7/20: First Dose Increase
Looks like Leo's first dose went well, which means no side-effects. The A10 dose was increased by 10mL today, while AS2-1 will remain constant for another day or so. We also have only 1 dose of the antibiotic left, thankfully because that gets in the way of the antineoplastons (we have to disconnect the pump during antibiotics). The port didn't work again today, so Leo got stuck twice for a blood draw...and then the port started working. He's going through so much and is such a trooper. He never complains about anything when obviously he isn't feeling well.
We're starting to watch more closely what we eat and the groceries we buy. Lunch today was at a health food store/restaurant that made some really good Mexican food. They claim to put no salt into anything, which is hard to believe because everything was so flavorful, but this seems to be a popular hang-out for Burzynski patients and families.
Leo is weak and very tired, although still eating better than ever. He doesn't drink from straws or sippy cups anymore because they seemed to cause more choking and coughing; drinking straight from a cup seems to help in that department. He doesn't like to stand anymore and walking is almost out of the question. He can and still does both, but prefers to be held or carried, which is getting tougher because he's putting on weight (over 32 pounds now) and is connected to the pump. Speaking of the pump, we got him a Spiderman backpack on wheels. He's too small to wear the backpack -- that is, the pump and bags are too heavy -- but when the walking gets better should be able to wheel-around the backpack.
Tomorrow is our first PET scan in the morning, which will force us to keep the staff at the Burzynski Clinic late...
We're starting to watch more closely what we eat and the groceries we buy. Lunch today was at a health food store/restaurant that made some really good Mexican food. They claim to put no salt into anything, which is hard to believe because everything was so flavorful, but this seems to be a popular hang-out for Burzynski patients and families.
Leo is weak and very tired, although still eating better than ever. He doesn't drink from straws or sippy cups anymore because they seemed to cause more choking and coughing; drinking straight from a cup seems to help in that department. He doesn't like to stand anymore and walking is almost out of the question. He can and still does both, but prefers to be held or carried, which is getting tougher because he's putting on weight (over 32 pounds now) and is connected to the pump. Speaking of the pump, we got him a Spiderman backpack on wheels. He's too small to wear the backpack -- that is, the pump and bags are too heavy -- but when the walking gets better should be able to wheel-around the backpack.
Tomorrow is our first PET scan in the morning, which will force us to keep the staff at the Burzynski Clinic late...
posted by Yury at 6:11 PM
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