The Good, The Bad, and The Good

Today we have some bad news but that is tempered with some good news. We'll start with good, then onto the bad but then back to the good. First, if you haven't already heard, Max was able to do his follow up MRI on April 11 without sedation. (His MRI was moved up a month because he had complained of some eye pain that had no visible source.) Doing the MRI without sedation is a huge achievement for him and makes future scans far less worrisome. This means he doesn't have to fast for 8 hours before scans and he doesn't need 2 days to recover from the drugs. It is remarkable that he can do this because he needs to stay absolutely still for an hour and half in a tunnel that is many times louder than the Holland Tunnel with all the car windows open. Next time we'll look into bringing music for Max, as that appears to be an option, as well as better reading material for Bob as he was left reading very old editions of Vogue since laptops aren't allowed in the scanning room.

Onto the bad news; the scans showed that the tumor on the left side of his hypothalamus is more active and larger in size. Today we met with his oncologist at Children's Hospital of Philadelphia (CHOP) and talked about what this means for Max. The long and the short of it is that there is very little change in Max physically but we still need to see the eye doctor to confirm this. His vision check with the oncologist went worse than Bob had expected because Max didn't really see anything out of his 'bad' eye. Part of the problem though is that waiting for a physical change means waiting for a loss of vision or a significant change in behavior, hormone, or body function. We all agreed that we did not want to wait for that so we started talking about possible treatments. (We did meet with his neuron-ophthalmologist later and found his vision to be slightly improved - go figure)

This brings us back to the "good" news as there is a change in options from when we talked about these things in November of 2004. The options from before still exist but one that is new (or wasn't appropriate for discussion last time, not really sure) is a chemotherapy drug called vinblastine (also called velban). This will be a once a week therapy that is essentially an injection. This is different than before, when he was getting a drip, because it is an intravenous injection so there is no long wait while the drugs go in. After his blood work is done - normally 20 minutes if memory serves - there is just an injection and then we go home. Our hope is to be able to accomplish the majority at Lehigh Valley so that Max can go to school for most of the day on Tuesdays and it won't be the disruption to his life the previous chemotherapy was. We choose this option over the others as there is no chance of leukemia as a side effect. Other bonuses are that while it will likely affect his reflexes it is unlikely to be as bad as last time, his hair is likely only to thin a little bit, and finally the most likely side effect will be constipation which he dealt with before just fine. The rate of effectiveness is only 50% which is on par with the other favored treatment option which was Temodar. Temodar would've been even less of a disruption as it is an oral med that he takes at home but there is a risk of leukemia which we weren't ready to chance yet.

At the end of 3 months we should know whether or not this course of treatment is effective or not.

It is getting late and I really do want to get an update out to everyone before it filters through the phone chain and gets distorted. I think I've covered everything but Tracy is already asleep so you're getting this un-reviewed and un-edited. The important thing to take away is that Max is not in any pain and that the treatments that we started today are likely to have less of a negative impact on his life than his prior 14 months of chemo. Oh - he'll be missing the end of Art class at school which he assures us is fine by him.