Friday, April 29, 2005
Friday Update
Mom had a blood test and the -great- results are in: Hemoglobin 8.9 (yea! fall of only .2); Platelet count: 25,000. It's unclear exactly how long the platelets do their thing before they die off. I've read 5-7 days. Her doctor told her that if she notices ANYTHING out of the ordinary over the weekend....unexplained rashes, bruises, bleeding of any sort....head straight for the ER. I booked a ticket to head down there the weekend of May 20th. That's all for now!
Thursday, April 28, 2005
Mission Platelets: Accomplished
Mom got her platelets around 4:15 yesterday afternoon. The next blood test will either be Friday or the regular test from Monday. She sounded great on the phone last night--relieved. This is one crazy roller coaster.
Wednesday, April 27, 2005
Platelet Transfusion is Underway
This morning, mom started basically "sweating blood"--pinpoints of blood appeared in the pores on her legs. That's truly a sign that it's time to get more platelets. When her doctor called her back, he sent her straight to the hospital. Thankfully, I'd briefed Phil...and he was able to take her and stay with her.
Tuesday, April 26, 2005
Results from Monday's Blood Test
Hemoglobin was great: 9.1. Platelets, not so good. She's down to 12,000. (Remember, the low end of normal is 150,000.) And while platelet transfusions are possible--and usually administered when the patient's level hits 10,000--they lose effectiveness with frequency.
Today's level of being freaked out: HIGH. This is because a.) she's already experiencing spontaneous bruising; and b.) the nurse told her today that a transfusion of platelets is not possible until you start bleeding--which is NOT true. I've been on-line for the past couple of hours, and will arm her with all the info I could find on the subject from reputable web sites. I urged her to call her doctor tomorrow--and I'll make SURE she does after I talk with her in the morning.
I also stumbled upon a brand new drug that was just "fast-tracked" for approval from the FDA--and may be available to patients. It's a relative of Thalidomide, of all things--without the horrid side effects.
I've learned some new things about MDS tonight that I didn't know before, and pretty much none of them is good.
Today's level of being freaked out: HIGH. This is because a.) she's already experiencing spontaneous bruising; and b.) the nurse told her today that a transfusion of platelets is not possible until you start bleeding--which is NOT true. I've been on-line for the past couple of hours, and will arm her with all the info I could find on the subject from reputable web sites. I urged her to call her doctor tomorrow--and I'll make SURE she does after I talk with her in the morning.
I also stumbled upon a brand new drug that was just "fast-tracked" for approval from the FDA--and may be available to patients. It's a relative of Thalidomide, of all things--without the horrid side effects.
I've learned some new things about MDS tonight that I didn't know before, and pretty much none of them is good.
Sunday, April 24, 2005
Sunday, Sunday!!!
A great weekend wraps up a lovely week. First and foremost, Mom made it through all five days of shots with flying colors!! She felt a little queasy one day; another, she was really knocked out by a massive dose of benadryl, administered to help with injection site reactions. She also got blood in the middle of the week. She says she has massive bruising from the shots (two sets daily, in different locations each time)which was not unexpected, due to the fact that she's so low on platelets. But she's very sore. Other than that--she feels quite wonderful. She has three weeks off until the next round of pin cushioning.
I took barista training on Saturday at church. That's right, we have a coffee ministry. (Welcome to Seattle!) I can hardly wait to get started.
Friday, Bill got home from a long stint in Las Vegas. The three of us & the Costanza's went over to a nearby middle school and...ran. Yes, the woman whose lifelong motto has been "Run if you're being chased" has started running. Well, running is a little generous. I think I'm actually still in the attempting to run phase. Jack, Nick & Claire are on their school's track team, so Kari got the bright idea that they actually should train for this--so I've been puffing around the oval with Jack. Bill and I even got running shoes today! Running shoes! --Be sure to check out the new photos below--
I took barista training on Saturday at church. That's right, we have a coffee ministry. (Welcome to Seattle!) I can hardly wait to get started.
