Joshua's Journey with Ependymoma

Joshua was diagnosed with a brain tumor called Ependymoma in Novemeber of 2003 when he was 4 years old.  He underwent surgery and radiation in hopes that the tumor wouldn't come back.  He went almost 6 years to the date before a new one was discovered during his routine MRI's.  He again had surgery and radiation.  Since then he's had two more tumors for a total of four in ten years.

This time around radiation is not an option.  Given his history the doctors are believing that he will get more and they will come more rapidlly.  We have been referred to a new doctor out of Tufts Floating Hospital for Children where his tumor is being gentically tested to determine targeted therapies for his particular tumor.

We've always been fortunate to be able to stay home during surgeries and treatments but he's progressed to a point where his doctors are referring us to others. I've began this fundraising campaign in hopes to raise funds for travel and treatment expenses and spread awareness to this rare brain tumor.

General Brain Tumor Facts

• Approximately 1 in 330 young people will be diagnosed with cancer before the age of 19.
• On average, 46 children and adolescents are diagnosed with cancer every day in the U.S.
• One in every four elementary schools has a child with cancer.
• Cancer is the leading cause of death by disease in children under the age of 15 in the United States.
• Cancer in childhood occurs in all ethnic groups, socioeconomic classes, and regions.
• Brain tumors are much more likely to occur in childhood than in adulthood.
• Every year, over 100,000 people in the U.S. will be diagnosed with a primary or metastatic brain tumor.
• Brain tumors are the most deadly of all the childhood cancers.
• Brain tumors can be malignant or benign and either case can be life-threatening.
• The effects of brain tumors can be devastating because they are located at the control center for thought, emotion, and movement. In many cases, brain tumor survivors live with physical and/or psychological disabilities.

Ependymoma Facts

• Since 1995, Dr. Nick Foreman, Pediatric Neuro-Oncologist, has diagnosed 55 patients with Ependymoma brain tumors at Children’s Hospital Colorado. Dr. Foreman diagnoses around 5-8 Ependymomas per year.
• Nationwide, there are about 120 childhood Ependymomas diagnosed per year, and about 80 for young adults (21 years +).
• Ependymomas account for approximately 7%-8% of all pediatric brain tumors.
• Ependymomas can be malignant or benign, but in either case, they are life-threatening.
• Ependymomas do not respond well to conventional cancer treatments like chemotherapy and radiation.
• Most Ependymomas occur in the first 5 years of life.
• An Ependymoma is considered to be cured if there is no relapse after 6 years have elapsed.
• Once an Ependymoma tumor recurs, it is over 90% certain the tumor will continue to come back until the patient dies from the tumor. (Tanner’s tumor has relapsed twice since his original diagnoses)
• There are only three institutions in North America that study and treat the Ependymoma specifically: Toronto Sick Kids Hospital in Toronto, Canada; St. Judes Hospital in Memphis, TN; and Children’s Hospital Colorado.

 Source: http://www.tannersfoundation.org/brain-tumor-information