August 29, 2008
As I walked around the lake this morning in the pre-dawn darkness, I understood how in the dark I really was. I will spend the day waiting for the phone to ring. When the call comes, the screen on my cell will say "Unknown" because the hospital blocks caller ID. Still, I'll know who it is. What I won't know, until I answer, is whether Erin's scan results yesterday will let us continue down the path that we know--eight classes a day at the middle school (confusing and yet exciting), chemo at home (yucky, but tolerable), Mystic soccer (tough and thrilling)--or whether we'll be thrown into the Unknown--harder treatment, probable hair loss, neutropenia, hospitalizations.
Friday, August 29, 2008
Wednesday, August 27, 2008
Be Still
August 27, 2008
I never have a video camera when I need it, and that's why I haven't won the grand prize on America's Funniest Home Videos.
Most of the time I have to walk Willie on a leash to keep him from bolting across the fence into the "rifleman's" property. [NOTE: The "rifleman" shot our neighbor's 12-year-old golden retriever at 3:00 in the morning a few months ago, stripped his collar, and dumped his body about two miles down Leonard Road towards the river. It made everyone in the neighborhood extremely angry, but I think we are all a bit intimidated by a nut who would kill a family pet in the middle of the night with a deer rifle.] Parts of our walk he can roam free, but the closer we return to home the more urgent my desire to have him on the end of the leash.
Last weekend it seemed especially unfair to leash him. Teddy and Uma were cavorting around freely (since they don't cross the fence), and we had picked up Willie's friend Tommy-Girl (who was also cavorting or perhaps more accurately parading her female wares) as we passed the far side of the lake. But I'm no softie. I clipped the leash on to his collar and proceeded up the road. It is one way I add to my fitness regimen: holding him in my grip as he lunges and throws his seventy pounds in various directions trying to play as with his friends and hie after Mrs. Bun. I soldiered forward, bent forward with the leash playing back over my shoulder. I tried to channel Ernest Hemingway bringing in a worthy fish. I struggled forward, not making much headway. I looked behind and figured out why Erin was laughing so hard. Willie and Tommy-Girl were having marital relations at the end of my leash, and I was dragging them both down the road. Talk about dead weight. It brought a whole new perspective to walking the dog.
Oh well, it's just a story to take your mind off of scans tomorrow. If luck is on our side, things will run smoothly. We'll hear good results on Friday, and start round six of irinotecan and temador next week. If not, then we will continue the process of fighting Erin's cancer in another direction. And so I tell myself, you can't control everything. Hell, you can't even control your dog when he's at the end of his leash. The best thing is to be still and open to the possibilities that you encounter.
I never have a video camera when I need it, and that's why I haven't won the grand prize on America's Funniest Home Videos.
Most of the time I have to walk Willie on a leash to keep him from bolting across the fence into the "rifleman's" property. [NOTE: The "rifleman" shot our neighbor's 12-year-old golden retriever at 3:00 in the morning a few months ago, stripped his collar, and dumped his body about two miles down Leonard Road towards the river. It made everyone in the neighborhood extremely angry, but I think we are all a bit intimidated by a nut who would kill a family pet in the middle of the night with a deer rifle.] Parts of our walk he can roam free, but the closer we return to home the more urgent my desire to have him on the end of the leash.
Last weekend it seemed especially unfair to leash him. Teddy and Uma were cavorting around freely (since they don't cross the fence), and we had picked up Willie's friend Tommy-Girl (who was also cavorting or perhaps more accurately parading her female wares) as we passed the far side of the lake. But I'm no softie. I clipped the leash on to his collar and proceeded up the road. It is one way I add to my fitness regimen: holding him in my grip as he lunges and throws his seventy pounds in various directions trying to play as with his friends and hie after Mrs. Bun. I soldiered forward, bent forward with the leash playing back over my shoulder. I tried to channel Ernest Hemingway bringing in a worthy fish. I struggled forward, not making much headway. I looked behind and figured out why Erin was laughing so hard. Willie and Tommy-Girl were having marital relations at the end of my leash, and I was dragging them both down the road. Talk about dead weight. It brought a whole new perspective to walking the dog.
Oh well, it's just a story to take your mind off of scans tomorrow. If luck is on our side, things will run smoothly. We'll hear good results on Friday, and start round six of irinotecan and temador next week. If not, then we will continue the process of fighting Erin's cancer in another direction. And so I tell myself, you can't control everything. Hell, you can't even control your dog when he's at the end of his leash. The best thing is to be still and open to the possibilities that you encounter.
Monday, August 25, 2008
Obligatory First Day of School Pics
August 25, 2008
I can't believe none of you thought the photo of "The Food of the Gods" in yesterday's entry was funny enough to comment on. I cracked up every time I looked at it.
Oh well, mark that up to the second thing I couldn't believe today. The first was that my baby, the one who is now 41 month survivor of relapsed neuroblastoma, started middle school this morning:
She even brushed her teeth first with time to spare before the 8:00 bell!
I can't believe none of you thought the photo of "The Food of the Gods" in yesterday's entry was funny enough to comment on. I cracked up every time I looked at it.
Oh well, mark that up to the second thing I couldn't believe today. The first was that my baby, the one who is now 41 month survivor of relapsed neuroblastoma, started middle school this morning:
She even brushed her teeth first with time to spare before the 8:00 bell!
Sunday, August 24, 2008
How Do You Stay Fit?
August 24, 2008
Those of you who know me, know I had a Chet Edwards sticker on my new van well before I even had license plates for it. Thus, you would expect that I had prepared a cute entry for Erin's home page in case Barack Obama named Chet as his running mate (he made the final four, but not the championship). It included the following quote from Erin:
"Chet Edwards is a great man. He knows what he is doing and will help America. One more thing. . .he's is my best friend over age 11."
We were all a little disappointed, because the inauguration (was I getting ahead of myself?) sounded like loads of fun. Anyway, he didn't get chosen, but I don't think it's a stretch to say that had he been chosen and elected, we could not have had a better advocate for pediatric cancer and neuroblastoma in the White House. As it played out, he'll just have to put his full energy on getting the Conquer Childhood Cancer Act through the Appropriations Committee, where he is a high-ranking member.
On to less lofty, but perhaps more interesting topics. Erin, Walter, and I had a good last week of summer. Erin decided she wanted to work on personal fitness (which apparently involves me working on my personal fitness, too). Had I had the sense to settle in a neighborhood with other families and children her age, I suspect I would not be viewed as such a classy prospect to spend time with. As it was, we did cross country, off-road bike training on Monday (three miles, twenty three minutes) and kayaking on Friday. I took the other days off, but Erin soldiered on without me.
