October 31, 2008
If you are brave, read this post on our buddy, Max's, site.
Friday, October 31, 2008
Thursday, October 30, 2008
Candidates Forum and Other Delights
October 30, 2008
What would you do, if you had risen at 5:00 a.m., driven three hours (mostly in rush hour traffic), sat for another four hours in a hospital waiting room with nothing to eat or drink since the night before, had a doctor sedate you and drill core samples with a corkscrew shaped needle from both of your hips, and driven another two and a half hours home?
Go to the Chamber of Commerce Candidates Forum?
That was Erin's choice last Monday evening, even knowing that she would have to climb back in the van a few hours later for another drive into Houston, so she could face another long clinic wait and the unknown of an experimental IV chemo infusion.
You've heard me say it before, but what Congressman has ever made a child smile more than Chet Edwards (TX-17) has? What Congressman would choose to spend all day the Saturday before election day with a non-voter (Erin will attend lunch and the Aggie game with Chet on Saturday)?
It's hard to tell exactly how Erin is doing these days. I usually have a pretty subtle insight based on her demeanor and outlook. Right now there's a lot of noise interfering with a true read. She still has allergy symptoms, especially when she first wakes up. She hasn't recovered completely from her bone marrow aspirations. The ten plus hours in the car on Monday and Tuesday have added to her general stiffness. The dexamethasone makes her hungry and accentuates the negative aspects of her personality. Her back hurts (although not really in THE SPOT that always raises alarms). Mainly, she's tired and a bit grumpy.
But not tired enough to fore go her concession stand duties at family fun night at Jane Long when we got back from Houston on Tuesday. . .or school the rest of the week. . .or piano lessons on Wednesday. . .or pumpkin carving last Sunday. . .or a fall festival party with Jackson and the Rosses last Saturday night. Last night alone, she made final preparations for her role in her science class debate over drilling in the Alaskan natural Wildlife Refuge, practiced her speech for her Day of the Dead project in Spanish, and added the final touches to her 3-D Invent-Your-Own-Continent project for social studies. Nor is she planning on missing Halloween festivities at the church, trick or treating, nor the haunted house at the ice rink tomorrow. And just try and keep her home from seeing the Aggies on Saturday.
Most of you probably have your hand on the receiver, poised to dial Child Protective Services. You think, here's a mom who knows that her child is tired and hurting and yet she continues to ride her hard and puts her up wet. Let me tell you that in all these choices, Erin rules the roost. If she want to stay home, she stays home; if she wants to make an appearance, she makes an appearance; if she wants to go, she goes. I'm just her vehicle. She still has things she wishes she could do, but can't right now. Most painfully, she is still sidelined from soccer, but aching to get back into the game.
I wish I could bottle her determination. It certainly inspires me. It probably does the same for you.
[cue swelling background music]
If you are inspired but don't know how to channel that feeling, here are two suggestions:
1. Go clean out a closet, or your garage, or the attic, or your storage shed. Find something that you don't use anymore, but that has plenty of good life left in it. Donate it to our garage sale. You can bring the things you find to me any time in the next eight days (before Friday, November 7 at 5:00). If you have a good friend or two, ask them to do the same. If, heaven forbid, you love to shop garage sales, drop by 200 Bernburg Lane in College Station a week from Saturday and buy your stuff (or someone else's stuff) back.
2. Make yourself a cup of tea or grab yourself a cold one. Get out your checkbook or click on this link to Lunch for Life (all proceeds go to support neuroblastoma research through the Children's Neuroblastoma Cancer Foundation). Enjoy your beverage and make a donation (checks should go to Children's Neuroblastoma Cancer Foundation/39651 Treasury Center/Chicago, IL 60694-9600).
What would you do, if you had risen at 5:00 a.m., driven three hours (mostly in rush hour traffic), sat for another four hours in a hospital waiting room with nothing to eat or drink since the night before, had a doctor sedate you and drill core samples with a corkscrew shaped needle from both of your hips, and driven another two and a half hours home?
Go to the Chamber of Commerce Candidates Forum?
That was Erin's choice last Monday evening, even knowing that she would have to climb back in the van a few hours later for another drive into Houston, so she could face another long clinic wait and the unknown of an experimental IV chemo infusion.
You've heard me say it before, but what Congressman has ever made a child smile more than Chet Edwards (TX-17) has? What Congressman would choose to spend all day the Saturday before election day with a non-voter (Erin will attend lunch and the Aggie game with Chet on Saturday)?
It's hard to tell exactly how Erin is doing these days. I usually have a pretty subtle insight based on her demeanor and outlook. Right now there's a lot of noise interfering with a true read. She still has allergy symptoms, especially when she first wakes up. She hasn't recovered completely from her bone marrow aspirations. The ten plus hours in the car on Monday and Tuesday have added to her general stiffness. The dexamethasone makes her hungry and accentuates the negative aspects of her personality. Her back hurts (although not really in THE SPOT that always raises alarms). Mainly, she's tired and a bit grumpy.
But not tired enough to fore go her concession stand duties at family fun night at Jane Long when we got back from Houston on Tuesday. . .or school the rest of the week. . .or piano lessons on Wednesday. . .or pumpkin carving last Sunday. . .or a fall festival party with Jackson and the Rosses last Saturday night. Last night alone, she made final preparations for her role in her science class debate over drilling in the Alaskan natural Wildlife Refuge, practiced her speech for her Day of the Dead project in Spanish, and added the final touches to her 3-D Invent-Your-Own-Continent project for social studies. Nor is she planning on missing Halloween festivities at the church, trick or treating, nor the haunted house at the ice rink tomorrow. And just try and keep her home from seeing the Aggies on Saturday.
Most of you probably have your hand on the receiver, poised to dial Child Protective Services. You think, here's a mom who knows that her child is tired and hurting and yet she continues to ride her hard and puts her up wet. Let me tell you that in all these choices, Erin rules the roost. If she want to stay home, she stays home; if she wants to make an appearance, she makes an appearance; if she wants to go, she goes. I'm just her vehicle. She still has things she wishes she could do, but can't right now. Most painfully, she is still sidelined from soccer, but aching to get back into the game.
I wish I could bottle her determination. It certainly inspires me. It probably does the same for you.
[cue swelling background music]
If you are inspired but don't know how to channel that feeling, here are two suggestions:
1. Go clean out a closet, or your garage, or the attic, or your storage shed. Find something that you don't use anymore, but that has plenty of good life left in it. Donate it to our garage sale. You can bring the things you find to me any time in the next eight days (before Friday, November 7 at 5:00). If you have a good friend or two, ask them to do the same. If, heaven forbid, you love to shop garage sales, drop by 200 Bernburg Lane in College Station a week from Saturday and buy your stuff (or someone else's stuff) back.
2. Make yourself a cup of tea or grab yourself a cold one. Get out your checkbook or click on this link to Lunch for Life (all proceeds go to support neuroblastoma research through the Children's Neuroblastoma Cancer Foundation). Enjoy your beverage and make a donation (checks should go to Children's Neuroblastoma Cancer Foundation/39651 Treasury Center/Chicago, IL 60694-9600).
Tuesday, October 28, 2008
Pemetrexed
October 28, 2008
Perhaps we will remember this day as the first day of a new experimental treatment (pemetrexed) that will send Erin's neuroblastoma running for cover.
