7/18: Not a Fun Day
Yesterday we noticed that Leo's left eye was ever so slightly sometimes turning inward, which didn't get worse today. But Marina thinks he's either seeing double or losing focus because of the way he sometimes holds his head, chin closer to chest. We asked him about this in as many ways as we could, but he always said his vision was fine. We tried holding-up various numbers of fingers, asking how many pieces of bread were on a plate, etc. He always answered correctly, but obviously we're keeping very close track of all his symptoms, looking for anything new.
This morning was another example of bungling by our medical system. Leo is still taking the antibiotic for that infection. Coram Healthcare in Mount Prospect, Illinois has been supplying small, disposable, ballon-like devices that connect to his venus port, squeezing out antibiotic by atmospheric pressure over 30 minutes. They're very small and convenient, but we ween't given enough. Yesterday I called asking why and Venita, the pharmacist, claimed that she was told Leo would be admitted to some Houston hospital, which would provide its own antibiotic. It took no effort to convince her that was wrong and she offerred to FedEx the remaining 8 balloons, along with the corresponding saline solution and heparin to Carla, who would call us upon arrival, at the Burzynski Clinic. After two fruitless calls this morning to Carla, I called Coram asking for a tracking number for Leo's antibiotic and was told that it had been dropped off today at 10:28am. Where? Home, not Houston! Then I got mad, very mad. Fortunately Brian, Coram's pharmacy manager, after admitting that the antibiotic was shipped to the wrong address quickly sensed my anger and realized that no process, no person, no nothing was going to prevent Leo from getting the proper antibiotic dose within 2 hours, in Houston. It came on time and I still owe Brian a phone call.
We weren't just waiting during this time. The only requirement today was to draw some blood from Leo for Internal Review Board approval. But before explaining that ordeal, I want to describe our meeting with a Russian-speaking radiologist/radiation oncologist, Dr. Vsevolod Dolgopolov, the first of his ilk to actually go over Leo's MRIs and explain what we were seeing. He started by showing us Leo's first MRI of June 19, which seemed to show a low-grade tumor, one that wasn't growing very aggressively. The last MRI, though, showed increased contrast, meaning more aggressive growth spots (again no overall increase in size), but it was very difficult to determine the cause, partly because of the 2 doses of radiation. Now came some explanations.
He explained some of the basic cells that make-up the central nervous system and brain, the differences in speed of cell division (for the cells that actually divide -- some naturally don't), and the Myelin Sheath. Normal cells take somewhere around 30 days to divide into 2 new cells. But some cells are a little quicker, for example 25 days. Other cells are faster still, maybe dividing every 5 days. The faster cells divide, it seems, the fewer functions they (can) perform, other than just dividing. We can see where this is headed. He also explained the difference between normal blood vessels in the brain and those created by cancerous cells, which need more energy (glucose) to survive, but create porous vessels. So it's hard to tell apart the signals for creation of blood vessels sent by cancerous cells versus ones sent by normal ones, but there's gadolinium leaking from the cancer-created vessels. He also drew how cancerous cells press on vessels and cells around them, causing leakages of fluid and other problems. Maybe one of the reasons for more contrast was the radiation itself, which can damage the Myelin Sheath to cause leakage of fluid, which contained gadolinium. Fortunately this process seems to be reversible in the long-term. Another reason for enhancement may have been due to leakage caused by the cancerous cells pressing on the vessels. Of course there are other reasons. Anyway, this was a very interesting discussion that provided much more information than we had ever gotten and definitely needs more research. One last bit of advice. He suggested after our return to Chicago we consider talking to a neurosurgeon about placing a shunt to clear some of the fluid that may be getting compressed. The 4th ventricle isn't blocked, but the point is to do this before it becomes a problem. Unfortunately antineoplastons probably won't work fast enough to prevent this potential problem, which seems to happen in most if not all children with brain tumors, who eventually do get a shunt. Back to the house of pain...
The heparin yesterday and this morning didn't help and no blood was returning from the port, so replacing the needle accessing his port seemed to make sense. Wrong. Leo was stuck twice with a thick access needle in his left chest during several unsuccessful attempts -- the numbing cream clearly didn't work. There was no blood, but each stab pierced his gentle skin and caused him so much pain that I was asked to leave the room, beginning to faint. I was finally "allowed" back after they drew blood from his hand, again having stuck him several times before getting a successful return. More pain: never having gotten blood from the port, they didn't leave a needle in there, so one more stab with that fat access needle to infuse the antibiotic and antineoplastons. Leo is obviously so much, much tougher than I am that seconds after this ordeal he was smiling and asking for pizza, which of course he got and enjoyed.
