12/28/05
Good Morning and Merry after-Christmas to each of you. I hope you have enjoyed the cheer of the season as much as we have. I only reached stress-level Code Red twice over the weekend and recovered quickly both times. Erin was quite pumped about the whole gift-exchange concept. She made all of her presents (about a dozen of them a couple of weeks ago at our church's Secret Santa Workshop), promptly wrapped them, and placed them where the tree would eventually be when her parents got around to getting one. I think she was dumb-founded that I was still wrapping things on Christmas Eve afternoon. Frankly, I was a little edgy about it myself, but it all got done, with almost a half an hour to spare to get ready for church.
We attended children's church for Christmas eve again this year. We were hoping to graduate to the more serene 7:00 service, but Erin's children's choir was performing at 4:30. This year's program was actually quite good and got us all into the Christmas spirit. . .up until the very end. Let me backtrack and explain. Like many churches, First Pres ends each of its Christmas eve services with a candle lighting ceremony. Each person in the congregation has his or her own candle. We dim the lights in the sanctuary, sing "Joy to the World," and pass the flame of the Christ candle from candle to candle until everyone is included. Quite uplifting and beautiful, although a little scary for parents who may not trust their small children to wield fire in a crowded dark place. At least in that version of the ceremony, parents are standing close to their children and can snuff out potentially hazardous situations before they spread.
This year, however, practically all of the children, down to the smallest tots, were up front in the chancel area imitating shepherds and angels and stall animals when the candle lighting part of the service arrived. Instead of sending them back to the pews, the organizers handed each child a candle and lit them immediately, while the parents waited for their candles and flames. What could possibly happen? I'm sure nothing. . .you can often jam 30 children into a space the size of my kitchen, dress them in flowing robes and synthetic wings, hand them lit candles, and nothing bad will happen.
Okay, I admit it. I was a tad anxious. I knew Erin's ornamental headwear was highly flammable, and I suspected as much about the angel wings and shepherds' gear surrounding her. I also knew, from personal experience (NOTE: yes, I was the one who caught my script on fire at a Christmas eve service several years ago, when it strayed into the advent wreath in that most Holy moment when the Buengers were lighting the Christ candle. Only Walter's brave and heroic willingness to put the fire out with his bare hand kept the church from becoming a conflagration on the spot.) that a fire in the chancel was not an impossibility. With wavering voice--ready at any moment to leap the alter to smother any errant flame; ready to bellow out "Stop! Drop! and Roll"--I sang verse after verse of "Joy to the World." Eventually, the peace of Christ was shared around the room, Phil benedicted us, and we all blew out our candles. Then, I could go forth in the peace of the season, safe in the knowledge that the smell that wafted past my nostril wasn't really singed hair. . .and even if it was, it wasn't my child. Another advantage of having a child with chemo-induced baldness.
Davis deserved the "Good Son" award on Christmas morning. Years ago, he took on the gate-keeping responsibilities for the Christmas morning extravaganza. Erin knows that she has to stop by Davis's room to get the "go ahead" before she can wake us up and check out the Santa loot. This year, her first foray came around 2:00. . . Davis sent her back to bed. Her second attempt came at 5:00. . . Again, Davis sent her back to bed. Walter and I thus dodged the way-too-early bullet twice before Davis finally signaled "all systems go" around 5:30, which is early but not ungodly.
What can I say about the rest of the day? We enjoyed every facet of it. Gifts and guests and good food.
How does Erin feel? On the whole, quite well. She has a little sniffle in her nose and maybe a little cough creeping back into her system. Monday she was tireder than usual, although she rallied to have a friend over. She also complained of back pain for much of the day. I was ready to go back into worry mode over that, but it was slightly better when she woke up on Tuesday and seemed to bother her less as the day progressed. She rode horses in the afternoon, and I really thought it would flare back up afterwards, with all the jostling and jiggling, but neither her fatigue or her back rated any mention for the rest of the day. We are headed to the park in a little while.