Clinic, in fact, ran as smoothly as it ever does. Only two bottlenecks today: the pharmacy didn't set speed records preparing the drug (though I have to admit things could have moved slower than they did) and Erin decided to do her best imitation of a salt-loving, overweight, stressed-out, middle-aged adult and let her blood pressure zoom up right at the end of the ten minute infusion. A variety of doctors, nurses, and techs had to wander over and render the opinion that it didn't seem to be much to worry about. We checked her vitals a few more times afterward and it headed down on its own. By the time we got back to Bryan (after a medicinal stop at Pauli's for pasta and The Children's Place for some new duds for the growing Erin) she recorded a more Erin-like blood pressure (105/72).
We'll check counts locally on Monday, run to Houston for an office visit a week from Thursday (11/6) and scan the following Thursday (11/13) to see what, if any, effect this drug will have on Erin's neuroblastoma.
The theory behind pemetrexed is sound. Pemetrexed blocks folates in cells. Folate is essential to cell growth and division. Erin has to take a vitamin with folic acid and have a B-12 shot (not a popular requirement for my middle school gal). She also has to take a three day cycle of dexamethasone (a steroid) to help with any skin rashes she might develop as a reaction to the drug.
Perhaps we will remember this day as the first day of a new experimental treatment (pemetrexed) that will send Erin's neuroblastoma running for cover.
Clinic, in fact, ran as smoothly as it ever does. Only two bottlenecks today: the pharmacy didn't set speed records preparing the drug (though I have to admit things could have moved slower than they did) and Erin decided to do her best imitation of a salt-loving, overweight, stressed-out, middle-aged adult and let her blood pressure zoom up right at the end of the ten minute infusion. A variety of doctors, nurses, and techs had to wander over and render the opinion that it didn't seem to be much to worry about. We checked her vitals a few more times afterward and it headed down on its own. By the time we got back to Bryan (after a medicinal stop at Pauli's for pasta and The Children's Place for some new duds for the growing Erin) she recorded a more Erin-like blood pressure (105/72).
We'll check counts locally on Monday, run to Houston for an office visit a week from Thursday (11/6) and scan the following Thursday (11/13) to see what, if any, effect this drug will have on Erin's neuroblastoma.
The theory behind pemetrexed is sound. Pemetrexed blocks folates in cells. Folate is essential to cell growth and division. Erin has to take a vitamin with folic acid and have a B-12 shot (not a popular requirement for my middle school gal). She also has to take a three day cycle of dexamethasone (a steroid) to help with any skin rashes she might develop as a reaction to the drug.
Monday, October 27, 2008
Ways to Help--Part I
October 27, 2008
The BMA (bone marrow aspiration) Gang left about an hour ago for the drive into Houston. At Texas Children's this procedure is done on a first come, first served basis: early arrivers get in line to do labs, then (after another wait) have an office visit. Once cleared, they race to another floor and get in line again to do another physical and health history questionnaire at the PACU (pediatric ambulatory care unit). When done, they join the queue for the actual procedure (if I remember correctly the BMA team starts cranking up their hip drills around 10:00 or 10:30). There's really no need to leave the house at 5:30 and race through the various steps, EXCEPT Erin can't have anything to eat or drink until she's done. This puts a premium on not swanning in at 9:45 only to find oneself at the end of a long line, where there is no chance of service until close to tea time.
In the absolute best case scenario, they finish with the one-hour, post-procedure observation about noon, stop for lunch, and arrive at the backdoor by 3:00. I don't, in my wildest imagination, expect that to happen. Five o'clock sounds more likely.
Tomorrow morning, Erin and I will have a "do over," retracing the steps back to Houston at an unGodly hour and then spend the better part of a beautiful day waiting for something to happen. When I talked to the nurse manager, Pam Holt, last week about how long to plan on being in clinic for Erin's ten minute infusion of pemetrexed tomorrow, she said, "Probably at least six hours. Plan on the whole day." As it wasn't the first of April, I assumed it wasn't an April Fools prank, but just in case I asked. She told me she wasn't kidding and that if it was any shorter than she predicted I would be pleasantly surprised.
Unlike a lot of children with neuroblastoma, Erin hasn't needed to take part in a lot of experimental therapy trials. We have consistently signed up for informational trials that help move research on at a basic level, but except for the vaccine study Erin did after she was NED following her original treatment and her brief flirtation (one month then kicked off for progression) with lenalidomide in May of 2005, Erin' has controlled her disease all of these years with already available drugs. At the end of the summer that happy situation screeched to a halt.
From now into the foreseeable future, hope for Erin comes from the pipeline of drugs and treatments that are unavailable save through the clinical trial process. We wish that the pipeline gushed options, but it doesn't. At this juncture we had two choices. Two is better than none, but we can do better. That means more research, and thus more dollars for research.
Research can save Erin's life.
That's why we continue to work with CureSearch to increase government funding and with CNCF (Children's Neuroblastoma Cancer Foundation) and Lunch for Life to increase private funding for pediatric cancer research. That's why we hope our friends will do the same.
For you local Erin fans, here's the first step. I am going to help Tracy Ash and our friends from south Texas CNCF hold a Garage Sale to benefit Lunch for Life on Saturday, November 8. Believe me, what I don't know about garage sales will fit in Kyle Field with extra left over to fill Reed Arena. That said, I'm committed, and I hope you are, too. If you have items that you would like to donate, PLEASE DO. You can bring them to my house by November 5 or call, and we'll figure something out. And, as I said I know nothing about giving garage sales or shopping them, so it would help a great deal if you would price the items before you pass them over to me.
The BMA (bone marrow aspiration) Gang left about an hour ago for the drive into Houston. At Texas Children's this procedure is done on a first come, first served basis: early arrivers get in line to do labs, then (after another wait) have an office visit. Once cleared, they race to another floor and get in line again to do another physical and health history questionnaire at the PACU (pediatric ambulatory care unit). When done, they join the queue for the actual procedure (if I remember correctly the BMA team starts cranking up their hip drills around 10:00 or 10:30). There's really no need to leave the house at 5:30 and race through the various steps, EXCEPT Erin can't have anything to eat or drink until she's done. This puts a premium on not swanning in at 9:45 only to find oneself at the end of a long line, where there is no chance of service until close to tea time.
In the absolute best case scenario, they finish with the one-hour, post-procedure observation about noon, stop for lunch, and arrive at the backdoor by 3:00. I don't, in my wildest imagination, expect that to happen. Five o'clock sounds more likely.
Tomorrow morning, Erin and I will have a "do over," retracing the steps back to Houston at an unGodly hour and then spend the better part of a beautiful day waiting for something to happen. When I talked to the nurse manager, Pam Holt, last week about how long to plan on being in clinic for Erin's ten minute infusion of pemetrexed tomorrow, she said, "Probably at least six hours. Plan on the whole day." As it wasn't the first of April, I assumed it wasn't an April Fools prank, but just in case I asked. She told me she wasn't kidding and that if it was any shorter than she predicted I would be pleasantly surprised.
Unlike a lot of children with neuroblastoma, Erin hasn't needed to take part in a lot of experimental therapy trials. We have consistently signed up for informational trials that help move research on at a basic level, but except for the vaccine study Erin did after she was NED following her original treatment and her brief flirtation (one month then kicked off for progression) with lenalidomide in May of 2005, Erin' has controlled her disease all of these years with already available drugs. At the end of the summer that happy situation screeched to a halt.
From now into the foreseeable future, hope for Erin comes from the pipeline of drugs and treatments that are unavailable save through the clinical trial process. We wish that the pipeline gushed options, but it doesn't. At this juncture we had two choices. Two is better than none, but we can do better. That means more research, and thus more dollars for research.
Research can save Erin's life.
That's why we continue to work with CureSearch to increase government funding and with CNCF (Children's Neuroblastoma Cancer Foundation) and Lunch for Life to increase private funding for pediatric cancer research. That's why we hope our friends will do the same.
