7/14: Fresh, Sweet Peas
Leo and I picked and ate a few green peas this morning. Leo and Nina dropped the entire little envelope of dried peas into the ground a while back and most of the little plants that sprouted now have pods. I think Anna decided that morning to visit some of the grandparents, knowing that Leo and Nina would share in their future bounty. I'm not positive that the peas had fully ripened, but the pods were big and plump and shiny. The peas were slightly crunchy but then sweet like honey. We're hoping for a bumper crop, which will include cherry tomatoes and cucumbers as well!
Today was a better day for Leo. His symptoms did not seem to get worse; in fact, possibly even a little bit better. Maybe it's because instead of trying to cut the decadron pill exactly in half, for a 2mg dose, I cut it slightly off center for a little bit more. I don't know and I don't care because today was a "good" day. Of course that does mean I have several new bruises and that glass jaw of mine is becoming bulletproof, but that's a small price to pay. I think Leo may have even eaten more than I today, which seems like it should be a good thing, but not necessarily because he's still terribly constipated and his abdomen is hard. But he ate a bowl and a half of cold beet borscht, which should help.
Before the peas actually, home nurse Pat came again. She's Indian, but born and raised in Jamaica and is very nice. She tried to get some blood for another test, but without luck, so she suggested "cleaning the line" with TPA. For you medical school dropouts, that means to clean that semi-permanent IV thingie in Leo's upper chest with something that dissolves blood goop/sludge (those are technical terms). Supposedly various blood cells decide to stick to whatever they can and restrict blood draws, although the flushing and antibiotics are fine. She said it's similar to plaque forming in arteries. Anyway, this generated about a hundred phone calls among Drs. Kroin (Leo's pediatrician), Goldman (the hemotologist/oncologist at Children's), and Goodell (hemoc at Lutheran). Goldman thought it was silly for us to drive all the way to Children's and said to call Goodell at nearby Lutheran. By the time Goodell's office returned my message telling me they wouldn't do this because Leo isn't their patient, it was too late to go to Children's, especially with Friday traffic. So Dr. Kroin helped get this set-up after Leo's MRI tomorrow morning at Lutheran, but for some reason I'm not holding my breath. Update 8/31/2006: The following image shows a scan of the letter from Dr. Goodell (click on it to enlarge):
Nina got a 101.6 fever, which also scared us for a bit, but some Ibuprofen cleared that right up and she was as playful as ever, as evidenced by her generous use of the word "nyet" ("no" in Russian) said very frankly. I think we're now paranoid about every fever, every cough, every fall, every everything...
I spoke to Katya's uncle Arkady tonight, who is a wealth of knowledge and promised to provide even more information and research, in addition to all those researchers, analysts, and investors. Unfortunately Katya's latest MRI didn't provide the good news everyone was hoping for, but she hit the median survival time for DIPG, a major milestone! It's actually getting hard to follow-up on all the research, especially because it's so technical and there's so much written on almost every topic. I feel homework coming on for the Grandparents, among others, to follow-up on all this research while we're in Houston.
Dozens of people have insisted that we provide a way for people to donate. So there's now little PayPal icon now among the links. We are not one of those 501(c)(3) organizations although someone offered to help set-up one (and I'll probably take him up on that offer). That means that, as far as I know and I'm far from being a legal or tax expert, these "donations" are not tax-deductible and may have to be considered as gifts.
We must've had a really good day because Leo is laughing in his sleep while I'm typing this. Good night.
2 days 'til Houston...
Today was a better day for Leo. His symptoms did not seem to get worse; in fact, possibly even a little bit better. Maybe it's because instead of trying to cut the decadron pill exactly in half, for a 2mg dose, I cut it slightly off center for a little bit more. I don't know and I don't care because today was a "good" day. Of course that does mean I have several new bruises and that glass jaw of mine is becoming bulletproof, but that's a small price to pay. I think Leo may have even eaten more than I today, which seems like it should be a good thing, but not necessarily because he's still terribly constipated and his abdomen is hard. But he ate a bowl and a half of cold beet borscht, which should help.
Before the peas actually, home nurse Pat came again. She's Indian, but born and raised in Jamaica and is very nice. She tried to get some blood for another test, but without luck, so she suggested "cleaning the line" with TPA. For you medical school dropouts, that means to clean that semi-permanent IV thingie in Leo's upper chest with something that dissolves blood goop/sludge (those are technical terms). Supposedly various blood cells decide to stick to whatever they can and restrict blood draws, although the flushing and antibiotics are fine. She said it's similar to plaque forming in arteries. Anyway, this generated about a hundred phone calls among Drs. Kroin (Leo's pediatrician), Goldman (the hemotologist/oncologist at Children's), and Goodell (hemoc at Lutheran). Goldman thought it was silly for us to drive all the way to Children's and said to call Goodell at nearby Lutheran. By the time Goodell's office returned my message telling me they wouldn't do this because Leo isn't their patient, it was too late to go to Children's, especially with Friday traffic. So Dr. Kroin helped get this set-up after Leo's MRI tomorrow morning at Lutheran, but for some reason I'm not holding my breath. Update 8/31/2006: The following image shows a scan of the letter from Dr. Goodell (click on it to enlarge):
Nina got a 101.6 fever, which also scared us for a bit, but some Ibuprofen cleared that right up and she was as playful as ever, as evidenced by her generous use of the word "nyet" ("no" in Russian) said very frankly. I think we're now paranoid about every fever, every cough, every fall, every everything...I spoke to Katya's uncle Arkady tonight, who is a wealth of knowledge and promised to provide even more information and research, in addition to all those researchers, analysts, and investors. Unfortunately Katya's latest MRI didn't provide the good news everyone was hoping for, but she hit the median survival time for DIPG, a major milestone! It's actually getting hard to follow-up on all the research, especially because it's so technical and there's so much written on almost every topic. I feel homework coming on for the Grandparents, among others, to follow-up on all this research while we're in Houston.
Dozens of people have insisted that we provide a way for people to donate. So there's now little PayPal icon now among the links. We are not one of those 501(c)(3) organizations although someone offered to help set-up one (and I'll probably take him up on that offer). That means that, as far as I know and I'm far from being a legal or tax expert, these "donations" are not tax-deductible and may have to be considered as gifts.
We must've had a really good day because Leo is laughing in his sleep while I'm typing this. Good night.
2 days 'til Houston...
posted by Yury at 10:21 PM
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