In early 2020, 7-year-old Pembroke Elementary School student Sylas Luxmore was diagnosed with Cell B Acute Lymphoblastic Leukemia, a cancer that attacks the blood and bones. Shortly after, he began his 3-year-long treatment.
Sylas’ treatment so far
Sylas’ mom Casey Carroll said that since his treatment began in early January, Sylas has gone through 50 IV chemotherapy infusion treatments, four rounds of steroids, 17 lumbar puncture procedures, three blood transfusions and three bone marrow biopsies.
The lumbar puncture is done to give chemotherapy directly into the cerebrospinal fluid so that it can reach Sylas’ central nervous system, preventing any cancer from reaching his brain.
“The past two months have been really hard for us,” Carroll said. “It was the most intense treatments and the highest doses of chemotherapy that he would ever receive and he got to where he didn’t even want to go anymore and he fought it. It was just really hard.
“It was pretty tough, but we’ve all stayed positive. We’ve gotten through the hardest part. That’s the good news.”
Now, Sylas has entered the “maintenance” phase of his treatment. He is able to stay home with his mother and sister and continue to take chemotherapy through daily pills.
The chemotherapy pills, Carroll said, are not as strong as the therapy Sylas received at Vanderbilt University Medical Center .
Sylas takes two and a half chemotherapy pills each day, equaling eight and a half pills a week. In total, Sylas has to take around 14 different pills a day.
Sylas also has to travel to Vanderbilt once every three months for a lumbar puncture procedure. He also travels back to Vanderbilt twice a month for routine check-ups to monitor his progress and IV chemotherapy infusions once a month.
That process will continue for 18 months until Sylas’ treatment end date of Mar. 10, 2021.
Sylas began to lose his hair around May, which, Carroll said, made it even more real to her.
“That meant he was a cancer kid,” Carroll said. “It was a new phase and it just got kind of emotional for me. It was hard.”
Sylas and his family continue to remain positive. His family, friends and even some of his classmates showed their support of Sylas by shaving their heads, which prompted Sylas himself to go ahead and have his mom shave his head.
At the beginning of his treatment Sylas could barely walk and required a walker to support himself. Now, he’s walking normally, dancing and singing often and even getting outside to ride his bike again.
“At the end of March, I want to say he started dancing and that’s when we took his walker away,” Carroll said. “In March he was only using the walker a little bit and then we did away with it and he only uses it sometimes.”
Looking forward, Sylas will continue on the maintenance portion of his treatment plan for the next year and a half, but Carroll said that it has been easier so far than the continuous and strenuous trips to Vanderbilt.
Community support amid the pandemic
Despite the ongoing coronavirus pandemic and the limitations the safety parameters around it bring, community support for Sylas has not dwindled.
“The community has actually not given up on us,” Carroll said. “I figured it would die down, but everybody has been so supportive.”
Towards the beginning of his treatment and prior to the pandemic, the community around Sylas donned t-shirts Carroll made and designed with “Team Sylas” on the front and “His fight is my fight” on the back.
Every week Sylas’ friends, families, classmates and Pembroke school staff would wear the shirts and post pictures of themselves wearing the shirts to show support for him.
The community has stepped up different ways since the beginning, even amid the pandemic.
In August, towards the end of Sylas’ hardest treatment wave, Pembroke Fire Chief Phillip Peterson rallied the fire department and Team Sylas to have a small parade in front of his home.
“He got to stand up in the window and watch and even though he was sick, he was so happy to see everybody,” Carroll said. “So, that was really nice.”
Prior to that Sylas’ friends and family held a “barbershop” for Sylas, in which people could bid money to be able to shave the head of someone they chose. That money was then donated to Carroll and Sylas to help with their journey.
Team Sylas also organized a Boston butts fundraiser in which people could order the butts and all proceeds would go to his family.
The Western Kentucky Regional Blood Center hosted a blood replacement drive for Sylas in early August, so people could donate blood to help provide for his transfusions.
Carrol said one of the most touching community outreach programs for Sylas has been the continuous letters he receives in the mail. Sylas has received letters with words of encouragement, things the writers like about Sylas or even just telling him random facts or what they may be eating for dinner that night.
“He loves it. Every day he walks to the mailbox to get outside and try and get the mail to get his cards,” Carroll said. “It gives him something to look forward to during the day.”
Carroll said she didn’t want to throw the letters away. So, she came up with the idea to post them up on a wall in Sylas’ room for him to look at at any time.
The community support for Sylas is not slowing down. On Sept. 27, Fowlen Sensing and Team Sylas are hosting a special event: Sylas’ Superheroes and Snow Cones in September.
The event allows community members to order capes and masks to raise money for Sylas. On Sept. 27, everyone can pick up their orders where Sensing and her family will be handing out orders as well as selling snow cones to raise additional money for Sylas.
“(Sensing) had called and said ‘I want to do this for you. I want to order super hero capes and see if Sylas wants to do that and we’ll serve snow cones in our yard and celebrate Sylas.’ She didn’t have to do that and I just thought that was awesome,” Carroll said. “And, we’re going to release balloons in the air in honor of September as it being childhood cancer awareness month.”
Carroll said that she wants to make everyone aware that Cell B Acute Lymphoblastic Leukemia is the most common childhood cancer, but it can be treated and fought.
Anyone interested in learning more about Sylas and his progress, you can follow his journey by joining the Team Sylas Facebook group.