Hard to believe that the Make-A-Wish trip was nearly two years ago. While a lot has happened since then, things have been going well so updating Max’s blog didn’t seem all that important. Sadly, things have changed a little bit. Max’s MRI back in July showed that his ventricles weren’t draining Cerebral Spinal Fluid (CSF) properly. At that time, we scrambled a little to meet with the chief of neurosurgery at CHOP about what was likely for Max going forward. He explained that while the MRI showed a clear and significant change, he didn’t believe that surgery was warranted because Max wasn’t showing any other symptoms. The most likely symptoms for Max would be a change in the color of the optic nerves, headaches, and/or dizziness upon waking in the morning.
This past Monday was Max’s 3-month follow up MRI. This time around, in addition to scanning his brain and eyes, his entire spine was scanned because he’s showing signs of scoliosis. The spine was just precautionary and to get an initial image of his anatomy in case treatment for scoliosis becomes necessary in the future. In July and now, the curvature of Max’s spine isn’t bad enough to warrant treatment but he’s close so he’ll be watched closely as he goes through puberty and growth spurts as that is when things could change a lot in a short period of time. Adding the spine to the MRI turned what was typically a 90 minute scan into a 3 hour and 15 minute scan. How Max was able to lay mostly still for that long and be inside the MRI tube is beyond me. Near the end he was clearly, and understandably, restless and would cross his legs. I’d hear the radiologist say, “Max, don’t move.” and he’d reply with a simple “Sorry.” That happened a lot near the end. When it was all over he jumped up off the table rather quickly causing both the nurse and I to worry that he’d collapse from being dizzy. He insisted that he was fine and actually started hoping a little bit. We tried to get him to stand still but he said, “I’ve really got to pee, it’s an emergency!” Apparently he’d been holding it for a little over an hour. It is stunning what he’s able to tolerate.
While he was in the bathroom taking care of things and getting dressed, I was visited by the radiologist who wanted to make sure that we wouldn’t be leaving the hospital. I knew something was up, but she wasn’t able to share, so I let her know that we still had two doctor’s appointments to go before we could leave. It was 12:45 pm before we were able to leave and we had to be at the first doctor at 1:30 pm so we ran down to McDonald’s. Max ate his entire meal in just under 8 minutes, which is a record for him. We were able to make it to the doctor slightly ahead of schedule so we got checked in and then started to play air hockey on the new iPad from work. That was fun but we only got in a few quick games before his doctor called us in. The doctor never calls us in. We typically go in with a medical student who does an initial exam. That person then explain their findings to the doctor and he reconfirms their results and tells us what it all means for Max, always making sure that Max understands. This time there was no medical student. Max was examined quickly and then we were asked if the oncologist had called yet. I told him that no, we hadn’t heard from her yet, but we knew something was going on. He said that the team had already talked about the MRI and we needed to go see oncology before going to the orthopedist.
Not knowing what is wrong, only that something is wrong, is such a crappy feeling. Because we’d added the spine, I was worried something new was going on. Thankfully, I wasn’t given a lot of time to ponder all the what if’s as we got in to see the neuro-oncologist within just a few minutes (something else that never happens). She started right in with the MRI, showing us that the ventricle on the right side was significantly changed from last time having become larger and showing more spill over than before. The good news was that the left side was smaller than it had been 3 months ago. We talked for a while about the implications of the change being only on the MRI with Max remaining without other symptoms. The concern expressed by the neuro-ophthalmologist is that Max's optic nerves might not show a change in color because they're already so badly damaged. The fear is that Max could completely lose his vision as his first symptom. The neuro-surgeon argued that would be very unlikely and that headaches or diziness would be far more likely but also acknowledged that Max will almost certainly need a shunt in the future.
At this point we're all agreed, Max included, that Max does need a shunt and that he should have the surgery soon, rather than wait for anything further to develop. This Thursday, November 4, the whole family will head down to CHOP for a meeting where Max will get a physical, have blood drawn for testing, and we'll discuss the entire procedure and answer all of the remaining questions. Then, on Monday, November 8, Max and Bob will head to CHOP for Max's surgery. We won't learn the time until the Friday before hand but we already know that Bob can stay with Max in the hospital and that Max will be there for at least 24 hours. The expectation is that he'll get to return home on Tuesday where the girls will have a feast of McDonald's, BBQ potato chips, and milk already prepared.
On Wednesday, Max will head to Lehigh Valley with Tracy for injections that he would normally have gotten on Tuesday. While these could be given at CHOP, Max would miss his monthly visit with everyone at Lehigh Valley. Also, Max will finally get the much coveted "overnight" bead for his necklace. He's longed for this since getting his first beads many years ago but had thus far eluded the qualification of an overnight stay at a hospital.
While Max is concerned about the surgery, he agrees that he needs it to make sure that other things don't go wrong. He is looking forward to the trip to Philly with the family tomorrow, his party/feast when he returns home, his overnight bead, and some super fantastic prize that is certain to be coming his way.