8/28: Preparing for the MRI
Yesterday was a good, fairly uneventful day for Leo. Today seemed to be an even better one. Leo smiled and laughed and even make a joke! So all in all, a good day. Anna and Nina were buzzing around Leo like a couple of little bees tonight, giving him something to drink, bringing him a blanket, stroking his arm, and talking to and playing with him. They are such sweet girls. But not such a good day for the home nursing we've gotten from OptionCare, so I've already made calls to other agencies to see who else can do pediatric home health. I really can't believe this...
It started last night when nurse Gail called to tell us that she would be at our house between 9:30am and 10:30am. I told her that our agreement was for 9am. She said she'd have to call the supervisor because there was no way she could be here by 9. Fine, I said, do whatever you need, but someone better be here by 9. She called back and said she would try to be here as close as possible to 9am, but it would still most likely be 9:30! Was she for real -- what part of "9" did she not understand!? I told her to call back her supervisor and get someone else because 9am was the only option. She called back a little later and told us, sure enough, that she would be here by 9, and she was. But this turned into a case of "careful what you wish for, it might come true."
Nurse Gail showed-up right on time, but that's about the only thing she did right. I had disconnected Leo's pump earlier, flushed the port with saline, then heparin. Since our return from Houston, the port hasn't given us too much grief. Nurse Gail, though, got grief. She couldn't get a blood return no matter how hard she tried, which wasn't very hard. She was only getting the saline and/or heparin return (mixed with a little blood) that she had been using to try to clear-up a potential clot. So after only a couple feeble attempts she just gave up and left, telling us to call the nursing supervisor to get someone else to come.
Surprisingly a few hours later, I got a fax from the lab with today's results. How could this be? I thought there was no blood to be gotten. A few minutes later, I got a call from Dr. Szymkowski (who calls herself Dr. Barbara for obvious reasons), frantically asking me what was going on. "With what?" I asked. She told me to look at the platelet count: 10,000. The "normal" range was from 150,000 - 400,000, and Leo was in the range Friday. I immediately understood what Gail had done: she dropped-off the mixture of blood, saline, and heparin to the lab! While I had Dr. Baraba on the phone, I asked for an order of TPA, since the port didn't work in the morning, and had the order faxed in just a few minutes. Later, Dr. Kroin also called frantically asking the same question.
After a few explatives that may have annoyed my neighbors at work, I called the nursing supervisor and got our usual home health nurse to come in the evening. But she said the TPA would be delivered tomorrow. What!? What was the point of someone coming tonight, when we know the port isn't working!? I said the nurse should pick-up TPA on the way to our house. To make a long, painful story just a little shorter, the TPA was couriered over just as I got home; Candice showed-up at about 7:30pm to draw blood -- and did so successfully, without needing TPA; and I go the perfectly normal (290,000) results at about 10pm.
I just disconnected Leo in preparation for tomorrow's MRI, which will be at 9am CDT. We'll be praying for the scan to show that the treatment is working and even though the symptoms have gotten worse, it's because of tumor breakdown. On the prayer front, please pray for two other children fighting similar battles: James Neubauer, who's in the hospital with an infection, and Chase Sammut, who was in bad shape in the hospital, but now seems better.
Finally, a request to anyone with any kind of "connection" -- regardless how many degrees of separation -- at the FDA. I read an interesting article today about chemists at the University of Illinois at Champaign, who have discovered molecules that cause apoptosis (programmed cell death) in cancerous cells, while leaving healthy cells unharmed. This is similar to the theory of Dr. Burzynski and they unknowingly compared their research to his (one of the genes that Dr. Burzynski targets is the p53 gene and these guys claim their method works faster and more reliably). The link to their research is here: http://www.scs.uiuc.edu/~phgroup/publications.html. It's the information under section 39, currently at the very top.
I sent an email to professor Paul Hergenrother, the leader of the research it seems, and got exactly the answer I thought I would get: this is all pre-trial, meaning they're still testing this on lab rats, not humans. Having read about the speed (or lack thereof) at which the FDA functions and the absolute lack of time that Leo and other children have, we need to get the FDA off their duffs and fast-tracking this research. Not that Leo needs to be a guinea pig, but they claim the toxicity is quite low, so more time shouldn't be wasted -- they discovered this in 2003!
