July 29, 2008
I didn't update Erin's page when the U.S. Senate passed the Conquer Childhood Cancer Act by unanimous consent about a week and a half ago (in the middle of our Pittsburgh vacation), and I should have. This was a monumental event, made possible by thousands of people involving themselves in the political process (some for the first time ever!). Anyway, I received word this morning that President Bush will sign the bill into law this morning at 9:55 Bryan time. Please pause and give yourself a pat on the back for all the emails, cards, letters, and prayers you sent that pushed this through. This is a tribute to the process, and I'm proud to be an American where the government can be responsive to the citizenry.
When I went into the bedroom to see Erin's reaction to this news, she didn't get up to dance a jig. When I asked why she was just sitting there and what she was concentrating so intently on, she told me she was setting her watch for 9:55, so she would know exactly when the bill became law! She wasn't going to celebrate until then.
Tuesday, July 29, 2008
Friday, July 25, 2008
Erin's Pittsburgh
July 25, 2008
I let Erin capture her Pittsburgh digitally. Here's a sample of what caught her eye (click on the images to see a larger view):
I let Erin capture her Pittsburgh digitally. Here's a sample of what caught her eye (click on the images to see a larger view):
She also had a grand time with the McBirney/Tjoelkers at Kennywood:
Tomorrow a friend of ours, Nikki, is doing a 24 hour fundraiser for a neuroblastoma foundation, Band of Parents ( www.bandofparents.org ) 9 AM EST to July 27 9 AM EST. Please help her reach her $2,000 goal by donating in honor of Erin.
You can follow along during her fundraiser at: www.bloggingforkids.shebecameabutterfly.net
To donate, please go here:
http://www.change.org/myfundraising/BoPBlogathon
Nikki will feature Erin at 5:30 (Eastern).
Tomorrow a friend of ours, Nikki, is doing a 24 hour fundraiser for a neuroblastoma foundation, Band of Parents ( www.bandofparents.org ) 9 AM EST to July 27 9 AM EST. Please help her reach her $2,000 goal by donating in honor of Erin.
You can follow along during her fundraiser at: www.bloggingforkids.shebecameabutterfly.net
To donate, please go here:
http://www.change.org/myfundraising/BoPBlogathon
Nikki will feature Erin at 5:30 (Eastern).
Monday, July 21, 2008
Erin's Addiction
July 21, 2008
Call it what you want, but it's become a full-blown addiction. It started a bit over three years ago with just a little dabbling with some Florida stuff. She laid off for quite a while, but this summer the cravings returned. Call it what you want. Those with street cred know what I mean. She wants the "bullet," yearns for the"phantom," can't live without the "great white."
I'm worried. I don't understand it. I tried it a few times, always with her, just to see what it was like. I swear, I would never do it voluntarily. Walter and Davis refuse to ever do it and think I'm foolish to go along with it. Does anyone have a cure?
Here's what these demons look like:
THE STEEL EEL
SEA WORLD
San Antonio, Texas
All I can say is that Erin can't get enough. I think it's time for an intervention.
Call it what you want, but it's become a full-blown addiction. It started a bit over three years ago with just a little dabbling with some Florida stuff. She laid off for quite a while, but this summer the cravings returned. Call it what you want. Those with street cred know what I mean. She wants the "bullet," yearns for the"phantom," can't live without the "great white."
I'm worried. I don't understand it. I tried it a few times, always with her, just to see what it was like. I swear, I would never do it voluntarily. Walter and Davis refuse to ever do it and think I'm foolish to go along with it. Does anyone have a cure?
Here's what these demons look like:
THE PHANTOM'S REVENGE,
KENNYWOOD
Pittsburgh, PA
KENNYWOOD
Pittsburgh, PA
THE STEEL EEL
SEA WORLD
San Antonio, Texas
THE GREAT WHITE
SEA WORLD
San Antonio, Texas
There were others, of course: Thunderbolt, recently featured in the New York Times, whose cars take a precipitous drop as soon as they leave the station; Jackrabbit, that changes directions faster than a bunny with Willie on its heels; The Racer, I can't explain why these two cars don't collide as they race simultaneous through the coaster structure, switching tracks with impunity; and of course, the Boardwalk Bullet, which is simply fast and creaky.San Antonio, Texas
All I can say is that Erin can't get enough. I think it's time for an intervention.
