Mystic 97 Captures the Bronze

May 18, 2008

Erin's team's roster this spring wasn't large to begin with. Fifteen players dwindled to fourteen when Abigail moved to England for a semester (hurry back, Abigail!) and shrunk a second time when Kaitlyn had an ankle injury that wouldn't improve without complete rest (come back as soon as you can, Kaitlyn!). Then, Marla had a chance to go with her cousin on a make-A-Wish trip, and we all knew that's what she needed to do.

So, the Mystic started the state tournament with twelve (although two actually arrived late, so the first game they began a player down 10 v. 11), including Erin. The first day, she played about fifty out of sixty minutes each game. We beat the number one seed, 2-0, and left so much on the field that we lost our second game to the eventual state champion Lady Rapids from New Braunsfels.

Sydney, already nursing the croup on Saturday ran up a 102 degree fever overnight (get well soon, Syd!) and her mom took her home, leaving us with a squad of eleven (no substitutes) playing against a team with seven extra players. The Stingers scored first, but instead of backing down and feeling sorry for ourselves, we battled back, eventually playing the ball past their keeper and holding on to a tie. I don't know if there is a metaphor here, but find one if you'd like. Here's our Mystic, tired, but happy.


Medical Outlook: Erin started a specialized antibiotic on Friday to combat the main side effect of her new treatment: diarrhea (which I suppose I am going to have to learn how to spell if it's going to become an intimate part of our lives). Tuesday, we will drive to Houston to pick up the irinotecan and temador combo that we hope will bring that tumor to its knees, crying for mercy (at which point we will say, "No, no mercy for NB."). Dr. Russell wants to give the first dose in clinic that day, just to see how Erin tolerates it and to make sure there aren't any unanticipated, wonky side effects. After that she will take three or four temador capsules each morning, wait an hour, then take 3.2 mls of irinotecan mixed in Crangrape juice. Each three-week cycle we will do this for five days in a row, take two days off. Do it for another five days. Then take nine days off. Repeat. We will scan during the sixth week and hope for measured improvement.
.

So I Pulled Out the Suitcase

May 16, 2008

Most cancer parents keep a suitcase packed in case of fevers, unexpected admissions, and the standard in-patient stuff. Tonight, I'm packing Erin's bag.

I'm putting in her black jersey and her white jersey, her black shorts, her tornado socks, her shin guard and cleats. Tomorrow we leave for the state tournament for the South Texas Cup. It's better than the hospital.

What a Difference a Day Makes

May 15, 2008


Erin blasted out of the starting gate this morning like the last two weeks of back pain, barfies, and the down lows were a figment of our imagination. We spent the morning visiting Jane Long Middle School, where Erin will go next fall as a newly minted sixth grader.The biggest problem she can anticipate there is that the desks are built to accommodate the larger end of the spectrum of middle schoolers (some of whom are gianormous). After a morning among the giants and giantesses, we returned to Mary Branch Elementary where everything is just right. PT went equally well, with Erin performing strengthening exercises she hasn't felt up to in two weeks.

PT, you say? You and Walter will continue to torture her with physical therapy even in light of this weeks news? Yes. We plan on Erin sticking around a lot longer, and she definitely has back and core muscle issues that need attention. We want to work on them now, before she turns into a teenager and takes the don'ts and won'ts. Anyway, she needed a good massage to do her best at fifth grade field day tomorrow. She's scheduled to run the 600 meters at 9:25 in the morning and has some other event a couple of hours later.

Erin has done so well to day, you'd think that she had already started chemo instead of stopping it yesterday. That won't happen until next Tuesday. Dr. Russell and I had tossed around a variety of ideas this week. We strongly considered ABT-751, because it can achieve the quality of life with a low personal burden that Erin hopes for, but since it doesn't really hold much promise for tumor shrinkage, we decided to hold that one in our hip pocket for later and go with temador/irinotecan for a few cycles. Lest you think that the trip down to Houston was a complete downer, check out Erin and Katie at the aquarium on Monday evening:

Not What I Expected

May 14, 2008

When I went to bed last night, I had calmed myself considerably. I accepted that Erin's news, though unwanted, was not unexpected. Parents in relapsed NB-land have a talent for living their life while waiting for the other shoe to fall. We didn't have a concrete plan yet, but I reminded myself that we had more options to choose from than we did three years ago when Erin relapsed. I knew I would sleep well. A restless night on Monday, followed by a long and psychologically draining day at clinic, rush hour drive time, and those three glasses of wine almost guaranteed it.

Sleep came quickly and lasted until 2:14, when Erin's hand gentled me from my dreams with the news that she didn't feel well. I figured back pain had waked her and that she needed a massage and some cuddling. I had it partially right. Her back did hurt, but it didn't take me long to adjust my perspective. What convinced me? the vomit. Erin spent most of the next eight hours cycling between the sofa, the toilet, and Walter's big green chair (normally green, not stained green). We've had such an easy go the past few years that it took until sunrise to remember that I had a cache of zofran (the miracle anti-puke) drug stashed away for just such occasions. She managed to hold the second one I gave her down long enough for it to do the trick. An hour later she kept a tylenol down and an hour after that her celebrex. With the barfies and the back pain under control, she caught a nap around noon and woke a refreshed woman. A quick call to her nurse, Beverly, at UPA confirmed that this virus was a come-and-go type and that she was most likely "done" with it by mid afternoon. Whew!

The whole experience was surreal. . .sort of a realistic preview of any heavy chemo option that we might choose. If we need to follow that routine we will, but I think we lean towards finding a path more similar to the one we've followed so far: minimize the amount of time away from school (Erin's first priority) and maximize the amount of time she feels well (Erin's fourth priority). For the record, when we asked her, she said her second priority was for it not to be too much of a burden (her words). I asked her whether she meant a burden to us or to her, and she said to her, but that she didn't want it to be a burden to us either. How could I dare tell her that I wouldn't consider it a burden to cut off my right arm and drink the blood if it would cure her?

Since Erin didn't go to school, I stuck pretty close to her side, venturing away, whenever I could to check the e-mail and see if Dr. Russell had started answering the questions I had barraged her with last night and early this morning. You're probably a whole lot more disciplined that I am, but I can tell you that checking mail every seventeen seconds does not make it arrive any faster. In fact, it wasn't until around 2:00 when Tracy Ash called to check on us, that I learned that Wednesdays are Dr. Russell's day off. Well, it's not what I expected, but it's a more palatable explanation than any of the other dozens of others that I had considered to explain why she wasn't responding.

