Out of the Car

June 16, 2008

Today is my Mother's Birthday. Luckily, I live next door to her and don't have to make heroic efforts to see her, spend time with her, or ask favors from her. The favor today? Will you join me for lunch?

Happy Birthday Mom!

I'm positive lunch will go well. . .if I can unfold myself to walk into the restaurant. For all I know, I'm permanently set in the position I have assumed for most of the last week: knees bent at a 110 degree angle, waist bent in the opposite direction at about the same angle, both arms extended in front of me shoulder high. Here's what it looks like (the model below is simulating my posture):

With Erin at Mo Ranch, I definitely have the opportunity to get out of the car. We delivered her yesterday, and how can I say this politely? She nudged us out of the dorm after just one goodbye hug and ran off to make a name necklace with her new best friends. Be gone my worries over whether she is the right age and/or independent enough for overnight camp.

She and I had chatted (a lot) about what camp would be like--the food, the campers, the counselors, the activities. One of the last topics I had visited was her hair. What would she do if the IV Rhino caused more hair loss than the oral version she had last cycle? What would she do if her hair started falling out at camp? She reassured me. If it started thinning, she'd just wear a ponytail and a hat. If it came out in noticeable amounts, she would just invite the other campers outside for a "hair-pulling party," so they wouldn't make a mess in the cabin.

I think there is still time to get a birthday card there by Friday:

Erin Buenger
c/o Mo Ranch Summer Camp
2229 FM 1340
Hunt, TX 78024-3037

But if you are a procrastinator, you can send her an e-mail greeting by addressing it to:

summercamps@moranch.com

With the SUBJECT line: Erin Buenger

In a bow to the modern parent, camps like Mo Ranch have set up the camp equivalent to NannyCam. No we can't watch camp like its a reality show, but the staff does post photos everyday to show that the children are having fun and are not starving. Erin showed up in a few of the first day photos. Here's one where you can actually tell that it is her. The rest showed various children that might be her embedded in a group of fifteen kids wearing white t-shirts, backs to the camera, taking part in some energizer or group game. If you want to play the game "Where's Erin?" you can go to http://www.moranch.com/index.php?c=8, click on Login [username: summer08 & password: session2].

I do have quite a bit of catching up to do after last week, including a set of essays to grade and a boatload of email and phone messages to answer, but I wanted to leave you with something on the drive west that made me say hmmm, twice.

We stopped for gas and a bathroom break in Johnson City (birthplace of President Lyndon Johnson, and named Johnson City for someone or another in his family, long before he ever became famous). Anyway, while I sat baking in the summer sun, waiting for Walter and Erin, a noticed a hitchhiker standing roadside opposite me, wearing a big, white cowboy hat AND holding an even bigger, white cowboy hat. That made me say hmmm to myself and wander a bit to my right to get a better gawk. I still couldn't figure out why a guy would need two cowboy hats. Then, I looked back to my left and said hmmm a second time. A couple of guys on my side of the road had set up a tripod and an official-sized (not tourista-sized) camera and had the two-hat guy in their sight.

Conquer Childhood Cancer Act Passed!!!!

June 12, 2008

The U.S. House of Representatives UNANIMOUSLY passed the Conquer Childhood Cancer Act (now called the Caroline Pryce Walker Conquer Childhood Cancer Act) today with 416 positive votes (as if anyone in Congress would have the huevos to vote against cancer kids). Thank you for the over 20,000 letters, faxes, and e-mails you have sent that helped sway your representatives. Hopefully, the Senate will follow suit soon, and of course, that the President will sign the bill into law. When those two things happen, we will have a new mission. We must once again return to full action to get appropriations to support the bill.

Erin and I are already back in town. Days three and four went as scripted and we're set to go sledding tonight (for those of you trying to figure out Texas geography, A&M has a ski mountain with artificial turf where they teaching skiing as a PE class and let locals schedule sledding parties. Once you get over the idea of sledding on damp, green plastic grass, you can have a great time). Erin will do physical therapy in the pool while I teach tomorrow, then we will depart for the final day of chemo with our friends Tonie and Janice Sahm (her real name not just a pseudonym for stay-at-home-mom). The IV version of irinotecan has required more zofran for stomach upset, but less imodium (actually no imodium) for diahrrea.