She will have her blood counts done tomorrow, and I expect them to be lowish for a couple of days. Scans will be on January 9. It's never too early to start on the shrink, shrink, shrink; die, die, die mantra aimed at the tumor cells!
Thanks for stopping by.
Wednesday, December 28, 2005
Friday, December 23, 2005
What Will We Do Without Greg's Nachos?
12/23/05
What? Again? So soon? No, there's nothing wrong or particularly exciting to pass on. I'm just excited. We have knocked out the first four days of this cycle and by early afternoon will be blissfully free for another three weeks (knock on wood). Christmas Eve is tomorrow! We are all home together and have been all week! We've visited with friends, listened to Christmas music, and slept in our own beds at night.
The staff at the Central Texas Cancer Center has tolerated our unorthodox style. For those of you who haven't visited: this clinic is set up as a large room with about seven chemo chairs (sort of like rolling dentist chairs) arranged in a semi-circle. Mostly, patients shuffle over to their chairs, get hooked up to their IV and endure the session. Maybe they roust themselves for a trip to the bathroom. Erin and I arrive heavily laden. We spread a quilt thingy on the floor, unpack crates of toys, load up our CDs or DVDs into the player, and prepare to receive visitors. About half way through each session, we do a quick pack up and move everything out to the lobby for a change of scenery. It usually only takes three or four trips, but that is because I am the Ultimate Pack-Horse Mom and can carry a lot each load. Like I said, it's different for the staff, but they are getting used to us.
I don't have much else to say. Our friend Duffy came up from Laredo to spend some time with us this week. My mom and I (mostly my mom) got the holiday party mix made yesterday. Talk about a marathon kitchen session. Whew! The sisters will be here God knows when, but when they arrive their favorite holiday snack will be waiting!
I hate to end this uplifting and happy message on a sad note, but those of you who know us well will understand why we are wearing black (figuratively) today. Today is the last day Gina's will be open. We have eaten there about fifty times a year since Davis was born (it opened while I was pregnant with him). Everyone in the family loves the place, and it really is hard to imagine what we will do without Greg's nachos', the Fireman's Special, Erin's cheese triangles, and so on. I thought the least they could do was wait until Davis had left for college, so as to soften the blow. As it is, we will take as large a group as we can get together downtown tonight and reel in the years.
I'll check in with you after Christmas! Remember to tell the ones you love that you really do love them!
What? Again? So soon? No, there's nothing wrong or particularly exciting to pass on. I'm just excited. We have knocked out the first four days of this cycle and by early afternoon will be blissfully free for another three weeks (knock on wood). Christmas Eve is tomorrow! We are all home together and have been all week! We've visited with friends, listened to Christmas music, and slept in our own beds at night.
The staff at the Central Texas Cancer Center has tolerated our unorthodox style. For those of you who haven't visited: this clinic is set up as a large room with about seven chemo chairs (sort of like rolling dentist chairs) arranged in a semi-circle. Mostly, patients shuffle over to their chairs, get hooked up to their IV and endure the session. Maybe they roust themselves for a trip to the bathroom. Erin and I arrive heavily laden. We spread a quilt thingy on the floor, unpack crates of toys, load up our CDs or DVDs into the player, and prepare to receive visitors. About half way through each session, we do a quick pack up and move everything out to the lobby for a change of scenery. It usually only takes three or four trips, but that is because I am the Ultimate Pack-Horse Mom and can carry a lot each load. Like I said, it's different for the staff, but they are getting used to us.
I don't have much else to say. Our friend Duffy came up from Laredo to spend some time with us this week. My mom and I (mostly my mom) got the holiday party mix made yesterday. Talk about a marathon kitchen session. Whew! The sisters will be here God knows when, but when they arrive their favorite holiday snack will be waiting!
