7/24: Port Problems
Leo needed to have a blood test today and of course his port didn't cooperate. Thankfully the nurses at Greater Houston Imaging left a heplock IV in his right hand. It didn't cooperate at first either and the nurses wanted to stick him again. After we told them to find a way not to stick him, nurse Louise figured out how to get the blood from the heplock and all was well. Otherwise we would have had to have gone to Texas Children's Hospital. Another painless day.
We also convinced The Clinic that they need to order Tissue Plasminogen Activator (TPA) because we can't make Leo suffer anymore. Especially since other people have the same issue, the nurses talked to the doctors, ordered it, and will shortly have it on hand at the clinic for whoever needs it. We found out Genentech charges a whopping $1,800 for a single dose of their genetically-engineered Altiplase TPA, which is injected into the port and then withdrawn after having dissolved the clot. I can't call that a "buy" recommendation, but can say that I plan on buying a few shares. In fact, Genentech is the same company that's researching gene-based treatment of cancer and other diseases, just like the Burzynski Clinic, with drugs like Avastin, among others.
Some of Leo's symptoms seem to be getting better with that slight decadron increase from the start of our treatment here. His eyes closed completely last night when he went to sleep (they haven't in a while) and his speech has definitely improved. He's using his left hand and arm a lot more and moved his left leg more today. His mood is a lot better, too. At the clinic today he was laughing and giggling so much that even the nurses and other patients noticed, saying they hadn't seen him in such a good mood! His cheeks and face are now exhibiting the typical "moon face" of children on decadron. Marina and I were noticing how Leo looks like other children on the walls of The Clinic, which were cured, so we're praying to have Leo's before, during, and after pictures on those walls soon.
Tomorrow at 9am we are meeting the nutritionist and will probably talk to the radiologist about Friday's PET scan.
We also convinced The Clinic that they need to order Tissue Plasminogen Activator (TPA) because we can't make Leo suffer anymore. Especially since other people have the same issue, the nurses talked to the doctors, ordered it, and will shortly have it on hand at the clinic for whoever needs it. We found out Genentech charges a whopping $1,800 for a single dose of their genetically-engineered Altiplase TPA, which is injected into the port and then withdrawn after having dissolved the clot. I can't call that a "buy" recommendation, but can say that I plan on buying a few shares. In fact, Genentech is the same company that's researching gene-based treatment of cancer and other diseases, just like the Burzynski Clinic, with drugs like Avastin, among others.
Some of Leo's symptoms seem to be getting better with that slight decadron increase from the start of our treatment here. His eyes closed completely last night when he went to sleep (they haven't in a while) and his speech has definitely improved. He's using his left hand and arm a lot more and moved his left leg more today. His mood is a lot better, too. At the clinic today he was laughing and giggling so much that even the nurses and other patients noticed, saying they hadn't seen him in such a good mood! His cheeks and face are now exhibiting the typical "moon face" of children on decadron. Marina and I were noticing how Leo looks like other children on the walls of The Clinic, which were cured, so we're praying to have Leo's before, during, and after pictures on those walls soon.
Tomorrow at 9am we are meeting the nutritionist and will probably talk to the radiologist about Friday's PET scan.
posted by Yury at 8:29 PM
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