It started last night when nurse Gail called to tell us that she would be at our house between 9:30am and 10:30am. I told her that our agreement was for 9am. She said she'd have to call the supervisor because there was no way she could be here by 9. Fine, I said, do whatever you need, but someone better be here by 9. She called back and said she would try to be here as close as possible to 9am, but it would still most likely be 9:30! Was she for real -- what part of "9" did she not understand!? I told her to call back her supervisor and get someone else because 9am was the only option. She called back a little later and told us, sure enough, that she would be here by 9, and she was. But this turned into a case of "careful what you wish for, it might come true."
Nurse Gail showed-up right on time, but that's about the only thing she did right. I had disconnected Leo's pump earlier, flushed the port with saline, then heparin. Since our return from Houston, the port hasn't given us too much grief. Nurse Gail, though, got grief. She couldn't get a blood return no matter how hard she tried, which wasn't very hard. She was only getting the saline and/or heparin return (mixed with a little blood) that she had been using to try to clear-up a potential clot. So after only a couple feeble attempts she just gave up and left, telling us to call the nursing supervisor to get someone else to come.
Surprisingly a few hours later, I got a fax from the lab with today's results. How could this be? I thought there was no blood to be gotten. A few minutes later, I got a call from Dr. Szymkowski (who calls herself Dr. Barbara for obvious reasons), frantically asking me what was going on. "With what?" I asked. She told me to look at the platelet count: 10,000. The "normal" range was from 150,000 - 400,000, and Leo was in the range Friday. I immediately understood what Gail had done: she dropped-off the mixture of blood, saline, and heparin to the lab! While I had Dr. Baraba on the phone, I asked for an order of TPA, since the port didn't work in the morning, and had the order faxed in just a few minutes. Later, Dr. Kroin also called frantically asking the same question.
After a few explatives that may have annoyed my neighbors at work, I called the nursing supervisor and got our usual home health nurse to come in the evening. But she said the TPA would be delivered tomorrow. What!? What was the point of someone coming tonight, when we know the port isn't working!? I said the nurse should pick-up TPA on the way to our house. To make a long, painful story just a little shorter, the TPA was couriered over just as I got home; Candice showed-up at about 7:30pm to draw blood -- and did so successfully, without needing TPA; and I go the perfectly normal (290,000) results at about 10pm.
I just disconnected Leo in preparation for tomorrow's MRI, which will be at 9am CDT. We'll be praying for the scan to show that the treatment is working and even though the symptoms have gotten worse, it's because of tumor breakdown. On the prayer front, please pray for two other children fighting similar battles: James Neubauer, who's in the hospital with an infection, and Chase Sammut, who was in bad shape in the hospital, but now seems better.
Finally, a request to anyone with any kind of "connection" -- regardless how many degrees of separation -- at the FDA. I read an interesting article today about chemists at the University of Illinois at Champaign, who have discovered molecules that cause apoptosis (programmed cell death) in cancerous cells, while leaving healthy cells unharmed. This is similar to the theory of Dr. Burzynski and they unknowingly compared their research to his (one of the genes that Dr. Burzynski targets is the p53 gene and these guys claim their method works faster and more reliably). The link to their research is here: http://www.scs.uiuc.edu/~phgroup/publications.html. It's the information under section 39, currently at the very top.
I sent an email to professor Paul Hergenrother, the leader of the research it seems, and got exactly the answer I thought I would get: this is all pre-trial, meaning they're still testing this on lab rats, not humans. Having read about the speed (or lack thereof) at which the FDA functions and the absolute lack of time that Leo and other children have, we need to get the FDA off their duffs and fast-tracking this research. Not that Leo needs to be a guinea pig, but they claim the toxicity is quite low, so more time shouldn't be wasted -- they discovered this in 2003!
posted by Yury at 9:53 PM
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