Thursday, soccer practice fit the requirements for a good workout. I can't remember what she did for exercise on Wednesday (though I could look it up in her little planning notebook, if I had the energy). On Tuesday, I tricked Elaine into lending me Nico and Adam, so I wouldn't have to be her workout partner. I think they went with marathon hopscotching as the AAD (aerobic activity of the day).
Hopscotching fit with the other retro theme of the week. Erin discovered Walter's complete collection of Classics Illustrated Comic Books and she has spent hours with them. Here are the first three in the series (I think we can all agree these are classics, even though perhaps not the best books ever written)
By the time you reach number 160 in the Classics Illustrated series, you might think they stretched the concept too far:
This weekend the Mystic '97 competed in their second and final warm-up tournament (as if we here in central Texas actually need warming up on the next-to-last weekend in August). It turned out to have worked out well that Erin focused on personal fitness this week. We were quite short handed at the tournament and played two of our matches (sixty-minutes each) with no subs and only an hour break between them. The girls (including Erin) were very brave and battled until the final whistle blew in each game.
Note to self: remember to email Erin's doctor with the information that Erin took a ball to the face kicked from about ten feet away that knocked her to the ground. No doubt if I don't, the radiologist will think Erin's neuroblastoma has spread to her cheek and skull when they read her bone scan on Thursday.
We do need to activate the coast-to-coast praying and luck generating network. In the latter part of the week Erin, along with Hans, Sam, and Will are all doing scans to check the effectiveness of their most recent treatments. I would like to think there was so many supplications being sent up that we cause a brown out in the prayer grid.
Those of you who know me, know I had a Chet Edwards sticker on my new van well before I even had license plates for it. Thus, you would expect that I had prepared a cute entry for Erin's home page in case Barack Obama named Chet as his running mate (he made the final four, but not the championship). It included the following quote from Erin:
"Chet Edwards is a great man. He knows what he is doing and will help America. One more thing. . .he's is my best friend over age 11."
We were all a little disappointed, because the inauguration (was I getting ahead of myself?) sounded like loads of fun. Anyway, he didn't get chosen, but I don't think it's a stretch to say that had he been chosen and elected, we could not have had a better advocate for pediatric cancer and neuroblastoma in the White House. As it played out, he'll just have to put his full energy on getting the Conquer Childhood Cancer Act through the Appropriations Committee, where he is a high-ranking member.
On to less lofty, but perhaps more interesting topics. Erin, Walter, and I had a good last week of summer. Erin decided she wanted to work on personal fitness (which apparently involves me working on my personal fitness, too). Had I had the sense to settle in a neighborhood with other families and children her age, I suspect I would not be viewed as such a classy prospect to spend time with. As it was, we did cross country, off-road bike training on Monday (three miles, twenty three minutes) and kayaking on Friday. I took the other days off, but Erin soldiered on without me.
Thursday, soccer practice fit the requirements for a good workout. I can't remember what she did for exercise on Wednesday (though I could look it up in her little planning notebook, if I had the energy). On Tuesday, I tricked Elaine into lending me Nico and Adam, so I wouldn't have to be her workout partner. I think they went with marathon hopscotching as the AAD (aerobic activity of the day).
Hopscotching fit with the other retro theme of the week. Erin discovered Walter's complete collection of Classics Illustrated Comic Books and she has spent hours with them. Here are the first three in the series (I think we can all agree these are classics, even though perhaps not the best books ever written)
By the time you reach number 160 in the Classics Illustrated series, you might think they stretched the concept too far:
This weekend the Mystic '97 competed in their second and final warm-up tournament (as if we here in central Texas actually need warming up on the next-to-last weekend in August). It turned out to have worked out well that Erin focused on personal fitness this week. We were quite short handed at the tournament and played two of our matches (sixty-minutes each) with no subs and only an hour break between them. The girls (including Erin) were very brave and battled until the final whistle blew in each game.
Note to self: remember to email Erin's doctor with the information that Erin took a ball to the face kicked from about ten feet away that knocked her to the ground. No doubt if I don't, the radiologist will think Erin's neuroblastoma has spread to her cheek and skull when they read her bone scan on Thursday.
We do need to activate the coast-to-coast praying and luck generating network. In the latter part of the week Erin, along with Hans, Sam, and Will are all doing scans to check the effectiveness of their most recent treatments. I would like to think there was so many supplications being sent up that we cause a brown out in the prayer grid.
Tuesday, August 19, 2008
No Goals, But Hurray Anyway
August 19, 2008
You'd think I would be upset that the Mystic '97 scored no goals last weekend when their opponents racked up twelve goals in four games. They looked pretty lethargic. Instead, I was grateful that Erin made it to the pitch.
I think (hope? pray? expect? need to believe?) that Erin's back pain has resolved to its usual level of discomfort, as opposed to its concern-raising levels last week. In hindsight, I think she probably had a small virus and some sore muscles from overdoing during the Cypress Ball Festival, complicated by constipation. I don't know why the constipation took me by surprise, but I didn't even think of it until I had wasted several days considering other culprits. We eventually (by Sunday or perhaps Monday) got things moving, though if the first round of irinotecan we did in late May provides any evidence, we need to look for diarrhea to follow.
Friday, Saturday, and Sunday she sort of eased into feeling better (more energy, less complaining), but the progress was never convincing enough for me to accept that she was on the mend. Yesterday and today, thankfully, have been almost normal. Erin delivered meals-on-wheels with her buddy Jackson in the morning and then went to his house to play for a few hours. They met Nico, Adam, and Jesse at glow-in-the-dark putt putt. She is trying to get back in shape for soccer, so she did some aerobic work on her bike before the rains came last night--three miles cross country in 23 minutes. Today she has mainly just played with Nico and Adam. Her appetite is sluggish, but she usually eats at least one meal of decent proportion every day. The main contrast with last week is the return of her smile and a sense of humor.
We have moved the administration of the irinotecan from 6:30 a.m. to 9:00 p.m. with the hopes of sleeping off the toxicities and having a perkier school day. I gave her the option of waiting until later in the evening, then waking her to give it to her (like we did for the a.m. doses), but she has willingly taken it the last two nights--with a dark chocolate chaser--no gagging, no complaints. Now, if I can just stick with the routine for three more days, I can have a week off.