Friday, July 18, 2008
Back in the Groove
July 18, 2008
We had no sooner returned from Pittsburgh, ate, and slept before we had to hie ourselves to Houston for an office visit and labs in preparation for starting round 4 of irinotecan and temador. Erin was decidedly snippy at clinic (not being her first choice as an apres-vacances spot), but everything went smoothly enough (minimal delays since Dr. Russell had to catch a flight to Chicago for the Neuroblastoma Conference for a big panel discussion on relapsed NB).
HGB 12.1 (normal)
WBC 2870 (low)
ANC 1410 (almost low normal)
PLT 281,000 (normal)
BUN 20 (5-25)
Creatinine .7 (.2-1.2)
These are slightly better than the labs before we began round 3, so we were all satisfied. I quizzed Dr. Russell about the scan results from three weeks ago and looked carefully at them on the monitor. While the tumor area remains larger than it was in January (where you can't really see anything on the CT unless you know what you are looking for), it is at least 80 percent smaller than it was in May. I did not get a definitive answer to the question about whether Erin was MIBG avid again. The radiologist made the call that she was, but Dr. Russell and I think that the bright spot referred to in the report is more likely just an intestinal loop (which naturally takes up spotty bits of the tracer) in the general area of the tumor that shows on the CT scan. Any way, she is either MIBG avid, with no other spots anywhere in her body, or she's still not avid. The bottom line is that this particular scan doesn't add new information, so for the time being we are going to go back to the bone scan, rather than risk the higher radiation exposure of the MIBG, the nastiness of the lugol drops to protect the thyroid, and the inconvenience of a two day scan.
The other topic we spent some time with was Erin's overall reaction to this treatment plan. We have no complaints on digestive issues (the biggest concern going in), but Erin does express irritation with getting tired. This feeling peaks in the second week of treatment (irinotecan only) and is accompanied by some appetite loss. Frankly, I can't tell how seriously to take her on this topic. She says she wants to sleep in longer in the morning, and I know when there's nothing going on she sloths around. Parents of healthy eleven year olds, does this sound familiar? We're going to continue to monitor the situation. I'm uncomfortable with staying on a treatment over a long period of time that makes her feel "not herself" two weeks out of three, but the excellent response she had after two rounds gives me some reason to remain patient for now. Scans come up again in the first week of school (August 28). The other thing that we're keeping a close eye on is Erin's intermittent mention of back pain. This first came about five days after the June scans. Such rapid progression is not unheard of in the NB world, but had her tumor grown enough in five days to cause her back to hurt, another fifteen days at the same rate would put her in excruciating pain, which she doesn't have. In fact, even though she has had back pain, she has refused tylenol every time when offered. And the pain didn't keep her from walking multiple miles every day in Pittsburgh and didn't seem any worse having lurched and catapulted around on all of the most dangerous rides at Kennywood. The whole back thing leaves Walter and I puzzled. Perhaps the physical therapist will have something to add at her visit this afternoon.
Pittsburgh was great (no joke), and whether you like it or not, you will have Pittsburgh lessons over the next week or so. Here is the first:
This is not a tribute to robber barons of the nineteenth century, but rather the Cathedral of Learning at the University of Pittsburgh. “They shall find wisdom here and faith—in steel and stone, in character and thought—they shall find beauty, adventure, and moments of high victory.” Students attend classes in this building and lucky professors have their offices there.
You can also find old intermingled with new:
Robotic sheep to mow your grass:
Whimsical public art:
And the merely amazing (the columns of the Mellon Institute are the largest in the world in single pieces, as opposed to stacked sections):
I'll stop for now with a promise of more Pittsburgh later. Erin and I have laundry to do so we can re-pack and head to San Antonio tomorrow for a 3 v 3 soccer tournament. That's right. I ditched my plans to go to the neuroblastoma conference in Chicago so that I could sweat. I made that choice happily, because there are probably a finite number of soccer games in her future (I'm crossing my fingers for a finite number like 763 or 1215 and not eleven).
