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Anakin is a bubbly, outgoing, hopeful boy! He loves video games and playing with LEGOs, and he is a huge advocate for bullying in schools. He’s compassionate and speaks up for others and makes sure everyone knows they are loved. He’s a picky eater and prefers to hang out inside. During his surgeries, Anakin lost control of his right side. While he’s since gained it back, he went from being right-handed to left-handed, and thinks it’s so cool he was able to do that.
For nearly two years Anakin had random puking episodes. When it started happening more often, his mom, Brittany, took him to so many doctor appointments and emergency room visits with no answers that she thought she was going crazy. Even when Anakin saw a gastroenterologist, their scope revealed nothing. Instead, they suggested Anakin try an MRI.
Two long months passed before Anakin could receive his sedated MRI at 6 years old. In that time, Anakin’s condition grew worse: he went from being semi-active to being barely able to get out of bed. He began to lose his vision. He complained of headaches constantly and was throwing up regularly. He was clumsy and bumping into things. The back of his head hurt “so bad”. Finally, the day of his MRI came. Brittany was told it would be about 45 minutes, but 15 minutes in, someone in a white coat came to tell her something was wrong. On December 21, 2020, the MRI found a lime-sized tumor and cyst on the back of Anakin’s brain that required a nine-hour surgery. After a million questions, it was found that Anakin had pilocytic astrocytoma. The very next day he had the tumor removed, but this only marked the beginning of Anakin’s difficult experience.
Anakin focused on rehabilitating his motor functions and getting back to being a kid while having MRIs every three months. But unfortunately, Anakin’s tumor grew back after the surgery. His family was given the option of chemotherapy or another surgery, and seeing as Anakin had just turned 7, Brittany felt he could decide what his body could handle. With help from his family, Anakin chose chemotherapy. But he was going to enjoy his family vacation first!
When he returned from vacation in June of 2021, Anakin went full force into chemotherapy. But by August the tumor had grown and spread to twice its size. Anakin ended up having a second surgery on September 30, 2021 to remove the tumors, then an ETV. While he had reached remission, Anakin wasn’t done fighting complications from treatment.
The following March it was suspected that he had some scar tissue growing over some important fluid pathways, and so Anakin had yet another surgery to place an external drain to monitor any pressure changes. During this surgery his doctor also opened up the pathway for the fluid to flow freely. Anakin gave an immediate sigh of relief as his headaches went away. He and his family enjoyed 24 hours of wonderful readings with the hope that he could go home after.
He was doing so well that when the on-call doctor decided to remove his external drain, they thought he didn’t need sedation or pain relief. Unfortunately, that was not the case, and Anakin was in so much pain as they pulled the drain that he was screaming and thrashing – so much so that it caused an intraventricular hemorrhage. It took hours of Brittany trying to convince the doctors that he needed a CT scan before they saw it, and Anakin had to undergo an immediate surgery to place another external drain. After 22 days of drainage and being unable to handle any pressure in his brain, Anakin had a permanent shunt placed.
Anakin has had eight surgeries to correct issues from his shunt, and has to live a lifestyle different from a typical kid because of it. Brittany hopes that one day she will see her son get himself back, flourish, and become someone amazing as he grows. He deals with many difficulties from his cancer, such as a loss of coordination, loss of speech, handling emotions, and being behind in school which frustrates him. She hopes he will be free from all these horrible things and will never have to fight cancer again. They weren’t sure he’d make it to his 7th birthday, but now they've just celebrated his 10th, and she couldn’t be more grateful.
Anakin is Brittany’s hero because despite the troubles he has been facing he has never given up. “He watched as I lost my faith and just told me I wasn’t allowed to,” Brittany said. “He told me that ‘whatever happens, it’s God’s plan and we don’t know what his plan is, but it’s His plan’. So because of his strength and faith, I was able to pull myself together to be there for him and help him pull through. He truly is the strongest kid I know.”
“Cancer is a long, scary journey but the support you get from staff, foundations, and others is amazing,” shared Brittany. She wants families who may also be facing a childhood cancer diagnosis to know that they aren’t alone, and it’s okay to feel the things you’re feeling and to feel like you are never going to get through this. “We don’t know why things happen, but you are stronger than you believe. The journey is different for everyone but always keep your head up.”
It is frustrating to Brittany that there isn’t enough known about Anakin’s cancer, or that safer treatments just isn’t researched enough. Foundations like Alex’s Lemonade Stand Foundation mean a lot to Brittany because it brings hope that one day there will not only be answers, but a cure.
“I will kiss your booboos and make them all better and go away!” - Elizabeth, Anakin’s little sister
Information provided by Brittany C., Anakin’s mom
Updated February 2024
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