Hump Day

June 11, 2008

I overheard Erin talking to Davis on the phone yesterday. Her side of the conversation went something like:

"Hey, Davis. . .

Yeah. We're headed home. . .

Already on the HOV lane. . .

Yeah. We are two hours earlier today than yesterday. . .

Yeah. We were the last ones left yesterday. . .

I don't know. I just took six hours to do something that was supposed to take about an hour or two. Today it only took about three and a half hours. . .

What? What does a dog do that a man steps in? Poop?. . .

[Laughing a belly laugh] Oh I get it. Pants. . .

Another one?. . .

I don't know what a man does standing up, a woman does sitting down, and a dog does on three legs. Maybe pee?. . .

Shake hands. I don't get it. . .

[Laughing more now] Oh. I get it now. Do you want to talk to mom? Okay. She'll talk to you later then. Bye."

Brothers and sisters. I can't explain them.

Anyway. Erin and I have had a successful week for the most part (other than the delays. . .unfortunately the patient load at Texas Children just gets larger and larger, so there are always unanticipated bottlenecks.) We were really lucky to have Jesse and his mom go with us on Monday and Jackson to travel with us on Tuesday.

Erin made the command decision to let me take her IV out last night so she and Jackson could get a couple of hours of swimming in after we got back to Bryan. I was really pretty surprised, since it took three tries and a whole lot of wailing to get it in on Monday. It turned out to be a most excellent decision, since her best-beloved IV placer was back today and hit the vein on the first try with no problems (other than waiting an hour and twenty-six minutes--but who's counting?-- for our turn).

We are treating ourselves for hump day and will spend the night at the Marriott and catch the new Indy Jones movie this evening. This ought to give us a head start on our infusion tomorrow and put us back to town fairly early. That will leave one more round trip before a two week break.

Erin will celebrate her eleventh birthday a week from Friday (on the 20th). If you would like to send her a birthday card or post card, you can mail it to:

Erin Buenger
c/o Mo Ranch Summer Camp
2229 FM 1340
Hunt, TX 78024-3037

It takes a long time for mail to get that deep into west Texas, so the earlier you put it into the mail (even tomorrow) the better.

There Is No Finish Line

June 8, 2008

Erin and I just finished cleaning out the van so we can live in it this week. My job included stowing all the soccer gear: three sports bags (one for my equipment, one for the team that holds the precious information notebook and the even more precious first aid kit, and one with extra gear so that Mystic forgetfulness never becomes Emergency Forgetfulness), Walter's spectator chair, and from last week, all the tryout and registrar detritus. My shed no longer has room to turn around in, but the back of my van is blissfully empty (this happens twice a year. . .during the June and December hiatuses). Erin had a larger responsibility: clearing out all the stuff that she has left scattered about in every row and all of the more than generous storage compartments supplied by the Chrysler company over the last month when she has been too busy or too tired to clear the deck.

I've had a lot on my mind the last week. Summer school is in full force (and yes, I have essays to finish grading before tomorrow morning at 8:00). I spent from 5:00-9:00 at Central Park (not new York) Monday, Tuesday, Wednesday, and Thursday discharging my interim registrar duties and laughing it up with a delightful group of volunteers that make youth competitive soccer in our community possible. Erin had Music Camp every morning, Credit by Exams, piano lessons, physical therapy, friends over, visit to friends houses, horseback riding, and of course two nights of soccer tryouts.

Sounds normal by Erin Buenger standards, doesn't it?

That's what's been on my mind. This week has seemed blissful. No constant checking about the need for ____________ (fill in the blank with imodium, tylenol, zofran, hydration or your own personal favorite). No monitoring of energy level or appetite. No wondering what's happening with counts (they're stable and good) or with hair (none falling out). We even think the chemo must have shrunk the tumor because of the relieved pain and pressure in her back. My worriometer has stopped clicking like a geiger counter in the nuclear medicine ward.

Will Lacey's dad wrote around this topic recently. Will's chemo regimen gives him fourteen good (blissful) days for every seven bad days. Here is how Pat put it on Friday when they began the 18th cycle of bad days in the last year:

He (Will) is suffering and he doesn't know why.