I hate to end this uplifting and happy message on a sad note, but those of you who know us well will understand why we are wearing black (figuratively) today. Today is the last day Gina's will be open. We have eaten there about fifty times a year since Davis was born (it opened while I was pregnant with him). Everyone in the family loves the place, and it really is hard to imagine what we will do without Greg's nachos', the Fireman's Special, Erin's cheese triangles, and so on. I thought the least they could do was wait until Davis had left for college, so as to soften the blow. As it is, we will take as large a group as we can get together downtown tonight and reel in the years.
I'll check in with you after Christmas! Remember to tell the ones you love that you really do love them!
Tuesday, December 20, 2005
Christmas Is Coming
12/20/05
Merry Christmas out there! All of us except Walter, the administrator, (insert devious laugh sound effect here) finished our semesters last week. Hurray! Erin had a pajama party at school on Friday with a loaded snack table and cool activities. Davis got out early enough to stop by and graze. Several of the third graders wanted to know about Davis's school party. He told them the exams were the party. I don't think it brought cheer to their hearts. I got grades turned in in a timely way and was (in a way) sad to see the semester end. I had a truly awesome collection of students this semester--maybe the smartest as a group, and certainly exceptionally cheerful and fun to be around.
Erin got to see the local theatre company put on The Sound of Music last Saturday with her friend Katie. They loved it so much, they watched it again on television Saturday night. We drove into Houston Sunday evening, shopped a little, ate dinner, swam, and went on to bed for an early start Monday morning.
Dr. Russell thought Erin looked well, and her counts were good enough to stick on the refrigerator. I guess that means we survived a rather rough month. . .not on the cancer front, but on the childhood illness front. Between Erin's congestion and cough, the family stomach bug, and the ever-so-powerful, but side-effect laden drugs, we were glad to escape relatively unscathed. Anyway, Dr. Russell okayed the plan to keep doing what we've been doing (cyclophosphomide and topotecan). We had Day 1 chemo in the Houston clinic yesterday, and I have the orders for Day 2 through Day 5 here in Bryan (Central Texas Cancer Center, 2215 E. Villa Maria, if you are planning to drop by. My cell is 820.1755, if you need directions.).
While we were in Houston, Walter and Davis scurried around tidying up and locating the Buenger Christmas tree. It is a full twelve feet tall this year. Not as many berries as in previous years, probably because of the drought, but with a new carpet, I am not mourning the lack of berries that inevitably get ground into the area around the tree (and beyond). We all got into the spirit of the season last night, led, of course, by Erin who could not unwrap ornaments fast enough.
I want to close by thanking all of our dear supporters for taking time to give up your lunch for Erin this holiday season. It is especially touching, because we know so many of you have taken the time and effort to support others all year long--hurricane and tsunami survivors and many other worthwhile and important causes. That you can still find the energy and money for one more cause is awesome to us, and we really appreciate it. Thank you!
Merry Christmas out there! All of us except Walter, the administrator, (insert devious laugh sound effect here) finished our semesters last week. Hurray! Erin had a pajama party at school on Friday with a loaded snack table and cool activities. Davis got out early enough to stop by and graze. Several of the third graders wanted to know about Davis's school party. He told them the exams were the party. I don't think it brought cheer to their hearts. I got grades turned in in a timely way and was (in a way) sad to see the semester end. I had a truly awesome collection of students this semester--maybe the smartest as a group, and certainly exceptionally cheerful and fun to be around.
Erin got to see the local theatre company put on The Sound of Music last Saturday with her friend Katie. They loved it so much, they watched it again on television Saturday night. We drove into Houston Sunday evening, shopped a little, ate dinner, swam, and went on to bed for an early start Monday morning.
