Christian: Embracing the “New Normal” Following His Brain Tumor Treatment
In 2015, at the age of 15, Christian was diagnosed with a Pineal Parenchymal Tumor of Intermediate Differentiation (PPTID), a very rare brain tumor. At the time he was only the sixth reported case since 2000. Like other families who receive the devastating news that their child has cancer, his family suddenly found themselves in a whirlwind of information, appointments, and heartbreaking discussions about the future.
“For six months our son went through treatment that consisted of chemotherapy, resection surgery and radiation. He gave up his normal teenage life to fight for his life. Words can't explain what it is like as a parent to watch your child go through cancer. You are helpless. As much as you want to trade places, you can't. You put on your brave face and dig deep for strength you didn't know you had,” said Christian’s mother Shanna.
Because of the rarity of Christian’s tumor, there weren't any case studies to turn to for prognosis. Doctors decided to treat it aggressively to attempt to get rid of the tumor.
His family didn’t know if he would have a normal life after treatment, but Christian faced it head-on with strength and courage. He didn’t let it get him down and took every opportunity to use his story to encourage anyone facing a tough time.
Christian’s family is grateful his story has a happy ending, something they know others with a pediatric brain tumor will not attain. He’s been able to achieve two things doctors weren’t sure he would ever be able to do—celebrate six years of being cancer-free and finish college.
“He continues to face each hurdle with determination and is learning not to let his battle with cancer define him but to remind him that if he can beat cancer, he can do anything.”
Even though Christian is currently cancer-free, it is still part of his family’s lives. There are daily reminders with physical and mental struggles, and he will continue to have follow-up visits for another 5-10 years. They struggle with “scanxiety” when MRIs are near, and tears are still shed. Christian still has everyday struggles including difficulties processing information, anxiety, and PTSD. His entire family is still fighting the aftermath every day and getting used to their “new normal.”
“Six years later, we are still trying to discern what things Christian deals with because of treatment. Some things are obvious, but others are not. He deals with short-term memory issues, processing issues, vision issues, and fatigue. There doesn't seem to be an answer to help with these because when you've had treatment in your brain, things are compromised and can't really be repaired. You have to figure out how to live with them.”
Shanna came across PBTF on Facebook shortly after Christian was diagnosed and she loved having an online space where it is clear their family isn’t alone. In addition to the online community at PBTF, Christian’s family came in contact with six other families who have children that have received a PPTID diagnosis. They all were able to compare notes and come together to bring more awareness to this rare type of brain tumor.
If your child has been diagnosed with a brain tumor, PBTF offers opportunities year-round to meet other families, survivors, and supporters. Join our email list to stay up-to-date about PBTF resources and events in your community: www.curethekids.org/stay-connected. If you know a family that needs help, tell them about PBTF. We’re always here to help.