For you local Erin fans, here's the first step. I am going to help Tracy Ash and our friends from south Texas CNCF hold a Garage Sale to benefit Lunch for Life on Saturday, November 8. Believe me, what I don't know about garage sales will fit in Kyle Field with extra left over to fill Reed Arena. That said, I'm committed, and I hope you are, too. If you have items that you would like to donate, PLEASE DO. You can bring them to my house by November 5 or call, and we'll figure something out. And, as I said I know nothing about giving garage sales or shopping them, so it would help a great deal if you would price the items before you pass them over to me.
Thursday, October 23, 2008
Funny, She Doesn't Look Dead
October 23, 2008
I found it tough to choose which title to give the entry today, the one you got "Funny, She Doesn't Look Dead" or the runner up, "Don't Expect Me to Eat Food That Sat Next to Pee."
Background on "Doesn't Look Dead":
We went to University Pediatrics to have blood counts done on Tuesday after school. Erin hopped up in her usual seat (no, not the chair for blood draws. She sits at Janine's workstation and plays spider solitaire while she has her labs done). Janine did the finger stick, as usual, and ran the sample through the handy desktop machine that analyzes the sample. I leaned back against the counter, watching and speculating about what numbers the machine would reveal. I figured stable or slightly dropping white count and ANC, stable hemoglobin, and an upward trend on platelets. The machine hung up temporarily, recounting the platelets (hint: this is not a good sign). When the numbers finally registered, everything was lower than it had been last Friday, including hemoglobin which had dropped to from 10.2 to 6.5 (remember we transfuse below 8.).
I started trying to figure out how to work a transfusion into the schedule. To buy time I asked Janine to run the sample again. She did, and when the numbers finally percolated out onto the screen, everything was even lower, including her hemoglobin which had dropped to 3.2. I looked over at Erin, bebopping to the music coming from Janine's workstation and wondered how she had walked up the four flights of stairs to the doctor's office with 25% of normal hemoglobin. The only thing that popped to mind was "Funny, she doesn't look that dead to me."
Rather than panic, we drew a second sample and had more reasonable results:
HGB 10.2 (same as last time and a helluva lot better than 3.2)
WBC 6400 (normal)
ANC 4500 (normal)
PLT 84,000 (headed in the right direction)
The only other news from UPA was that both of Erin's ears looked red from having all that standing water (or mucous or snot or whatever) between her ears. So she won a ten day supply of amoxicillan to nip the infection in the bud. I'm not ordinarily that quick to the trigger on antibiotics and ear infections, especially when Erin has decent counts. However, the presence of her PICC line and the certain hospitalization we earn with any fever over 101 makes me much more risk averse. I can take a little antibiotic-induced diarrhea in exchange for sleeping in my own bed at night.
Background on "Don't Expect Me to Eat Food That Sat Next to Pee":
Starting a new clinical trial always involves jumping over hurdles in the form of tests, evaluations, and screenings, so that the investigators have a baseline on various aspect of the patient's health before they start. One of the last minute items stipulated by the study was a twenty-four hour creatinine clearance measure. This involves one blood draw and collecting all of Erin's urine for twenty-four hours. I always try to break news to Erin ahead of time, because she really doesn't like those cancer-related surprises (who does, come to think of it?). Anyway, she was not down with the idea of collecting her urine for a day, mainly because she hates the way the little commode hat smells after the urine has sat there ripening for awhile. I told her that she wouldn't have to smell it. I would just pour it into a jug and stick it in the refrigerator. You would have thought I had offered to store dead lemurs next to the butter, "I just hope you don't expect me to eat a bite of food that has been sitting next to pee!"
It turned out that Erin's creatinine has been normal for so long that we didn't need a urine collection. That eased both Erin's concern about pee storage and my worry about collecting a clean sample if Erin had antibiotic triggered runs.
Maybe the title of the post should have been "Dodged Two Bullets."
In other news, Erin has enjoyed her first complete week at school since the semester started. It will culminate in the fall dance tomorrow night. She made it to piano for the second week straight, and though she's not cleared for soccer yet, things are feeling more normal than they have in a couple of months. Of course that may change on a dime, especially in light of treatment resuming next week. In the meantime, we're hoping for a gorgeous weekend.
I found it tough to choose which title to give the entry today, the one you got "Funny, She Doesn't Look Dead" or the runner up, "Don't Expect Me to Eat Food That Sat Next to Pee."
Background on "Doesn't Look Dead":
We went to University Pediatrics to have blood counts done on Tuesday after school. Erin hopped up in her usual seat (no, not the chair for blood draws. She sits at Janine's workstation and plays spider solitaire while she has her labs done). Janine did the finger stick, as usual, and ran the sample through the handy desktop machine that analyzes the sample. I leaned back against the counter, watching and speculating about what numbers the machine would reveal. I figured stable or slightly dropping white count and ANC, stable hemoglobin, and an upward trend on platelets. The machine hung up temporarily, recounting the platelets (hint: this is not a good sign). When the numbers finally registered, everything was lower than it had been last Friday, including hemoglobin which had dropped to from 10.2 to 6.5 (remember we transfuse below 8.).
I started trying to figure out how to work a transfusion into the schedule. To buy time I asked Janine to run the sample again. She did, and when the numbers finally percolated out onto the screen, everything was even lower, including her hemoglobin which had dropped to 3.2. I looked over at Erin, bebopping to the music coming from Janine's workstation and wondered how she had walked up the four flights of stairs to the doctor's office with 25% of normal hemoglobin. The only thing that popped to mind was "Funny, she doesn't look that dead to me."
Rather than panic, we drew a second sample and had more reasonable results:
HGB 10.2 (same as last time and a helluva lot better than 3.2)
WBC 6400 (normal)
ANC 4500 (normal)
PLT 84,000 (headed in the right direction)
The only other news from UPA was that both of Erin's ears looked red from having all that standing water (or mucous or snot or whatever) between her ears. So she won a ten day supply of amoxicillan to nip the infection in the bud. I'm not ordinarily that quick to the trigger on antibiotics and ear infections, especially when Erin has decent counts. However, the presence of her PICC line and the certain hospitalization we earn with any fever over 101 makes me much more risk averse. I can take a little antibiotic-induced diarrhea in exchange for sleeping in my own bed at night.
Background on "Don't Expect Me to Eat Food That Sat Next to Pee":
Starting a new clinical trial always involves jumping over hurdles in the form of tests, evaluations, and screenings, so that the investigators have a baseline on various aspect of the patient's health before they start. One of the last minute items stipulated by the study was a twenty-four hour creatinine clearance measure. This involves one blood draw and collecting all of Erin's urine for twenty-four hours. I always try to break news to Erin ahead of time, because she really doesn't like those cancer-related surprises (who does, come to think of it?). Anyway, she was not down with the idea of collecting her urine for a day, mainly because she hates the way the little commode hat smells after the urine has sat there ripening for awhile. I told her that she wouldn't have to smell it. I would just pour it into a jug and stick it in the refrigerator. You would have thought I had offered to store dead lemurs next to the butter, "I just hope you don't expect me to eat a bite of food that has been sitting next to pee!"
It turned out that Erin's creatinine has been normal for so long that we didn't need a urine collection. That eased both Erin's concern about pee storage and my worry about collecting a clean sample if Erin had antibiotic triggered runs.
Maybe the title of the post should have been "Dodged Two Bullets."