We had no sooner returned from Pittsburgh, ate, and slept before we had to hie ourselves to Houston for an office visit and labs in preparation for starting round 4 of irinotecan and temador. Erin was decidedly snippy at clinic (not being her first choice as an apres-vacances spot), but everything went smoothly enough (minimal delays since Dr. Russell had to catch a flight to Chicago for the Neuroblastoma Conference for a big panel discussion on relapsed NB).
HGB 12.1 (normal)
WBC 2870 (low)
ANC 1410 (almost low normal)
PLT 281,000 (normal)
BUN 20 (5-25)
Creatinine .7 (.2-1.2)
These are slightly better than the labs before we began round 3, so we were all satisfied. I quizzed Dr. Russell about the scan results from three weeks ago and looked carefully at them on the monitor. While the tumor area remains larger than it was in January (where you can't really see anything on the CT unless you know what you are looking for), it is at least 80 percent smaller than it was in May. I did not get a definitive answer to the question about whether Erin was MIBG avid again. The radiologist made the call that she was, but Dr. Russell and I think that the bright spot referred to in the report is more likely just an intestinal loop (which naturally takes up spotty bits of the tracer) in the general area of the tumor that shows on the CT scan. Any way, she is either MIBG avid, with no other spots anywhere in her body, or she's still not avid. The bottom line is that this particular scan doesn't add new information, so for the time being we are going to go back to the bone scan, rather than risk the higher radiation exposure of the MIBG, the nastiness of the lugol drops to protect the thyroid, and the inconvenience of a two day scan.
The other topic we spent some time with was Erin's overall reaction to this treatment plan. We have no complaints on digestive issues (the biggest concern going in), but Erin does express irritation with getting tired. This feeling peaks in the second week of treatment (irinotecan only) and is accompanied by some appetite loss. Frankly, I can't tell how seriously to take her on this topic. She says she wants to sleep in longer in the morning, and I know when there's nothing going on she sloths around. Parents of healthy eleven year olds, does this sound familiar? We're going to continue to monitor the situation. I'm uncomfortable with staying on a treatment over a long period of time that makes her feel "not herself" two weeks out of three, but the excellent response she had after two rounds gives me some reason to remain patient for now. Scans come up again in the first week of school (August 28). The other thing that we're keeping a close eye on is Erin's intermittent mention of back pain. This first came about five days after the June scans. Such rapid progression is not unheard of in the NB world, but had her tumor grown enough in five days to cause her back to hurt, another fifteen days at the same rate would put her in excruciating pain, which she doesn't have. In fact, even though she has had back pain, she has refused tylenol every time when offered. And the pain didn't keep her from walking multiple miles every day in Pittsburgh and didn't seem any worse having lurched and catapulted around on all of the most dangerous rides at Kennywood. The whole back thing leaves Walter and I puzzled. Perhaps the physical therapist will have something to add at her visit this afternoon.
Pittsburgh was great (no joke), and whether you like it or not, you will have Pittsburgh lessons over the next week or so. Here is the first:
This is not a tribute to robber barons of the nineteenth century, but rather the Cathedral of Learning at the University of Pittsburgh. “They shall find wisdom here and faith—in steel and stone, in character and thought—they shall find beauty, adventure, and moments of high victory.” Students attend classes in this building and lucky professors have their offices there.
You can also find old intermingled with new:
Robotic sheep to mow your grass:
Whimsical public art:
And the merely amazing (the columns of the Mellon Institute are the largest in the world in single pieces, as opposed to stacked sections):
I'll stop for now with a promise of more Pittsburgh later. Erin and I have laundry to do so we can re-pack and head to San Antonio tomorrow for a 3 v 3 soccer tournament. That's right. I ditched my plans to go to the neuroblastoma conference in Chicago so that I could sweat. I made that choice happily, because there are probably a finite number of soccer games in her future (I'm crossing my fingers for a finite number like 763 or 1215 and not eleven).
Thursday, July 10, 2008
Alpacas?
July 10, 2008
One of our close NB friends, Ryan "Batman" Williams had an unexpectedly quick decline and this horrible disease snatched another best-beloved boy from us yesterday. We have got to work harder to protect our children!
Go Batman Go! Bam! Zowie! Kapow!
