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Thursday, July 26, 2007

Silence

July 26, 2007

The Buengers are now breaking off internet contact and leaving for parts known and unknown. Don't expect any Willie tidbits or cute pics until we return.

In years past we have bolted from town to escape the heat. This year we are looking for sanctuary from the rain. Surely the New Mexican desert/lower Rockies will accommodate.

Sunday, July 22, 2007

Vacation from Vacation

July 22, 2007

I can't tell you exactly what we have done this week, but we deserve a vacation. Okay. Maybe I exaggerated. "Deserve" may not be the exact word I was looking for. Earned a vacation? Merited a vacation?
How about the honest truth? We want a vacation, and we're leaving whether you give us permission or not. Actually, Walter is safe saying he earned a vacation, having spent all of June and a good part of July working through and finalizing his department budget (including salary adjustments). It's me on shakier ground, having finished up summer school at the beginning of the month to devote myself full time to the job of Erin's chief social secretary and chauffeur until the fall term starts on August 27. This included planning and executing the following activities (since Thursday): Carpenter's Kids tour of the local television station and trip to the park and splash pad, an afternoon of volunteering at the church, a splendid dinner party at the Tjoelkers, the release party for Harry Potter 7 (how do you like Erin a.k.a. Tonks?), hosting Erin's buddy Aaron for swimming, Legos, and spy play, whooping it up at the rodeo (including participating in the calf scramble), and attending church. She decided to take it easy today, so I got some weeding done in the yard.

Anyway, whether I deserve it or not, we're off. To keep all you would be burglars flummoxed, I won't tell you our top secret plan to drive to Dallas on Thursday after Vacation Bible School, leave Dallas on Sunday, picking up Davis in Amarillo en route to Santa Fe, and spend the next ten days tromping the mountains of western New Mexico.

"Wait," you say, "Why is Davis in Amarillo?"

He's not yet, but he only wants to miss one Saturday of work at Maddens, so he is staying in town until Sunday morning, when he's catching a flight to Houston and then another hopper to Amarillo.

"Wait," you say, "If you are in Dallas and there is a direct flight from College Station to Dallas, why is he flying to Houston and then Amarillo?"

"Good question," I respond. "American Airlines wants $650 for that puddle jump, so we had to fall back to plan B. That the one-way flight, even through Houston to Amarillo, costs much more than Davis will earn working on Saturday is beside the point (at least to Davis, who apparently is not paying for the plane ticket to join the family on vacation)."

"How about medical news?" you ask.

"So far, so good," I reply, "I couldn't tell any difference between the etoposide CBC and the cyclophosphomide CBC: hemoglobin a little below normal, white count and ANC hovering right at the low end of normal, and enough platelets to burn."

"So, what's up between now and Thursday?" you ask politely, even though you are not all that interested.

"Vacation Bible School, soccer practice, a trip to Snook for PPR Day celebrations (I know, it's a few days late, but who really cares anyway?), horse back riding, piano lessons, and another trip to the UPA lab for blood counts." Can you guess who needs a vacation from their summer vacation?


Tuesday, July 17, 2007

Water, Water Everywhere

July 17, 2007

Eleven Observations Comparing Cyclophosphamide with Etoposide:

11. Etoposide is easier to spell.
10. Etoposide dose is 21 days out of 28; cyclophosphamide is everyday.
9. Etoposide is refrigerated (even when you travel); cyclophosphamide sits on the counter.
8. Etoposide is an ugly brown gel cap about 3/4" long; cyclophosphamide is a perky aqua blue tablet smaller than a mini M&M.
7. Etoposide is given at 6:00 a.m. rain or shine, school day or holiday; cyclophosphamide is given with breakfast.
6. Both require avoiding St. John's wort (are any of you thinking this is a great loss?), but
etoposide requires avoiding grapefruit, while cyclophosphamide allows grapefruit consumption.
5. Cyclophosphamide requires an uptick in fluid intake (more water, juice, or if you think creatively, like Erin does, more juice bars, ice pops, Lil Scribblers, watermelon, cantaloupe, grapes, and so on).
4. Etoposide is a topoisomerase II inhibit
or, related to the toxin found in the American Mayapple; Cyclophosphamide is a nitrogen mustard alkylating agent. What does that mean? Both are toxic agents that kill cancer cells, but they use different mechanisms.
3. Long-term use of etoposide sometimes leads to secondary leukemia; long-term use of cyclophosphamide sometimes leads to transitional cell carcinoma of the bladder.
2. Etoposide has allowed Erin's hair to grow back (somewhat thinly); hopefully, the same will be true of cyclophosphamide.
1. Etoposide has worked keeping Erin's tumors in check for the last 20 months; cyclophosphamide has worked keeping Erin's tumor in check for the last seven days.