In other news, Erin has enjoyed her first complete week at school since the semester started. It will culminate in the fall dance tomorrow night. She made it to piano for the second week straight, and though she's not cleared for soccer yet, things are feeling more normal than they have in a couple of months. Of course that may change on a dime, especially in light of treatment resuming next week. In the meantime, we're hoping for a gorgeous weekend.
Tuesday, October 21, 2008
Buckets of Snot
October 21, 2008
Walter and I were so aglow over the return of the bonafide Erin on Saturday that we fell asleep at the switch and forgot to give her her claratin and singulair for seasonal allergies that evening. We forgot at the height of fall allergy season. We forgot after Erin spent most of the day tromping around up and down the road and behind the dam and most of the evening sitting by a campfire at Adam's birthday party, roasting marshmallows and letting the smoke drift through her hair (well hair stubs, anyway).
We have paid for it since, with buckets of snot rolling out of her nose (mostly into tissues and to a lesser degree down her throat, which is now raw) and a sinus pressure headache that doesn't give in to much. I guess you'd say our oversight of this situation was akin to Treasury secretary Paulson's oversight of the financial markets. Oops. And this was supposed to be her good, recovered from chemo week, too. Oops.
We have not made a final decision about what treatment to sign up for next, although I think we are leaning towards the pemethexed study.
In the meantime, Erin has made the best of a snotty situation. We went out to watch the Aggie women play soccer Sunday afternoon. Erin ballgirled half the game, and luckily for me (given my lacking oversight abilities these days), she neither got smacked by an errant ball nor flattened by an out-of-control player as she stood on the sideline. We also went to the Brazos Valley Organ Extravaganza Sunday evening, mainly to listen to Nico playing, who received a spontaneous standing O after his piece, as the large crowd probably didn't anticipate how amazing his playing is.
Early voting started Monday here Brazos County, so Erin and I did our civic duty down at the courthouse. A record setting 2049 other folks joined me for first day voting.
Monday then turned into homework day. Besides the usual, Erin is building a Dia de los Muertos altar in memory of Walter's mother, a.k.a. Grammy, for Spanish class. I thought it a bit creepy that Erin was fashioning skulls out of skulpi clay, but she didn't seem to notice the morbidity of it. I pitched in by making a little tea cup and saucer, complete with a lemon on the rim, in memory of the many times I remember her sending her tea back with the waiter or waitress, admonishing them to bring her HOT water, not warm water for her tea. I also made something that you might mistake for Angel food cake, if someone told you ahead of time "Oh, that's supposed to be an angel food cake." Erin did much better, building a diarama of someone swimming and a stack of little books (both beloved hobbies of Grammy).
I'm going to check Erin's counts after school again today, just to make sure that her platelets have recovered and have the pediatrician take a quick peak into Erin's ears just to make sure the standing water between her ears hasn't gotten infected. If you have a direct line to the snot diety, you can call him/her off now. We have had our share and then some.
Walter and I were so aglow over the return of the bonafide Erin on Saturday that we fell asleep at the switch and forgot to give her her claratin and singulair for seasonal allergies that evening. We forgot at the height of fall allergy season. We forgot after Erin spent most of the day tromping around up and down the road and behind the dam and most of the evening sitting by a campfire at Adam's birthday party, roasting marshmallows and letting the smoke drift through her hair (well hair stubs, anyway).
We have paid for it since, with buckets of snot rolling out of her nose (mostly into tissues and to a lesser degree down her throat, which is now raw) and a sinus pressure headache that doesn't give in to much. I guess you'd say our oversight of this situation was akin to Treasury secretary Paulson's oversight of the financial markets. Oops. And this was supposed to be her good, recovered from chemo week, too. Oops.
We have not made a final decision about what treatment to sign up for next, although I think we are leaning towards the pemethexed study.
In the meantime, Erin has made the best of a snotty situation. We went out to watch the Aggie women play soccer Sunday afternoon. Erin ballgirled half the game, and luckily for me (given my lacking oversight abilities these days), she neither got smacked by an errant ball nor flattened by an out-of-control player as she stood on the sideline. We also went to the Brazos Valley Organ Extravaganza Sunday evening, mainly to listen to Nico playing, who received a spontaneous standing O after his piece, as the large crowd probably didn't anticipate how amazing his playing is.
Early voting started Monday here Brazos County, so Erin and I did our civic duty down at the courthouse. A record setting 2049 other folks joined me for first day voting.
Monday then turned into homework day. Besides the usual, Erin is building a Dia de los Muertos altar in memory of Walter's mother, a.k.a. Grammy, for Spanish class. I thought it a bit creepy that Erin was fashioning skulls out of skulpi clay, but she didn't seem to notice the morbidity of it. I pitched in by making a little tea cup and saucer, complete with a lemon on the rim, in memory of the many times I remember her sending her tea back with the waiter or waitress, admonishing them to bring her HOT water, not warm water for her tea. I also made something that you might mistake for Angel food cake, if someone told you ahead of time "Oh, that's supposed to be an angel food cake." Erin did much better, building a diarama of someone swimming and a stack of little books (both beloved hobbies of Grammy).
I'm going to check Erin's counts after school again today, just to make sure that her platelets have recovered and have the pediatrician take a quick peak into Erin's ears just to make sure the standing water between her ears hasn't gotten infected. If you have a direct line to the snot diety, you can call him/her off now. We have had our share and then some.
Saturday, October 18, 2008
I Have Responsibilities
October 18, 2008
A Day-Late Birthday Greeting to my baby sister, Kat (the B-I-G 4-0!). You never knew how great it would feel to earn a 4.0. Welcome to the fantastic decade.
So, with unchanged scans after two rounds of IV chemo (topo with vincristine and adriamycin and topo/cyclo), we face some decisions. Maybe the IV chemo stopped rapid progression (good thing), but maybe it didn't kill back the tumor like it should have (bad thing). That means we have to decide if we're going to use one or both of those again or change things up. The change up offered by Erin's doc is either ABT-751 or pemetrexed (both are phase II trials). We have next week off regardless of what we decide because if we continue some form of topo we wouldn't start until October 30, and the earliest we can start either of the others is October 28 (because of the mandatory wait time between therapies if you are starting a clinical trial). Honestly, we haven't decided which direction to jump yet, mainly because I tend to conduct a rather rigorous due diligence on these kinds of decisions (Hint, hint, if you have experience with any of these drugs, I'd love for you to weigh with your thoughts and opinions. Our e-mail is at the bottom of the page.).
If we do a trial, Erin will have to run down to Houston either the 24th or the 27th for bone marrow aspirations and biopsies, which we haven't done in three and a half years. I gave her the choice of going on Monday with the caveat that only Walter would go with her because I had class that I couldn't miss. She immediately protested that she couldn't possible go without me. I told she could also go on Friday, but I didn't know if she would feel like going to the school dance that night if she had just had her hips drilled. I added that I didn't even know if she intended on going to the dance, I just wanted to lay out her options. She said, "Of course, I'm going to the dance. The Student Council is sponsoring the dance. I'm the Treasurer. I have to be there. I have responsibilities."
So we tried to figure out how to arrange a Monday BMA. Ultimately, she decided she could go to Houston without me IF Walter would go ("because he's smart and can figure out all the details of where and when we need to do things so it goes efficiently"), AND if Moo would go ("because she's fun and entertaining"), AND if Jackson's mom, Shirlene, would go ("because she's calm"). Now, if I just took three people to replace in all the other parts of my life, my stock would really rise. . .
If you were wondering, Erin has thrown off almost all of the side effects of the two rounds of chemo and doesn't seem to have any tumor-related effects either. Her labs yesterday either looked super or were headed steadily up:
A Day-Late Birthday Greeting to my baby sister, Kat (the B-I-G 4-0!). You never knew how great it would feel to earn a 4.0. Welcome to the fantastic decade.