On a closing note, did anyone notice the Brazilian women's beach volleyball team's suits only had "Bra" written across them? Is that so they can tell which piece of the bikini to wear on top?
You'd think I would be upset that the Mystic '97 scored no goals last weekend when their opponents racked up twelve goals in four games. They looked pretty lethargic. Instead, I was grateful that Erin made it to the pitch.
I think (hope? pray? expect? need to believe?) that Erin's back pain has resolved to its usual level of discomfort, as opposed to its concern-raising levels last week. In hindsight, I think she probably had a small virus and some sore muscles from overdoing during the Cypress Ball Festival, complicated by constipation. I don't know why the constipation took me by surprise, but I didn't even think of it until I had wasted several days considering other culprits. We eventually (by Sunday or perhaps Monday) got things moving, though if the first round of irinotecan we did in late May provides any evidence, we need to look for diarrhea to follow.
Friday, Saturday, and Sunday she sort of eased into feeling better (more energy, less complaining), but the progress was never convincing enough for me to accept that she was on the mend. Yesterday and today, thankfully, have been almost normal. Erin delivered meals-on-wheels with her buddy Jackson in the morning and then went to his house to play for a few hours. They met Nico, Adam, and Jesse at glow-in-the-dark putt putt. She is trying to get back in shape for soccer, so she did some aerobic work on her bike before the rains came last night--three miles cross country in 23 minutes. Today she has mainly just played with Nico and Adam. Her appetite is sluggish, but she usually eats at least one meal of decent proportion every day. The main contrast with last week is the return of her smile and a sense of humor.
We have moved the administration of the irinotecan from 6:30 a.m. to 9:00 p.m. with the hopes of sleeping off the toxicities and having a perkier school day. I gave her the option of waiting until later in the evening, then waking her to give it to her (like we did for the a.m. doses), but she has willingly taken it the last two nights--with a dark chocolate chaser--no gagging, no complaints. Now, if I can just stick with the routine for three more days, I can have a week off.
On a closing note, did anyone notice the Brazilian women's beach volleyball team's suits only had "Bra" written across them? Is that so they can tell which piece of the bikini to wear on top?
Friday, August 15, 2008
What Do You Do With a Drunken Sailor?
August 15, 2008
Erin had the kind of week that left me puzzling over a variety of possibilities. She had a most excellent day on Monday, starting with her chemo bright (actually dark) and early, followed by a full morning orientation for a new GT program at her school, then two hours of swimming and cypress ball antics (see The Davis Report for details). She topped the day off with hours upon hours of playing with Nico and Adam. Tuesday wasn't nearly as fine.
She had a persistent headache (this is a common complaint during temador week), her right shoulder and upper arm ached (probably from throwing cypress balls), her back hurt (I can always think of a million reasons why her back might hurt, none of them as convincing to my deepest fears as tumor progression), and her chest was sore when she breathed deeply. She also ran a small fever. By noon she felt better, although I canceled her planned putt putt golf outing and made her stick close to home all day. Her temperature crept back up above normal in the evening.
She felt better on Wednesday than Tuesday. No fever; milder aches and pains. She did, however, fall asleep for about an hour in the afternoon. That night she slept rather fitfully and claimed to have bad dreams during the night and during the nap.
Her headache was worse on Thursday. Her chest continued to cause pain when she breathed deeply. Her back was no better, but her shoulder seemed less tender. She is quite tired, but claimed she couldn't sleep. Our best beloved daughter (how can I put this delicately?) was WHINY AND NEGATIVE. She felt crummy enough to suggest a trip to the pediatrician to see if he had any ideas that would explain the way she felt.
Normal counts in every category and clear chest, ears, and throat eliminated most of the illnesses I was hoping for.
[Aside: Is it only cancer parents who start quizzing their children when they feel bad and are delighted when they have a constellation of symptoms that suggest childhood illness? I heard myself asking Erin leading questions, hoping I could piece together enough symptoms that I could conclude she had the flu or an upper respiratory infection or something:
Mom: Does your head hurt?
Erin: Yes, a lot.
Mom (hopefully): What about your chest? Does that still hurt when you breathe in?
Erin: Yes.
Mom: Good, baby. What about your throat? Does your throat hurt?
Erin: No (mom apparently looks disappointed). . .well maybe a little.
And so on.]
So there I was, contemplating Erin's complaints of pain and fatigue this week. It is so hard to sort it all out. How much of it can I attribute to some sort of virus? Certainly, headaches and fatigue come as a constant, if uninvited, companion to irinotecan and temador. Could she need more attention from the already unraveling mom and dad, who dedicated the week to launching Davis on his intercontinental adventure? Had asking her to clean her room after Ayesha's visit led to an elaborate work avoidance scheme? Maybe it was just an imaginative ploy to trick me into letting her watch more of the Olympics. Yet the answer that Pat Lacey calls the 500 Pound Man, (that is, will our scans in two weeks show Erin's cancer spreading?), kept rattling around in my head.
That's why when Erin came out of her room this morning singing that famous traditional sea shanty, "What Do You Do With a Drunken Sailor" I didn't stop to think about why my daughter had chosen to regale me with a song that begins with the indiscreet imbibing on the part of someone I have never met and whose subsequent verses each suggest a method of sobering--or castigating, or simply abusing--the hypothetical sailor. All I could think of was that she was singing instead of grumbling. I joined in the "earl-eye in the morning" refrain and fetched her a little breakfast.
Erin ate a modest amount, mainly peaches and yogurt, and decided she wanted to go to Camp Lobo, an all-day program at her new middle school. It's almost 2:00, and I haven't gotten a call from her or anyone else at the school asking me to come and fetch her. I hope that means she's feeling well and enjoying herself and that I can move on to other worries (like whether Davis will wake up from his layover nap in the Charles de Gaulle airport in Paris to board his flight to Budapest).
Erin had the kind of week that left me puzzling over a variety of possibilities. She had a most excellent day on Monday, starting with her chemo bright (actually dark) and early, followed by a full morning orientation for a new GT program at her school, then two hours of swimming and cypress ball antics (see The Davis Report for details). She topped the day off with hours upon hours of playing with Nico and Adam. Tuesday wasn't nearly as fine.
She had a persistent headache (this is a common complaint during temador week), her right shoulder and upper arm ached (probably from throwing cypress balls), her back hurt (I can always think of a million reasons why her back might hurt, none of them as convincing to my deepest fears as tumor progression), and her chest was sore when she breathed deeply. She also ran a small fever. By noon she felt better, although I canceled her planned putt putt golf outing and made her stick close to home all day. Her temperature crept back up above normal in the evening.
