Another Biopsy

After meeting with our Oncologist last week, he informed us that all the Histiocytic disorder specialists and pathologists wanted a culture done to rule out the possibility that the damage to Livvy's spine was done by infection. We met with the Infectious Disease specialist at CCMC who wasn't convinced that this was an infection because had it been, it would have 'colonized' in one place, then spread to surrounding vertebre. Olivia's lytic lesions are spread out, some in the upper vertebrea, then down at her sacrum. The Histiocytosis experts, including Dr. Shiela Weitzman at the Hospital for Sick Kids in Toronto, Dr. Arceci at John Hopkins, Dr. Ken McClain in Texas, pathologist Dr. Jaffe from Pittsburgh and many others were all consulted about her lytic lesions and all agreed another biopsy was in order.

The neurosurgeon would not do another open biopsy, I agree. I wouldn't want to put her through that again. The other doctors would have preferred another open biopsy. My choices were: Let the 'disease' progress or hope that it goes away on its own then deal with her back later, OR, get another biopsy to pinpoint what the heck is going on and start treatment before more damage is done. I chose to do another biopsy, a needle biopsy.

Thanks to Christine from Childlife!

Olivia had the needle biopsy yesterday. This time they went in for the lytic lesion on the sacrum (tailbone area). The took core bone samples and the doctor who preformed the guided CatScan biopsy said the bone was more dense this time and sclerotic. Hopefully they can either prove or disprove that this is Histiocytosis or an infection.

She was very groggy, cranky and irritable after the anesthesia and versed. Since her procedure wasn't done till about 3pm and she hadn't eaten since the night before, she was pretty much 'starving' and demanded pizza from Vinny's. She ate, took tylenol w/codiene when the pain kicked in and went to sleep for the night. She was supposed to meet with her tutor yesterday (2nd session) but we had to cancel and I'm canceling todays session to let her rest.

Huge thanks to Christine from ChildLife for spending ALL DAY with us yesterday. She is a great comfort to Livvy, made her laugh and provided some fun games to help keep her mind off everything. I can't stress enough how helpful Childlife has been.