But I know why.

He suddenly feels awful because I just gave him 4ml of liquid in a syringe 45 minutes ago. And I didn't tell him what it was, what it was for, and that is the reason he feels terrible.

Because then he wouldn't take it.

These are all things that you accept because it takes place for 7 out of every 21 days and that is the price HE pays in order to stay alive.

That is the cost of having the 14 other days where he can enjoy life as himself.

The hard part for me is that he is unable to communicate to us what he is feeling simply because he is 3 years old.

He is alive.

He does not have to go inpatient, or even outpatient for his treatment.

His counts don't drop.

His hair doesn't fall out.

We don't have to give him shots every day.

As far as quality of life goes as it pertains to relapsed neuroblastoma we have it pretty good. It is just some days like today when the opposite ends of the spectrum are seen...so soon after making your son "take his medicine"....it can be a little bit jarring on your parental senses.

I have thought long and hard about this, and I have something to add. Just like Pat, I'm glad that The Rhino has been as easy as it has been. I'm glad that it seems to be working. I'm glad Erin has great days. It's a whole lot easier than at diagnosis when we would check her into the hospital and chemo drips would run twenty-four hours a day. We lived in the clean zone, protecting her from infections and other bugs that could lay her low. We signed informed consent forms virtually guaranteeing hearing loss, sterility, and organ failure. Everything we encountered was new and frightening.

But in some ways our situation now is much, much harder. When we started this game in July 2002 Erin's doctor handed us a road map that outlined the steps we would take to get Erin cancer free. We knew the process and approximately how long it would take. Because there was an endpoint, I could treat it like a project. I teach project management. Projects start. They end. They attempt to accomplish specific objectives. You manage them to completion. You may encounter set backs, but you re-group and keeping working towards the goal. That's what we did, and we did it well.

Now, here in relapseland, particularly in tumor progression relapseland, the bliss is all temporally finite. We start chemo again tomorrow. We hope to continue starting chemo every three weeks for a long time. The only obvious end points are set by more disease progression, unacceptable chemo toxicity, or a switch to some other treatment option (which we hope would be effective, but yield more good days).

We hope that the bad days aren't too bad and that the good ones are blissful. We hope to keep fooling ourselves that we have the energy and stamina and good luck to make it. That scientists can move fast enough to build the silver bullet that stops neuroblastoma in its tracks. That Erin's body and spirit stays strong. That Erin's tumor stays stupid and easily managed. That there enough good days to make the bad days tolerable.

We now live with more urgency and passion, and unexpectedly, much more calmness and certainty. I read it on a Nike poster in the gym: There Is No Finish Line.

Recreational Infusions

June 4, 2008

My back feels better these days, but I notice I'm in the bathroom more frequently. And my appetite has dwindled. I'm definitely tireder.

It makes no logical sense, but just like husbands who experience sympathetic pregnancies with the resulting weight gain and food cravings, I think I have sympathetic neuroblastoma. All Erin has to do is mention a symptom or side effect, and I start channeling it. Not, of course, to the extent that Erin experiences it. Still, when her back hurt a lot this spring, I found that I would switch the seat warmer on in the driver's seat when I ferried her around town, just to help my achy back. And since she started irinotecan and temador, my back feels better, but my digestive track has suffered. I can't explain it, but as a mother, I just wish it were as easy as me taking over the pain, the digestive upset, the trauma of it all.

I do have to report on soccer tryouts: Erin played harder for longer than she has since spring break. At a water break about half way through tryouts, she came over and asked me for one of those "melt-in-your-mouth tablets" (zofran) because she thought she was going to throw up. I looked at her and considered pulling her off the field. Instead, I reached into my purse and handed her one. We exchanged a look. Without saying a word, she and I both had decided that she felt that way because it was 95 degrees with full humidity, she was out of playing shape, and she was working hard (I suspect everyone there was about to throw up). The zofran was the compromise she was willing to make to keep going. She finished out the session and rewarded herself by watching a couple of episodes of Star Trek Next Generation on television. I don't know if the trainers recognize that the fierce determination that gets her through treatment and has let her face cancer down for the last six years is exactly the determination they need their players to have. I hope it shines through, because on size and stamina alone, she might not measure up.