Friday, Bill got home from a long stint in Las Vegas. The three of us & the Costanza's went over to a nearby middle school and...ran. Yes, the woman whose lifelong motto has been "Run if you're being chased" has started running. Well, running is a little generous. I think I'm actually still in the attempting to run phase. Jack, Nick & Claire are on their school's track team, so Kari got the bright idea that they actually should train for this--so I've been puffing around the oval with Jack. Bill and I even got running shoes today! Running shoes! --Be sure to check out the new photos below--
Monday, April 18, 2005
One Down, 4 to Go!
Mom got her first shot today, and so far: no reaction. She said she felt as good as I thought she sounded. This treatment is so new, she is the first one to get Vidaza for MDS in her doctor's office. What a trailblazer she is.
However--the blood count over the week plummeted to 7.8, so she'll be getting her usual two pints tomorrow.
Pray, pray, pray!!!
However--the blood count over the week plummeted to 7.8, so she'll be getting her usual two pints tomorrow.
Pray, pray, pray!!!
Sunday, April 17, 2005
I should have taken my camera; Jack and Nick and I took Mocha to Dash Point beach today, and she was pretty hilarious. (She is currently sleeping EXTREMELY DEEPLY at my feet, snoring away.)
She ran for about 2-hours straight...elapsed time in "Seabiscuit mode" was about an hour. Much of that activity involved running straight at us like a bullet--a terrifying sight. She nailed me once, Nick a couple of times and a little boy name Khalil once. Khalil goes to school w/the boys--he's probably in 2nd or 3rd grade. Nice little kid--it felt like it was his first time of the beach, he was asking me what everything was. "What's this?" "A sand dollar." "What's this?" "The shell of a crab." "What's this?" "A clam." I told him all about the little creatures that used to live in these shells, and he seemed fascinated. His Dad was there, but was off collecting driftwood or something, so Khalil hung with us for a while.
We also saw TWO eagles!! (Or, the same one twice, can't be sure.) And we started a collection of sea glass.
We had to hose Mocha down and dry her off when we got home. She was very good about it, I was quite surprised.
She ran for about 2-hours straight...elapsed time in "Seabiscuit mode" was about an hour. Much of that activity involved running straight at us like a bullet--a terrifying sight. She nailed me once, Nick a couple of times and a little boy name Khalil once. Khalil goes to school w/the boys--he's probably in 2nd or 3rd grade. Nice little kid--it felt like it was his first time of the beach, he was asking me what everything was. "What's this?" "A sand dollar." "What's this?" "The shell of a crab." "What's this?" "A clam." I told him all about the little creatures that used to live in these shells, and he seemed fascinated. His Dad was there, but was off collecting driftwood or something, so Khalil hung with us for a while.
We also saw TWO eagles!! (Or, the same one twice, can't be sure.) And we started a collection of sea glass.
We had to hose Mocha down and dry her off when we got home. She was very good about it, I was quite surprised.
Tuesday, April 12, 2005
Mom starts treatment on Monday
Her blood test results today were great: 9.1, with NO change on the platelets. !!! I have no idea how one week, she can have a huge drop, and the next--nothing. Not that I'm complaining. This week.
So. She starts on Vidaza next Monday, the 18th. Five days of shots. They've given her anti-nausea drugs to take, but the big side effect to keep an eye on is the whole blood level thing. And, if she gets any sort of fever or infection, it's straight to the hospital. The whole treatment could be easy...or not. And the doctor today mentioned the possibility of some hair loss! I haven't seen anything like that in my research. But then again, I'm not a doctor. I just play one on the Internet. I will look into that some more.
Jack was BITTEN in school today--by a 4th grader! Unbelieveable!!! The school counselor called me around 10 this morning, and you know when the first words out of her mouth are, "Jack is here in the office with me, and he's okay" something bad has happened. So I started to cry even before she told me what was going on, but I had to talk as if I was a strong parent who handled news like this every day who was not crying.
