The tiny body seemed consumed by tubes and wires and monitors.
Just one day prior, Stephanie and Cody Smith had learned the terrible truth about why their 18-month-old son, Charlie, had been so sick recently. He had neuroblastoma, a cancer that forms on the nerve endings. Scans revealed cancer was on his kidney, lungs, bone and lymph nodes.
To stem the aggressive cancer, his doctors immediately got to work, putting in catheters, taking bone marrow biopsies and preparing for the start of intense chemotherapy. Charlie lay in his hospital bed eating Cheetos Puffs, his favorite food, and sitting with his parents.
"It was hard when we got the news," Stephanie Smith said. "I tried to be calm and collected; I had to be strong for my baby. But it’s been hard."
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The past two months have come straight out of a nightmare for the Smith family. Since Charlie was diagnosed with Stage IV neuroblastoma in November, each day brings uncertainty.
The Franklin family has spent 49 of the last 60 days at Riley Hospital for Children at IU Health. Charlie has gone through rounds of chemotherapy, suffering through fevers, mouth sores, extreme fatigue and nausea that wracked his small body. His treatment will last over the next 18 months, and will include chemotherapy, stem cell transplants, blood transfusions, radiation and immunotherapy.
But despite everything they’ve been through, the Smiths remain resolute that Charlie will get better. They have relied on their faith, and an army of supporters who have stepped forward to help them in their worst time, to get them through.
"It was amazing to see so many people come up and love on us. It has taught us to be generous people; we’ve always thought we were generous people, but when you see the number of people who care for you and pray for you and support you, it’s really amazing," Stephanie Smith said.
The Smiths have partnered with Versiti Blood Center of Indiana to host a blood drive in Greenwood Saturday. The Cheering for Charlie event will be held from 6 a.m. to 2 p.m., to help increase blood supplies for patients such as Charlie who rely on transfusions to survive.
“Every two seconds, someone needs life-saving blood, whether they’re bravely battling disease like Charlie, undergoing surgery or are victims of trauma," said Duane Brodt, spokesman for Versiti. "People need people since blood can’t be manufactured."
For most of his life, Charlie was a happy-go-lucky toddler. He loved to smile and laugh, beaming joy. Where his 3-year-old brother Henry was more of a wild child, Stephanie Smith said, Charlie seemed to always be in a pleasant, good mood.
His parents described him as their "happy baby."
That’s what made his lethargy, lack of appetite and gradual decline in health so concerning.
"He was learning how to walk over the summer, and started getting sick," Stephanie Smith said. "We just thought it was a virus; we didn’t think of the worst."
Charlie developed a low-grade fever, wasn’t eating well and was falling asleep unexpectedly while playing with toys. He wasn’t acting like himself, Stephanie Smith said.
During a visit to his pediatrician, the doctor found a hard area on Charlie’s abdomen, and recommended doing some blood tests and taking an X-ray. Those tests only led to more questions — he had severe range anemia and elevated levels of platelets in his blood. But the doctor didn’t have any conclusive answers as to what was causing it.
Stephanie Smith, a nurse at Franciscan Health, started hearing warning bells in her mind. That, combined with a mother’s intuition, convinced her that they needed to take Charlie to Riley Hospital for Children. After 12 hours in the emergency room, and dozens of tests, doctors found a large tumor in Charlie’s abdomen.
"Sometimes, when kids are diagnosed with cancer, they can go home and be in and out of the hospital for treatment, but Charlie was really sick. The tumor was pushing on his kidney, damaging his kidney, so we had to stay in the hospital," Stephanie Smith said.
The pathology lab at Riley Hospital for Children confirmed the tumor was neuroblastoma. The cancer forms in immature nerve endings, often in the adrenal glands located near the kidneys and is most common in children age 5 and under, according to the American Cancer Society.
But the cancer is very rare; only about 800 new cases are diagnosed in the U.S. each year, according to the American Cancer Society.
Neuroblastomas grow and spread very rapidly, so treatment would have to be aggressive, doctors explained to the family. Charlie’s oncologist recommended starting with two rounds of focused chemotherapy, followed by the extraction of his red blood cells for stem cell transplants, then another three rounds of chemotherapy.
Two different stem cell transplants would be held about a month apart, and Charlie would start radiation treatment. Immunotherapy, which jolts the immune system into targeting and killing cancer cells, would be the final part of the regimen.
Almost immediately, Charlie started his chemotherapy.
"It grows so quickly, that we had to be aggressive. The beginning was pretty intense," Stephanie Smith said.
The treatment was hard on Charlie’s young body. He developed mouth sores and didn’t want to eat, and his nausea left him miserable. The Smith family essentially relocated to the hospital, staying with him constantly.
But at the same time, their friends and family, as well as complete strangers, stepped up to offer help. A meal train was set up to provide the family with food, and prayers came from all directions.
A GoFundMe page has raised more than $36,000 for the family. A community Facebook page has more than 5,000 members.
"We had a rally of people come around us," Stephanie Smith said. "We couldn’t have done it without all of the people who have come together."
Charlie has completed his first four rounds of chemotherapy, and on Jan. 20, he was able to return home with his family to wait for surgery to remove the tumor in his abdomen. That operation is tentatively going to be early to mid February.
In the meantime, the family has been soaking in the opportunity to be together somewhere besides the hospital. They have also been working to plan the blood drive being held on Saturday.
Charlie has relied on blood transfusions throughout his treatment, and a blood drive would be a way to raise awareness of the importance of those transfusions to cancer patients, Stephanie Smith said.
"Charlie received quite a few blood products, especially early on in his treatment. He had 12 transfusions in these 2 1/2 months. For his little body, that’s a lot," she said. "Being a nurse, I didn’t realize the number of cancer patients who need blood products. It’s so important. So this was a way to let people know that."
Stephanie Smith’s sister, Shelby Richards, knew people who had organized drives with their friends and helped the family get the Cheering for Charlie drive going.
The drive is a perfect opportunity to remind people that blood donations are vitally important, Brodt said. Versiti Blood Center of Indiana needs to collect at least 560 blood donations every day to support the need at its 80 hospital partners throughout the state, he said.
"So our ‘Cheering for Charlie’ will truly make a difference and help save lives," Brodt said.
For the Smith family, the drive is a way to give back for all the love they’ve been shown.
"It’s really cool for us to see how many people have signed up, and also be advocates for other people who need blood, to just get the word out there about how important it is," Stephanie Smith said. "It’s encouraging for us to see people come out to support Charlie and kids like him."
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Cheering for Charlie blood drive
What: A blood drive honoring Charlie Smith, an 18-month-old Franklin child diagnosed with neuroblastoma, a cancer of the nerve cells.
When: 6 a.m. to 2 p.m. Saturday
Where: Versiti Blood Center of Indiana, 8739 U.S. 31 S., Indianapolis
Who can donate: Generally, anyone in good health age 16 and up can donate. Make sure you do not have a cold, flu or sore throat at the time of donation.
How to schedule an appointment: Go to Versiti.org/Indiana
Information: Learn more about Charlie on the Cheering for Charlie! Facebook group page.
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