Too Smart

May 13, 2008

It should surprise no one that a tumor produced by the brainy Erin would eventually outsmart its treatment plan. So it didn't shock us today that the CT scan showed that Erin's tumor has progressed, and we will now have to form a new plan. We've had a great run: 9 months on cyclophosphomide, 19 months on etoposide, and before that 9 months of the topless cyclone (topotecan/cyclophosphomide) without progression. If only the next rounds of treatment can match that!

We don't have a definitive plan yet (still in consultation with Dr. Russell), but I do know that Erin will have many fewer pills at her place at dinner tonight.

The Audacity of Mrs. Bun

May 12, 2008

During those weeks when Willie wore his E-collar and felt miserable, the neighborhood bunnies ran amok. Baby Bun ventured far from his home under the house near the end of the road to set up a fort under the Cook's propane gas tank, oblivious that he had ventured onto Jade and Buster's turf. Luckily, Erin and my mom rescued the naive Baby Bun and returned him to his nest. Not that he was the only bunny who had taken advantage of Willie's downtime. Mrs. Bun must have missed Willie's attentions during those dark days, because in his recovery she has taken up some wild and wanton ways. At dusk last night, as we made the curve near the pond and headed towards home, I noticed her first. She was sitting in the middle of the road coquettishly looking back over her right shoulder. There she remained, batting her eyelids, flaunting her bosom, and flouting the all the rules of the animal kingdom. Clearly, she was waiting for Willie to notice her. She has done this multiple times lately. She wants him. She's willing to vie for him. When he finally notices, the seduction begins. Willie doesn't exactly understand how to play her game, but he's willing to try. In the end, after much chasing and snuffling, Willie is left dreaming of the possibilities and admiring the audacity of Mrs. Bun.

I wish I could tell you unequivocally that Erin has recovered from what set her low last week (just like Willie most assuredly has), but her energy level and aches and pains have ebbed and flowed. She felt well enough to practice soccer on Friday night and lasted about 70 minutes (which is about the best her back allows these days). She took an easy start to the day on Saturday, then helped her coach Lisa Villalobos with Hot Shots (pre-school soccer players) for a few hours. She didn't feel like doing much the rest of the day. The quiet time gave her an opportunity to retire to her room and work on her top-secret Mother's Day project, while listening to The Beatles ad naseum.

Sunday she woke up felling reasonably perky and presented me with a new, beaded chain to hold my eye-glasses [NOTE BENE: I have reached the age where I have not yet moved into bifocals, but can't read with my glasses on or drive with my glasses off. Needless to say, I spend the greater portion of the day donning and doffing my eye wear. Keeping my specs in chains helps me immensely. Otherwise, I would waste an even larger portion of the day wondering where I left them when I took them off. Now I'm so accustomed to wearing them on a chain that when I take them off, I just drop them. Definitely a bad habit, if you forget to wear a chain!]. When we headed off to church, I thought we had turned the corner on the virus and its debilitating effect on Erin's outlook and comfort. The next time I saw her (an hour and a half later) in the choir area at the front of the chancel waiting to sing, I could tell she hurt. She made it through both pieces her choir sang, but when she joined Walter and me in the pew, she just slumped for the rest of the service. We got stuck in a big Mother's Day lunch crowd at Gina's, and eventually the wait got too long and my mom took her home. She just couldn't get comfortable at the table waiting.

I prepared myself to hang out quietly with her the rest of the afternoon, but she rallied. I broke one of the rules of good mothering and suggest we take a walk around the lake. . .BAREFOOTED. We had a jolly time--only a few burs and nothing really icky stuck to our soles--and it warmed us up enough that Erin made it through all of her home exercises except "the birddog" with no complaint. Tomorrow's scans will tell us a lot about whether these back issues arise from tumor pressure or from something else. We're hoping for something else, but even that is not a free pass. Somehow, we have to find a way to shoot the gap between the Scylla of too much activity and the Charybdis of too much sloth. Overdoing and underdoing seem to trigger the same discomfort cycle.

A Bit Better

May 8, 2008

Erin felt well enough to go to school this morning, claiming she felt like a 67 on a scale from 1-100. I think the day pooped her out. She agreed to physical therapy after school, but not soccer. I have hope that she just has the BVC (Brazos Valley Crud) that most local residents get this time of year, and that it will run its course by the weekend.

I turned in final grades today and will make myself scarce from the office (thus avoiding the belly-achers and whiners) until it's time to gear up for summer school. Now if I can just find my to-do list.

Caroline Pryce Walker Conquer Childhood Cancer Act of 2008

May 7, 2008

I needed some good news today. Apparently, I violated Scott Finestone's strict instructions (see the Saturday, February 10, 2007 entry on Zach's caringbridge page) for avoiding bad luck and tempting fate because I forgot to say "Kaynahorah" and spit three times (ptuii, ptuii, ptuii) last week when I got off the phone with Dr. Russell. She had phoned to talk about Erin's blood labs and to let me know she had been working on a new road map for Erin that extended her current treatment plan out another three years. Given that optimistic outlook from her doc and the fact that I was feeling confident about Erin's health save for her back (which we were handling through standard channels), I failed to ward off the evil eye (literally and figuratively).

You already know about the eye infection. Well, the virus she has in her eye, or perhaps an independent contractor virus, has set up shop in the rest of her body, giving her an achy back, a stiff neck, a headache, and swollen lymph nodes in her right groin area. For those of you in the know, I'm sure what you have just read is sending up all kinds of red flags. I'm holding tight to the virus theory, but am glad I don't have to wait longer than next Tuesday to take a closer look inside to see if something more nefarious than a kid virus is causing Erin's woes.

On top of Erin feeling punk with the kind of symptoms I don't like to see, we learned this morning that our friend the amazing Hans (shown stage left) has something ugly on the bone scan of his arm that might be relapsed NB. I just get so angry that families all over the country and all over the world have to live with this burden. Tell your son his cancer "booboo" has come back. Tell your daughter the back pain sidelining her from her favorite activity may just be a side effect from cancer treatment, not her cancer grown back, although you can't be certain either way.