So, with unchanged scans after two rounds of IV chemo (topo with vincristine and adriamycin and topo/cyclo), we face some decisions. Maybe the IV chemo stopped rapid progression (good thing), but maybe it didn't kill back the tumor like it should have (bad thing). That means we have to decide if we're going to use one or both of those again or change things up. The change up offered by Erin's doc is either ABT-751 or pemetrexed (both are phase II trials). We have next week off regardless of what we decide because if we continue some form of topo we wouldn't start until October 30, and the earliest we can start either of the others is October 28 (because of the mandatory wait time between therapies if you are starting a clinical trial). Honestly, we haven't decided which direction to jump yet, mainly because I tend to conduct a rather rigorous due diligence on these kinds of decisions (Hint, hint, if you have experience with any of these drugs, I'd love for you to weigh with your thoughts and opinions. Our e-mail is at the bottom of the page.).
If we do a trial, Erin will have to run down to Houston either the 24th or the 27th for bone marrow aspirations and biopsies, which we haven't done in three and a half years. I gave her the choice of going on Monday with the caveat that only Walter would go with her because I had class that I couldn't miss. She immediately protested that she couldn't possible go without me. I told she could also go on Friday, but I didn't know if she would feel like going to the school dance that night if she had just had her hips drilled. I added that I didn't even know if she intended on going to the dance, I just wanted to lay out her options. She said, "Of course, I'm going to the dance. The Student Council is sponsoring the dance. I'm the Treasurer. I have to be there. I have responsibilities."
So we tried to figure out how to arrange a Monday BMA. Ultimately, she decided she could go to Houston without me IF Walter would go ("because he's smart and can figure out all the details of where and when we need to do things so it goes efficiently"), AND if Moo would go ("because she's fun and entertaining"), AND if Jackson's mom, Shirlene, would go ("because she's calm"). Now, if I just took three people to replace in all the other parts of my life, my stock would really rise. . .
If you were wondering, Erin has thrown off almost all of the side effects of the two rounds of chemo and doesn't seem to have any tumor-related effects either. Her labs yesterday either looked super or were headed steadily up:
HGB 10.2 (not quite normal but certainly enough juice to keep her going)
WBC 8200 (super)
ANC 6000 (super)
PLT 55,000 (still low, but should be fine by soccer next Tuesday)
Last night we had regular Erin at home for the first time in quite a long way. Not dragging from chemo. Not dragging from low hemoglobin. Not dragging from low white blood counts. Not dragging from the grind of keeping up with eight classes while missing at least one day each week. Not dragging from the disruption of her life. She bubbled. She prattled. She told funny stories. We beamed.
This morning has been second verse same as the first. She has a friend (Peyton McCracken) in from Oklahoma. They have ridden bikes, tromped around behind the dam, played Legos and roof ball. They helped me with the recycling (WARNING--OFF TOPIC STORY: I don't know when the last time I recycled, but it was before I sent the old van up to Dallas for Annabelle to drive during her senior year. Anyway, as the folks were unloading the stuff from the back of my van, a worker asked if the brown bottles were from my business. I said no and why did he ask. He said they couldn't take recycling from businesses. I think he just wondered how I could be so slim if I drank that much beer.)
Anyway, that's all for now. We're headed to Adam's birthday party in a couple of hours. If you have wondered about Willie lately and noticed I hadn't written much, you can check out The Davis Report and read the latest.
Last night we had regular Erin at home for the first time in quite a long way. Not dragging from chemo. Not dragging from low hemoglobin. Not dragging from low white blood counts. Not dragging from the grind of keeping up with eight classes while missing at least one day each week. Not dragging from the disruption of her life. She bubbled. She prattled. She told funny stories. We beamed.
This morning has been second verse same as the first. She has a friend (Peyton McCracken) in from Oklahoma. They have ridden bikes, tromped around behind the dam, played Legos and roof ball. They helped me with the recycling (WARNING--OFF TOPIC STORY: I don't know when the last time I recycled, but it was before I sent the old van up to Dallas for Annabelle to drive during her senior year. Anyway, as the folks were unloading the stuff from the back of my van, a worker asked if the brown bottles were from my business. I said no and why did he ask. He said they couldn't take recycling from businesses. I think he just wondered how I could be so slim if I drank that much beer.)
Anyway, that's all for now. We're headed to Adam's birthday party in a couple of hours. If you have wondered about Willie lately and noticed I hadn't written much, you can check out The Davis Report and read the latest.
Thursday, October 16, 2008
Clean Bone Scan
October 16, 2008
Erin's bone scan came back clear. In fact, she has never had a positive bone scan since the very first look back in July 2002.
I really don't have time to write more. Erin is working on an English paper about the Worst Time in Her Life. Actually, she's done a rough draft and corrected it, so all she really needs is to type it up. Somehow, she can't do it if I am at my computer.
Erin's bone scan came back clear. In fact, she has never had a positive bone scan since the very first look back in July 2002.
I really don't have time to write more. Erin is working on an English paper about the Worst Time in Her Life. Actually, she's done a rough draft and corrected it, so all she really needs is to type it up. Somehow, she can't do it if I am at my computer.
Tuesday, October 14, 2008
We Don't Know Much
October 14, 2008
I have seen the stats on my page counter turning pretty rapidly since I got home about an hour ago, so I figured I better update, even if we don't know a lot. The preliminary report on the CT scan is that Erin's tumor area hasn't really changed one way or another since late August. There have been many times in the past when unchanged was a satisfying outcome, but after doing two round of IV chemo we were hoping for more. We won't have the final report or the report on the bone scan until Thursday.
As it stands now, we have to make some decisions about what to do next. If we continue doing what we've done, we won't start that until October 30. If we change things up and choose a trial, Erin wouldn't be eligible to start something new until October 28. That gives us a reasonable window (two weeks) to consider our options.
For the record, Erin's labs today were mostly good:
I have seen the stats on my page counter turning pretty rapidly since I got home about an hour ago, so I figured I better update, even if we don't know a lot. The preliminary report on the CT scan is that Erin's tumor area hasn't really changed one way or another since late August. There have been many times in the past when unchanged was a satisfying outcome, but after doing two round of IV chemo we were hoping for more. We won't have the final report or the report on the bone scan until Thursday.
As it stands now, we have to make some decisions about what to do next. If we continue doing what we've done, we won't start that until October 30. If we change things up and choose a trial, Erin wouldn't be eligible to start something new until October 28. That gives us a reasonable window (two weeks) to consider our options.
For the record, Erin's labs today were mostly good:
HGB 9.9 (the transfusion seems to have stuck)
WBC 4800 (close to normal)
ANC 2900 (normal, and to me shocking, since she has never been this high on Day 12 of the previous nine round of this chemo combo)
PLT 24,000 (not good for soccer or kick boxing, but not quite to the point where we transfuse)
Monday, October 13, 2008
Your Assignment
October 13, 2008
When I asked Erin this morning if she knew why today was special, she said, "It's Columbus Day, right? That's why I don't have school." I told her that we did celebrate Columbus Day today, but more important for our family, today marked the day that her dad and I got married twenty-four years ago. She lifted a (barely visible) eyebrow and asked, "And why did you choose Columbus Day for your wedding? We're not Italian."
Rim shot, please.