She felt better on Wednesday than Tuesday. No fever; milder aches and pains. She did, however, fall asleep for about an hour in the afternoon. That night she slept rather fitfully and claimed to have bad dreams during the night and during the nap.
Her headache was worse on Thursday. Her chest continued to cause pain when she breathed deeply. Her back was no better, but her shoulder seemed less tender. She is quite tired, but claimed she couldn't sleep. Our best beloved daughter (how can I put this delicately?) was WHINY AND NEGATIVE. She felt crummy enough to suggest a trip to the pediatrician to see if he had any ideas that would explain the way she felt.
Normal counts in every category and clear chest, ears, and throat eliminated most of the illnesses I was hoping for.
[Aside: Is it only cancer parents who start quizzing their children when they feel bad and are delighted when they have a constellation of symptoms that suggest childhood illness? I heard myself asking Erin leading questions, hoping I could piece together enough symptoms that I could conclude she had the flu or an upper respiratory infection or something:
Mom: Does your head hurt?
Erin: Yes, a lot.
Mom (hopefully): What about your chest? Does that still hurt when you breathe in?
Erin: Yes.
Mom: Good, baby. What about your throat? Does your throat hurt?
Erin: No (mom apparently looks disappointed). . .well maybe a little.
And so on.]
So there I was, contemplating Erin's complaints of pain and fatigue this week. It is so hard to sort it all out. How much of it can I attribute to some sort of virus? Certainly, headaches and fatigue come as a constant, if uninvited, companion to irinotecan and temador. Could she need more attention from the already unraveling mom and dad, who dedicated the week to launching Davis on his intercontinental adventure? Had asking her to clean her room after Ayesha's visit led to an elaborate work avoidance scheme? Maybe it was just an imaginative ploy to trick me into letting her watch more of the Olympics. Yet the answer that Pat Lacey calls the 500 Pound Man, (that is, will our scans in two weeks show Erin's cancer spreading?), kept rattling around in my head.
That's why when Erin came out of her room this morning singing that famous traditional sea shanty, "What Do You Do With a Drunken Sailor" I didn't stop to think about why my daughter had chosen to regale me with a song that begins with the indiscreet imbibing on the part of someone I have never met and whose subsequent verses each suggest a method of sobering--or castigating, or simply abusing--the hypothetical sailor. All I could think of was that she was singing instead of grumbling. I joined in the "earl-eye in the morning" refrain and fetched her a little breakfast.
Erin ate a modest amount, mainly peaches and yogurt, and decided she wanted to go to Camp Lobo, an all-day program at her new middle school. It's almost 2:00, and I haven't gotten a call from her or anyone else at the school asking me to come and fetch her. I hope that means she's feeling well and enjoying herself and that I can move on to other worries (like whether Davis will wake up from his layover nap in the Charles de Gaulle airport in Paris to board his flight to Budapest).
Sunday, August 10, 2008
Top 10 Best Things About Vacation Ending . . .
August 10, 2008
10. No more thin, hard hotel pillows.
9. Coffee that actually tastes like coffee.
8. Always available internet access.
7. Everyone's poop is back to normal.
6. Adults and children don't have to share the bathroom sink.
5. More than one comfy chair.
4. Readily available vegetables.
3. Waking up pinioned to the bed by dogs nestling in under each arm (but on top of the covers)
2. Not having to fill the gas tank four times in a week.
1. Erin has access to a fully equipped kitchen (To understand why this made the number one slot, check out the photos below of the dinner that she and Ayesha cooked on Friday night.)
10. No more thin, hard hotel pillows.
9. Coffee that actually tastes like coffee.
8. Always available internet access.
7. Everyone's poop is back to normal.
6. Adults and children don't have to share the bathroom sink.
5. More than one comfy chair.
4. Readily available vegetables.
3. Waking up pinioned to the bed by dogs nestling in under each arm (but on top of the covers)
2. Not having to fill the gas tank four times in a week.
1. Erin has access to a fully equipped kitchen (To understand why this made the number one slot, check out the photos below of the dinner that she and Ayesha cooked on Friday night.)
The Spread
The Bread Bear
The Potato Puff
The Roasted Zucchini with Tomatoes
The Kabobs with Couscous
The Bread Bear
The Potato Puff
The Roasted Zucchini with Tomatoes
The Kabobs with Couscous
Friday, August 8, 2008
Help! My Telomeres Are Unraveling
August 8, 2008 (otherwise known as 08/08/08. . .doesn't it feel smooth to type that?)
I can just feel my telomeres unraveling. What, you may ask, is a telomere, and why don't I just put a knot mine or stitch them up?
Each person has telomere caps at the end of their chromosomes. This region acts as a buffer during cell division so that cells don't lose important chromosomes (and that oh-so-crucial information each contains). As long as you have intact telomeres, you have less chance of producing genetic anomalies. Unfortunately, your telomeres get shorter each time their cell divides. So as you age, the buffer function deteriorates and eventually tissue can't repair itself properly. This leads to a variety of maladies that we associate with old age.
Now you may ask yourself if Vickie is just complaining because she's getting old. No, definitely not. Telomeres shorten due to aging, but also because of stress. And this week has taken me to new peaks of stress.
The week began peacefully enough. Monday brought the beginning of the end to our New Mexican vacation, but I still had the luxury of sitting with my feet up on the balcony of our hotel, viewing the mountains and shivering just a little, while sipping my coffee and nibbling a warm chocolate chip cookie to start the day. By midday we had hit the road, and by Tuesday afternoon we had arrived back at Chez Buenger, facing piles of mail and newspapers, a plethora of phone messages, and an e-mail queue longer than the line for the bathroom at an Aggie game. We had a week to get Davis packed for 18 weeks in Hungary (did you know that Hungarians spend forints, not euros?) and clinic in Houston for Erin, plus more placement testing for the school year and soccer revving back up with practices every evening. My "to do" list also contained a variety of extended family obligations about which I can't share details, but it involved opening bank accounts, transferring vehicle titles, and making applications to various state agencies.
Yet even in the midst of knocking off items from the list (while wondering if applying clear fingernail polish to my chromosome caps would keep them from unraveling further), I was struck with the idea of how pleasant it was to feel stressed over something other than Erin's cancer. Of course, I'm sure I'll add that to the mix in the coming week or two, since Scan Fiesta is on our docket for August 28.