Conclusions: Almost too close to call, though cyclophosphamide might edge out etoposide on most factors (except spelling and having a week off now and again). We will reserve judgment until we get twenty good months out of the new guy! In the meantime, we will head to the local clinic tomorrow to see where her blood counts will fall on this regimen.

So, in the spirit of adding more fluid into her life, Erin has spent the last week mostly in the water. Last Wednesday, she swam at Bill and Sue Burchill's with Adam, Nico, and Ian, and her new friend Bill. Thursday, she swam at the A&M Outdoor Pool with Carpenter's Kids. Saturday, the Mystic soccer girls came out to the lake for a swim and cook out. They meant to play soccer, but no one was willing to get out of the water long enough to put shoes on, so there they all floated, boated, jumped, and splashed, while the parents sat dockside enjoying water substitutes.

Erin also had her pal Clayton Sue Benson from Fort Worth in for Camp Buenger on Saturday for several days (and nights. . .is this reading like I haven't had as much sleep as I would prefer?), Those two girls' incorporation of water into their daily routine encompassed a range of activities. Many of them involved concocting strange brews, tonics, lotions, and potions (I think in anticipation of Harry Potter and the Deathly Hallows, scheduled to appear, then disappear from booksellers' shelves next weekend). They also built a model of the Gryffidor common room with craft sticks and sculpey (which as best I can tell had no relationship to water, but built on the HP theme) and followed a multistep process (that incidentally, according to the strict rules of wandsmanship, couldn't be started before midnight) for creating working wands. Check them out with "wand at the ready"!



Lest we forget the importance of hydration, Erin and CS insisted we spend the last afternoon at the Adamson Lagoon. There they made full use of the water slides, lily pad hazards, and other floating obstacles placed around the pool. They also managed to snag Nico while we were there for one last night of fun and fancy, with a three-person sleep over (I almost wrote a "three-way" sleepover, which might have crossed the line on this family-friendly home page).



So, that's it for now. See you at the water fountain.

Thursday, July 12, 2007

So, I Promised You the Fun Part, Too

July 12, 2007

We snuck out of town on Sunday afternoon to get ready for scans that started at 7:15 on Monday morning. How did we get ready? By heading to the Kemah Boardwalk, otherwise known as The Family Spend-o-matic, for the evening, we guaranteed that we would all be tired enough to sleep through the alarm on Monday morning. For a low, one time price of a couple of jillion dollar, each person in your group earns the right to wear a stylish wrist band. Wait there's more. Proud displayers of wristbands, FOR NO ADDITIONAL PAYMENT, earn the right to stand in line at every attraction.


Some, like the train, required the heart of a lion to actually ride. Note the white-knuckled grip and brave, but terrified looks on these young passengers faces:

Others proved more sedate, as demonstrated in this short video of the Inverter. The blurs in the front two seats are Nico and Erin. I call this video, "Famous Last Words: Mom, What Does Inverter Mean?"


video

Adam didn't actually trust any of the rides that Erin and Nico wanted to ride, but eventually agreed to go on the Aviator. . .once:


He would not ride Pharoah's Fury with them, and who can blame him? We ended the evening, after a tasty meal at Joe's Crab Shack and more opportunities to have their guts shaken and stirred, with Erin, Nico, and Adam prancing and cavorting like water sprites in the dancing fountain.


video

On Monday, the children traded their blue outfits for green ones, and (at least for Erin) their amusement park wrist bands for hospital ID tags and a contrasting-colored, take-home-overnight IV.


Their reward for patience through, the IV placement/blood lab, the five-hour GFR test and the echocardigram (9 hours total)?


Well, an apple and a movie. Just after we paid (the outrageous) parking fee and pulled out of the parking garage to head to the theater, my cell phone rang with news that Erin's potassium (you remember, it was dangerously low in December?) was now dangerously high. "It was probably an error, but could you just drop back by the clinic for a re-check?" With dragging feet (remember it was 4:00 now, and we had been hanging around the hospital since 7:05 a.m., which begs the question of why someone had not tracked us down some time in the previous nine hours when we were just hanging out having blood draws every hour or two. Must have been late breaking, hot-off-the-press news.), we returned to clinic. . .where believe it or not, the nurse couldn't get the IV to work and told us to go home that we we try again tomorrow (I guess Erin wasn't in that much danger, after all). That's when we made a break for it, just in case someone with more authority rescinded the order. We made it to Ratatouille just in time (not that big of a stretch since it was playing on four screens with a new showing starting about every other minute or so).

