Abby's Journey Archive

I just left the hospital. We gave Abby the choice about who would stay with her, and she asked for mommy tonight, so I came home.

She is definitely not recovering as quickly this time as last time. She was finally perking up a little bit when I left, and was drinking water. She needed almost a full unit of blood, and they went ahead and finished the unit after she returned from surgery, and also gave her some red cells.

An odd wrinkle that came up was that her platelet count was low when we went in for surgery. Nobody's sure why this is yet--could be something to do with the line placement, or could be related to the cancer if it had spread to her bone marrow. They think the spread to the bone marrow is extremely unlikely--nobody has seen an ATRT or PNET-style tumor spread to the bone marrow. This was one reason she needed so much blood, in addition to replacing what she lost in surgery.

Thank God she is moving extremities on her left side (arm, hand, fingers, toes). This is a good sign. We'll see about peripheral visual field issues tomorrow.

Dr. Shafron just came out to give us the post-op report. He says the surgery went very well. There was definitely more tumor at the original site that needed to be resected, and the new nodule, in his estimation, probably had doubled in size since her MRI on May 27. So this is clearly a very aggressive little bugger. He also attempted a thorough search for infiltrated tumor, and removed some tissue based on what he found. The tumor was actually starting to come up through the dura, which is the lining in between the skull and brain.

She has staples now instead of sutures, and he needed to install a drain which can come out in a day or so. We're waiting for them to let us into her room.

Dr. Shafron's intern just came out and said they are closing. She said things went well and they should be done momentarily. Abby is doing well.

Abby went into surgery about 3 hours ago. She made it through the MRI OK--she got claustrophobic after the first set of scans and had some trouble holding still. The tech stopped the scan twice to give her little breaks and adjust the restraint for her head, and in the end Dr. Shafron dropped into the MRI facility to get a first read on the scan. We were so relieved when they told us that he had what he needed. We were quite concerned that she had moved around too much.

Dr. Shafron could not give us a good idea when he would be done. He needs to resect a larger area than last time, and he warned us that some area is infiltrating tumor, so it takes longer to take out (he has to be a lot more careful not to get healthy tissue).

It's about 5:20 now and we have had one update from the OR. She had no trouble with the anesthesia, but still no word on when they will be done.