Monday, September 10, 2012

Go Gold: Jonathan

We met the Nagrant family at an Alex's Lemonade Stand Foundation family picnic a couple years ago. Jonathan, their hero, had completed treatment for an ependymoma. His treatment course was much like Lily's--a full tumor resection followed by proton radiation treatment.

Proton radiation is a relatively new treatment (past 15 years) for pediatric brain tumors. It highly focused radiation; the proton radiation beam does not scatter and damage healthy tissue. As a result it can be highly effective on solid tumors or tumor beds. But, if other tumors exist and are not radiated with the proton beam, then those tumors can and most likely will grow.

Since proton radiation is a new protocol, there are not yet mountains of data on outcomes and remission rates. But, it is a symbol of hope for children who are battling brain or other solid tumors: they can receive highly effective radiation treatment without the risk of permanent cognitive damage.

Jon experienced one of the most common early signs of a brain tumor: vomiting. Unfortunately, vomiting can be a symptom of many, many common and normal childhood illnesses. Diagnosis gets delayed. And all of us brain tumor parents live in fear of vomit: it could be a stomach bug or it could be cancer.

Jon also struggled with his own feelings of depression--a little seven year old boy forced into a world of darkness by a brain tumor.

Jon is now almost 3 years out from his initial diagnosis and a rock star.

Here is his story, as told by his father, David.

Jon's wishes at the Alex's Lemonade Stand Lemon Ball
In early 2010,  Jonny started throwing up in the morning; not often and not on a regular schedule. He would get ready for school, brush his teeth and then half way to school he would vomit.

He still wanted to go in but school would not allow him to attend.  After three weeks of trips to our doctor and a slew of misdiagnoses,  the doctor finally ordered a MRI of his brain since he had migraines since age five (unrelated).

The MRI showed a large mass in the posterior fossa, which is the back section of the brain, on his fourth ventricle. Jon was rushed to CHOP to be admitted. Three days later Jon had brain surgery, a gross total resection (which means the entire tumor was removed) and later pathology revealed that the tumor was an ependymoma.

After recovering from surgery and rehabilitation,  Jon had 30 rounds of proton therapy followed by rehabilitation therapy and tutors. Jon struggled through a period of acting like an empty shell, followed by severe depression and a scary bout of suicidal thoughts to which he had a plan mapped out.

Now, 2 1/2 years later, most people can't tell all he went through. Jon is back to school and friends, like he didn't skip a beat.

There are happy stories in cancer but the happiest would be a cure.

Go Gold and share Jon's story:

 Tweet: Go Gold for Sept. Read Jonathan's story about surviving #childhoodcancer #ependymoma #CCAM @trinitasyoga

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