Infant born with cancer undergoes chemotherapy, amputation before 1st birthday

TUSCALOOSA, Ala. - If there’s any comfort for Grace Adkins, it’s that her infant son won’t remember the medical hardships he endured before his first birthday. 

Her 10-month-old son Luke was born with congenital spindle cell rhabdomyosarcoma, a rare cancer that affects the tissue. 

Luke’s cancer is currently in remission. Grace said she didn’t expect anything when her son was born on December 9, 2021. 

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"My pregnancy was perfect," she told FOX Television Stations. "We didn’t know anything was going on while I was carrying him."

But Grace said when her only child was born, his left arm was swollen.

"It was almost black. It looked really bad," she continued. 

Grace said she was told her son may have broken his arm during the birth canal which isn’t unheard of, she said. 

But after x-rays and other tests, Luke was transferred to UAB Hospital in Birmingham, Alabama, then to Children’s of Alabama Hospital. He was then diagnosed with cancer just days after being born. 

"I never thought that I needed to worry about my baby being born with cancer," Grace said. "I didn’t know that that happened. That’s just not something you think about."

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"We were just numb," she continued. 

Grace said she was reassured by doctors that she did nothing wrong during her pregnancy. Grace said she even resorted to genetic testing, and all of Luke’s genetic markings came back negative. 

Doctors proposed that Luke have his shoulder removed at just two weeks old followed by chemotherapy, but Grace said she couldn’t handle watching her infant have such a major surgery.

"We just didn’t want to cut our two-week-old baby’s arm off that high," she explained. 

Doctors then proposed chemotherapy followed by the surgical removal of his forearm and elbow at 3 months old. Luke underwent amputation and chemotherapy, which Grace said made her son fussy and caused him to vomit often. 

Grace said her son is now healthy and thriving. She documents his medical journey on Facebook. 

"When I look at him, I just see a happy, fat little baby," Grace said. "It’s unbelievable how good he is doing considering everything he’s been through."

As for Luke’s future, Grace said she’s not sure where to land on him getting a prosthetic arm. She said she will allow him to wear one while he’s young, and then when he’s older, he can decide whether to continue having it. 

"We want to expose him to prosthetics early, and then as he grows and gets older, we’ll let him make that decision," she continued. "A lot of people with limb loss don’t want to wear prosthetics."

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Grace said it’s a good thing her son is too young to remember his medical journey, and won’t have to adjust to having one fully functional arm. 

But the mother says she has words of hope and inspiration for other people going through limb loss. She said she was inspired not to limit Luke.

"He can do anything. He will be able to do anything. We will never treat him like he can’t, and he’ll be fine," she said. 

"Keeping a positive outlook, even when there just doesn’t seem to be anything positive about it, you just have to keep going," she continued. 

What is rhabdomyosarcoma?

There’s not a ton of information on rhabdomyosarcoma.

According to the National Cancer Institute, childhood rhabdomyosarcoma is a soft tissue malignant tumor. It is usually curable, with more than 70% of patients surviving 5 years after diagnosis.

Treatment sometimes involves chemotherapy and surgery. 

According to the American Cancer Society, about 10,470 children in the U.S. under the age of 15 will be diagnosed with cancer in 2022. Childhood cancer rates have been rising slightly for the past few decades.

Because of major treatment advances in recent decades, 85% of children with cancer now survive five years or more, according to the American Cancer Society.

This story was reported from Los Angeles.