Tuesday

Between 1 hour check-ups by the nurses, janitors, constant blood draws to measure his sodium levels (prevents seizures), and a 4:00 am high-definition, color MRI scan, Luke has gotten little sleep since checking into the hospital yesterday afternoon, but is in fine spirits. All the nurses have been terrific and some swing by just to chat since they heard how nice he is from their fellow crew members – the ‘blue team’ as Elsa refers to them.

He is calm and focused, ready for the surgery ahead. He is assembling his inner strength and channelling the energy we’re all sending his way. You can feel it in his presence. He’s ready and no doubt will be great.

This afternoon they did another calibrating MRI and mapped out Luke’s head with a dozen or so sticky life-saver-esque foamies called fiducials. Later we met with Dr. Perry, the neuropsychologist, who will be attending tomorrow’s surgery. He walked us step-by-step through the entire procedure in a very thoughtful and precise manner. He will be communicating directly with Luke as Dr. Berger maps Luke’s brain with a laser pointer of sorts.

First they will put Luke under in order to cut out a section of his skull. His head will be secured and he will be laying on his right side to maintain the open access to the left side of his brain. Once readied, they will “wake” him up. Dr. Berger will point his laser around the brain area and everyone will be looking for physical reactions to the trigger points of the laser. Luke will be able to respond as to whether a body part is experiencing tingles, numbness, or anything else that they cannot visually see. Then he will be told to count in a slow, controlled, orchestrated way – they practiced – to 20 or 50. They may do this a few times. All the while Dr. Berger is laser pointing and registering the the outcomes.

The next step will be going through a set of simple b/w line drawings – rooster, table, cake, car, etc. They practiced by going through the slides today. Dr. Perry took notes on any pause Luke took, what he specifically said and more. The best was when Luke was shown a picture of a sea lion. Luke responded as much and Dr. Perry prompted him if there might be something else it might be called, Luke offered both Steller Sea Lion and California Sea Lion. Seal is what he was looking for, but Luke informed that in fact the animal pictured there clearly had ears and was a sea lion, not a seal – Dr. Perry promised to look further into it and will likely be adjusting that slide and/or title in the future. Pretty funny.

The last test will be focused on reading and was composed of a handful of simple typed words – no longer than five letters. Dr. Perry stressed that Dr. Berger could be pointing the laser at any possible time, disrupting the thought process. So if he misses one, not to focus on the loss, but simply the next slide.

The mapping process takes 1-2 hours before they even begin to remove the tumor. The anesthesiologist has the power to bring Luke to full conciseness and/or knock him out as needed. Because of the location of Luke’s tumor they may perform most of it while he’s awake, allowing them to continue to map as they extract the walls and edges of the tumor. Apparently the brain itself feels no pain. Dr. Berger is also renowned for his patience, exactness and diligence in removing everything he can from the tumor’s edges – this will be especially important if the tumor’s edges are not distinct. Obviously the more they remove now, the better chances of the chemo/radiation getting the rest.

The entire surgery could last 5 to 6 hours and there will be quite a few people in the room between the neurologists, nurses, machine operators, etc. Once finished they will replace the puzzle piece of his skull, which will apparently readily heal itself and then suture/staple up his scalp. They will give me regular updates and we’ll be able to greet him on the other side. He will spend the first night in the ICU and then move back to a room on the 8th floor for at least another 2 days.

Swelling of the brain from the surgery may affect his language skills and memory, but as the swelling decreases it should come back. If his speech is much worse, they suggest a therapist to speed up the recovery process. The brain is amazing and Luke is one smart cookie. He is ready for the challenge and knows that he will be okay. He is incredibly strong inside and out. Here’s to a good night’s rest in preparation of the big day.

Thank you all for your love and support – it’s amazing and we are entirely grateful.

Recovered image references:
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