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In November of 2006, our five year old son Zach began having random bouts of nausea and vomiting accompanied by an increasing loss of coordination. A CT scan performed 11/14/2006 revealed a posterior fossa brain tumor and resultant hydrocephalus. On 11/16/2006 at Shands UF Dr. Pincus removed Zach’s tumor. The follow-up MRI indicated the surgeon had successfully removed all the tumor tissue. Pathology reports diagnosed Zach with “Classic Medulloblastoma”. A lumbar puncture on 11/28/2006 showed “suspicious cells” in Zach’s spinal fluid.
Zach’s treatment plan calls for radiation therapy to his entire brain and spinal cord, additional radiation to the posterior fossa where the tumor was located, and then 8-10 rounds of chemotherapy. As of 01/07/2007, Zach has completed the craniospinal radiation and has begun the radiation therapy focused on the posterior fossa. The radiation therapy will be completed by the end of January. After a 4 week break, the chemotherapy regimen will begin.
As a side effect of the brain surgery, Zach developed cerebellar mutism. This is a difficult concept to understand and describe, but what follows is my attempt. The connection between Zach's conscious/cognitive mind and his physical functions are disjointed/disconnected as a result of the trauma to his brain from the tumor and its subsequent removal. It appeared that Zach has regressed to an infant like state. He could not walk or talk and had to wear a diaper again. Yet cognitively he was still in there. He knows everything and everyone he did before. He just can’t make his body work right.
The good news is that this is a transient condition. Zach has been working diligently with Physical Therapy, Occupational Therapy, and Speech Therapy. Zach no longer has to wear a diaper. He communicates through self taught gestures, roars, squeals, and sign language. He is controlling his body much better with sitting up unaided, crawling & scooting around on his own, and standing & walking with support. Zach is on the way back. All he needs is time to strengthen and heal.
Check Zach’s Journal for a Historical Email account of his story.