7/19: Antineoplastons Day 1
Today was Leo's first treatment of antineoplastons. After the usual nurses' visit, we spoke at length with Dr. Weaver and asked dozens of questions...until we noticed he was getting antsy and trying to stand-up. But we kept on and got all of our questions answered. Good thing they're all pretty patient over there. Of course Leo was approved by the Internal Review Board for treatment under protocol BT-11: PHASE II STUDY OF ANTINEOPLASTON A10 AND AS2-1 IN PATIENTS WITH BRAIN STEM GLIOMA. The Clinic scheduled a Positron Emission Tomography (PET) scan on Friday morning (basically seems like a color MRI). The next MRI will be back in Chicago 8 weeks from now, with the following 8 weeks later. G-d willing, Marina will receive the best birthday present ever and we will hopefully have a lot to be thankful for on Thanksgiving!
At 11:00am today Leo was connected to his new best friend, a small dual-channel machine that started pumping antineoplastons into him. It comes in a little black canvas bag that people may mistake for a lunch carrier. The battery-operated pump is the size of a portable CD player and very light. Underneath are two clear plastic pouches. One contains antineoplaston A10 and the other AS2-1. Each bag is connected to the pump and one IV tube runs out of the pump and bag connecting to Leo. Nurse Louise told us that A10 breaks-up the tumor and AS2-1 destroys it. We received a binder full of documenation and instructions that we'll be learning over the next 3 weeks. One was an introduction to the proscribed diet. In a nutshell, low/no sodium, high potassium, and lots and lots of water (but not sports drinks, sorry Gatorade) -- we will be meeting with a nutritionist next Tuesday for a detailed dietary discussion. (On a related note, I didn't know that potatoes have much more potassium than bananas and a common sodium/salt substitute is made of potassium.) Louise also showed us a few things.
First she showed us how to connect and disconnect the pump and the IV tubing. This was a no-brainer for us because Leo's had the venus port for a while, which we've been using for antibiotics and flushing, etc. So this was very quick. Second she showed us the "emergency kit," which consisted of a large vial of decadron, some needles, alcohol wipes, syringes, etc. We have to be prepared in case of an emergency and need to carry this (and the pump with antineoplastons) with Leo at all times, so the kit also goes into the bag. We learned how to connect the needle to the syringe, fill it with the correct dose of decadron (which we would need to get from the on-call doctor), stop and disconnect the pump, and inject into the port, all under sterile conditions and without getting air into the line. This wasn't too hard, either. We're sure this was the easiest day, since we see other people preparing IV bags, which seem to take much, much longer than our plumbing connections.
Leo's first trial dose, the smallest he'll probably ever get, took 30 minutes and thankfully he showed no signs of allergic reactions. Then Louise got 2 new bags and sent us on our way; our day started at 10:30 and finished by about 12:30-ish, so it was very quick. Leo, of course, wanted more pizza, so we decided to go to Whole Foods in search of low sodium, high potassium goodies. Robert at the prepared foods counter offered to make a special pizza, from scratch, just for Leo and even consulted with their on-staff cheese expert for the lowest-sodium cheese and made fresh sauce, all on a spinach wrap. During all this, Marina found a few low sodium things and we had a very nice lunch in the store. Leo enjoyed the pizza, which was absolutely amazing! He did get a little cranky and must've been in a food coma for the ride to our, hold on, new hotel.
Yes, it took some convincing by the Grandparents, especially Granpa Leonid, but we moved into Candlewood Suites just a few minutes from the clinic. Immediately people at Candlewood (other patients and their families) recognized Leo -- he seems to be a bit of a personality over there. Our room is big, with a good sized bed for all 3 of us and the pump, so no one should go bump in the night anymore. After waking-up from a little catnap, Leo placed an order for peanut butter and jelly (a first) and yogurt, which we had. So while Marina helped him with the yogurt, I went to the local grocery store and bought PB and J, as well as other low/no sodium and high potassium foods...including plenty o' potatoes.
Maybe we're just getting used to the speech, but he seems to be talking a little better than before. His legs seem weak, though. He can sit-up from a laying position, but doesn't really try to stand-up. Dr. Weaver suggested we slightly increase his dose of decadron by 2mg, as a third dose, so 4-4-2 starting today; he also gave a prescription for lactulose, a sweet syrup that should ease his constipation, which little sister Anna also takes. Although he wasn't happy getting dressed this morning to go to The Clinic, he's actually in a decent mood and smiles and laughs a lot. He even kind of squeals with joy sometimes, which is the best and we try to keep it going as long as he's willing.