***************************
The Buengers head for Pittsburgh tomorrow, bright (and don't know why pre-dawn would be considered bright) and early (but I do know why it would be considered early). We should have been packing this morning, but instead, Erin and I went with the Carpenter's Kids to Royal Oaks Alpaca farm. What I didn't know about alpacas before this morning would fill a ditch (like the Grand Canyon). Here are two pics. One with Erin feeding a three month old baby alpaca. The other with Erin making covered soap with alpaca fiber and wool.
One more dose of Irinotecan and then nine days off. We probably shouldn't be flying commercial, with all the germ potential those high-use planes have, but I think I'll just take a lot of hand sanitizer and alcohol wipes. Erin hasn't complained of GI problems during this cycle, but she had some tiredness that she doesn't like. She's says sometimes she's tired even when I'm not asking her to do chores. I hope this doesn't become a repeating problem. During the summer there's plenty of time to rest, but once the school year starts, it will make her very mad if she doesn't have the energy to do what she wants.
One of our close NB friends, Ryan "Batman" Williams had an unexpectedly quick decline and this horrible disease snatched another best-beloved boy from us yesterday. We have got to work harder to protect our children!
Go Batman Go! Bam! Zowie! Kapow!
***************************
The Buengers head for Pittsburgh tomorrow, bright (and don't know why pre-dawn would be considered bright) and early (but I do know why it would be considered early). We should have been packing this morning, but instead, Erin and I went with the Carpenter's Kids to Royal Oaks Alpaca farm. What I didn't know about alpacas before this morning would fill a ditch (like the Grand Canyon). Here are two pics. One with Erin feeding a three month old baby alpaca. The other with Erin making covered soap with alpaca fiber and wool.
One more dose of Irinotecan and then nine days off. We probably shouldn't be flying commercial, with all the germ potential those high-use planes have, but I think I'll just take a lot of hand sanitizer and alcohol wipes. Erin hasn't complained of GI problems during this cycle, but she had some tiredness that she doesn't like. She's says sometimes she's tired even when I'm not asking her to do chores. I hope this doesn't become a repeating problem. During the summer there's plenty of time to rest, but once the school year starts, it will make her very mad if she doesn't have the energy to do what she wants.
Sunday, July 6, 2008
Not As Eventful, But Just as Much Fun
July 6, 2008
I know you won't believe me, but last week we mostly stayed out of the car and still managed to enjoy ourselves. We did a complete and total deep cleaning of Erin's room, including dusting every single item she owns (which in and of itself could explain the week-long absence of posts to this site). I could have started a pool with the pay out going to the person who came closest to predicting how long she could maintain the new, unadulterated state of her room, but unfortunately I didn't think of it soon enough and the opportunity has past.
Lately, Erin has put the pressure on our Congressman, Chet Edwards, about when he is going to open his local campaign headquarters (Erin calls this "The Chet Store" because she always gets stuff, like buttons and stickers when she goes there). We think it will be later this summer. In the meantime, she will have to be satisfied with the notable item that arrived in the mail this week from her friend Marsha Milford. It's a postcard from Chet's campaign 30 years ago (postmarked May 2, 1978). No wonder Lea Ann snapped him up!
Erin also has had a blast having twin sisters, Mary Beth and Rachel, visiting their grandparents next door. This happy occasion goes far in explaining why I haven't had to drive as much. . .if you can have fun with friends right in the neighborhood, then you don't have to go looking for it in town. The convenience of having friends next door certainly makes the concept of neighborhood living more appealing. The girls have raced up and down the road on every type of non-motorized wheeled vehicle imaginable, done a bunch of lake swimming, and in general, just hung out.
Saturday, when Mary Beth and Rachel had to drive over to Huntsville for a family reunion, Erin re-grouped and spent the day cooking for a small dinner party we had planned for that evening. She chose chicken wraps, potato boats (see below), guacamole and homemade dippers, and a fruit parfait, as her contribution to the get together. I'm not sure where Erin's cooking initiative came from, but we're glad she has it.
In exchange for a lovely dinner, our friend George brought his magic show. Erin tried her very hardest to figure out the illusions and slight-of-hands. Notice, in this video that even in a simple coin trick her eyes never leave the George's hands.
