My 17 year old son with a Rare Brain Cancer

Something a parent never imagines that they will hear: "your child has a rare form of Brain Cancer..." hearing this after a months wait for testing results from the tumor removed.

It started when Mason was complaining of having headaches...that would not completely go away. It got better at times, but it came to the point where I had to take him to the hospital because he was telling me something was wrong. The hospital gave him the classic migraine cocktail and sent us home. A couple more days go by and Mason wants to go to the hospital again- insisting, saying that something is not right. So i demanded the hospital did something- not medicine- but look at his head, to see if something was wrong. They did a CT-scan, and the unimaginable results came back- he had a tumor in his brain. We were surprised because you never expect that in a healthy 17 year old. At that point they gave us an envelope with specific instructions to go straight to Akron Childrens Hospital. We spent the night and first thing the next morning they did a very detailed MRI- full scan with function so they could better understand exactly what was there in his brain. Within 24hrs we were in brain surgery, having this large tumor removed. 20 staples and 5 sleepless nights in the hospital, only to be told to wait for the biopsy results even longer. Our experience at Akron Childrens Hospital was best case scenario for the situation tho- having a great Neurologist and amazing team of specialists. So we waited- an entire month before we got the call. They explained that we needed to come to the hospital, Mason included to go over what they found. I was not prepared for what they would tell us....

PLEOMORPHIC XANTHOASTROCYTOMA! A very rare type of brain cancer with less than 100 cases a year! I held it all together up until that day. We came home, I waited until I could be alone and away from anyone, and I fell apart. As a mother- u never want your children to suffer, to be in pain, to go through anything remotely close to something like brain cancer.

The Treatment: 6-7 weeks of targeted laser radiation- proton therapy- every single day from Monday through Friday. And the treatments are in Cleveland at University Hospital Main Campus. It has been a struggle to say the least. Driving over an hour each way every day. The missing work to ensure he gets there every day. On top of the daily treatments, they also want us to check in at Akron Childrens in the Hemotology/Oncology department on a weekly basis to see how Masons feeling.

How is Mason feeling? He is taking everything all in stride- honestly he hasnt seemed to skip a beat. One side effect he is not fond of is the hair loss... and just this past week it became significantly worse. The entire back of his head is now without hair. Its hard to see for me- only because it just makes everything all more real.

We dont know what the future prognosis is just yet. Hoping that we do not have to go through anything like this again- the statistics show that this does have a favorable outcome. After treatment we are looking at an MRI every 6months at minimum. And we just hope that Mason gets to live a full and normal life.

Just hoping to get some support- thats desperately needed to help with this... And if you cant, then please share- or even a prayer :)