9/25: Suddenly Sleep isn't such a Good Thing

For the first time since July, Leo slept for 9 hours last night! He's off of treatment, so no need to wake-up, drink, and pee. Instead, he slept. As much as the sleep was welcome for all of us, it was an uncomfortable sleep filled with anxiety and restlessness...at least for me. Leo seemed perfectly comfortable, though, which is probably good under the circumstances. But sleep does mean no antineoplastons, delay for the cure, and decadron taking over. When he woke up at 5am he wanted to drink, which he did fairly well. But opening his mouth to eat was another story. The same thing happened 2 weeks ago, during his first bout with thrush. When we stopped the treatment, he stopped opening his mouth and eating. Since the thrush is back now, and almost under control, we stopped the antineoplastons and witness the same thing regarding his mouth and eating. We also noticed that drinking thin liquids seems easier than thick ones, like milk or PediaSure, and he drank 4 glasses of orange juice today. Speaking of thrush, turns out that one of the reasons almost no one has gentian violet in stock anymore is because an Australian study found it may cause mouth cancer. I'm sure it's rare and all that, but Leo's situation is enough. We certainly don't need more grief.

Leo hasn't eaten since yesterday and we were seriously considering taking him to the hospital to get IV fluids tonight. Today's bloodwork was okay; everything was basically in range. With that and a very long consultation with Dr. Kroin we decided to let him sleep another night at home. Had anything on today's blood test been out of range, I would have been writing this from the hospital. Most likely, though, he'll stay at Lutheran General tomorrow night, getting IV fluids and not being allowed to rest. So today was another anxiety-filled today because of the thought of staying in the hospital overnight.

Tomorrow morning at 7:30am, again at Lutheran General/Parkside, Leo will have an MRI. This one is for the protocol; otherwise we would have delayed it because of all the stoppages in treatment. But we're still hoping, praying, and begging for something good. I asked Houston to ask for a stat reading tomorrow, so at least we won't have to wait. It won't be a final reading; that will come later. Besides, Houston will do its own reading and analysis. This one is just for us.