She cares not a wit that George:
Two other aspects of the week bear noting (uh oh, back to the miserable world of neuroblastoma). Last Monday Erin began the third cycle of temador/irinotecan, and I can report that she has had no Imodium nor any other noteworthy health issues the entire week (any tiredness she complained of was a thinly veiled attempt to avoid the above mentioned room cleaning expedition). We do not have to report back to Houston until July 17, when we'll have labs and an office visit to get the okay for Cycle 4. This gives us just enough time to finish up this round early Friday morning and fit in a trip to Pittsburgh before we have to see Dr. Russell again.
For those of you who have perused Erin's complete timeline link, you may note that this week marks the sixth anniversary of the beginning of the diagnostic process that ultimately plunged us into NBWorld. Back in 2002, Erin hadn't yet started public school. NB interrupted swimming lessons and vacation Bible school. Now , Erin has moved on to competitive soccer, horseback riding, piano, and in a few short weeks. . .Middle School. We're still in the fight and proud of it.
I know you won't believe me, but last week we mostly stayed out of the car and still managed to enjoy ourselves. We did a complete and total deep cleaning of Erin's room, including dusting every single item she owns (which in and of itself could explain the week-long absence of posts to this site). I could have started a pool with the pay out going to the person who came closest to predicting how long she could maintain the new, unadulterated state of her room, but unfortunately I didn't think of it soon enough and the opportunity has past.
Lately, Erin has put the pressure on our Congressman, Chet Edwards, about when he is going to open his local campaign headquarters (Erin calls this "The Chet Store" because she always gets stuff, like buttons and stickers when she goes there). We think it will be later this summer. In the meantime, she will have to be satisfied with the notable item that arrived in the mail this week from her friend Marsha Milford. It's a postcard from Chet's campaign 30 years ago (postmarked May 2, 1978). No wonder Lea Ann snapped him up!
Erin also has had a blast having twin sisters, Mary Beth and Rachel, visiting their grandparents next door. This happy occasion goes far in explaining why I haven't had to drive as much. . .if you can have fun with friends right in the neighborhood, then you don't have to go looking for it in town. The convenience of having friends next door certainly makes the concept of neighborhood living more appealing. The girls have raced up and down the road on every type of non-motorized wheeled vehicle imaginable, done a bunch of lake swimming, and in general, just hung out.
Saturday, when Mary Beth and Rachel had to drive over to Huntsville for a family reunion, Erin re-grouped and spent the day cooking for a small dinner party we had planned for that evening. She chose chicken wraps, potato boats (see below), guacamole and homemade dippers, and a fruit parfait, as her contribution to the get together. I'm not sure where Erin's cooking initiative came from, but we're glad she has it.
In exchange for a lovely dinner, our friend George brought his magic show. Erin tried her very hardest to figure out the illusions and slight-of-hands. Notice, in this video that even in a simple coin trick her eyes never leave the George's hands.
She cares not a wit that George:
- is a Distinguished Professor of Political Science at Texas A&M University;
- holds the George and Julia Blucher Jordan Chair in Presidential Studies;
- has served as the Olin Professor of American Government at Oxford and the John Adams Fellow at the University of London;
- has held senior visiting appointments at Peking University, Hebrew University of Jerusalem, and the U.S. Military Academy at West Point;
- is an Associate Member of Nuffield College at the University of Oxford; and
- was the founder and from 1991-2001 the director of The Center for Presidential Studies.
Two other aspects of the week bear noting (uh oh, back to the miserable world of neuroblastoma). Last Monday Erin began the third cycle of temador/irinotecan, and I can report that she has had no Imodium nor any other noteworthy health issues the entire week (any tiredness she complained of was a thinly veiled attempt to avoid the above mentioned room cleaning expedition). We do not have to report back to Houston until July 17, when we'll have labs and an office visit to get the okay for Cycle 4. This gives us just enough time to finish up this round early Friday morning and fit in a trip to Pittsburgh before we have to see Dr. Russell again.
For those of you who have perused Erin's complete timeline link, you may note that this week marks the sixth anniversary of the beginning of the diagnostic process that ultimately plunged us into NBWorld. Back in 2002, Erin hadn't yet started public school. NB interrupted swimming lessons and vacation Bible school. Now , Erin has moved on to competitive soccer, horseback riding, piano, and in a few short weeks. . .Middle School. We're still in the fight and proud of it.
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