The google alert that came in a few minutes ago to my email account brightened my un-cheery disposition. Today, the Conquer Childhood Cancer Act passed successfully through its House Committee with few amendments, the most noticeable one was that it now has a new title: The Caroline Pryce Walker Conquer Childhood Cancer Act of 2008. Congresswoman Deborah Pryce is the leading co-sponsor for the bill and the mother of a neuroblastoma angel, Caroline, who died as a nine year old. The bill now has to move to the floor of both the House and the Senate (where it has bi-partisan support and a majority in each chamber already signed on as co-sponsors). If it passes in different versions it would have to be reconciled in conference committee before being sent to President Bush for a signature. I continue to have high hopes.

If the bill becomes law, our next battle would begin: fighting for appropriations to fund the the legislationl. That will be a monumental fight, but for now, let's take the bit of good news. What we are working for has taken another step forward. Knowing that has lightened my load a little today.

The Eyes Have It

May 4, 2008

I have scrubbed my hands more times in the past three weeks than I have since Erin's original diagnosis and treatment. Cleanliness may or may not be close to Godliness, but it certainly helps to soap your hands up before dealing with eye infections. Willie is much better now, but it doesn't look like dirty hands are in my future. Erin's right eye got pink and crusty last night. This amateur doctor is making the call early. . .conjunctivitis. I'll try an over-the-counter remedy until Monday when we can see Dr. Parr and get some antibiotic drops. Looks like I'll be in the hand wash/eye drop biz at least another week.

On Friday, Erin, Nico, Adam and Jesse got into the spirit of the weekend on Friday by doing some dewberry picking, then some tart baking. Not satisfied with a simple dewberry tart, they got creative and added apricot jam, crushed pineapple, mandarin oranges, and apple bits to their tarts to multiple the taste and diversity of their creations. The entire process (INCLUDING CLEAN UP) was self managed and adult free. In fact, we were relegated to the deck with liquid libations to await the final product. Let me assure you that the tart's butter crusts were the tastiest pastry I have had in a very long time and made completely from scratch.


The Mystic '97 brought home the silver medal from South Texas Cup play yesterday and qualified for the state tournament in two weeks. We were three minutes away from the gold, having taken a 1-0 lead early in the first half and held it, but a tying goal at the end of regulation threw us into overtime, where we ran out of steam. Erin played bravely, despite her back injury. She has made it through just one complete practice in the last six weeks, and usually goes until her back pains her, then sits out and ices it down the rest of practice. With only two substitutes yesterday (the other team had seven), the team needed her to play as many minutes as she could. She managed to space her time out across both halves and the two extra periods, starting both halves, with a midway break, then going back in. It was tough to keep her back warm and loose when she was out, but I ably served as masseuse in between, and we kept her from tying up.

I want to end with photos and Erin's own explanation of her recent invention project for school (made from balloons, papier mache, and assorted detritus from around the house):

My invention is called the P.A.T or the personal air transportation. Everyone will soon have one after it becomes popular. It solves several of the world’s problems:

• gas usage;
• legs tiring on long car trips; and
• driving when tired

A P.A.T is a ship that has balloons inflated on the bottom. These balloon’s work like hot air balloons to float the car up into the air. The difference is that instead of using some sort of flammable gas to heat the air to inflate the balloons, the P.A.T. depends on solar power to create heat to fill the balloons. Heat, of course, rises making the whole ship float. To propel the P.A.T. forward, there is a large fan array attached to the end of the ship which is also powered by solar power. On the inside, the driver and the passengers ride in comfortable seats. The driver can turn and face the others in the car because the P.A.T. flies it self. It comes equipped with sensors on the outside, so if it spots anything in motion coming toward the ship it alerts the driver. There is also an alert if the moving car is approaching something stationery. Another feature of the P.A.T is that each seat is equipped with different exercise machines: tread mills, bike pedals, etc. My model only shows the bike peddles, but each machine allows the person to do something useful while traveling.

Conehead, the Barbarian No More

May 2, 2008

Willie still has his contact lens (until Monday), but the cone came off first thing this morning after nine style-filled days. His reaction really reminded me of the early years of Walter and my marriage. For many years in our early married life, Walter and I had ten-and-a half month contracts with the university at what I now consider laughably low wages. During the six-week summer stints when we had no pay checks (and practically nothing saved), we had to scrimp to make ends meet, dining on pasta and anything else we could afford on our stretched-thin budget. We became experts at making special combos from whatever we had in the house, until even our imaginative brains were taxed by the pantry that held only a jar of olives, a box of pearl barley, and a quart of V-8 juice. Once that regular fall paycheck hit the bank, all of our pent-up spending urges would come swooshing out, and salespeople at any shop we entered could boost their commissions.

When we took the cone off Willie this morning, he did two things in quick succession. First, he apologized profusely for whatever it was he had done to merit such a wicked punishment and swore he would never do whatever it was again. Second, he made a break for it, as if he had pent up urges of his own, much like our spending urges after a long summer. In this case, he had to investigate across every fence, under every out building, and through every narrow space that he had been barred from for the last week plus. Wearing the cone apparently adversely affected his hearing because in every test we ran this morning (regardless of pitch, decimal, or tone of voice), he did not return when called. When he finally dragged his sorry self back to the house, he was happy as a clam (can anyone tell me why in the world a clam would be happy and where this simile came from?).

Erin had the TAKS tests this week (a make-up reading test for having taken a pre-spring break vacation the first time it was offered and the fifth grade science test). Neither did any good for her back. Apparently, the teachers/principals/administrators want everyone taking the test to try their hardest. To discourage anyone from rushing through the test in the hopes of finishing early and having fun, no one is allowed to do anything except sit at their desk and read until every single person taking the test is done. One child got sent to the office for drawing at her desk (too much fun?). Since Erin was taking the re-test in reading with the students who had not passed the first time, everyone was very concerned that the test takers take their time. Erin finished her test at 11:25, but had to stay seated until 2:59 when the last child finished. Thursday, I was wiser and picked her up from school when she finished. Unfortunately, the Wednesday session had wreaked havoc with her back. In physical therapy on Thursday she was so knotted up that the whole session was heat and massage (no exercises, not even any stretching). Anyway, for a variety of reasons I'm glad to get this week behind us. Hopefully, she can continue making progress on her back after this setback.

