7/12: Becoming Overwhelming

Leo's symptoms aren't be getting any better and we're very worried. He spent most of today at Grandma Bella's. He didn't drink very much and came home to home nurse Pat, who was here to change his venus port. I came home right after all the fun, but both Grandmothers, Mom, and Pat said he did well. I don't know whether that means they are happy to have survived that ordeal if Leo is happy to have survived. Either way, one new venus port access (needle) installed. But Leo wasn't exactly Leo...something seemed wrong. During the day Marina and I started thinking that maybe it's hydroencephalitis (water on the brain that causes worsening and new symptoms). Maybe it's coincidence, but at the exact moment Leiann, from the Yahoo Antineoplastons group whose son James has been treated by Drs. Goldman and Burzynski (http://www.caringbridge.org/in/james/), called, Leo started eating and drinking! He started walking and talking (not perfectly, but we're not asking for perfection right now) and laughing and smiling! Leiann: thanks for that positive energy by-phone! He took the decadron without a fight and seemed to have relaxed a bit. But he was exhausted and went to bed early, with his toy shovels of course. We just can't wait to get to Houston, to some clinic, to some doctor, to someone that can help our little Leo and tell us that everything will be alright, that will he will be great. That damned infection really threw a wrench into our "plans." How we wish we were somewhere already and Leo was being treated.

Speaking of the Yahoo Antineoplastons group, all of the children, families, and stories are indescribable. Ones where the child didn't make it are just overwhelming. I can't stand that unwelcome thought and have to give it a few minutes to fade -- and it always does. In some way, it provides guidance and a strange sort of focus that I can't easily describe. Reading those stories is hard. Really, truly, incredibly hard. But I do. Don't know why, just do. Maybe it's to imagine those parents not suffering anymore...maybe it's to pray that no one suffers the way they have.

The main time I have to write this is just after all the kids have gone to bed, with Leo laying in the middle of ours. Usually Marina and I are exhausted after trying to play with all 3, feed them, clean-up, change, bathe, etc. Now, neither of us complains of being tired (maybe because the Grandparents and everyone else have been helping so much). To be so out of control, so dependent, so helpless, and so hopeful while watching Leo's newly-found puffy cheeks is surreal and maybe just "being" here, now, living for the next smile is enough.

Some of the investment banking contacts are coming through. One put me in touch with the top guy at Duke, who said Dr. Goldman provides excellent care, which we know, and to stay the course. We just don't like the odds traditional treatment provides. Another friend is contacting venture capitalists that invest in companies searching for a cure, so we're trying to cover all the bases. One of the VCs reiterated her knowledge of and respect for Dr. Goldman.

After a lot of grief I managed to schedule 2 MRIs for Leo, one Friday afternoon @ Lutheran (with help and advice from my cousin Irena, who ironically is an oncological nurse there) and one Monday morning @ Evanston Northwestern Hospital. I'll keep ENH until we're done at Lutheran just to be safe. Travel planning is underway.

On a work note, I've been at work for roughly a week now since Leo's diagnosis. Had a couple of frank chats with my boss this week. I have never experienced the kind of compassion and understaning he has expressed over the last few days. I've read about and heard of great leaders (presidents, generals, religious figures, etc.) but know I was in the presence of another one today. In fact, the same goes for my entire team and even people that I hardly know at work. I am truly very grateful.

5 days 'til Houston...