Dr. Russell thought Erin looked well, and her counts were good enough to stick on the refrigerator. I guess that means we survived a rather rough month. . .not on the cancer front, but on the childhood illness front. Between Erin's congestion and cough, the family stomach bug, and the ever-so-powerful, but side-effect laden drugs, we were glad to escape relatively unscathed. Anyway, Dr. Russell okayed the plan to keep doing what we've been doing (cyclophosphomide and topotecan). We had Day 1 chemo in the Houston clinic yesterday, and I have the orders for Day 2 through Day 5 here in Bryan (Central Texas Cancer Center, 2215 E. Villa Maria, if you are planning to drop by. My cell is 820.1755, if you need directions.).
While we were in Houston, Walter and Davis scurried around tidying up and locating the Buenger Christmas tree. It is a full twelve feet tall this year. Not as many berries as in previous years, probably because of the drought, but with a new carpet, I am not mourning the lack of berries that inevitably get ground into the area around the tree (and beyond). We all got into the spirit of the season last night, led, of course, by Erin who could not unwrap ornaments fast enough.
I want to close by thanking all of our dear supporters for taking time to give up your lunch for Erin this holiday season. It is especially touching, because we know so many of you have taken the time and effort to support others all year long--hurricane and tsunami survivors and many other worthwhile and important causes. That you can still find the energy and money for one more cause is awesome to us, and we really appreciate it. Thank you!
Wednesday, December 14, 2005
She Bear with PMS
12/14/05
News flash. . .Davis received his acceptance to Rice University for next fall. Three cheers for our fine son!
I haven't updated since Erin went on heavy-duty antiobiotics and prednisone to clear up her sinus problem, mainly because for the first several days the cure was MUCH worse than the problem. The prednisone made her fragile and moody (polite words to describe a child prone to acting like a wounded she-bear with PMS) and incessantly hungry. The antibiotics drag her out and give her diahrrea. We weathered some tear bursts that rivaled summer thunderstorms and alot of grumbly, monosyllabic grunting and even more complaining.
Erin: "I'm starving."
Parent: "No problem. What would you like?"
Erin (loudly): "Anything. I don't care."
Parent: "How about peanut butter and jelly?"
Erin (louder): "No!"
Parent: "Popcorn?"
Erin (rolls eyes and shakes head)
Parent: "Yogurt?"
Erin: "No! I'm starving. Get me something to eat."
Parent: "What do you want?"
Erin: "Anything."
Parent (confused): "Just suggest something."
and the scene continues to the point of tears.
Luckily, the prednisone is tapered down and almost done and her body has adjusted to the antibiotics. Things are almost back to normal, and I think we have survived a preview of Erin's teen years. I, for one, really want to enjoy each of the golden moments of elementary a bit longer.
Next week is Erin's next round of chemo (Number 9, but who's counting?). We will be in Houston for Day 1, then at the local cancer clinic for Tuesday-Friday. Her appointment each day is from 10:00-2:30. We would love visitors if you can take time from your holiday routine to stop in for a chat.
News flash. . .Davis received his acceptance to Rice University for next fall. Three cheers for our fine son!
I haven't updated since Erin went on heavy-duty antiobiotics and prednisone to clear up her sinus problem, mainly because for the first several days the cure was MUCH worse than the problem. The prednisone made her fragile and moody (polite words to describe a child prone to acting like a wounded she-bear with PMS) and incessantly hungry. The antibiotics drag her out and give her diahrrea. We weathered some tear bursts that rivaled summer thunderstorms and alot of grumbly, monosyllabic grunting and even more complaining.
Erin: "I'm starving."
Parent: "No problem. What would you like?"
Erin (loudly): "Anything. I don't care."
Parent: "How about peanut butter and jelly?"
Erin (louder): "No!"
Parent: "Popcorn?"
Erin (rolls eyes and shakes head)
Parent: "Yogurt?"
Erin: "No! I'm starving. Get me something to eat."
Parent: "What do you want?"
Erin: "Anything."
Parent (confused): "Just suggest something."
and the scene continues to the point of tears.
Luckily, the prednisone is tapered down and almost done and her body has adjusted to the antibiotics. Things are almost back to normal, and I think we have survived a preview of Erin's teen years. I, for one, really want to enjoy each of the golden moments of elementary a bit longer.