We did manage to turn Thursday into a productive day. With Davis home for a couple of days and Erin out of school over the lunch hour, we made it a family event to attend the opening day of Gina's. For those of you wondering if the new Gina's would be as good as the old Gina's. . .all I can say is try it. We're going back (Leslie, do you want to meet there after church on Sunday?).

I'm going to end with a story that some of you will think I have made up. I swear everything I'm about to write is true and totally Erin.

At breakfast the other day, Erin started asking roundabout questions about her Make-A-Wish trip. After a few exchanges, I gleaned that she was trying to figure out if she could ever have a second wish. I figured she was wrangling for another trip to Wyoming (which was going to have to come on our own dime next time). When I finally asked her what she had in mind, if she ever did have another wish. She said she would ask to meet all the Senators and Representatives in Washington personally, so she could ask them to support the Conquer Childhood Cancer Act. I told her that it probably wouldn't do much good to meet them all, because she wasn't their constituent. So she amended her wish, and said that she wished she could meet Senator Kay Bailey Hutchison in person to tell her about the bill and ask her to support it. I told her that was a good idea. Then she looked at me and said, "I think the Senator doesn't support the bill because she's not informed. And I think she's not informed because her staff is incompetent." Another adult at the table said, that that wasn't true. She didn't support the bill because she was a [and he named something that starts with trog and rhymes with lodyte]. Anyway, I had to agree with Erin's assessment. I don't think the bill is on the Senator's radar at all. This would be a good time to go to my April 11 entry and refresh your memory about how to contact legislative aids.

Keep Up the Wonderful Work

April 29, 2008

Another downside to Willie's weepy eye was that his trip to the emergency room last Friday overlapped with the awards ceremony at Erin's school by just enough to make me miss it. Walter made it, but I was left holding the leash, so to speak. Erin was chosen as artist of the six weeks for fifth grade. Her wonderful art teacher, Lucinda Houtchins, who makes the very best and most thoughtful presentations of anyone in the school, was kind enough to share with me a copy of what she said as she introduced Erin and made the award:

The artist of the six weeks for Fifth Grade is
Erin Buenger
from Mrs. Kutzenberger's class.

I was so delighted to learn that Erin has chosen ART as her elective for 6th grade!! It suits her very creative nature perfectly.

Whenever I've listed the requirements for a project, I've counted on Erin to bring uniqueness, personal meaning, joy, and beauty to her completed artwork. You can find these qualities in her self-portrait prints now on display in the library. these prints were selected to represent our school for a special exhibition that was displayed at the Post oak Mall during the month of March as part of Youth Art Month. The sunny bright colors, the wavy lines of her hair and the repeating patterns in the clothing all draw our attention to her impressive portrait.

Likewise, Erin's clay mask in the form of a tree trunk waiting for roots and branches is most unique and well thought our. With its bands of green and brown in the upper branches, with its complex texture patterns in the forehead, and with its very sad facial expression, Erin's mask has made us think and consider why a tree would be sad even as we enjoy its colorful design.

Congratulations, Erin, on making us think about art! Keep up the wonderful work!

As long as we are on the topic of Willie, I might as well update you. When I took him in for a recheck yesterday, the doggie ophthalmologist didn't think he had made much progress over the weekend. The infection has cleared, but the ulcer hasn't healed. According to Dr. Millichamp, Willie's eye has made new corneal tissue cells, but they're not sticking. To remedy this, Willie is now sporting, in addition to his Elizabethan ruff, a monocle contact lens to protect the surface of the eye. The contact doesn't add to the stylish look like a regular monocle would, but I'm sure the confidence it gives him, just knowing that it's there, makes him the dapperest dog in the entire county. It also adds to his creds as an up and coming dog of great expense.

Woe is Willie

April 26, 2008

I never expected Willie to cost more than Luke. Willie came to us for free, a skinny stray pup with questionable parentage. Luke arrived without papers, as well, and never had that look about him that screamed pure bred. He also came with a price tag, $300, that allowed us to separate him from his unscrupulous and abusive owner and prove to Davis that sometimes having a generous heart is more important than having any sense. The toll for owning Luke has only increased with each passing year. Most of the bills come because Luke has taken it upon himself to familiarize himself with the American health care system for pets. Twice he was hospitalized after dog attacks. Despite weighing 95 pounds and living life like most yellow labs, as the friendliest doofus on the block, he has managed to accumulate hundreds of dollars worth of charges for treatments for lacerations and and other battle wounds. I swear, he has NEVER started a fight, and if you compared the damage he inflicted with the damage he got, you would never even believe he fought back, even for a second. Even bigger expenses have come, however, because he refuses to die of old age. At fifteen plus, we sort of expect him to keel over at any point. He doesn't. He may be the fittest geriatric patient at the A&M Small Animal Clinic. I think the young clinicians there plot ways of keeping him going, maybe in hopes of achieving new records. He has had a range of anti-inflammatory drugs (both steroidal and non-steroidal), hydrotherapy, and of course, pain management protocols. All of which come with a price tag.

So, Willie reaching the level of our six million dollar dog seemed unlikely. Two weeks ago, Willie was his normal, irrepressible self. Despite dire predictions to the contrary, he welcomed Erin's new dog Teddy into the household, showed her the ropes, and for the first time in his life had a friend to call his own. He was happy and fulfilled.



Then he took the big fall. You know about Achilles and his heel? Samson and his hair? Baldor and mistletoe? Willie's vulnerability was his eye. He ran up to me in the yard a couple of Saturdays ago, winking. At first I thought he was practicing so he could make a move on the girl dog down the street, but nope, he just had a bit of grass stuck in his eye. I pulled it out and he seemed okay. Over the next few days he started squinting noticeably in one eye, giving us a chance to poke fun at him with new nicknames: Winky, Squint, Pop-Eye. When it started looking worse rather than better, we headed to the vet. Oops, we all felt guilty for taunting him when we learned he had an infected eye ulcer. Some antibiotic eye drops every couple of hours on Wednesday and Thursday should have done the trick, but when the vet checked on Friday (a week ago, not yesterday), he was worse not better. We re-doubled our efforts, unfortunately without progress. The next time the vet saw him, he ordered mandatory kenneling at the clinic. (I fully believe that the vet thought he was dealing with incompetent humans who would lie about treating their dog and sell the unused antibiotics on the black market for cash profit.) Three days of special care at the vets (are you seeing how we think that Willie at age two has a good start at matching Luke's lifetime expenditure record), and he was unambiguously not better. I kept wishing for a secondary market where I could sell his eye goop to offset our vet bills. Yesterday the vet told us he couldn't do anything more. He made arrangements to have Willie transferred to the A&M Small Animal Clinic. The on-call emergency room doctor triaged him quickly (do pediatric hospitals have something to learn from vet hospitals?), and Walter and I (experienced enough in the waiting game to bring journals to read and papers to grade) waited. By 2:00 we headed home, Willie in tow.

