8/6: No Antineoplastons Today Either (Day 2)
Dr. DeLeon told us last night that there's some chance of getting a Huber Needle back into Leo's port and re-starting treatment today...
While we were waiting for the doctor, nurse Louise blew in and out of the examining room, dropping-off a shopping bag with the antineoplastons, saying nothing but, "Here you go." I bet she feels some guilt because she wouldn't look at or speak to us today.
Dr. Roa decided against restarting treatment today, but he actually looked and touched the area where the infiltration had occurred. He said it was best to let Leo rest another day and let the infiltration recede. I asked him to phone Dr. Weaver and he refused, asking, "Why? What for?" He claimed that a day or two off the antineoplastons won't do any harm or set-back Leo's treatment. This makes sense, but isn't what we need or want to hear. He also said that the protocol stated that Leo had to start antibiotics (cephalexin) as a preventative measure 4 times a day for 5 days. Great. Nothing but good news today.
Leo was not himself today. I thought without all the sodium he would at least sleep through the night. Wrong. He was awake from about 1-3am. He drank very little today probably because he was used to the thirst brought-on by the antineoplastons. Instead, he ate once -- all day long. Good thing Granpa figured-out how to make some tasty "chicken nuggets" from scratch so at least we didn't have to deal with Mc-you-know-what. Signs of constipation are already showing. Leo's mood wasn't good and his symptoms seemed just a tiny little bit worse today. Or maybe not. Maybe he was completely under the spell of steroids and antibiotics (and we saw similar effects while he was antibiotics for the last infection). Decadron is supposed to cause hunger, irritability, aggressiveness, etc., all of which were present from morning. I'm glad today is just about over.
While doing some research I found an article about one of the other two children at The Clinic being treated for a brain stem glioma.
One thing is for sure: we're going to be first at The Clinic tomorrow. Another Huber Needle and treatment needs to restart. At least we're going to see Dr. Weaver and get him back in the game.
While we were waiting for the doctor, nurse Louise blew in and out of the examining room, dropping-off a shopping bag with the antineoplastons, saying nothing but, "Here you go." I bet she feels some guilt because she wouldn't look at or speak to us today.
Dr. Roa decided against restarting treatment today, but he actually looked and touched the area where the infiltration had occurred. He said it was best to let Leo rest another day and let the infiltration recede. I asked him to phone Dr. Weaver and he refused, asking, "Why? What for?" He claimed that a day or two off the antineoplastons won't do any harm or set-back Leo's treatment. This makes sense, but isn't what we need or want to hear. He also said that the protocol stated that Leo had to start antibiotics (cephalexin) as a preventative measure 4 times a day for 5 days. Great. Nothing but good news today.
Leo was not himself today. I thought without all the sodium he would at least sleep through the night. Wrong. He was awake from about 1-3am. He drank very little today probably because he was used to the thirst brought-on by the antineoplastons. Instead, he ate once -- all day long. Good thing Granpa figured-out how to make some tasty "chicken nuggets" from scratch so at least we didn't have to deal with Mc-you-know-what. Signs of constipation are already showing. Leo's mood wasn't good and his symptoms seemed just a tiny little bit worse today. Or maybe not. Maybe he was completely under the spell of steroids and antibiotics (and we saw similar effects while he was antibiotics for the last infection). Decadron is supposed to cause hunger, irritability, aggressiveness, etc., all of which were present from morning. I'm glad today is just about over.
While doing some research I found an article about one of the other two children at The Clinic being treated for a brain stem glioma.
One thing is for sure: we're going to be first at The Clinic tomorrow. Another Huber Needle and treatment needs to restart. At least we're going to see Dr. Weaver and get him back in the game.
posted by Yury at 8:13 PM
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