Erin has scans tomorrow to check whether the heavier duty chemo has done its job. We have to report at Texas Children's by 6:30 in the morning. We'll drive up this evening, eat our anniversary dinner at the Houston Downtown Aquarium as a threesome, and report as ordered bright and early in the morning. Anyway, I heard you were looking for something to do today. Here's your assignment: we need you to pray or dance or cross your fingers or push your thumbs or burn your incense or polish your crystals for favorable results and wisdom for our future course of action. Please.
Erin continued to slump a good portion of the day yesterday, BUT not all day. I can tell you the precise moment she turned the corner. Her friend Congressman Chet Edwards arrived at our house 6:08 for a visit. She showed him our yard, the lake, and her room and visited animatedly about a range of topics. It pushed towards dinner time and Chet asked us to choose a place that he could take us for dinner. We offered him three choices: a fajita dinner at the park sponsored by our church (I thought maybe he'd want to meet some new folks and do some subtle campaigning), a trendy, newly opened German restaurant downtown (where again he might be seen by potential voters), or Gina's restaurant (which we felt would be virtually empty). He chose Gina's because he wanted to focus on Erin with no distraction. [I was actually fairly excited about the choice because I suspected that Erin's white counts were on the slide and the fewer people we mingled with, the better.]
Later that night after Chet and Chris had moved on, Erin was chattering away, might I even note bouncing a bit in her usual style. She said, "Time is so funny, momma." I thought she was setting me up so that I would stumble into a straight line for a joke, and she could deliver the punch line. I complied, but instead of a joke, I got a 6th grader's version of Einstein's pronouncement on relativity: "When a man sits with a pretty girl for an hour, it seems like a minute. But let him sit on a hot stove for a minute and it's longer than any hour. That's relativity." Erin's version: "time moved so slowly all day, I didn't think it was moving at all, and then dinner went by so fast I thought it was just a blink."
Last night wasn't just a fluke or the result of adrenaline. I called the house a few minutes ago, and she and my mother were baking naan bread and grooving to Rhapsody. A double batch (of bread, not Rhapsody). One made with Fleishmann's yeast. The other with nutritional yeat (Yikes! I didn't know such a thing existed.). Why? She has designed an experiment for her consumer science project comparing the two. That's all I know. I think she's made plans to hang out with Sam V. this afternoon when the baking's done. I hope she's home by the time we need to leave for Houston. Or maybe I'll just cool my heels and wait, letting her soak up a little more fun.
When I asked Erin this morning if she knew why today was special, she said, "It's Columbus Day, right? That's why I don't have school." I told her that we did celebrate Columbus Day today, but more important for our family, today marked the day that her dad and I got married twenty-four years ago. She lifted a (barely visible) eyebrow and asked, "And why did you choose Columbus Day for your wedding? We're not Italian."
Rim shot, please.
Erin has scans tomorrow to check whether the heavier duty chemo has done its job. We have to report at Texas Children's by 6:30 in the morning. We'll drive up this evening, eat our anniversary dinner at the Houston Downtown Aquarium as a threesome, and report as ordered bright and early in the morning. Anyway, I heard you were looking for something to do today. Here's your assignment: we need you to pray or dance or cross your fingers or push your thumbs or burn your incense or polish your crystals for favorable results and wisdom for our future course of action. Please.
Erin continued to slump a good portion of the day yesterday, BUT not all day. I can tell you the precise moment she turned the corner. Her friend Congressman Chet Edwards arrived at our house 6:08 for a visit. She showed him our yard, the lake, and her room and visited animatedly about a range of topics. It pushed towards dinner time and Chet asked us to choose a place that he could take us for dinner. We offered him three choices: a fajita dinner at the park sponsored by our church (I thought maybe he'd want to meet some new folks and do some subtle campaigning), a trendy, newly opened German restaurant downtown (where again he might be seen by potential voters), or Gina's restaurant (which we felt would be virtually empty). He chose Gina's because he wanted to focus on Erin with no distraction. [I was actually fairly excited about the choice because I suspected that Erin's white counts were on the slide and the fewer people we mingled with, the better.]
Later that night after Chet and Chris had moved on, Erin was chattering away, might I even note bouncing a bit in her usual style. She said, "Time is so funny, momma." I thought she was setting me up so that I would stumble into a straight line for a joke, and she could deliver the punch line. I complied, but instead of a joke, I got a 6th grader's version of Einstein's pronouncement on relativity: "When a man sits with a pretty girl for an hour, it seems like a minute. But let him sit on a hot stove for a minute and it's longer than any hour. That's relativity." Erin's version: "time moved so slowly all day, I didn't think it was moving at all, and then dinner went by so fast I thought it was just a blink."
Last night wasn't just a fluke or the result of adrenaline. I called the house a few minutes ago, and she and my mother were baking naan bread and grooving to Rhapsody. A double batch (of bread, not Rhapsody). One made with Fleishmann's yeast. The other with nutritional yeat (Yikes! I didn't know such a thing existed.). Why? She has designed an experiment for her consumer science project comparing the two. That's all I know. I think she's made plans to hang out with Sam V. this afternoon when the baking's done. I hope she's home by the time we need to leave for Houston. Or maybe I'll just cool my heels and wait, letting her soak up a little more fun.
Sunday, October 12, 2008
The Amazing Teddy Show
October 12, 2008
It's pretty painful to watch Erin's energy level stay down in the dumps so that she can't do the things that she loves. Since she didn't feel up to the activities we had planned, she has had to make her own fun this weekend,
In this short clip, Erin provides the hydraulics for Teddy's Low Rider machine. For those of you who have missed out on this car phenomenon, people rebuild their production cars by adding hydraulics so the rear, side, or front of the car so the car can lifts itself into the air while driving.
It's pretty painful to watch Erin's energy level stay down in the dumps so that she can't do the things that she loves. Since she didn't feel up to the activities we had planned, she has had to make her own fun this weekend,
In this short clip, Erin provides the hydraulics for Teddy's Low Rider machine. For those of you who have missed out on this car phenomenon, people rebuild their production cars by adding hydraulics so the rear, side, or front of the car so the car can lifts itself into the air while driving.
Thursday, October 9, 2008
Highlights and Lowlights
October 9, 2008
Erin did get her neulasta injection and flu shot on Tuesday, and she was neither neutrapenic nor transfusable (though close on hemoglobin, 8.4, where below 8.0 earns you a unit of packed red cells) that day, clearing the deck for the rest of the school week. Wednesday had its highs and lows. Erin stayed after school for Student Council and gave her spiel about why they should vote for her for Treasurer. That evening she did a little homework, but like Tuesday night she was way sluggish and her head throbbed (If you Google "low hemoglobin side effects," you will find the words "fatigue," "headache," "weakness," "confusion." You could just have easily seen a picture of Erin Wednesday evening.).
We had counts done again today, because I was sure that we had dropped below the magic number and wanted to avoid the weekend rush. Call me clairvoyant:
Since we waited fairly late in the day to have counts done, coordinating orders presented some obstacles for the local doc and the Houston doc. At first it looked like the Houston doc really wanted us in Houston tomorrow (you know. . .a five hour+ round trip, plus waiting in the infusion room on the busiest day of the week to be crossed and typed, waiting for the blood order to arrive in a city with heavy blood needs, and then waiting the three hours to transfuse. You do the math.). I couldn't think of a single reason why that sounded like a good idea. Especially, since Erin could drop by the local hospital on the way home from clinic this evening for crossing and typing, and just show up after school tomorrow at the hospital, watch a few movies, play some games, and order pizza in a private room during the three hours transfusion, and then drive twelve minutes home.
Luckily, the Houston doc saw it our way.