By digging around a little the ophthalmologist found a second piece of grass living under the third lid of Willie's eye. (Did I even know dogs had three eyelids: upper, lower, and third? Nope, not until recently). Here is what Willie had carried in his eye for the last two weeks (not the dime, that's just there so you can see the size of the grass and wonder how it had eluded the first vet after repeated exams).


It might not look like it from this photo, but Willie is much better now (thanks in part because Walter and I set the alarm to go off at midnight, 2:00, 4:00, and 6:00 so we could continue the every two hour administration of meds to our boy). The misery expressed so poignantly on his face is from the embarrassment of having to dress like Queen Elisabeth for a least a few more days (you can click on the photo and get a really good idea of what his eye currently looks like).


In other medical news:

In an effort to keep Erin hydrated so that she can tolerate celebrex and cyclophosphamide without ruining her kidneys, I diluted Erin's hemoglobin down pretty effectively this month. Everything else looked quite good.

WBC 4.9 K/uL (4.0-13.5)

ANC 3.3 (1.5-7.8)

HGB 10.4 g/dL (11.5-14.5)

PLT 296 K/uL (140-440)

with

BUN 21 mg/dL (5-26)

Cr 1.0 mg/dL (0.5-1.5)

AST 37 IU/L (0-40)

ALT 20 IU/L (0-40)

All the other chemistries were normal, too. That's the last (hopefully) we will see of the clinic until May 13 when we go to Houston for scans.

Dog Dandruff and John Deere

April 21, 2008

Happy San Jacinto DayI I wonder how many of you are airing out your fighting duds in preparation for joining the Sabine Volunteers in the annual reenactment of the Battle of San Jacinto.

Erin has suffered severe allergies like the rest of the Brazos Valley has lately. If you'll pardon the mental image (especially if snot is not your thing), it takes about a third of a box of Kleenex each morning to empty what has accumulated up her nose and in the crannies of her sinuses before she can make it to the breakfast table. Last night she swam at the A&M Rec Center pool as part of the festivities of her soccer club Fun Day. The pool is mildly salty. She thought it did wonders to clear her sinuses, and I'm glad she didn't get caught snorting slime into the pool. Walter and I have actually marveled at how much her allergies have flared, especially since she takes Sudafed, Claratin, and Singulair every day. I even speculated about Teddy's culpability, since Erin sleeps with her every night and might have a sensitivity to dog dander.

Anyway, Erin may be filling up her bathroom trash can and the Aggie pool, but she not letting a few little allergens slow her down. She just brought home a(nother) stellar report card, enjoyed playing in her school's recorder concert last week, finished up one big school project (she researched and wrote a Civil War newspaper with at least eight articles--I'll link it when she gets it back) and started another (she's inventing a solar-powered floating car with exercise options--I'll get back to you when I can actually explain this). About a week ago at a teacher conference, Ms. Kutzenberger told me about her plans to pick up the pace on vocabulary lessons for the class. To that end she was sitting with each student and their vocabulary book, sort of pre-testing them to see what lesson they should skip ahead to. She would pick what she thought were challenging words from each lesson, and ask the child the definitions. Erin got to Lesson 39 (out of the 42 Lessons in the book) before she missed the first one. Ms. K ordered her a new book that day. . .SAT prep vocabulary. Here are the words from Erin's first vocabulary list in that book (I can unashamedly say that I didn't know them all without looking them up.):

acidulous
avaricious
baleful
bellicose
bilious
bumptious
captious (this is one that tripped me up)
churlish
complaisant
contrite
convivial
craven (should have known this one, but oops, I didn't)
debonair (one of my favorites)
dyspeptic
lachrymose (I guessed and got it right)

Lest you think that Erin is a "know it all," let me assure you she is completely fallible on the vocabulary front. On the way to school after the conversation about Teddy and her possible contribution to Erin's allergies, Erin asked me, in a rather pathetic voice, why I accused her [Erin] of having dog dandruff. I have to admit that dandruff and dander sound similar, and in fact are similar, but she misunderstood my comment completely. After I explained what I had said and meant, she responded by saying, "Well, as long as we are on the subject of words, can you tell me what a John Deere letter is, and why it would hurt someone's feelings to get one?"

I guess there something to be said for knowing contrite and dyspeptic, but not knowing dog dander or a Dear John letter.

Speaking of vocabulary prowess, when my three-year-old niece, Emma was here a week ago, she demonstrated her own amazing command of the language. During the master naturalist party at our house she was playing on the fort in the backyard and took a tumble. Her mom ran over and picked her up, brought her back to where we were sitting, and wiped away the tears. Someone asked her if she had fallen off the swing, and she replied through a few sniffles, "No, I fell down and scraped my leg on that coarse rope over there." Coarse rope? Descriptive and uncommon adjective out of the mouth of a girl who turned three in February? Too cute.

That's it for now. Tomorrow is monthly blood labs. I'm hoping for normal, even though I know that normal is just a cycle on the washing machine.

60

April 18, 2008

Give a shout! Thanks to Wayne Allard, Republican Senator from Colorado, and Claire McCaskill, Democratic Senator from Missouri (who both signed on as co-sponsors yesterday), the number of Senate co-sponsors for the Conquer Childhood Cancer Act now stands at 60! Who says that politics has to be polarizing. Thoughtful and compassionate people from both sides of the aisle can see the merits of this bill and take a stand to cooperate. Isn't America great?