Next week is Erin's next round of chemo (Number 9, but who's counting?). We will be in Houston for Day 1, then at the local cancer clinic for Tuesday-Friday. Her appointment each day is from 10:00-2:30. We would love visitors if you can take time from your holiday routine to stop in for a chat.
Thursday, December 8, 2005
Walking a Tightrope
12/8/05
Wow. . I intended to updated again much sooner than this. Erin's friends and family have supported Lunch for Life to the tune of 127 ornaments. Every dime of that goes to research for neuroblastoma. Thank you, thank you , thank you. I know I don't talk about it much, but with current treatment options, the best we can hope for with relapsed neuroblastoma is to treat it continuously and hope that her body holds out and her cancer stays at bay until researchers make a breakthrough that will stop it in its tracks. If that wasn't enough to add urgency to my message, I have learned that two other children from College Station have been diagnosed with neuroblastoma in the last month. The latest, an adorable eighteen-month-old boy, is the son of one of my colleagues in the Management Department. They are moving through the shock and horror of this discovery right now, and I don't envy them a single moment! I also have a hard time fathoming how a cancer that affects three children in a million can strike two children from a department with fewer than 40 faculty.
Now, on with the Erin story. Erin's counts tipped down at the end of last week. She woke up Saturday morning with worse than usual sniffles and 100.4 F temperature (Quelle Horreur! awfully close to that Magic 101 mark that wins us a three-day stay at the local hospital spa). We stayed on the fever watch all day. . .forcing her to watch television and be coddled. We also cleaned house fiercely in preparation for a dinner party we had scheduled for Saturday evening. The plan held together, and we were able to enjoy our friends without having to rush off to St. Joe's.
Sunday she felt well enough for Sunday School, quesadillas at Gina's, and a gingerbread house building party at Nico's. I graded reports all afternoon (watch for this repetitive theme as the update continues) and enjoyed Davis's show that evening (while I graded reports). I also pondered what to do about Erin's sniffles/cough fest that had entered Week 8. I felt we had dodged a bullet on Saturday, but if we didn't get it cleared up, we were eventually going to get unlucky and end up with a hospital stay.
Erin's white counts had roared back by Monday which comforted me some, since she had come home from school early with a headache and other minor complaints. I graded at home and kept her company. Tuesday we saw an ENT who suggested a heavy-weight antibiotic (Augmentin) and a tapered steroid to clear out her sinuses, and I hoped that would do the trick.
Tuesday night we celebrated Saint Nicholas's Day and Nico's early birthday with the Tjoelker's. We ate part of his gingerbread house and had a grand time. The festive occasion was followed a few hours later by the barfies and a new set of worries about Erin. Again, we got lucky (what kind of warped person am I to start a sentence about the barfies with "we got lucky"?) in that she only got sick once and never pulled a true fever. We stuck around the house, with a fire in the fireplace, burning Christmas-scented candles, and listening to Christmas-scented CDs. . .and I kept her company by grading reports.
This morning, Erin declared everything "All Good," dressed herself in a warm, yet gay-spirited outfit, and headed out to school. She just couldn't believe that it rained most of the day yesterday and got as cold as it did and DIDN'T SNOW. I dragged my sorry self up to my office (does anyone know why the University closed today over 24 degree weather? Is anyone out there laughing as us?) to. . .you guessed it, grade. I guess that's why they pay me the big bucks.
Wow. . I intended to updated again much sooner than this. Erin's friends and family have supported Lunch for Life to the tune of 127 ornaments. Every dime of that goes to research for neuroblastoma. Thank you, thank you , thank you. I know I don't talk about it much, but with current treatment options, the best we can hope for with relapsed neuroblastoma is to treat it continuously and hope that her body holds out and her cancer stays at bay until researchers make a breakthrough that will stop it in its tracks. If that wasn't enough to add urgency to my message, I have learned that two other children from College Station have been diagnosed with neuroblastoma in the last month. The latest, an adorable eighteen-month-old boy, is the son of one of my colleagues in the Management Department. They are moving through the shock and horror of this discovery right now, and I don't envy them a single moment! I also have a hard time fathoming how a cancer that affects three children in a million can strike two children from a department with fewer than 40 faculty.