Clinic went fine yesterday, quite similar to previous labs three weeks ago. We'll start round five of The Rhino on Monday morning (pre-dawn).
HGB 11.5 (normal)
WBC 2800 (low)
ANC 1430 (almost low normal)
PLT 316,000 (normal)
BUN 24 (5-25)
Creatinine .7 (.2-1.2)
Apparently, in our trip across the Texas and New Mexico desert on Monday and Tuesday, we missed the memo that the clinic closed down on Tuesday as a precaution against Eduardo. That meant that all the patients with Tuesday appointments showed up at clinic yesterday (and all apparently arrived moments before we did). We managed to pass the time successfully and with reasonable cheer primarily because Erin's great friend Ayesha joined us for the trip (in fact, she has joined us for an extended stay and playfest all week until Sunday). Our visit also coincided with a visit from Houston Dynamo defender Craig Weibel, so Erin and Ayesha got to join Weibel's Warriors and score a couple of cool orange Ts with Weibels signature across the front.
Erin fans, we also got to meet a newly diagnosed NB patient, Jessica Goff. She is pretty bummed about having to sit out this fall's soccer season, although she and her family have a great attitude and I'm sure will make it through this tough part of treatment with few problems. They have decorated her hospital room in a China-theme to celebrate the Olympics. It sounds like the Goffs, similar to the Buengers, travel heavy. Stop by her website: http://www.caringbridge.org/visit/jessicagoff and leave them all a message of encouragement.
I don't know when the fun will stop. My niece Annabelle went home yesterday, but my other niece, Emma, and my sister, Katherine arrive this afternoon for a long weekend of mischief and fun. Since I'm not ready to stop having fun I will leave you with vacation pics.
Here's a view from the hiking trail at Cloudcroft:
And our destination at the trail's end. This is the Mexican Canyon Trestle, an amazing railroad bridge built about a hundred years ago. Until the 1940's it was the only way, other than pack mule, to get to Cloudcroft. Note how tough it must have been to get supplies to this site 9,000 feet above sea level:
Here we are along the trail:
We also played miniature golf with Aunt Norma and Uncle Dave. Norma was the big winner (because she can actually putt accurately and calculate the pitch and rise for the holes).
Erin's no pro, but she does bring a certain sense of focus to her game:
I can just feel my telomeres unraveling. What, you may ask, is a telomere, and why don't I just put a knot mine or stitch them up?
Each person has telomere caps at the end of their chromosomes. This region acts as a buffer during cell division so that cells don't lose important chromosomes (and that oh-so-crucial information each contains). As long as you have intact telomeres, you have less chance of producing genetic anomalies. Unfortunately, your telomeres get shorter each time their cell divides. So as you age, the buffer function deteriorates and eventually tissue can't repair itself properly. This leads to a variety of maladies that we associate with old age.
Now you may ask yourself if Vickie is just complaining because she's getting old. No, definitely not. Telomeres shorten due to aging, but also because of stress. And this week has taken me to new peaks of stress.
The week began peacefully enough. Monday brought the beginning of the end to our New Mexican vacation, but I still had the luxury of sitting with my feet up on the balcony of our hotel, viewing the mountains and shivering just a little, while sipping my coffee and nibbling a warm chocolate chip cookie to start the day. By midday we had hit the road, and by Tuesday afternoon we had arrived back at Chez Buenger, facing piles of mail and newspapers, a plethora of phone messages, and an e-mail queue longer than the line for the bathroom at an Aggie game. We had a week to get Davis packed for 18 weeks in Hungary (did you know that Hungarians spend forints, not euros?) and clinic in Houston for Erin, plus more placement testing for the school year and soccer revving back up with practices every evening. My "to do" list also contained a variety of extended family obligations about which I can't share details, but it involved opening bank accounts, transferring vehicle titles, and making applications to various state agencies.
Yet even in the midst of knocking off items from the list (while wondering if applying clear fingernail polish to my chromosome caps would keep them from unraveling further), I was struck with the idea of how pleasant it was to feel stressed over something other than Erin's cancer. Of course, I'm sure I'll add that to the mix in the coming week or two, since Scan Fiesta is on our docket for August 28.
Clinic went fine yesterday, quite similar to previous labs three weeks ago. We'll start round five of The Rhino on Monday morning (pre-dawn).
HGB 11.5 (normal)
WBC 2800 (low)
ANC 1430 (almost low normal)
PLT 316,000 (normal)
BUN 24 (5-25)
Creatinine .7 (.2-1.2)
Apparently, in our trip across the Texas and New Mexico desert on Monday and Tuesday, we missed the memo that the clinic closed down on Tuesday as a precaution against Eduardo. That meant that all the patients with Tuesday appointments showed up at clinic yesterday (and all apparently arrived moments before we did). We managed to pass the time successfully and with reasonable cheer primarily because Erin's great friend Ayesha joined us for the trip (in fact, she has joined us for an extended stay and playfest all week until Sunday). Our visit also coincided with a visit from Houston Dynamo defender Craig Weibel, so Erin and Ayesha got to join Weibel's Warriors and score a couple of cool orange Ts with Weibels signature across the front.
Erin fans, we also got to meet a newly diagnosed NB patient, Jessica Goff. She is pretty bummed about having to sit out this fall's soccer season, although she and her family have a great attitude and I'm sure will make it through this tough part of treatment with few problems. They have decorated her hospital room in a China-theme to celebrate the Olympics. It sounds like the Goffs, similar to the Buengers, travel heavy. Stop by her website: http://www.caringbridge.org/visit/jessicagoff and leave them all a message of encouragement.
I don't know when the fun will stop. My niece Annabelle went home yesterday, but my other niece, Emma, and my sister, Katherine arrive this afternoon for a long weekend of mischief and fun. Since I'm not ready to stop having fun I will leave you with vacation pics.
Here's a view from the hiking trail at Cloudcroft:
And our destination at the trail's end. This is the Mexican Canyon Trestle, an amazing railroad bridge built about a hundred years ago. Until the 1940's it was the only way, other than pack mule, to get to Cloudcroft. Note how tough it must have been to get supplies to this site 9,000 feet above sea level:
Here we are along the trail:
We also played miniature golf with Aunt Norma and Uncle Dave. Norma was the big winner (because she can actually putt accurately and calculate the pitch and rise for the holes).