We did have another lowlight getting crossed and typed this evening. The lab techs insisted on sticking Erin for the blood sample instead of using her PICC line. They didn't even change their mind when Erin pointed out how stupid that was, since that was the whole point of having a PICC line. Sigh. However, by mixing in the news that Erin didn't have to miss the school awards ceremony tomorrow, where she will receive an award for academic honor roll the first six weeks (missing only eleven of 25 days), and that she won her election as Student Council Treasurer, we were able to balance out the lows with the highs. [NOTE: I also had to promise to give her all of the money in my wallet, towards her saving project of buying her own trampoline, if she let the tech poke her.]
We'd like to end the week on an even higher note: Erin is having an Open House at St. Joseph's Hospital tomorrow, starting at about 4:30 and continuing until about 8:00 or 9:00. She will have decks of cards and some movies. I'll probably order pizza. If you would like to stop by to say hi we'd welcome your company. Ask at the information desk which room they have assigned her to, or give me a call on my cell. Be there or be square.
Erin did get her neulasta injection and flu shot on Tuesday, and she was neither neutrapenic nor transfusable (though close on hemoglobin, 8.4, where below 8.0 earns you a unit of packed red cells) that day, clearing the deck for the rest of the school week. Wednesday had its highs and lows. Erin stayed after school for Student Council and gave her spiel about why they should vote for her for Treasurer. That evening she did a little homework, but like Tuesday night she was way sluggish and her head throbbed (If you Google "low hemoglobin side effects," you will find the words "fatigue," "headache," "weakness," "confusion." You could just have easily seen a picture of Erin Wednesday evening.).
We had counts done again today, because I was sure that we had dropped below the magic number and wanted to avoid the weekend rush. Call me clairvoyant:
HGB 7.4 (ding, ding, ding, we have a winner! Grand prize: transfusion)
WBC 7300 (excellent)
ANC 6200 (excellent, could the neulasta be working already?)
PLT 115,000 (still okay)
Since we waited fairly late in the day to have counts done, coordinating orders presented some obstacles for the local doc and the Houston doc. At first it looked like the Houston doc really wanted us in Houston tomorrow (you know. . .a five hour+ round trip, plus waiting in the infusion room on the busiest day of the week to be crossed and typed, waiting for the blood order to arrive in a city with heavy blood needs, and then waiting the three hours to transfuse. You do the math.). I couldn't think of a single reason why that sounded like a good idea. Especially, since Erin could drop by the local hospital on the way home from clinic this evening for crossing and typing, and just show up after school tomorrow at the hospital, watch a few movies, play some games, and order pizza in a private room during the three hours transfusion, and then drive twelve minutes home.
Luckily, the Houston doc saw it our way.
We did have another lowlight getting crossed and typed this evening. The lab techs insisted on sticking Erin for the blood sample instead of using her PICC line. They didn't even change their mind when Erin pointed out how stupid that was, since that was the whole point of having a PICC line. Sigh. However, by mixing in the news that Erin didn't have to miss the school awards ceremony tomorrow, where she will receive an award for academic honor roll the first six weeks (missing only eleven of 25 days), and that she won her election as Student Council Treasurer, we were able to balance out the lows with the highs. [NOTE: I also had to promise to give her all of the money in my wallet, towards her saving project of buying her own trampoline, if she let the tech poke her.]
We'd like to end the week on an even higher note: Erin is having an Open House at St. Joseph's Hospital tomorrow, starting at about 4:30 and continuing until about 8:00 or 9:00. She will have decks of cards and some movies. I'll probably order pizza. If you would like to stop by to say hi we'd welcome your company. Ask at the information desk which room they have assigned her to, or give me a call on my cell. Be there or be square.
Tuesday, October 7, 2008
Gift Girls
October 7, 2008
Look at these dolled up girls who gave up their birthday largess to the children on the hem-onc floor at Texas Children's.
Their mom said that they were sort of shy about their golden deed and wouldn't actually walk into a patient room and give out the gifts themselves until they got to Erin's room. Erin's humongous smile and warm welcome broke the ice for them.
Erin and Walter were whipped by the time they made it home last night. It felt a little cruel to roust Erin out for school this morning, but that's what she wanted. She said she needed to get to school because she had to turn in her application to run for Student Council Treasurer (6th graders aren't eligible for President and Vice President) by 4:00 this afternoon. One question on the application asked about the student's extra curricular activities and how well they manage their time and holdup their responsibilities. Erin asked me if she could answer that her theme song was "I'll Sleep When I'm Dead."
After school we'll go to University Pediatrics for the double whammy: Erin's neulasta injection to pump up her white blood count and ANC (essential for a quick recovery from chemo and to lower the risk of infections) AND her annual flu shot. Woohoo! Luckily, her nurse Beverly is the absolute, hands-down, bar-none fastest shot giver I have ever encountered. It's over before you even start to protest that it hurts.
P.S. Notice how bare the room is. You get much less decorating done if you only check in for the afternoon.
Look at these dolled up girls who gave up their birthday largess to the children on the hem-onc floor at Texas Children's.
Their mom said that they were sort of shy about their golden deed and wouldn't actually walk into a patient room and give out the gifts themselves until they got to Erin's room. Erin's humongous smile and warm welcome broke the ice for them.
Erin and Walter were whipped by the time they made it home last night. It felt a little cruel to roust Erin out for school this morning, but that's what she wanted. She said she needed to get to school because she had to turn in her application to run for Student Council Treasurer (6th graders aren't eligible for President and Vice President) by 4:00 this afternoon. One question on the application asked about the student's extra curricular activities and how well they manage their time and holdup their responsibilities. Erin asked me if she could answer that her theme song was "I'll Sleep When I'm Dead."
After school we'll go to University Pediatrics for the double whammy: Erin's neulasta injection to pump up her white blood count and ANC (essential for a quick recovery from chemo and to lower the risk of infections) AND her annual flu shot. Woohoo! Luckily, her nurse Beverly is the absolute, hands-down, bar-none fastest shot giver I have ever encountered. It's over before you even start to protest that it hurts.
P.S. Notice how bare the room is. You get much less decorating done if you only check in for the afternoon.
Monday, October 6, 2008
Done
October 6, 2008
As best I can tell, Erin should finish getting heparinized in a moment or two. Walter will tote the stuff to the van and hit the road just in time to enjoy as much of Houston's traffic as he did driving in this morning between 6:45 and 9:30. I will have to interview him over a grain-based beverage this evening to get his impression of Day 5. I do not think it bodes well for a thumbs up for clinic efficiency (though in fairness: Mondays never rock).
The only other thing I have to say is that within moments of returning to my office after teaching, I received this e-mail from Erin.
Subject: JACKSON IS PUKING WHAT SHOULD I DO?
Body: Dad just went to get Tylenol because Jackson says it is because of his head . should we give him zofran? miss you.
Erin
If you didn't already know it, Walter is a brave man, and I love him alot.
As best I can tell, Erin should finish getting heparinized in a moment or two. Walter will tote the stuff to the van and hit the road just in time to enjoy as much of Houston's traffic as he did driving in this morning between 6:45 and 9:30. I will have to interview him over a grain-based beverage this evening to get his impression of Day 5. I do not think it bodes well for a thumbs up for clinic efficiency (though in fairness: Mondays never rock).
The only other thing I have to say is that within moments of returning to my office after teaching, I received this e-mail from Erin.
Subject: JACKSON IS PUKING WHAT SHOULD I DO?
Body: Dad just went to get Tylenol because Jackson says it is because of his head . should we give him zofran? miss you.
Erin
If you didn't already know it, Walter is a brave man, and I love him alot.