The decision to bail turned out sound. As I mentioned in the last post, the re-done blood chemistries on Tuesday showed everything, including potassium as normal! After another long day at the hospital on Tuesday, we headed back to Bryan, arriving just in time for Erin to change into soccer cleats for practice and pickup games against boys teams. She had just enough energy on Wednesday to go to piano lessons, visit her third grade teacher (Jennifer Steen) and her very cute one-year-old Matthew, and swim at the Burchills on Wednesday. What did she do today? Headed out to Carpenter's Kids for an all-day excursion. Go figure. She had been in training for a long day all week.

Wednesday, July 11, 2007

You Can Breathe

July 11, 2007

For those of you holding your breath for news on Erin's scans, feel free to breathe. Erin made it through all of the various tests and scans on Monday and Tuesday with almost universally good news:

GFR (kidney functioning): normal
Echo Cardiogram (heart functioning): normal
Bone Scan: normal
CT Scan: unchanged from previous scan on April 4 (stable)
Blood Chemistries: normal
Complete Blood Count: adequate

One blood number came up a little high (TSH--Thyroid Stimulating Hormone), so we will keep an eye on it to make sure that Erin's thyroid was not somehow damaged as a result of all of the treatment she's had. While the number was on the high side, the clinical signs to look for if she had hypothyroidism (lethargy, lack of growth, weight gain) are completely absent, so we will watch and wait.

I will update you with the fun part and some picture later, but now I have to go pick figs, before it gets too hot. Before I leave, I would like to thank Davis for updating the site on Sunday and letting everyone know what we were doing. I slipped out of town without doing it myself.

Sunday, July 8, 2007

A Short Vacation

Erin and Vickie are taking a trip to Houston for scans and will be back Tuesday. They took along Adam and Nico and made a visit to the Kemah Boardwalk. It had a variety of carnival rides, but none as appealing as the Lighthouse Lift. We are all looking forward for them to get back to town and for Erin to continue with clean scans.

Wednesday, July 4, 2007

Count von Count

July 4, 2007

Erin had monthly clinic last Thursday and passed with flying colors. Her height and weight were proportional, and Dr. Parr couldn't turn up anything worrisome (this mom could tell that Erin was feeling very well, partly from her vigor, but also from the fresh crop of inch-and-a-half-long hair that has filled in the spaces between her longer hairs that the ravages of last winter's serial illnesses left). On Monday she started her last cycle of etoposide. Pending stable scans and doctor recommendations next week, she will switch to cyclophosphomide tablets. We hope to continue getting good results for many more months.

We waited until Monday afternoon to get the results of her blood labs:

WBC: 3600 (a little low, but not dangerous; mainly she has a lagging lymphocyte count, which makes her a bit more vulnerable to viruses.)
ANC: 1900 (low normal; okay ability to protect against bacterial infection)
HGB: 11.3 (low normal, good enough to spark Erin's engine)
PLT: 330 (just where it needs to be)

The chemistries were also pretty good, though I suspect Heidi Russell will have something to say about her elevated BUN (31, when 7-18 is the normal range; this is something we watch because of the celebrex). Her AST and ALT (measuring liver function) continue to hover above normal, indicating (my interpretation) the constant irritation of treatment and its effects. Her sodium, glucose, and bilirubin were a shade low as well, but we haven't received a call from Houston with instructions or admonitions, so I guess we'll check them again next week and ignore them until then.

Other than the clinic appointment Erin is just doing the usual stuff. She has fit horseback riding in between the rain twice since we returned from DC, had a piano lesson, and wiled away an afternoon painting pottery with Carpenter's Kids from church. Katie Lockett spent the day and night on Friday, and they used much of their time together to don costumes and plan and put on shows. Mary Beth and Rachel (twin granddaughters of our next door neighbors and infamous kicker-outers of Erin's front tooth) arrived yesterday for a few days. We are all waiting (some not so patiently) for the Tjoelkers to get back from their vacation. We misted Adam's slugs for them while they were gone, but given our sorry stewardship of the Tjoelker's triops last summer, we'd like to have our friends back before we let them down again. Besides, Nico and Adam will need a couple of down days before we nab them for the scanarama next Monday and Tuesday.

I read a post today on the ACOR (American Cancer Online Resource) neuroblastoma site from my friend Angela Thomas (see her blog for her daughter Christi) who was updating the group about the progress Dr. John Maris of Children's Hospital of Philadelphia was making with the tumor cell line he grew from Christi's tumor (at the Thomas's request he named it FU-NB-06). He is studying it to see what made it so aggressive after it acted so gently and cooperatively for so long. This type of research is definitely interesting to me, because it might provide answers for us as well, since Erin's tumor (so far) has been compliant and indolent, but we know has the potential to turn on a dime.