Julianne Long

First post: Feb 10, 2010 Latest post: Aug 15, 2017
My Story

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On January 12, 2010 Julianne had a CT Scan ordered by Dr. West for headaches only as precaution, never expecting to find anything. However, the CT Scan showed she had hydrocephalus. An MRI was immediately ordered that showed a mass or tumor in the Thalamus producing a blockage of the ventricles that caused the spinal fluid to accumulate in her brain (hydrocephalus).

She was sent to OLOL where she was put into the Pediatric ICU. On that Friday, she underwent a ventriculostomy or a tube inserted into her brain to re-route the fluid to drain in its natural place. Biopsies were also done. After a few days, when tests showed the fluid was draining correctly, the tube was removed.

Unfortunately, the biopsies were inconclusive and we still have no answers. While she is not suffering the same types of headaches she was before the ventriculoscopy, she still has some headaches and discomfort.

The doctors referred her to St. Jude for consult.  They in turn, consulted the brain tumor specialists at St. Jude Hospital in Memphis, TN where she has appointments next Wednesday and Thursday and possibly a scheduled biopsy on Friday.

Thank you all for your continued prayers and support. It helps more than we can say. We will continue to update this site as we learn new information. 

Thank you for joining us in praying for that miracle for Julianne.


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