In early 2010 my youngest son, Jonathan, would get sick in the mornings. It was never consistent, never with a fever or any real reason. After many different doctor visits and many different diagnoses – all suggesting a sinus infection or gastrointestinal problem - we finally saw his regular physician. She ordered a MRI of his brain "just to be sure nothing changed" as he had been subject to migraines since he was 5 years old.

The headaches were unrelated and genetic. The MRI showed a mass on his brain stem in the fourth ventricle of the brain. We were informed to get to the Children’s Hospital of Philadelphia ASAP with no stops. After what seemed like hours and meeting with countless doctors, nurses, oncologists and surgeons, they decided to do a full body MRI the next day and surgery that coming Monday.

To any parent who has heard the words, “We found a mass in his brain, you need to get to the hospital now,” that is devastating enough, but when the surgeon comes in right before surgery and tells you all that can go wrong and what you can expect, it just puts the icing on the cake. He explained it could be an “a” “b” or “c” scenario. If scenario “a” or “b” occurred, he will do great, however scenario “c”, would not be so good and he felt that’s what it was.

After 5 hours of surgery he came out and said it went great and he felt he got everything which is key in this type of tumor since if one cell gets free it can become another tumor a week to 30 years from now.  The surgeon felt he was right and told us to wait for the pathology report in a day or two.

Pathology confirmed it was a grade 2 regular ependymoma. The next few days Jonathan had to relearn to walk and to do all his normal, simple tasks. Jonny was a candidate for Proton Therapy was just about to be available at Penn Medicine in Philadelphia. Proton Therapy, as explained by our doctors, is the same dose and type of radiation- just a much better beam and much less damaging to healthy cells. In six weeks of radiation he only lost three very small patches of hair at the sites where radiation beams were targeted. Jonathan also had two surgeries to correct his eye alignment which was thrown off during the tumor removal. Most of his friends at school had no idea what he was going on when we visited school on good days after treatment and today when people find out he is a brain cancer survivor they look at us funny and usually ask "Really? You would never know!" Not the most PC way of saying wow but I'll take it over what it could have been.

Our story with Alex's Lemonade Stand Foundation started three days after his last treatment of radiation. My very good friends told me their sister had a company golf outing to support ALSF and we should come out and hang out for the day. Needless to say they were understated in that description. When we arrived that morning, Jonathan was treated like a celebrity and met a few local celebs including Liz Scott, Alex’s mom.  Ten minutes into the opening ceremony we knew right then and there this is where we belong and needed to help in any way to finding a cure. Each year we attend the same outing so everyone can see Jonny grow up.  At the first outing we weren't sure we would get that luxury.

After 6 weeks of radiation followed by three months tutoring to catch up in school, Jonny went back to school with his grade. Just when you think he would want to move past the experience, he surprised me by going out to events and enjoying them.  He has spoken on occasion for Alex’s Lemonade Stand Foundation. We are now four years past diagnosis and so far he is doing great, fighting against a diagnosis with over a 70% recurrence rate and continuing to remain N.E.R.D., meaning no evidence of recurrent disease. He will continue MRI's once a year for the rest of his life to check for reoccurrence but every day that he is cancer free is a great day.

Information provided by David Nagrant, Jonathan’s Dad
Updated: April 2014