received immunotherapy. This was Round 4 of 6 in his immunotherapy regimen – the last big piece of his aggressive treatment, Cody said.

Usually, Stephanie is by Charlie’s side during these often difficult days in the hospital, but she is recovering at home after delivering George via C-section.

“THE DAYS RUN TOGETHER”

While a now 2½-year-old Charlie played with decorations for a tiny Christmas tree brought in by child life specialist Maddie Kinzel, his dad talked about their remarkable journey over the past year.

“The last year, all the days run together,” Cody said. “It seemed like we pretty much lived here. It’s like a family reunion every time we come back up here.”

One of the nice things about Riley, he said, especially on the fifth floor where patients with cancer and blood disorders are treated, is that the nurses get to know you really well.

“They’re here on the hard days and on the good days,” Cody said. “Charlie has a couple favorite nurses, and mommy and daddy have favorite nurses too.”

Cody, wearing a University of Notre Dame sweatshirt, said he doesn’t sleep well at night, so when Charlie is asleep, he sometimes steps out into the hall to talk with nurse Jake Harmon about Notre Dame football and music.

Cody didn’t go to Notre Dame – it’s the one school he applied to that did not accept him, he said ruefully. But he’s philosophical about that now.

“It was a blessing in disguise. If I had gone there, I wouldn’t have met my wife and had these kids.”

As Cody talks, Charlie gets restless, so his dad reaches down to pluck him out of his big-boy bed. He wanted a big bed instead of a crib because he likes his mom or dad to lie down with him when he sleeps.

“Does your tummy hurt? Do you want me to hold you?”

With that, Charlie snuggles his head into his dad’s shoulder contentedly and closes his eyes.

“He’s melting,” Cody says quietly.

The love between father and son positively radiates in this simple moment.

HOME FOR THE HOLIDAYS

Charlie is infatuated with his baby brother, his dad said, though he does an impression of George’s cry that tickles both mom and dad.

The young family looked forward to being home for the holidays.

“We’re gonna party like it’s not 2020,” Cody said with a laugh.

On Charlie’s wish list for Christmas was “Star Wars” gear. He and Henry love dressing up in character. On his good days, Charlie likes nothing more than pulling on his Darth Vader costume, belt, cap and mask and chasing his big brother around the house with a play sword.

“Being home does a lot for the soul after being in the hospital,” Cody said. “You lose a sense of time in the hospital. It’s hard to remember how long you’ve been here.”

COVID-19 has exacerbated that disconnect for many who are working from home, including himself, he said.

“It feels like the longest Monday of my life. That’s 2020; that’s what it feels like.”

But 2021 is a new year and it represents the home stretch of Charlie’s treatment. The toddler had clean scans last month. After his last treatment in February at home, he’ll have another round of scans, then another every three months for a year.

FINISH LINE IN SIGHT

Charlie and Cody returned to Riley this week for his last in-patient stay for treatment. The sixth and final round will be completed at home. They both have felt the love on each visit but none more so than this week. A poster signed and decorated by Riley staff greeted them when they arrived: Happy Last Treatment Charlie!

“We don’t know what the future holds, but we know who holds the future,” Cody wrote in a Facebook post after arriving at Riley armed with his faith, good humor and breakfast and lunch from Charlie’s favorite restaurant, Chick-Fil-A. “So close to the end of this treatment we can taste it!”

In a post-COVID world, the family hopes to have a big Cheering for Charlie bash to celebrate the community that came together to lift them up during Charlie’s battle. They would be thrilled to combine it with Charlie’s third birthday in June but understand that the timing might be too soon.

“People all over country and the world have sent cards, donations and said prayers,” Cody said. “It would be cool to get people together to celebrate this victory. We did something big, even with the odds stacked against us. A lot of people have been praying, and the staff here is phenomenal. It’s a long journey, but the finish line makes it all worth it.”

Cody and Stephanie have documented much of Charlie’s journey online, on video and in a journal. They want to remember not only their son’s fight but also the love and support they felt from their community.

“To see these people just bless us, doing the work of Christ, it’s really inspiring,” said Stephanie in an earlier interview. “It’s teaching us.”

Some day they will tell Charlie his own story, perhaps even turn it into a book, Cody said, as a way to help others.

“We want to be an encouragement to other families.”

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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