Let’s start out with some good news … our little man is 6 months old today! J
Late yesterday we got word that a repeat MRI would be needed to check for any changes in Seth’s tumors. We arrived at Children’s about 6:45am and hung out in the lobby looking at the fish before heading up for our scheduled appointment. We were called back shortly after checking in and once again the nurse assigned to us was getting lots of smiles and laughs out of Seth. They started with his vitals and we changed him into a johnny and pants while the nurse prepared to do his blood work. I left the room and when I returned the nurse and Steve said the line wouldn’t draw. This is a real bummer because this is the second time we’ve tried to use it. The first it was difficult and this time it didn’t work at all. Blood draws are one of the main reasons for having a central line so I’m not sure what may be done about that going forward. Anesthesia came in a little later and discussed the procedure and Seth was off to have his scan. We went downstairs for a quick bite to eat and shortly after we returned upstairs they brought us back to see Seth. They explained that they had put in another iv while he was asleep and got what they needed for the blood work. He was a little groggy and cranky but after his bottle he was much better. We got him dressed and were off to wait for our appointment with the surgeon.
|After his MRI|
Around 11am we arrived at the surgeon’s office to discuss next week’s craniotomy. She began by saying they were all really disappointed that the first biopsy didn’t provide any tissue for diagnosis and explained sometimes brain tumors have a thin layer of “normal” brain tissue around them and it appears that is what they got in the sample. As a result they believe the craniotomy is the best way to go so we can get a diagnosis. She assured us that there would absolutely be a diagnosis after this procedure because a larger piece of tissue will be taken. She explained she had reviewed the MRI scans from earlier this morning and the tumors are grown “noticeably” and there is a third tumor in his eye. This tumor was in the initial scan but so small they hadn’t seen it originally. Her plan is to remove the largest tumor completely if it is safe to do so. She will assess that on Monday once she begins the procedure. We had really been holding out hope that these tumors may be benign but she confirmed today after seeing the growth and now the tumor in the eye that they are in fact cancerous. We went on to discuss the procedure itself, the recovery, and what to expect afterwards. We also asked if it would take another 10 days to get results this time and she said we hope not. Everyone is aware that we need a diagnosis as soon as possible so we can get Seth into a treatment plan. The delay before was due to the unfortunate timing of the holiday season and a skeleton staff for pathology.
It appears Seth is giving all the doctors (both her and our oncology team at the Jimmy Clinic) a run for their money because what they are seeing isn’t necessarily consistent with the ATRT they initially suspected, but it’s also not consistent with any other tumor habits they can pinpoint. Which means we really have no idea what to expect and that makes the results of the pathology that much more important. While we are nervous to get the pathology results because then this nightmare will really start to come to life it will be the start of getting Seth well.
Seth will have his pre-op appointment tomorrow and we are scheduled for surgery Monday morning.