Henry's Blog

Friday, November 28, 2008

Thanksgiving 2008

Henry with Dr. Merchant at St. Jude in 2007

While at St. Jude in March of 2007, we met another family fighting a battle similar to our own. They introduced us to an online support group specifically for families dealing with ependymoma. Called Ependyparents, it offers support, answers to questions, and provides a clearing house where parents can learn about and compare various treatments, physicians and clinics.

In mid November, a family wrote on Ependyparents about their six year old son. He had successful surgery and radiation at St. Jude in 2004, and was there now for a four-year follow up exam and MRI. They were very excited to announce that they had been filmed at St. Jude for the TODAY show. It was to be shown on Thanksgiving day and would feature the story of the young survivor to highlight the successes of programs at St. Jude. The segment would also include a rare interview with Dr. Thomas Merchant, the head of Radiology, who also supervised Henry's treatment. Henry and Dr. Merchant are shown together in the photo above.

Two days after excitedly announcing the TODAY show appearance, the young boy's family got the shocking news that after four years of clean MRIs and exams, there was new tumor growth. Horrified, they called the show and asked them to cancel the segment.

For the next week, fellow Ependyparents offered support and gently urged the family to allow the segment to air. After some soul-searching (and realizing that the young patient wanted it to be shown), they asked that the segment be allowed to run, and it did. You can view it here.

After the airing, St. Jude spokesperson Marlo Thomas expresses disappointment that the young boy could not appear at the studio in person because he had suffered a "little setback."

That "little setback" was a recurrence requiring brain surgery the day before Thanksgiving, a setback that means a new dark chapter in this family's life.

There will be little rest for them in the foreseeable future.

A Thankgiving wish to this heart-filled family: the future we all deserve.