Clinic yesterday was a breeze, except that the staff has a new computer system that no one really understands. That's why Dr. Russell needed help to write Erin's prescriptions; that's why I had to take a phone survey that began "has your son ever had a CT scan before?" before I could get this month's scans scheduled (I guess doing scans every two or three months for six years doesn't excuse you from anything); that's also why it took an inordinate amount of time to schedule Erin's next appointment (see below). Oh well, none of that really mattered. Erin's counts can back stronger than I expected and about the same as last week:

HGB 9.5
WBC 4900
ANC 3400
PLT 395,000

She had gained the kilo back she had lost earlier last month and perhaps grown a half centimeter. This is the off week and we're set to start the second cycle of the Rhino next week.

Unfortunately (don't you hate paragraphs that start with unfortunately?), Dr. Russell nixed the idea that Erin could take week two of chemo at camp or forgo the second week or delay the second week. This turned Erin into a storm of gloom. Months ago, Erin had organized her summer around Mo Ranch. This was her first overnight camp opportunity, scheduled to encompass her birthday. It was the only firm plan she had. Everything else, in her mind was negotiable. Mo Ranch wasn't.

I guess the good news is that you can take the Rhino two ways: at home for two consecutive weeks or at clinic as an infusion for one week. So, next week, I'm going to teach each morning, then stow Erin, drive the two hours to Houston, let the nurses drip some toxic chemicals into her bloodstream, drive home, sleep, and re-start the cycle. I'm going to consider it a set of recreational infusions (with apologies to Spencer Dolling, who coined the term recreational transfusion for all those times he took a Friday blood or platelet transfusion even when he hadn't quite bottomed out so that he would be ready for a weekend of fun). We'll pack the chemo into one week, so Erin can move unfettered into week two and the healing powers of Mo Ranch. Let me know if you would like to join us for one of our daily outings.

School's Out for Summer

June 2, 2008

I found myself thinking about Alice Cooper over the weekend. Not that I ever cared too much for his music (or cosmetic choices), but who among you of a certain age can ever let the end of the school year pass without channeling his [excerpted] lyrics:

School's out for summer
School's out forever

No more pencils
No more books
No more teacher's dirty looks

Erin brought the end of her own school year (an incidentally her entire elementary experience) to a close in true "Erin Style." Between Erin and Davis, the Buenger family has had a close association with Mary Branch Elementary for fifteen years. How could we afford to thank everyone who had influenced, cared for, nurtured (and in some instances) provided some needed smack down? Truman's Chocolates, of course (I recommend a little side trip to this link. You can roll your cursor over each piece of chocolate, see what it is, and imagine yourself savoring it). Really, who can resist giving art, tasty art as a gift? Erin and I ordered 32 small boxes of Truman's to pass out to everyone who had anything to do with our family over the last decade and a half. This included cafeteria ladies, custodians, secretaries, teachers, the nurse (of course), and practically anyone who had smiled at Erin or Davis or made their days. She really enjoyed passing out the goodies and hearing the wows and woohoos that came along with the thank you hugs.

Erin continued the race to the end of school by garnering a number of small recognitions (a math award, good grades award, etc.) and doing some of the introductions at the graduation ceremony. Both she and the person responsible for reminding her (note bene: not her parental units) forgot to take her scripted comments to the ceremony. Unfortunately, the teleprompter was also on the fritz. Thus, she winged it. . . successfully, of course. No problem for the next president of the United States.


The ceremony rolled into the reception with much hugging and many goodbyes (mostly to people we are destined to see over and over again over the next days, weeks, and years). We then took an impromptu lunch with many of our friends and ended the day with a grade-wide pool party.

Erin has hit the pool or lake every day since.

We ended the second week of chemo early on Saturday morning (week two requires a little less coordination because the Rhino is served sans Temador). I have to say that irinotecan/temador is more trouble to administer and has a few more niggling side effects than popping the cyclophosphomide tablet with the breakfast vitamin every morning. Erin has taken Imodium every other day or so, but usually only one dose. I wish the rest of the time wase normal, but in fact, she seems to have to pass through a constipation stage before she can get to diarrhea. Intermittently, she actually has normal digestion. I think she prefers the diarrhea to the constipation because of the accompanying stomach pain and bloating. When she has a lot to do, she doesn't notice the discomfort of either end of the spectrum, but if I slow down the party to get her some rest, she really focuses on it. What to do? Keep the party rolling.