Sunday, October 5, 2008
Four of Five
October 5, 2008
We have finished four out of five chemo infusions and are hanging here on the 9th floor waiting for the two hours of post hydration to perk on through the pump. We will head home for the evening as soon as the nurse unhooks Erin. Plan: drive home, pick up Jackson, and see that movie that you have held you breath waiting for--BH Chihuahua. Jackson will add a sense of fun and energy to the group tomorrow so that we can knock off day five and be done for a while.
I did have a little start yesterday, when a woman knocked lightly on the hospital door, walked in, introduced herself, "Hi. I'm Lisa. I'm a stalker." and left me uncharacteristically without something to say. It turns out we actually knew Lisa, having met her back during transplant. We also have some other Houston NB families in common. It turns out that Lisa was a closet Erin fan, always reading but never commenting. Now that she has come out of the closet, I have identified a new friend who shares my rather uncommon (I think I really mean bizarre) sense of humor.
Lisa didn't just drive from her home on the news that she could meet us if she just hung around at TCH long enough yesterday. In fact, her daughter and three of her daughter's friends had pooled their birthday opportunities and collected toys and games galore. Those really cool eight-year-olds then took every item up to the ninth floor and gave them to patients stuck in the hospital. I'll post a photo of these girls and all the bootie they distributed, when the mom with the camera sends me the shot. You should be jealous, Erin scored a spirograph and a complete set (24) of gel pens, including metallic ones.
I have tried very hard not to whine during this round of chemo (trying doesn't always mean doing, just ask Yoda). I think I should feel happy since we actually pulled off an "in" and "out." That is, there were enough spare rooms in the inn, that we checked in for chemo yesterday and got to leave. We stayed the night in the Marriott across the street and checked back in this morning for Day 4. What I don't understand is how we keep getting extra hours of "sit around and wait" written into the orders, when all we want is to "get started and leave." We have not broken the six hour barrier yet. But far be it for me to complain about getting fifty percent more for the same price. What a bargain.
We have finished four out of five chemo infusions and are hanging here on the 9th floor waiting for the two hours of post hydration to perk on through the pump. We will head home for the evening as soon as the nurse unhooks Erin. Plan: drive home, pick up Jackson, and see that movie that you have held you breath waiting for--BH Chihuahua. Jackson will add a sense of fun and energy to the group tomorrow so that we can knock off day five and be done for a while.
I did have a little start yesterday, when a woman knocked lightly on the hospital door, walked in, introduced herself, "Hi. I'm Lisa. I'm a stalker." and left me uncharacteristically without something to say. It turns out we actually knew Lisa, having met her back during transplant. We also have some other Houston NB families in common. It turns out that Lisa was a closet Erin fan, always reading but never commenting. Now that she has come out of the closet, I have identified a new friend who shares my rather uncommon (I think I really mean bizarre) sense of humor.
Lisa didn't just drive from her home on the news that she could meet us if she just hung around at TCH long enough yesterday. In fact, her daughter and three of her daughter's friends had pooled their birthday opportunities and collected toys and games galore. Those really cool eight-year-olds then took every item up to the ninth floor and gave them to patients stuck in the hospital. I'll post a photo of these girls and all the bootie they distributed, when the mom with the camera sends me the shot. You should be jealous, Erin scored a spirograph and a complete set (24) of gel pens, including metallic ones.
I have tried very hard not to whine during this round of chemo (trying doesn't always mean doing, just ask Yoda). I think I should feel happy since we actually pulled off an "in" and "out." That is, there were enough spare rooms in the inn, that we checked in for chemo yesterday and got to leave. We stayed the night in the Marriott across the street and checked back in this morning for Day 4. What I don't understand is how we keep getting extra hours of "sit around and wait" written into the orders, when all we want is to "get started and leave." We have not broken the six hour barrier yet. But far be it for me to complain about getting fifty percent more for the same price. What a bargain.
Thursday, October 2, 2008
I Think That Girl Is Sick
October 2, 2008 (2nd post of the day)
I forgot to mention a moment we had at the zoo. We were looking at the ring-tailed lemurs and visiting with a mom who had three children--a pre-school boy and a a couple of little girls, probably kindergarten and first grade. We had exchanged pleasantries and learned some trivial things about their family. Erin turned her attention to getting the details from the signage, and I started mentally drifting, completely enjoying the lovely afternoon and our liberation from clinic.
My ear perked up when the oldest girl said something to the mom like, "I think that girl is sick." I looked over at Erin, who had shed her hat in an attempt to let the sun filtering through the trees do something about her very white pate. I thought, "uh oh. What's the mom going to say?" The mom looked uncomfortable and searched for the right words. Before she had formed any words, the girl piped up again, "Does she have chicken pox or something?" The mom's expression changed from uncomfortable to confused. The girl followed up, "Aren't those chicken pox all over her face?" The mom's face brighten, "No, Bella. She's not sick. Those are freckles. Sometimes angels kiss people and leave freckles."
I'm not sure what that comment teaches Bella about healthcare, but it was a profound lesson for us all.
Not Too Bad
October 2, 2008
Note that we have arrived in October. For me, that means a fast downhill slide to New Year's. I give a mid-term on Monday. Projects roll in shortly after, followed by more exams, more homeworks, more projects. Halloween gets stuck in there and, of course, Thanksgiving. Before I can say Jack Robinson, finals come and go, leaving just enough time to shop and get the tree up for Christmas. I also have to fit a few rounds of chemo in and maybe a trip to Amsterdam (if the cards play out right). That's why I'm enjoying this brief hiatus in Houston. [Note to self: when did I start categorizing chemo days as vacation days?]
Erin hated breaking away from school just when she had found a groove, but the new Macbook is giving her confidence that she won't be a world behind when she gets back to class next Tuesday. Today was the fastest Day One of the topless cyclone (topotecan/cyclophosphomide) we have ever had (If you only count infusion time, the critical path last four hours. When you add labs, an office visit, and any meandering by the staff, we usually count on closing clinic down. Today we were six hours start to finish. Whew!). Erin had perfectly normal chemistries, a decent liver panel, and a green light on her CBC:
HGB 9.0 (incrementally better than Monday)
WBC 3800 (a bit low, but fine)
ANC 2300 (normal and fine to start chemo)
PLT 177,000 (we have returned to a normal level, though not as good as Erin's usual)
We did have a couple of highlights in our day. Hans and Lara shared some time with us. Hans having another round of The Rhino while he waits for the green light to head to the City of Brotherly Love for MiBG treatment. Erin also let me slip out and get decent (rather than food court) food for lunch. We had Mediterranean bowls with shrimp, mushrooms, brocolli, and bowtie pasta with alfredo sauce. Yum. We also met a new NB patient: cute Michael who is only one, but a precious boy who is fighting the fight that none of want to fight and none of us want to lose. Erin and I had rented Nim's Island. I didn't expect Jodie Foster, especially a neurotic Jodie Foster. I don't think I liked it as well as Paper Moon, but compared to some of the movies I sit through with Erin, it was decent.
We hit the elevators by ten after 3:00 and never looked back. We decided to go see how the Houston zoo fared after Hurricane Ike. I can't imagine hunkering down at a zoo with a hurricane bearing down. I assume the animals would sense the disaster and panic. Things seemed a little worse for wear (and high winds), but our favorite animals came through and the damage appears manageable.
We're going to eat in the hotel tonight and then climb in bed to watch the debate. If we get an early start in the morning AND A LITTLE LUCK. we ought to make it home in time to enjoy a normal evening tomorrow. We'll wait at home on Saturday until they call us in with news that they have a room ready for us.
Until next time. . .
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