I do not know when this bill will get to the floor, but it now has enough support to pass in the Senate. And as I said yesterday, we are one supporter away from a majority in the House (although the bill is still in subcommittee as far as I know. . .come out, come out wherever you are).

This is progress.

Graduation

April 17, 2008

My first thought, when Erin handed me the color brochure explaining how I could have a beautiful photographic record of my graduate (including, at no extra charge: cap, gown, fake diploma roll, and, of course beaming smile) was how to avoid offending Erin as I said "No, I would never pay any amount of money to buy a studio-quality photo set in a memory book of a 5th grade graduation. You don't "graduate" from 5th grade. You get promoted to sixth and get on with your education. This is not an educational triumph. It is not your moment in the sun. We are not heaving a sigh of relief that you made it through elementary school." But now, the brochure is lying on my kitchen counter, not thrown away. Why? Because of the hidden message in the last sentence of my thought.

Erin is an exceptional student. She has always, and I suspect will always, make outstanding grades. Meeting graduation requirements won't ever be in question. Yet with the uncertainty of relapsed neuroblastoma and the accompanying gruesome survival statistics, graduation is never guaranteed. So, now I have to argue with myself. Do I act like a parent who does not want to be ripped off by a marketing program centered squarely on sentimentality and guilt, or do I act like a cancer parent who has no idea if Erin will ever cross another stage? Aaargh. I hate that choice.

P.S. The Conquer Childhood Cancer Act now has 217 (218 needed for a majority vote) co-sponsors in the House and 58 (60 needed to bust cloture) co-sponsors in the Senate.

P.S.S. I talked to Gina Cortez yesterday and if everything goes well, she will open Gina's Mexican Restaurant late next week. Stayed tuned.

P.S.S.S. One more thing that makes you say "hmmm." Seeing a well-dressed man walking down Dodge Street carrying a hula hoop and a bottle of beer.

Some People Walk Like That

April 14, 2008

Last week, in "The Gang" I wrote about walking down the road with my motley crew (both literally and metaphorically). Today, I'd like to show you just how "motley" motley can be (this is an example, shot last fall of who or what I walk with: left to right, niece Emma, sister Katherine, daughter Erin, and mother Madge):

You Have to Know the Rules

April 11, 2008

As I fumbled around the bedroom this morning, looking for suitable attire for a parent-teacher conference first thing, I heard Walter talking downstairs in the kitchen. It seemed unlikely that Erin was awake already, and I hadn't heard the phone ring, so I listened more closely. I heard the following one-sided conversation:

"If you you want to live peaceably in this house, Teddy, you have to know the rules. I always give Luke his medicines first. Your job is to stay out of Luke's way so that he doesn't mistake you for one of his pills and out from under my feet so I don't step on you and squash you. Then I will arrange all the bowls on the counter and fill them with dry food. . ."

Walter proceeded to explain to Teddy the exact routine he followed every morning getting the dogs fed and ready for their longer walk (which I perform, when I come downstairs) with special pointers on what Teddy's job was at each juncture. I know we all feel more confident knowing how we fit into the larger picture.

Teddy was a little behind the curve, because for her first two weeks she had been sleeping in until we rousted her for breakfast. This morning, she decided to join in the early morning dog party, and for some reason thought her very presence would shoot her to the front of the chow line. Now she knows that there is a greater scheme into which she needs to fit. As best I can tell she understood it all perfectly.

It looks like Erin will survive what has been an un-fun week. She hasn't slept well this week, mainly because of various aches and pains. She made enough progress through the week at physical therapy and with her home exercises that she lasted about an hour at soccer practice last night. She is starting to get frustrated at the slow pace of it all. I think we'll head to the park after school today, and of course, she has Tiffany's birthday slumber party tonight, so I guess the week will end less drearily than it started.

I've had some messages from people outside of Texas looking for info about how to contact their Senator or Representatives legislative aide for health directly.

Here is the e-mail convention for all Senate staffers:

If the person you are trying to e-mail is named Betty Brown and she works for Senator Beebop, you would write her at Betty_Brown@Beebop.senate.gov

Here is the e-mail convention for all Representative staffers:

If the person you are trying to e-mail is named Bobby Black, and he works for Representative Hohum, you would write him at Bobby.Black@mail.house.gov

You can call the DC office and ask the staffer's name or you can go to this link. If you enter your zip code (if your zip has more than one representative you may have to put in your more specific address) and enter, the page will return links to both of your senators and your representative. Click on the person you are interested in. On this new page you will see his or her picture. Under the picture are three buttons "bio & contact info," "send message," and "staff members." Click on "staff members" and find someone who does Health. Then you have the name you need.

Write now, right now.

The Gang

April 9, 2008

Do you remember Fat Albert and his Gang? Not the movie, released in 2004, which was live-action, but the original Saturday morning cartoon from the early 1970's.




If you watch this video clip of the show's opening theme song, you will get a little glimpse of how I have felt recently (note especially the images at the 18-20 second mark). No, I haven't reached the portly proportions of Fat Albert nor the comic genius of Bill Cosby. As a youngster, I would watch the cartoon of the Cosby gang (they were a gang, not a club, back when being a gang wasn't a life-threatening proposition) walking down the sidewalk and just marvel at their motley-ness. Their personalities showed through their gait, and even though they were each unique and also essentially flawed (think about it, their names were Weird Harold, Mush Mouth, and Dumb Donald, to name the ones I can remember), they had each other's backs and had a great time moving through life.

Fast forward to Vickie's life. Every day (usually several times a day) I head down the road with a collection of people and animals. Picture me, with Erin skipping rope, or dribbling a soccer ball, or adorning her hair and clothes with daisy chains and wildflowers she has collected from the road side. Add in Walter, usually wearing a fedora, but sometimes in a bucket hat and my mother, either nattily dressed for work or more casual in yard work duds. Now picture Willie, our two-year old Rhodesian Ridgeback, alternating between racing ahead, leaping after crickets and lizards in the tall grass, and trotting along with the group. Put Uma, our overweight Welsh corgi, into your mental image, short legs completely disproportional to her giant meatloaf shaped body, but always walking with a princess-like prance in her step. Don't forget Luke, our fifteen-year-old yellow lab, who has extreme arthritis and no cartilage left in his rear stifles (knees). He can barely get up and down the road, but he always has an eager look in his eyes and a smile on his face. Round out the picture with Teddy, who at 10 pounds with a shaved body, full-lion mane, and "C"-shaped gait, spends a great deal of time trying not to get stepped on. Sometimes we add the neighbors' weiner dog puppies for a few minutes, and sometimes a weimaraner, sleek but dumb, and her blind-in-one-eye golden retriever buddy join us.