Today she headed out to First Pres Music Camp for the morning, followed by PT at 2:00, and tryouts for next year's Mystic team at 6:00. Tomorrow, she'll do a short day at camp, then we load up for a quick trip to clinic in Houston. Wednesday is more camp and more tryouts with a Credit by Exam test for 6th grade Science sandwiched in between. Thursday will be an easy day, just camp and Credit by Exam testing. . .oh and playing with her buddy Jackson Ross afterwards. Friday is just camp, plus the Camp finale performance. Maybe it will be enough to keep her mind off her digestion.

Week One Done

May 27, 3008

I had intended to call this post "Week 1 in the Can" because I assumed Erin would spend more time in the bathroom than she actually did. As it was, she had an hour of diarrhea last Thursday and two other moments that we cut off with Imodium before she ever reached the State of Diarrhea. The rest of the time was "Normal. Full Speed Ahead." No nausea either. What I have noticed (for anyone who may be considering adopting The Rhino into their own household) is that Erin's energy pattern and eating habits have done some time shifting. She used to eat most heavily at breakfast and dinner and go pretty lightly at lunch (no criticism intended of her school cafeteria). Now she eats about the same at breakfast, pretty heartily at lunch and after school. If I wait too long on dinner, however, I have to toss most of it out. By about 8:00, her motor slows down considerably. We'll see if that pattern holds this evening. We have an event with Chet and Lea Ann Edwards that doesn't start until 7:00. She's resting now so she can keep the party going.

I didn't have any idea what to expect when we had counts done today. Surprisingly, she posted decent numbers:

HGB 9.4
WBC 5200
ANC 3920
PLT 376,000

As usual, Erin's hemoglobin is the least robust of her blood numbers and almost two points lower than two weeks ago. The chemistries were still pending when we got the signal that we could hit the highway. Not needing to hear that message twice, headed out, leaving instructions to let us know if anything fell out of range. No calls so far. We didn't see Dr. Russell today, who had some days off coming, but Dr. Murali seemed quite pleased that Erin is not longer taking anything, including plain old tylenol, for pain. He may have been pleased, but I have been virtually ecstatic for the past two pain-reliever-free days.

The Mystic '97 didn't pass on to the Houston Open semis, but the last two weekends have shown much improved play and great promise for next season. Erin has tryouts next week for next year's team, then we (the team, not just the Buengers) will take a month-long hiatus from practice. We managed to double up on Memorial Day cook-outs, spending Sunday evening with Erin's good buddy Jesse and his family and their delicious ribs and Monday at the Burchill's pool with Nico and Co., the Foote Clan, and hamburgers and hot dogs.

We checked blue bird boxes yesterday morning, and believe it or not, those mama and papa bluebirds are still getting after it on the egg laying/chick raising front. My mom's friend Manuelita took this photo of Erin and also the one after of our bird friend (blue heron). If you look carefully you can see that she also caught two bluebirds in the same frame (on top of the kickback goal).

Quickie

May 24, 2008

I'm on a public computer at the Courtyard Marriott, but didn't want to leave you hanging. Erin finished the first five days of The Rhino with practically no problems (I can report one hour of diarrhea and discomfort on Thursday evening, brought to heel by Imodium, but so far that's it.). We get a two day break on the setting-the-alarm-to-give-meds routine and then do irinotecan alone next week (no temador). We'll see how the counts hold when we go to Houston on Tuesday.

Nothing wrong with my van that $1100 wouldn't fix, so I have new valve springs, a re-compressed valve, and thrown in for fun, new brakes. Hey if you want to go, you have to be able to stop.

The Mystic '97 have played at a high level this weekend, but have ended up with two ties. Given the evenness of the talent pool, we are still vying for a spot in the semi-finals. For Erin fans, you will be excited to know that we believe the chemo has helped. I actually saw Erin running the field, filling her lane, with her old stride and pace this morning. You can not imagine how that makes Walter and I feel.