This is what happened: Jack was in math class, doing his work on the white board (chalkboards apparently no longer exist in school!) when he dropped the marker. He went over to retrieve it, and when he came up, Biter Boy was erasing Jack's work! Unprovoked! So Jack pushed Fang's papers on the desk--and the little delinquent grabbed Jack's hand and bit it! Hours later, I can still see both the upper and lower teeth marks. At this point, it does not appear that Cujo will need braces. Anyway. Jack did not cry, handled the whole thing very maturely, probably much more maturely than his mother. The school counselor said they take this very seriously, and if Chomper sinks his teeth into one more kid, he'll be suspended. Guess Jack was just his appetizer.
So. She starts on Vidaza next Monday, the 18th. Five days of shots. They've given her anti-nausea drugs to take, but the big side effect to keep an eye on is the whole blood level thing. And, if she gets any sort of fever or infection, it's straight to the hospital. The whole treatment could be easy...or not. And the doctor today mentioned the possibility of some hair loss! I haven't seen anything like that in my research. But then again, I'm not a doctor. I just play one on the Internet. I will look into that some more.
Jack was BITTEN in school today--by a 4th grader! Unbelieveable!!! The school counselor called me around 10 this morning, and you know when the first words out of her mouth are, "Jack is here in the office with me, and he's okay" something bad has happened. So I started to cry even before she told me what was going on, but I had to talk as if I was a strong parent who handled news like this every day who was not crying.
This is what happened: Jack was in math class, doing his work on the white board (chalkboards apparently no longer exist in school!) when he dropped the marker. He went over to retrieve it, and when he came up, Biter Boy was erasing Jack's work! Unprovoked! So Jack pushed Fang's papers on the desk--and the little delinquent grabbed Jack's hand and bit it! Hours later, I can still see both the upper and lower teeth marks. At this point, it does not appear that Cujo will need braces. Anyway. Jack did not cry, handled the whole thing very maturely, probably much more maturely than his mother. The school counselor said they take this very seriously, and if Chomper sinks his teeth into one more kid, he'll be suspended. Guess Jack was just his appetizer.
Monday, April 11, 2005
Thursday, April 07, 2005
The Big 4-4
I've been having a lovely birthday. It started on Saturday with a pre-birthday party, since the 3 of us were heading up to Victoria, BC first thing Sunday morning. Thanks, everyone! Victoria was great. Did the Buchart Garden thing, the Butterfly Garden thing (although it got a little creepy with ALL those insects landing all over you....), the Vancouver Island wine country thing, and the Big Birthday Dinner thing. We walked all over town, and saw so many parts of the city we'd never seen before.
Called mom last night; her blood test showed her at a 9.9 this week--fabulous! Her platelets only fell a thousand, so she's at 21k. She's heading to UCLA this afternoon to check out the treatment for MDS. Keep those prayers a-comin'.......and, thanks!!!
Called mom last night; her blood test showed her at a 9.9 this week--fabulous! Her platelets only fell a thousand, so she's at 21k. She's heading to UCLA this afternoon to check out the treatment for MDS. Keep those prayers a-comin'.......and, thanks!!!
Friday, April 01, 2005
April Fool's Day
So I head into work today, feeling rather surly. Bill coughed all night long, keeping me awake. On the rare occasions that he wasn't coughing, my toe was throbbing, and that kept me awake. Then we head out to school first thing in the morning for our "Student Led Conference"--but I'm pretty sure Jack has the time wrong--and sure enough, the teacher isn't there. Since I need to get to work, I storm off, with no parent-teacher-student conference. I walk towards my "pod" (that's right, we don't even have cubicles, for crying out loud, we have pods....) and Steve says, "Hey! Clean up yer desk!" And I'm thinking, "Mind your own business, punk!" And I look down my aisle.... and I realize that, I am in fact, the April Fool. My little team had decorated my desk to a birthday splendor never seen before on the third floor.
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