Thanks to everyone that has donated to Leo's Treatment Fund! Words can't describe our gratitude to your generosity -- thank you!
Tomorrow starts at 10:30, but we'll be up early, as always! If you've gotten this far, no good deed goes unpunished: we need good low/no sodium and high potassium recipes.
At 11:00am today Leo was connected to his new best friend, a small dual-channel machine that started pumping antineoplastons into him. It comes in a little black canvas bag that people may mistake for a lunch carrier. The battery-operated pump is the size of a portable CD player and very light. Underneath are two clear plastic pouches. One contains antineoplaston A10 and the other AS2-1. Each bag is connected to the pump and one IV tube runs out of the pump and bag connecting to Leo. Nurse Louise told us that A10 breaks-up the tumor and AS2-1 destroys it. We received a binder full of documenation and instructions that we'll be learning over the next 3 weeks. One was an introduction to the proscribed diet. In a nutshell, low/no sodium, high potassium, and lots and lots of water (but not sports drinks, sorry Gatorade) -- we will be meeting with a nutritionist next Tuesday for a detailed dietary discussion. (On a related note, I didn't know that potatoes have much more potassium than bananas and a common sodium/salt substitute is made of potassium.) Louise also showed us a few things.
First she showed us how to connect and disconnect the pump and the IV tubing. This was a no-brainer for us because Leo's had the venus port for a while, which we've been using for antibiotics and flushing, etc. So this was very quick. Second she showed us the "emergency kit," which consisted of a large vial of decadron, some needles, alcohol wipes, syringes, etc. We have to be prepared in case of an emergency and need to carry this (and the pump with antineoplastons) with Leo at all times, so the kit also goes into the bag. We learned how to connect the needle to the syringe, fill it with the correct dose of decadron (which we would need to get from the on-call doctor), stop and disconnect the pump, and inject into the port, all under sterile conditions and without getting air into the line. This wasn't too hard, either. We're sure this was the easiest day, since we see other people preparing IV bags, which seem to take much, much longer than our plumbing connections.
Leo's first trial dose, the smallest he'll probably ever get, took 30 minutes and thankfully he showed no signs of allergic reactions. Then Louise got 2 new bags and sent us on our way; our day started at 10:30 and finished by about 12:30-ish, so it was very quick. Leo, of course, wanted more pizza, so we decided to go to Whole Foods in search of low sodium, high potassium goodies. Robert at the prepared foods counter offered to make a special pizza, from scratch, just for Leo and even consulted with their on-staff cheese expert for the lowest-sodium cheese and made fresh sauce, all on a spinach wrap. During all this, Marina found a few low sodium things and we had a very nice lunch in the store. Leo enjoyed the pizza, which was absolutely amazing! He did get a little cranky and must've been in a food coma for the ride to our, hold on, new hotel.
Yes, it took some convincing by the Grandparents, especially Granpa Leonid, but we moved into Candlewood Suites just a few minutes from the clinic. Immediately people at Candlewood (other patients and their families) recognized Leo -- he seems to be a bit of a personality over there. Our room is big, with a good sized bed for all 3 of us and the pump, so no one should go bump in the night anymore. After waking-up from a little catnap, Leo placed an order for peanut butter and jelly (a first) and yogurt, which we had. So while Marina helped him with the yogurt, I went to the local grocery store and bought PB and J, as well as other low/no sodium and high potassium foods...including plenty o' potatoes.
Maybe we're just getting used to the speech, but he seems to be talking a little better than before. His legs seem weak, though. He can sit-up from a laying position, but doesn't really try to stand-up. Dr. Weaver suggested we slightly increase his dose of decadron by 2mg, as a third dose, so 4-4-2 starting today; he also gave a prescription for lactulose, a sweet syrup that should ease his constipation, which little sister Anna also takes. Although he wasn't happy getting dressed this morning to go to The Clinic, he's actually in a decent mood and smiles and laughs a lot. He even kind of squeals with joy sometimes, which is the best and we try to keep it going as long as he's willing.
Thanks to everyone that has donated to Leo's Treatment Fund! Words can't describe our gratitude to your generosity -- thank you!
Tomorrow starts at 10:30, but we'll be up early, as always! If you've gotten this far, no good deed goes unpunished: we need good low/no sodium and high potassium recipes.
posted by Yury at 10:28 PM
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