Tomorrow, Wednesday July 19, 2006 at 9:30am at The Clinic we expect to come face-to-face withe antineoplastons for the first time and start Leo's healing process.
This morning was another example of bungling by our medical system. Leo is still taking the antibiotic for that infection. Coram Healthcare in Mount Prospect, Illinois has been supplying small, disposable, ballon-like devices that connect to his venus port, squeezing out antibiotic by atmospheric pressure over 30 minutes. They're very small and convenient, but we ween't given enough. Yesterday I called asking why and Venita, the pharmacist, claimed that she was told Leo would be admitted to some Houston hospital, which would provide its own antibiotic. It took no effort to convince her that was wrong and she offerred to FedEx the remaining 8 balloons, along with the corresponding saline solution and heparin to Carla, who would call us upon arrival, at the Burzynski Clinic. After two fruitless calls this morning to Carla, I called Coram asking for a tracking number for Leo's antibiotic and was told that it had been dropped off today at 10:28am. Where? Home, not Houston! Then I got mad, very mad. Fortunately Brian, Coram's pharmacy manager, after admitting that the antibiotic was shipped to the wrong address quickly sensed my anger and realized that no process, no person, no nothing was going to prevent Leo from getting the proper antibiotic dose within 2 hours, in Houston. It came on time and I still owe Brian a phone call.
We weren't just waiting during this time. The only requirement today was to draw some blood from Leo for Internal Review Board approval. But before explaining that ordeal, I want to describe our meeting with a Russian-speaking radiologist/radiation oncologist, Dr. Vsevolod Dolgopolov, the first of his ilk to actually go over Leo's MRIs and explain what we were seeing. He started by showing us Leo's first MRI of June 19, which seemed to show a low-grade tumor, one that wasn't growing very aggressively. The last MRI, though, showed increased contrast, meaning more aggressive growth spots (again no overall increase in size), but it was very difficult to determine the cause, partly because of the 2 doses of radiation. Now came some explanations.
He explained some of the basic cells that make-up the central nervous system and brain, the differences in speed of cell division (for the cells that actually divide -- some naturally don't), and the Myelin Sheath. Normal cells take somewhere around 30 days to divide into 2 new cells. But some cells are a little quicker, for example 25 days. Other cells are faster still, maybe dividing every 5 days. The faster cells divide, it seems, the fewer functions they (can) perform, other than just dividing. We can see where this is headed. He also explained the difference between normal blood vessels in the brain and those created by cancerous cells, which need more energy (glucose) to survive, but create porous vessels. So it's hard to tell apart the signals for creation of blood vessels sent by cancerous cells versus ones sent by normal ones, but there's gadolinium leaking from the cancer-created vessels. He also drew how cancerous cells press on vessels and cells around them, causing leakages of fluid and other problems. Maybe one of the reasons for more contrast was the radiation itself, which can damage the Myelin Sheath to cause leakage of fluid, which contained gadolinium. Fortunately this process seems to be reversible in the long-term. Another reason for enhancement may have been due to leakage caused by the cancerous cells pressing on the vessels. Of course there are other reasons. Anyway, this was a very interesting discussion that provided much more information than we had ever gotten and definitely needs more research. One last bit of advice. He suggested after our return to Chicago we consider talking to a neurosurgeon about placing a shunt to clear some of the fluid that may be getting compressed. The 4th ventricle isn't blocked, but the point is to do this before it becomes a problem. Unfortunately antineoplastons probably won't work fast enough to prevent this potential problem, which seems to happen in most if not all children with brain tumors, who eventually do get a shunt. Back to the house of pain...
The heparin yesterday and this morning didn't help and no blood was returning from the port, so replacing the needle accessing his port seemed to make sense. Wrong. Leo was stuck twice with a thick access needle in his left chest during several unsuccessful attempts -- the numbing cream clearly didn't work. There was no blood, but each stab pierced his gentle skin and caused him so much pain that I was asked to leave the room, beginning to faint. I was finally "allowed" back after they drew blood from his hand, again having stuck him several times before getting a successful return. More pain: never having gotten blood from the port, they didn't leave a needle in there, so one more stab with that fat access needle to infuse the antibiotic and antineoplastons. Leo is obviously so much, much tougher than I am that seconds after this ordeal he was smiling and asking for pizza, which of course he got and enjoyed.
Tomorrow, Wednesday July 19, 2006 at 9:30am at The Clinic we expect to come face-to-face withe antineoplastons for the first time and start Leo's healing process.
posted by Yury at 8:00 PM
1 Comments:
Yury,
Thanks for keeping us up to date on the details. Not a day goes by that we do not think of Leo and his battle.
May G-d grant him the strength to defeat this challenge.
Vlad and Irina
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