Erin's no pro, but she does bring a certain sense of focus to her game:
Sunday, August 3, 2008
7 For 9
August 3, 2008
I can't wax too philosophic on a public computer in the lobby of The Lodge at Sierra Blanca, but I wanted to let you know that Erin was accepting disciples to study her methods at the horse races. She was in the money 7 of 9 races yesterday.
Tomorrow our experiment with cooler air will come to an abrupt halt as we will return to 100+ degree weather and our homeland, Texas. We should be back home by Tuesday, set Wednesday aside for laundry, and head to Houston for a regular clinic appointment and labs on Thursday.
I can't wax too philosophic on a public computer in the lobby of The Lodge at Sierra Blanca, but I wanted to let you know that Erin was accepting disciples to study her methods at the horse races. She was in the money 7 of 9 races yesterday.
Tomorrow our experiment with cooler air will come to an abrupt halt as we will return to 100+ degree weather and our homeland, Texas. We should be back home by Tuesday, set Wednesday aside for laundry, and head to Houston for a regular clinic appointment and labs on Thursday.
Tuesday, July 29, 2008
Bush Will Sign!
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.
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.
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.
Sunday, June 29, 2008
I'll Sleep When I'm Dead
June 29, 2008
What kind of mother jail do they put you in if you let you 11 year-old daughter listen to Warren Zevon cd's? That's where I'm headed. Erin kiped Davis's Zevon collection from his room before we left for Houston last Wednesday, and I okayed it for the trip down: no doubt remembering "Werewolves of London" and forgetting his darker songs like "Roland the Headless Thompson Gunner," "Lawyers, Guns, and Money," and "I'll Sleep When I'm Dead" (among those I feel comfortable referencing on a family-oriented website). You have to admit the mixed feeling a cancer parent feels about this last song. The lyrics are questionable at best, and include the non-awarding winning line: I'm drinking heartbreak motor oil and Bombay gin, which I'm pretty sure I don't want Erin to learn and mimic. Yet here I am, allowing her to be-bop along with Z's songs.
Not that the concept of "I'll sleep when I'm dead" is that foreign to Erin. I thought she'd need extra rest when she got home from camp, but we had the Tjoelkers over the next day for a lake party. On Monday, she took a credit by exam test for 6th grade math in the morning, went to Creative Arts Camp in the afternoon, and had Aaron Wunneburger over afterwards for swimming and play.
On Tuesday, she re-played Monday: taking the 7th grade credit by exam test in the morning, whooping it up at CAC, and swimming with Aaron at some of his friends' house in the evening. She dragged in after 9:00.
Wednesday we hopped over to Houston to prep for her MiBG scan and by 3:00 were back in the car headed down I-45 to the Kemah Boardwalk. Twenty bucks bought a wristband and access to all the rides including Chaos, which spins riders in an almost vertical circle while allowing each pod to do full head-over-toes flips while spinning, and the Bullet (shown below). With practically no lines, you would think we would have exhausted the fun before the boardwalk closed at 10:00, but we didn't.
Thursday, of course, was Scanboree (actual results below). Friday, Erin had physical therapy in the morning and returned to camp. The grand end-of-camp finale took place Friday evening, with Erin providing some of the pre-performance entertainment with a recitation of a Dylan Thomas poem (not, as you might expect "Do Not Go Gently into That Good Night," but instead, a tribute to Willie, "Song of the Mischievous Dog") and a lot of singing and hand motions as a member of the chorus in the World-Premier Performance of Postman Paul. (See Erin on the first row, second from the left. Also imagine the horde of volunteers it took to get this group ready to perform a musical with just five days of practice, three hours per day.)
The birthday extravaganza exceeded expectations, and what can you say about a girl who makes her own birthday cakes (two mandarin orange cheese cakes and a double batch of dark chocolate brownies with pecans) AND makes sure she invites friends whose parents we like, so that we can have fun, too?
We surely can not thank all of our friends (met and unmet) enough who added to the celebration of Erin's first eleven years. This includes
Have you made it this far for scan results? The blob of tumor that grew into space (its largest dimension 11.5 cm vertically, and filling up the nooks and crannies in front and to the side of Erin's spine, displacing her aorta and renal vessels) has been reduced to two measurable masses (one the size of a peanut M&M, the other the size of a raspberry) and some thickening in various soft tissue that's too thin to measure. No wonder Dr. Russell was smiling. Are you smiling?
What kind of mother jail do they put you in if you let you 11 year-old daughter listen to Warren Zevon cd's? That's where I'm headed. Erin kiped Davis's Zevon collection from his room before we left for Houston last Wednesday, and I okayed it for the trip down: no doubt remembering "Werewolves of London" and forgetting his darker songs like "Roland the Headless Thompson Gunner," "Lawyers, Guns, and Money," and "I'll Sleep When I'm Dead" (among those I feel comfortable referencing on a family-oriented website). You have to admit the mixed feeling a cancer parent feels about this last song. The lyrics are questionable at best, and include the non-awarding winning line: I'm drinking heartbreak motor oil and Bombay gin, which I'm pretty sure I don't want Erin to learn and mimic. Yet here I am, allowing her to be-bop along with Z's songs.
Not that the concept of "I'll sleep when I'm dead" is that foreign to Erin. I thought she'd need extra rest when she got home from camp, but we had the Tjoelkers over the next day for a lake party. On Monday, she took a credit by exam test for 6th grade math in the morning, went to Creative Arts Camp in the afternoon, and had Aaron Wunneburger over afterwards for swimming and play.
On Tuesday, she re-played Monday: taking the 7th grade credit by exam test in the morning, whooping it up at CAC, and swimming with Aaron at some of his friends' house in the evening. She dragged in after 9:00.
Wednesday we hopped over to Houston to prep for her MiBG scan and by 3:00 were back in the car headed down I-45 to the Kemah Boardwalk. Twenty bucks bought a wristband and access to all the rides including Chaos, which spins riders in an almost vertical circle while allowing each pod to do full head-over-toes flips while spinning, and the Bullet (shown below). With practically no lines, you would think we would have exhausted the fun before the boardwalk closed at 10:00, but we didn't.
Thursday, of course, was Scanboree (actual results below). Friday, Erin had physical therapy in the morning and returned to camp. The grand end-of-camp finale took place Friday evening, with Erin providing some of the pre-performance entertainment with a recitation of a Dylan Thomas poem (not, as you might expect "Do Not Go Gently into That Good Night," but instead, a tribute to Willie, "Song of the Mischievous Dog") and a lot of singing and hand motions as a member of the chorus in the World-Premier Performance of Postman Paul. (See Erin on the first row, second from the left. Also imagine the horde of volunteers it took to get this group ready to perform a musical with just five days of practice, three hours per day.)