Wild Life

May 22, 2008

The Wild Life--Part 1

Willie tried his hardest to entertain us at dinner last night. He played rope toy with Teddy, and although she never actually became airborne, he did swing her around impressively. He also attempted to break the sound barrier while running circles in the living room, but left us contemplating a quick trip to the vet as he failed to reach Mach 1. (Really, why tolerate a dog like Willie if he can't even create a good sonic boom at mealtime?) Finally, near the end of dinner right before Erin started on her evening pill swallowing extravaganza, he settled down with what looked like a tasty stick or perhaps a purloined bit of table scrap. The look on his face and his seriousness of purpose said it all: "How much delight would my audience have with a mere stick? Wouldn't a smallish lizard, entrails exposed, create a much bigger sensation?"

I wrestled the lizard corpse away from him and settled back down to keep Erin company as she popped pills.

Erin: "The tail."

Mom: "What tail?"

Erin: "The tail."

Mom: "What tail?"

Erin (more loudly): "THE TAIL."

Mom (no glasses) scans the floor: "Walter, I don't see a tail, but Erin thinks she sees one."

Dad (walking to the spot, napkin in hand): "Oh, that's just a leaf."

Erin (insistently stomping over to the spot and pointing): "The black and green and brown thing, right there! That tail."

Dad: "Got it."

Erin (returning to the table): "Pass my pills."

The Wild Life--Part 2

Our neighbor, Ed, doesn't like animals. No pets at his house. No fondness for other folks' pets. No kind pat on the head for Luke. No kind word for Teddy or Uma. Needless to say, Willie is an abomination. He wanted no part of the matter when Baby Bun took up residence under his propane tank.

Perhaps the goat that jumped through his (closed) bedroom window yesterday morning didn't get the memo.

Across the fence from our neighborhood, a new family has taken up residence. They brought with them a few children and four assorted goats. Willie found the goats the first morning after their arrival and immediately took it upon himself to provide them with aerobic exercise, extreme aerobic exercise. Since then, the poor boy has not left the house unleashed. I'm not exactly sure what happened yesterday morning. I just know that it didn't involve Willie.

I think one of the goats found a way through the sieve-like fence meant to contain them and was shopping the neighborhood, sampling the various garden offerings. I suspect that Jade (weimaraner) and Buster (golden retriever) caught a whiff of goat and offered to escort her home. Startled by their friendly offer, she may have dashed toward Ed's bedroom window, much like the birds in the Windex commercial. Jade's owner was fairly certain that she had not contributed to the incident by chasing the goat, although the goat hair in Jade's mouth may suggest otherwise.

The deputy came out and assessed the situation. He told Ed that you have to expect these things when you live in the country. He then loaded the goat into the back of the cruiser and took her home.

The Wild Life--Part 3

No story. Just two photos of the wild life in the country. The first is a bee clan that set up shop in the water meter. (You got to feel sorry for the meter reader. We had a apiary come out and move the bees to a bee box. Luckily, they were not Africanized. Unfortunately for the meter reader, the poison ivy remains.) The second is a stalk of bamboo that grew up through a pair of bags of pine bark mulch. We moved one of the bags to take this picture, but this Japanese-style grass poked through them both like a spear and just kept growing.



Now, on with the stuff you visit for: an Erin update.

Erin does not have diarrhea yet. In fact, as of 8:00 this morning she is still tending the other way. Increasing gas production gives us hope that we will have a break through, so to speak, soon. The lack of movement doesn't appear to have made her uncomfortable. I have given her zofran as a pre-med for the chemo and so far no nausea or vomiting, but her appetite is not as hearty as usual. She slept soundly through the night both Tuesday and Wednesday and had a romping good time at school.

Giving temador and irinotecan has gone remarkably smoothly. I get up and give the zofran at 5:00 and go back to bed. Walter gives her the four temador capsules about twenty minutes later. At 6:20, I slip her the irinotecan with a cranberry juice chaser. Erin just sits up each time, downs the meds, and snuggles back under the covers. She's back sawing z's before we leave the room. We had considered pursuing an alternative delivery systems, like repackaging the irinotecan into empty gel caps each morning. So far we're holding off. Erin doesn't protest taking the Rhino. She doesn't even grimace when she swallows. This is a big relief.

