Honored Kid

Johan G. Lofas

Age 27
Johan G. Lofas Kid Photo


Portland, OR, US


Brain or spinal cord tumor

Date of Diagnosis

February 2002


In remission

Treated At

Doernbecher Children's Hospital Mattel Children's Hospital UCSF Benioff Children's Hospital

Change your kid's logo

My Story

Johan has been treated twice for a recurrent ependymoma in the left parietal lobe (in the motor strip). His tumor was discovered in August 2002 after he had 15 seizures in a 12-hour period. The 7-hour resection in October 2002 at UCLA was complete and the pathologist had a difficult time deciding the tumor type and grading. After four pathology readings (UCLA, OHSU, Johns-Hopkins, Mayo) we finally received two concurring reports - tanycytic ependymoma (a rare ependymoma variant). Because of the success of the resection and his age at the time (5), we chose not to have him undergo radiation. Chemotherapy was not an option as ependymomas are typically chemo-resistant tumors. A routine MRI in January 2004 revealed that the tumor was recurring adjacent to the resection bed. On January 15, Johan underwent a second 7-hour resection - again complete! - followed by six weeks of daily focal-beam radiation. Currently, there is a small lesion in Johan's corpus callosum which is growing, albeit slowly. Because the lesion is sitting on a major blood vessel, we have decided not to pursue biopsy until/unless it gets larger and easier to target. Fortunately, he is asymptomatic and doing really well!

The Childhood Cancer Ripple Effect

Help Give Kids a Lifetime

Infants, children, teens and young adults are depending on us to find cures for childhood cancers — and to give survivors long and healthy lives.

Support lifesaving childhood cancer research today.

Photo submission policy

Please read the photo submission policy and accept below.

By submitting a photograph of yourself on www.StBaldricks.org, you agree to the following terms and conditions for submission of your photograph:

We strongly encourage all users to submit a before and after photo, so that donors and fellow participants can easily recognize and relate to one another.

Any photo containing cartoons, comics, celebrities, nudity, pornography, sexually explicit images or any copyrighted image (unless you own the copyright) is not permitted. This is because photos of celebrities and cartoon or comic images are generally copyrighted by the owner.

Uploading images of other people without their permission is also prohibited.

This photo submission policy applies to StBaldricks.org users. The St. Baldrick’s Foundation reserves the right to review all photos and to remove any photo for any reason at our sole discretion. If you see a photo on StBaldricks.org that you believe does not conform to this policy, email to WebQuestions@StBaldricks.org