The birthday extravaganza exceeded expectations, and what can you say about a girl who makes her own birthday cakes (two mandarin orange cheese cakes and a double batch of dark chocolate brownies with pecans) AND makes sure she invites friends whose parents we like, so that we can have fun, too?
We surely can not thank all of our friends (met and unmet) enough who added to the celebration of Erin's first eleven years. This includes
- our special friend who placed a prayer in the wailing wall when he visited Israel,
- unknown friends who sent a clock and a puzzle made with photos downloaded from this page,
- friends who sent cards and electronic messages until we ran out of room to display them,
- a special friend who burned a CD with cutes photos of Erin that I had never seen before (talk about a windfall!),
- a special friend who went hunting for Venus fly-traps when it looked like Erin's ordered carnivorous plant wouldn't arrive in time,
- Erin's buddies who always know just what she likes,
- new friends from Houston who kept us supplied with DVD's during scans and who gave Erin the cutest Bambi nightshirt,
- a special friend who had dinner waiting for us on the last day of the Houston chemo marathon,
- all the special friends and relatives (who I count as friends whether they like it or not) who were so thoughtful about choosing just the right gifts,
- and all our friends who willingly forgive me if I have left them out of this list because the last two months have left me brain dead and struggling to remember the details that I'm usually so good at remembering.
Have you made it this far for scan results? The blob of tumor that grew into space (its largest dimension 11.5 cm vertically, and filling up the nooks and crannies in front and to the side of Erin's spine, displacing her aorta and renal vessels) has been reduced to two measurable masses (one the size of a peanut M&M, the other the size of a raspberry) and some thickening in various soft tissue that's too thin to measure. No wonder Dr. Russell was smiling. Are you smiling?
Thursday, June 26, 2008
Chipping?
June 26, 2008
I had understood Erin's doctor to say, when we started irinotecan/temador five and a half weeks ago, that she expected the drug combo to chip away at Erin's tumor. When she and I looked at the images of today's CT scan compared with the last one in clinic this afternoon, we both thought chipping was not exactly the right word. To our combined four eyes, Erin's tumor looked considerably smaller than it did last month. We will have to wait for the official pronouncement, but Dr. Russell was smiling quite a lot. In fact, she seemed disappointed that I wasn't smiling more. I told her that there was such a change in the pre-Rhino/post-Rhino Erin that I think I already knew that the scan would look good, had incorporated that information into my thinking, and had already moved on to "what's next?"
I'll post when I know the official dimensions, but until then. . .significantly smaller sound more accurate than chipped.
That information clears the deck for three more rounds of the Rhino with scans right at the start of school and the okay to vacation with inpugnity. With the last day of my summer class scheduled for tomorrow and Erin's 11th birthday party launching on Saturday, I say, "I thought summer would never arrive. Let the fun begin."
I had understood Erin's doctor to say, when we started irinotecan/temador five and a half weeks ago, that she expected the drug combo to chip away at Erin's tumor. When she and I looked at the images of today's CT scan compared with the last one in clinic this afternoon, we both thought chipping was not exactly the right word. To our combined four eyes, Erin's tumor looked considerably smaller than it did last month. We will have to wait for the official pronouncement, but Dr. Russell was smiling quite a lot. In fact, she seemed disappointed that I wasn't smiling more. I told her that there was such a change in the pre-Rhino/post-Rhino Erin that I think I already knew that the scan would look good, had incorporated that information into my thinking, and had already moved on to "what's next?"
I'll post when I know the official dimensions, but until then. . .significantly smaller sound more accurate than chipped.
That information clears the deck for three more rounds of the Rhino with scans right at the start of school and the okay to vacation with inpugnity. With the last day of my summer class scheduled for tomorrow and Erin's 11th birthday party launching on Saturday, I say, "I thought summer would never arrive. Let the fun begin."
Monday, June 23, 2008
Floating With Friends
June 23, 2008
What do people I know wish for more often than anything (besides lower gasoline prices)? Unencumbered time. We all know the drill. We have a lot going on. We try to give each of our children the special attention they need. We don't want to short change our boss. The to-do list for the house gets longer rather than shorter. We need to fit in more exercise, more time with our spouse.
This is the usual for many people. Parents with cancer have all that and more. Let me tell you, I have felt the crunch lately. Between January 7 and May 13, we made ZERO trips to Houston related to Erin's treatment. We did everything at home and satisfied her Houston doc with monthly trips to our local pediatrician for blood draws. In the 42 days since May 13, we have driven to Houston ten times, spent countless hours researching and discussing treatment options, and had our ears grow hot waiting on hold with schedulers, insurance reps, and pharmacists. We have shuffled and re-shuffled Erin's schedule to accommodate her plans. Walter's research sabbatical ended on June 1, so back to the daily office grind for him. Summer school started for me the day after Memorial Day, so back to the daily grind for me. We have done what hordes of other folks do: run as fast as we can to keep up with the daily demands and fall into bed at night.
That's why I consider yesterday the perfect day. We needed to see the Tjoelkers before they left on vacation. Erin usually hangs out with Nico and Adam a lot, but Organ Camp, Chemo Camp, and Church Camp had intervened, and if we didn't see each other yesterday, we wouldn't meet up again until we were all in Pittsburgh in the middle of July.
The solution: Walter and I picked up sausage from Meyer's Barbecue (for a review of the sausage click here) when we passed through Elgin Saturday. I instructed Elaine to supply a watermelon, and I threw together some potato salad using ingredients that I didn't have to go to the store for. Erin used up the last of the peaches and blueberries to make some fruit crisp thing that she got from her new cookbook. When the Tjoelkers got to the house, we each found our favorite floating toy and slipped into the lake. Erin, Nico, and Adam proceeded to swim as far from the slothful parents as they could within the confines of a twenty-five acre lake, while the rest of us just hung out, suspended in seven feet of muddy lake water on noodles and inner tubes. The hundred degree heat faded from our memories. The lake was lukewarm on top, but chilly towards our toes. We had nowhere to go and no demands on our time. We talked. Laughed. Floated.
Eventually we drug ourselves out of the drink and had firsts, seconds, and in some cases, thirds of the thrown-together dinner. We watched the sky turn from baby blue through the spectrum of yellows and reds and finally to purple as the sun moved out of sight.
At the end of the day we fell into bed, just like always, but somehow better.