Can you tell why I think of myself as Fat Albert or at least the leader of his gang? A motlier crew I can't imagine, nor can I imagine not having them and not loving them. It's a comic image, yet, it is that image that metaphorically captures the essence of Erin's cancer experience, and perhaps of humanity itself. None of us are perfect. None of us are whole. If we think we are, it's probably an illusion. Instead, we are made up of many others who surround us and support us. We are made up of those we share the road with. . .those willing to be in our gang. Today, I owe a thanks to all of you for being part of The Gang. Thanks for walking down the road with us, even if you're a little ahead or a little behind. . . even if you have your own pace and gait. Remember we're together, and I appreciate it.

Now, for other updates:

I wish I could tell you that Senator Hutchinson has seen the light and signed on to the Conquer Childhood Cancer Act. Not yet. I do appreciate your efforts and hope you are not too fatigued to fight on. Hans Weberling's mom, Lara, went to the effort to create a touching and powerful powerpoint presentation, which I'm sure will be convincing to anyone who views it. I guess the trick is to get someone who matters to take the time (it's only 14 slides). If you have a chance, stop by Han's website. He has just started his sixth and last round of accutane and is nearing the end of treatment. We hope, like his family does, that this will be the final chapter in his face-off with neuroblastoma.

To continue with happy news: The long weekend with Davis and his buddy and co-math major Paul Munger from Portland, Oregon went great. They both got enough to eat and enough sleep. I even caught them working math problems a couple of times. (As a side note, I posted on The Davis Report that Davis had accepted a position as a math intern at the University of Pittsburgh medical school for the summer and wondered if I had any readers from that general area who might be willing to be an emergency contact for him this summer, May 19-July 25. I'm also looking for a similar person or persons in Budapest, Hungary for the fall when he studies abroad, but I'm guessing that's a long shot.)

Erin kept it pretty low key all weekend (forced into a lower key than desired, by her mother, who is trying to create ideal conditions for back healing. This included nixed plans for ice skating at her friend Andy's birthday party. Drat!) She did some rather impressive art for Davis and Paul to take back to their dorms. When I say impressive what I mean is that she used every single marker she owns in each of the 2 ft X 2 ft pieces. I didn't count how many markers she used, but when she laid them out (side by side, not end to end), they stretched across her entire room (I'm guessing about ten feet, maybe twelve).

We culminated the weekend with an outing to the Texas A&M baseball game, where Erin and the other members of the Bryan Honor Choir sang the national anthem. We didn't stay the whole game because we also wanted to take Davis out to dinner for his birthday. We momentarily thought we had made a bad logistical choice of restaurants, since A&M's biggest formal was Saturday night and a generous portion of the couples appeared to have chosen Cenare's as their pre-dance eatery. Luckily, we had a great server, who got our orders through and we didn't end up starving while we waited for our food to clear the kitchen congestion.

Unfortunately, whatever gain we made on Erin's back by avoiding ice skating were undone yesterday, when Erin had to stay seated at her desk most of the day for TAKS testing. No PE. No recess. By the time she got home her back was cramping and grabbing. Kelli, the physical therapist, gave her some pain relief with wet heat, a deep message, and some light stretches, but not enough to clear her for soccer practice last night. With South Texas Cup play approaching on the first weekend of May, Erin rues every moment that she has to sit out (and Erin's parents rue every moment, even the simplest soccer practice, that cancer robs her of).

This weekend promises to be an upbeat one. Aunt Kat and Emma are coming back, even though they just visited. Our mom is hosting a party for her master naturalist group. On Sunday, Erin has her spring piano recital.

Looking for Action

April 2, 2008

Erin fans,

It's time for another big push on the Conquer Childhood Cancer Act (I put this link in so that you can see exactly what I'm asking you to support). I need you, but it's not the same old, same old. I have a new page for the play book.

Here's the background:

We now have the support of 58 of the 60 Senators we need to get a vote on the Conquer Childhood Cancer Act. You can check here to see if both your state's Senators have signed on. If you are from Texas, don't bother. Senator Hutchison is not there. . .yet. We also have 212 (need 218) Representatives signed on. Doesn't this just FEEL so close?

Anyway, you can use the traditional way of contacting the members directly. Here are a pair of links to the CureSearch website that will help you with some text (and addresses, of course) if you are at a loss for words:

To your Representative
To your Senator

Or you can try to by-pass the Congressional email system which often is automated or staffed by lower level employees who may only record a check on an issue for or against, generate an appropriate form letter response, and send your well-thoughtout missive to the recycle bin rather than alerting your Congress person about your preferences.

For Texans I recommend contacting Senator Kay Bailey Hutchison's legislative aide for health issues. She is Cameron Krier. She is relatively new, but I have some evidence that she "gets it" with regard to this passion of mine. You could also call the Senator's office in DC at 202-224-5922 and ask to speak to her directly.

If you are not from Texas, you could probably find your senator's legislative aide for health on their official web page. If not, call the office and ask who it is. These people are very influential with their Senators because they do the research and make recommendations to their bosses.

Here is why I am hopeful that a new effort on our part might do some good. Senator Hutchison is working with Senator Ted Kennedy to write a big cancer bill and she has recently (3/7) signed on as a co-sponsor of a breast cancer bill, Breast Cancer and Environmental Research Act of 2007, S579 that is very similar to the Conquer Childhood Cancer Act and is in the same position as ours (it has been approved by the HELP Committee). That’s actually the strongest argument to getting her to co-sponsor the Conquer Childhood Cancer Act, if breast cancer, why not children? (The cynic in me says that they are not the same because people with breasts and those who love people with breasts can vote and children can't, but I'm trying to shake that view and give her a chance to do the right thing.)

Let's push this over the edge. Call or write KBH or do what I did, write Cameron Krier. Tell her how important it is. I want to be doing the celebration dance by next week!

I'm leaving you with one more link. I found this when I was trying to building a coherent letter to Ms. Krier. Its a 2006 article about why childhood cancer drug development needs more help. Very interesting (and easy to read).

