10 years ago… 9/29/98

12 hours after we'd prayerfully handed him over

Tuesday, September 29, 1998, at less than 8 months of age, Jordan had brain surgery to remove a golf ball sized tumor sitting right near his brain stem. The surgery was performed by Dr. Richard Ellenbogen, Chief of Pediatric Neurosurgery expert on Choroid Plexus tumors. Originally, due to the location, the doctors had told us they thought the tumor was an ependymoma. But Dr. Ellenbogen’s gut was proved correct once they reached the tumor and testing could be performed on it. It was indeed a very rare Choroid Plexus Carcinoma (CPC). As I looked around online this evening I found some more info about this tumor. For one, I never knew what “grade” it was. On a scale of 4, the World Health Organization gives the CPC a grade 3. Choroid plexus tumors (carcinoma and papilloma) account for 0.4% to 0.6% of all brain tumors, 2% to 4% of brain tumors in children, and 10% to 20% of brain tumors manifesting in the first year of life. On average, there is a 40% survival rate at 5 years. Jordan has made it 10! And he had some considerable complications along the way! Just last month, the neuro-oncologist (Dr. Geyer) ‘cut Jordan loose’, saying he didn’t see any reason to continue scanning him every year. Wow, that’s weird.

We are so thankful that the Lord has given us all these years with Jordan. Surely, He has something very special for this boy who has defied the odds.


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