Now, on with the Erin story. Erin's counts tipped down at the end of last week. She woke up Saturday morning with worse than usual sniffles and 100.4 F temperature (Quelle Horreur! awfully close to that Magic 101 mark that wins us a three-day stay at the local hospital spa). We stayed on the fever watch all day. . .forcing her to watch television and be coddled. We also cleaned house fiercely in preparation for a dinner party we had scheduled for Saturday evening. The plan held together, and we were able to enjoy our friends without having to rush off to St. Joe's.
Sunday she felt well enough for Sunday School, quesadillas at Gina's, and a gingerbread house building party at Nico's. I graded reports all afternoon (watch for this repetitive theme as the update continues) and enjoyed Davis's show that evening (while I graded reports). I also pondered what to do about Erin's sniffles/cough fest that had entered Week 8. I felt we had dodged a bullet on Saturday, but if we didn't get it cleared up, we were eventually going to get unlucky and end up with a hospital stay.
Erin's white counts had roared back by Monday which comforted me some, since she had come home from school early with a headache and other minor complaints. I graded at home and kept her company. Tuesday we saw an ENT who suggested a heavy-weight antibiotic (Augmentin) and a tapered steroid to clear out her sinuses, and I hoped that would do the trick.
Tuesday night we celebrated Saint Nicholas's Day and Nico's early birthday with the Tjoelker's. We ate part of his gingerbread house and had a grand time. The festive occasion was followed a few hours later by the barfies and a new set of worries about Erin. Again, we got lucky (what kind of warped person am I to start a sentence about the barfies with "we got lucky"?) in that she only got sick once and never pulled a true fever. We stuck around the house, with a fire in the fireplace, burning Christmas-scented candles, and listening to Christmas-scented CDs. . .and I kept her company by grading reports.
This morning, Erin declared everything "All Good," dressed herself in a warm, yet gay-spirited outfit, and headed out to school. She just couldn't believe that it rained most of the day yesterday and got as cold as it did and DIDN'T SNOW. I dragged my sorry self up to my office (does anyone know why the University closed today over 24 degree weather? Is anyone out there laughing as us?) to. . .you guessed it, grade. I guess that's why they pay me the big bucks.
Thursday, December 1, 2005
Lunch for Life
12/1/05
First of all let me say a special hello and thanks to our friends, Ruby, Rita, Carla, Erin, Phyllis, and Nancy, who have already given up their lunch for Erin (giving code 13993). The official Lunch for Life campaign began this morning, and when I last checked (10:00 a.m.) had already raised $21,140. Lunch for Life was organized by Mark Dungan of Fort Worth, whose daughter has the same disease as Erin (also relapsed). Lunch for Life is noteworthy because it is entirely grassroots, entirely run by the families of neuroblastoma patients, and entirely devoted to raising money for research for a cure for neuroblastoma (you can read more in the 11/28 update below). If you find this as compelling as I do, join in and spread the word.
First of all let me say a special hello and thanks to our friends, Ruby, Rita, Carla, Erin, Phyllis, and Nancy, who have already given up their lunch for Erin (giving code 13993). The official Lunch for Life campaign began this morning, and when I last checked (10:00 a.m.) had already raised $21,140. Lunch for Life was organized by Mark Dungan of Fort Worth, whose daughter has the same disease as Erin (also relapsed). Lunch for Life is noteworthy because it is entirely grassroots, entirely run by the families of neuroblastoma patients, and entirely devoted to raising money for research for a cure for neuroblastoma (you can read more in the 11/28 update below). If you find this as compelling as I do, join in and spread the word.
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