My name is Calecia, and I'm Logan's mom. About 3 1/2 years ago, Logan was given a diagnosis that no parent ever wants to hear. He had been having severe unexplainable headaches, and the MRI showed "a lesion". It turned out to be a brain tumor. We've been following up with a neuro-oncologist at Children's Hospital of Philadelphia (CHOP) ever since. At the time it was recommended that we monitor it with frequent MRI's every 3-6 months depending on the amount of growth in between scans. Needless to say, his tumor grew a small amount with every scan he had. In June a decision was made to intervene. His tumor is located just above his brain stem so the concern was that if they waited much longer it may start to cause irreversible deficits. Also due to it's location, they are unable to resect or completely remove the tumor. The risk is just too high. June 23rd he went through a rather painful biopsy and spent one night in the ICU at CHOP. We then waited 6 weeks for results, unsure of whether we were looking at chemo or radiation or both. After lengthy conversations with his oncologist and a radiation oncologist, the decision was made to start chemo. The course of treatment is roughly 58 weeks in total with MRI's occurring every 3 months throughout treatment to verify the tumor is not growing. The goal of chemo is not to shrink the tumor, but rather to stop the growth.
This diagnosis affected not only the remainder of his high school years, but also the remainder of his teenage years. The anxiety of wondering "is this going to be the day they say we have to do something" has taken a huge toll on him and our whole family. Logan will be receiving his weekly chemo infusions at our local hospital, but we are still looking at follow up trips to CHOP as well. Any help you can give would be greatly appreciated!