7/11: Symptoms are Getting Worse

Although today was generally uneventful, it is now nearly impossible understand what Leo says -- and he's a blabbermouth! The sounds come out as if he had a really, really stuffed nose; "p" sounds like "n" and Marina and I are really the only ones that seem to have any idea what he's trying to say. Sometimes the words do come-out okay, but only after several difficult attempts and as if Leo was giving it one last shot, with all the strength he has. We've figured out that it's better to ask yes/no questions when he can just nod or shake his head to answer. The walking is just as bad. Leo now seems to prefer to sit, instead of walking or running. When he does try to walk, it's just for a few feet and he has to be very closely watched. His attempts at walking look like a robot's first steps. Anna and Nina, both 2, can walk, run, and climb much better than Leo, which is a scary thought. All symptoms seem to get worse as the day wears on, probably as he gets more tired.

On the other hand, his mind is still very sharp and he's still fighting -- these are good things. He remembers promises made to him days, if not weeks, ago. He can still do puzzles, match objects with pictures, knows how the remote controls work, how trucks work, etc. It's just the motor skills, it seems, that have been visibly affected.

I had trouble scheduling an MRI with sedation for Leo for our trip to Houston. Dr. Kroin has been a tremendous help and we should have this issue resolved tomorrow.

Some friends at a hedge fund had a great idea: they sent e-mail to equity researchers/analysts that work in biotech/pharma to see whether there are any new or innovative trials on treating pontine glioma among the companies they cover. This hedge fund's contact sent stuff about various new trials, which I've never seen, except for the radioactive scorion venom. I did the same and asked friends at Merrill Lynch and UBS Investment Bank to see if they can get any info. UBS should provide some good leads because they have such a huge international presence. Maybe someone somewhere heard of some company with something new and unique that can help. I plan on creating a list here to let everyone know of any and all leads we find, but so far the majority have said to contact the standard sites, like cancer.org, cancertrials, St. Jude's, etc.

6 days 'til Houston. I can't thank everyone enough -- even the shortest notes of support or encouragement help. Thank you all.