Making every precious moment count

Whether Phenix is army crawling across the floor, taking his first steps or exploring the world in his walker, his parents can always count on his contagious smile and spirited personality to light up their world.

“He is a ball of sunshine, he is always happy,” his mom, Amber, said. “That is how we figure out if something is wrong with him, but he is always smiling. There is not one time that my son is not excited. It doesn’t even matter if it’s 2, 3, 4 o’clock in the morning. He’s excited, he’s happy.”  

Phenix’s radiant smile and boundless energy, coupled with rare tears, also charms his grandparents, his older brothers and sisters and most strangers he meets. 

“He steals every single heart he comes across,” his mom added. 

His smile has continued to shine brightly most days even after his brain tumor diagnosis and treatment.

At just 5 months old in September 2024, Phenix, the youngest of five, suffered seizures while his paternal grandparents babysat him. His grandmother, Nola, who is known as “Mimi,” recalled that evening in detail. She had just fed Phenix his bottle, changed his diaper and handed him over to her husband, Sebastian. A few moments later, she called out to Phenix, but he did not look at her.  

“His head was turned to the side, and when I called him, he didn’t move. It was not like him because he is always smiling,” she said. “When I called him again, next thing I know his head went back, like he wanted to pass out. He wasn’t responding to anything.” 

She immediately dialed 911.  

When the first responders arrived, Phenix was back to himself.

“A smiling baby,” she recalled.  

The first responders examined Phenix. He showed no signs of the seizure, his grandmother said, and they left. As emergency responders drove away and turned the corner, Phenix had another seizure. Nola dialed 911, again.

Some of the first responders who had just left came back. This time, they saw the seizure in progress. They took Phenix to a local emergency room in Michigan where he and his family live.  

At the hospital, Phenix had more seizures. Scans showed a solid and cystic mass in his brain, Amber said. When emergency room doctors explained to his parents, Amber and DeVonte, what they saw in the scans, Amber said it was the worst moment of her life. 

“I walked outside and cried, screamed and talked to God,” Amber said. “I thought whatever I had to learn, whatever humbling lesson I needed to learn, please don’t let it be through my babies.” 

A few days later, Phenix underwent surgery to remove as much of the large mass as possible. The mass, she said, was located around the middle cerebral artery in his brain, which made total resection of the tumor too dangerous due to the risk of hemorrhage. Following the surgery to remove the tumor, Phenix was diagnosed with infant-type hemispheric high-grade glioma (IHG), a rare and fast-growing, high-grade brain tumor that primarily affects children under the age of one. IHG is recognized by its molecular differences from other subtypes of high-grade glioma, and infants with IHG have a better survival rate than other high-grade gliomas. Infant-type gliomas respond well to treatment, unlike many high-grade gliomas that have poor prognosis.

A few weeks later, he was referred to St. Jude Children’s Research Hospital® in Memphis, Tennessee.  

St. Jude provides the highest quality of care for patients with IHG, by bringing together medical experts and specially trained staff to care for such a rare patient population who are incredibly young and fragile. Doctors at St. Jude have extensive experience in treating this rare tumor type.  

 “When we got to St. Jude, there were more answers here. It was a lot to go through as far as him being a baby, but it was still a lot less complicated than what it could have been,” Amber recalled. “They take care of you.” 

Amber’s mom, Gloria, packed her bags too, feeling she needed to be there for her grandson and daughter.

“I had heard about St. Jude, but you really don’t understand what it is until you get there,” she said. “When we first got there, I went to all the appointments, and I saw how the doctors and nurses communicated with Amber. They made it easier.”  

Phenix began chemotherapy at St. Jude.

As he received treatment, Phenix’s parents, grandparents and siblings cherished every milestone reached along the way, especially during his first year of life. It was at St. Jude where Amber was able to record her baby say his first word, “mama.”  Amber said she had heard him say it before, but it was at St. Jude, as Phenix lay in his crib, that she was able to capture it on her phone for all to witness.  

It was at St. Jude where Phenix also spent his first Halloween. His mom, a nail artist and do-it-yourself enthusiast, figured out how to make him a scuba diving costume. As her son lay in his crib, she spent hours lovingly designing the outfit using everyday items such as an empty water bottle to mimic an oxygen tank.

Phenix also spent his first Thanksgiving, Christmas and New Year’s Day at St. Jude. His grandparents, Nola and Sebastian, flew to Memphis to be with Phenix and his parents both on Thanksgiving and Christmas. Nola and Sebastian recalled that Amber cooked a traditional Thanksgiving meal with all the trimmings. Before they ate, they gave thanks for Phenix and prayed for his health and his caregivers. 

“I continue to pray for St. Jude and their team and their staff. They treat you like you are part of the family,” Sebastian said. “It’s so amazing the things that they do. I’ve never experienced something like that. Thank God for St. Jude and the care they provide for the children.”

A few days before Christmas, Phenix had brain surgery, between rounds of chemotherapy to attempt to reduce the residual tumor.  Amber and DeVante, as well as Phenix’s grandparents, tried to make it as special as possible. The family wore matching pajamas and took family photos. They again were thankful that their little boy had bounced back quickly after his surgery.  

“We got him some gifts,” Amber recalled. “We spent time with one another even though we were missing out on the rest of our children and the family members we usually spend it with.” 

At St. Jude, Phenix also attended physical and occupational therapy sessions. With each session, he swiftly grasped new movements and techniques, his mom proudly states.  

“He plays with toys, and they are working on his motor skills, grabbing toys, sitting up and working on standing up,” she said. “They are making sure he is meeting all his developmental milestones that he’s supposed to depending on his age.”

Phenix finished chemotherapy treatment in March of 2025 and went home the following month. He returns to St. Jude for regular checkups.  

His first birthday was among the first celebrations his family marked when they returned home. It was a day full of joy.  

 “St. Jude means a chance at life for my son, a much longer time with my son,” Amber said. “His birthday is a celebration of life.”