What do people I know wish for more often than anything (besides lower gasoline prices)? Unencumbered time. We all know the drill. We have a lot going on. We try to give each of our children the special attention they need. We don't want to short change our boss. The to-do list for the house gets longer rather than shorter. We need to fit in more exercise, more time with our spouse.
This is the usual for many people. Parents with cancer have all that and more. Let me tell you, I have felt the crunch lately. Between January 7 and May 13, we made ZERO trips to Houston related to Erin's treatment. We did everything at home and satisfied her Houston doc with monthly trips to our local pediatrician for blood draws. In the 42 days since May 13, we have driven to Houston ten times, spent countless hours researching and discussing treatment options, and had our ears grow hot waiting on hold with schedulers, insurance reps, and pharmacists. We have shuffled and re-shuffled Erin's schedule to accommodate her plans. Walter's research sabbatical ended on June 1, so back to the daily office grind for him. Summer school started for me the day after Memorial Day, so back to the daily grind for me. We have done what hordes of other folks do: run as fast as we can to keep up with the daily demands and fall into bed at night.
That's why I consider yesterday the perfect day. We needed to see the Tjoelkers before they left on vacation. Erin usually hangs out with Nico and Adam a lot, but Organ Camp, Chemo Camp, and Church Camp had intervened, and if we didn't see each other yesterday, we wouldn't meet up again until we were all in Pittsburgh in the middle of July.
The solution: Walter and I picked up sausage from Meyer's Barbecue (for a review of the sausage click here) when we passed through Elgin Saturday. I instructed Elaine to supply a watermelon, and I threw together some potato salad using ingredients that I didn't have to go to the store for. Erin used up the last of the peaches and blueberries to make some fruit crisp thing that she got from her new cookbook. When the Tjoelkers got to the house, we each found our favorite floating toy and slipped into the lake. Erin, Nico, and Adam proceeded to swim as far from the slothful parents as they could within the confines of a twenty-five acre lake, while the rest of us just hung out, suspended in seven feet of muddy lake water on noodles and inner tubes. The hundred degree heat faded from our memories. The lake was lukewarm on top, but chilly towards our toes. We had nowhere to go and no demands on our time. We talked. Laughed. Floated.
Eventually we drug ourselves out of the drink and had firsts, seconds, and in some cases, thirds of the thrown-together dinner. We watched the sky turn from baby blue through the spectrum of yellows and reds and finally to purple as the sun moved out of sight.
At the end of the day we fell into bed, just like always, but somehow better.
Sunday, June 22, 2008
Mo of Everything
June 22, 2008
Mo Ranch belonged to Dan Moran, former president of Conoco Oil Co. Hence, its name. But most people who spend any time there, think of "Mo" as just a shortened version of "More." More fun. More beauty. More peace. More friends.
Erin definitely falls into the second category. Having just finished a full week there, she hasn't had enough and wants Mo. I got the full, three-hour run down of all the activities on the first leg of our trip home yesterday. Of course, this included usual camp stuff like horseback riding, kayaking, camping under the stars, and the high ropes course. It also included long, laughing descriptions of what she called her camp "hallmarks." She did her hair in a different style each day (a task made much simpler by the fact that her hair didn't fall out during the week). She also hung all her cards and e-mail (not a trivial volume) from her bunk. I think she remembered doing something similar when her treatment used to call for hospital stays. Anyway, she owes a big debt of gratitude and thanks to her Erin fans who celebrated her birthday and camp experience by sending cards and notes! THANKS! On the final night of camp, her group threw her a surprise birthday party and decorated her (her, not her bunk) in splendid fashion.
The only part about camp that she claimed not to like was that she danced with a boy at the "Mo Down." Apparently, at this activity, the dancing among Erin's age group was gender-oriented. The girls preferred to dance alone or in groups with other girls. The boys weren't that interested in dancing at all. . .except George. George wanted to dance, but the girls he asked kept turning him down. Finally, one of the counselors asked Erin to dance with him. Listening to Erin describe the experience was sort of like listening to her describe a day at clinic. . something to be tolerated, but not enjoyed. She thought it was woefully limiting to have to keep her hands on George's shoulders while dancing.
I will post photos in a day or two, but wanted to get in a quick update to let everyone know we made it back safely. Scans come up this week on Wednesday and Thursday. Please hope that the great way that Erin is feeling these days is because her tumor is being knocked back.
Mo Ranch belonged to Dan Moran, former president of Conoco Oil Co. Hence, its name. But most people who spend any time there, think of "Mo" as just a shortened version of "More." More fun. More beauty. More peace. More friends.
Erin definitely falls into the second category. Having just finished a full week there, she hasn't had enough and wants Mo. I got the full, three-hour run down of all the activities on the first leg of our trip home yesterday. Of course, this included usual camp stuff like horseback riding, kayaking, camping under the stars, and the high ropes course. It also included long, laughing descriptions of what she called her camp "hallmarks." She did her hair in a different style each day (a task made much simpler by the fact that her hair didn't fall out during the week). She also hung all her cards and e-mail (not a trivial volume) from her bunk. I think she remembered doing something similar when her treatment used to call for hospital stays. Anyway, she owes a big debt of gratitude and thanks to her Erin fans who celebrated her birthday and camp experience by sending cards and notes! THANKS! On the final night of camp, her group threw her a surprise birthday party and decorated her (her, not her bunk) in splendid fashion.
The only part about camp that she claimed not to like was that she danced with a boy at the "Mo Down." Apparently, at this activity, the dancing among Erin's age group was gender-oriented. The girls preferred to dance alone or in groups with other girls. The boys weren't that interested in dancing at all. . .except George. George wanted to dance, but the girls he asked kept turning him down. Finally, one of the counselors asked Erin to dance with him. Listening to Erin describe the experience was sort of like listening to her describe a day at clinic. . something to be tolerated, but not enjoyed. She thought it was woefully limiting to have to keep her hands on George's shoulders while dancing.
I will post photos in a day or two, but wanted to get in a quick update to let everyone know we made it back safely. Scans come up this week on Wednesday and Thursday. Please hope that the great way that Erin is feeling these days is because her tumor is being knocked back.
Wednesday, June 18, 2008
P.O.D.s
June 18, 2008
I wanted to share some P.O.D.s (photos of the day) that I grabbed off of the Mo Ranch album. Don't you wish you could tell if Erin was having fun?
I wanted to share some P.O.D.s (photos of the day) that I grabbed off of the Mo Ranch album. Don't you wish you could tell if Erin was having fun?
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