By the way, here is what I wrote:

Dear Ms. Krier,

I understand that you are the current LA for health issues for Senator Hutchison and as such would be the most informed person on her staff to consider the merits of S. 911—the Conquer Childhood Cancer Act. This bill, proposed jointly last year by Senator Jack Reed and Senator Norm Coleman, passed out of the HELP committee without amendment in December and has garnered the support of 58 Senate co-sponsors. It proposes to amend the Public Health Service Act to advance medical research and treatments into pediatric cancer and authorizes $30 million annually for five years.

There are both rational and emotional reasons to support this bill. Most childhood cancers arise without warning and seemingly without cause. Most can't be predicted or prevented. The cruel hand of fate regularly reaches down and taps families on the shoulder from all walks of life: It has visited the families of bankers and builders, farmers and financial traders, doctors and deliverymen, teachers and lawyers, and so many others. There is so much left to learn and so many lives to save. Unfortunately, pharmaceutical companies don't see much chance for profit with children, and most private fund raising for cancer (think American Cancer Society, Lance Armstrong Foundation, or even the Susan Komen Breast Cancer Foundation) overlooks children almost entirely. This leaves two options for raising research dollars: grieving and stressed parents and our elected officials.

One amazing thing that the Senator may not know about pediatric cancer care in this country is that children and their parents overwhelmingly elect to participate in scientific cancer trials as part or all of their treatment. This contrasts with fewer than 3% of adults with cancer who choose clinical trials as part of their treatment plans. With the vast majority of children with cancer participating in clinical trials, progress towards more effective treatment can be more systematic, leading to more lives saved and fewer negative long-term effects for survivors. Unfortunately, funding for clinical trials has remained steady or even dropped over the last several years, making it more difficult for children to take advantage of the latest scientific breakthroughs. And, as I mentioned before, the smaller market size (and thus, the profit potential) for developing and testing drugs for children does not meet the ROI requirements for most private drug companies.

Some might argue that children can benefit from investments made to treat adult cancers. There are many weaknesses in this argument, including the fact that many children’s cancers are different than adult cancers on a phenotypic and molecular level. Beyond that, they behave differently, suggesting that treatment paths may need to follow different routes. Even for children’s cancers that may be amenable to treatments developed for adult cancers, problems exist making those treatments available for children. Of the 120 new cancer therapies for adults approved by the FDA between 1948 and January 2003, only 30 have shown use in children. Of those 30 drugs, only 15 acquired any labeling for pediatric use during that same 55-year period. I am aware of only 2 new drugs approved for pediatric oncology only in my lifetime. (If you are interested in learning more about problems with pediatric cancer drug development, I encourage you to following this link to a 2006 article in Molecular Cancer Therapeutics.)

I believe strongly in the ingenuity of our scientists and researchers to solve the health problems facing Americans. I just don’t believe our children show up on the radar often enough. My own child has fought cancer for half her ten-year-old life. There is no cure for her disease, relapsed neuroblastoma. She depends on drugs developed for adults three or four decades ago to keep her tumors at bay. Despite her cruel prognosis, she attacks and relishes life in ways that I wish you could witness. If you saw the way Erin and other cancer children live their lives, you could not possibly let Senator Hutchison stand on the sideline in this battle. Erin wrote her own letter to the Senator a few weeks ago. I think you can sense how important this issue is to us.

Thank you for weighing the merits of this bill. I hope you can recommend that the Senator sign on as a co-sponsor to this bill. Please allow me to address any further questions you may have about the bill or the need it fills.

Sincerely,

Vickie Buenger

(979) 820-1755

http://erinbuenger.blogspot.com

The Worm Whisperer

March 31, 2008

Addendum: This photo appeared in the local paper this morning. While you can't really tell by looking this is Erin, Nico, and Company singing Supercalifragilisticexpialidocious at the Bryan Honor Choir concert last night. I'll bet you didn't know that song had hand jive that is "must do" when singing it. Don't you wish you got to have as much fun as these children?



I don't really have much to post, but when Erin jumped in the car after school and announced that her classmates called her The Worm Whisperer, I knew I needed to borrow that catchy title. In science, the class is raising moths from caterpillars. Each student was issued a tiny little "worm." Erin named hers Indy, after Indiana Jones. They have grown prodigiously, and Indy is now three centimeters. Most of the other children don't have much affection for their caterpillars, but Erin takes hers out and lets it crawl around on her hand. She told me she had the most beautiful caterpillar in the class--tiny red spots and the lightest coloring of any of them. She has taken to exercising her classmates "worms" for them. She is convinced that they like her, especially Indy, "who really seems to appreciate the attention." Have you stopped laughing yet? Can you tell why we let her buy Teddy? It was that or a room full of less tame critters, waiting for Erin's love.

On the Teddy front, things have continued to go better than we expected. I keep expecting someone in the household to break her, since she only weighs 9.9 pounds. So far, she has good instinct about staying out from under foot and paw. Davis is headed home for a late semester break on Wednesday, and I doubt he is inclined to love Teddy. She does have an interesting flaw(?) that I think developed from her spending so much time at the animal shelter before finding her way to our house. Like any lapdog worth her salt, she can curl herself into a tight, little ball. Unfortunately, it's tough to get uncurled. She runs shaped like the letter "C" and we have taken to calling her sidewinder in those moments when she hasn't straightened out. Hopefully, Erin can help her with some stretches and strengthening (this sounds like a repeating theme at the Buenger household), to straighten out her spine. On second thought, maybe Teddy is just so in sync with Erin that she has invented a back problem out of sympathy.

Teddy has also proved quite helpful with gardening. No matter how long it takes, she is willing to sit in the shade by the person weeding, giving them emotional support. While I am still woefully behind in getting all the beds cleaned, I have taken inspiration to soldier on.

I did want to take time to post this cute pic of Erin and my delightful niece Emma, who brought her mother down for a visit this weekend. The visit, as always, was much too short, but as luck would have it, they will return in a couple of week's for my mother's Nasty Maturalist (Master Naturalist) spring party here at the lake (which explains my diabolical focus on getting the yard into shape).


I have to fly now. Erin has her Honor Choir concert in about thirty minutes and if I don't leave right now, I will not get a good seat.