Erin refused tylenol at breakfast both yesterday and this morning and headed out to school. I checked on her around noon yesterday and had to talk her into taking tylenol. I'm not really sure that the chemo has worked this fast to relieve the pressure on her spine, but she's definitely more comfortable. We swam for an hour after school yesterday before PT.

Yesterday I called Erin's nurse to ask if we could deviate from the protocol by serving the irinotecan with Cranberry Pomegranate. We used to serve Erin's accutane with blueberry yogurt, forever ruining Erin's taste for blueberry yogurt. I figured if she was going to develop an aversion to something by associating it with irinotecan, CranPomegranate was a better choice than CranGrape or even regular cranberry juice.

While I had the nurse on the phone, I mentioned that Erin was having such an easy time with the irinotecan, which I was barely covering with juice, that maybe I should just squirt the 3.2 milliliters straight into her mouth and down her throat, thus guaranteeing no spillage or leftover Rhino in the Dixie cup. The nurse advised against it.

Nurse: "That stuff really tastes nasty. I doubt she would drink it."

Mom: "How bad could it be? I can't imagine the small amount of juice I'm using would do much to mask the taste if it were horrendous."

Nurse: "Really nasty. I wouldn't recommend giving it without juice."

Mom: "I think I'll taste a drop just to see how bad it is."

Nurse (practically screeching into the phone): "No! Don't do that! Don't you know that stuff is toxic?"

Mom (to herself): "I can squirt 3.2 mls into Erin every morning, but can't take a drop on my tongue to see what it tastes like?"

So, my van's still in the shop. The tow truck dragged it in Tuesday evening. The mechanic called Wednesday morning. I had lost all compression in one of the cylinders. Not good. The spring on the valve had broken. He's going to replace the spring and see how much I damaged the cylinder before I got the car off the road and stopped. If I'm lucky it's not ruined. My luck has not run so well lately. Until then, I'll drive Davis's van. He doesn't need it. He has a Pittsburgh bus pass. I think those busses are air conditioned. Davis's van isn't.

98 Degrees in the Shade

May 20, 2008

I won't give you the blow by blow (I'm lying. I really will give you the details), but I will say that even though my van broke down between Navasota and College Station on that very dangerous stretch of Highway 6

• exactly where there have been numerous fatal accidents in the last few years,
  
• during rush hour,
  
• right where the traffic speeds up anticipating the speed limit bumping up from 55 mph to 70,
  
• when the outdoor thermometer wavered between 98 and 99 degrees

our day went better than I expected.

Erin started the day at 4:00 this morning with complaints that back pain woke her. She couldn't get comfortable. In addition, the new antibiotic (Vantan) meant to control any diarrhea that irinotecan might generate and the tylenol with codeine I had given her for back pain had clogged up her system and left her constipated and straining to get comfortable. On top of that she started gagging and vomiting (possibly in anticipation of taking nasty oral medicine later in the day, but maybe because she had a bug. I didn't know. What I did know was that if she vomited she couldn't keep down pain medicine or chemo.). Her well of cooperation had run pretty dry, even before we finally got to clinic.

Dr. Russell saw beyond the obvious negatives of Erin's situation to hone in on an explanation I hadn't thought of: tumor growth could explain Erin's deteriorated condition this morning. She sent us for an x-ray (during the x-ray I didn't even know enough to be worried. I just thought she was looking to see if Erin's poop was backed up). The x-ray came back perfect.

I was still worried about the irinotecan staying down, as it has a reputation of winning the nastiest-tasting-liquid-oral medicine contest. If she couldn't keep it down, Erin would get it as an IV drip (not a big deal), but we would have to keep coming back to clinic every day until she demonstrated she could take it orally and keep it down. I even envisioned a scenario where Erin would get de-hydrated, and we would end up in-patient. With a little help from Mrs. Ativan and Mr. Tylenol with Codeine, Erin managed to take all of her meds successfully, with no back wash or gagging, and slept away most of the afternoon observation periods. This was an ultimate triumph, given the roadblocks of the day. A little car trouble on the hottest recorded May 20th in the history of Brazos County was just a bump in the road.

Now we're home. Erin is happily working on the flag for her class to carry on Field Day on Friday, and I'm going out to walk Willie.

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.
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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.