Sunday, November 30, 2008

Ways to Help--Part III: Lunch for Life

Our regular holiday season message is


Children's Neuroblastoma Cancer Foundation has launched this year's Lunch for Life. Once again, we are getting into the holiday spirit by asking folks to give up their lunch to help find and fund a cure for neuroblastoma.

Here’s how it works: Each child has his or her own virtual giving tree, and your donations will decorate those trees with ornaments and (ultimately) presents. Every donation you make on Erin's behalf has three effects: 1) her tree receives one ornament for every $5 you donate; 2) every donation generates a Giving Code that gets Erin bonus ornaments if you pass it on to a friend to use; and 3) each ornament creates one entry for that child into the Disney World giveaway. For example, if I give up lunch all week ($5/day) and donate $25 to Erin's tree, she gets 5 ornaments on her tree and 5 contest entries. I also get a Giving Code to pass along. (PLEASE NOTE: Erin's Giving Tree Code is 24730) When a tree is full (500 ornaments), those ornaments transform into a present underneath that tree, and the decoration process begins all over again.

I just visited the link and it took less than a minute to give up my lunch! If you're skeptical, spend some time on the Lunch for Life website. ALL FUNDS raised through Lunch for Life go directly to support neuroblastoma research and initiatives. Erin might not benefit from the research, and it might not save her life, but we hope it will. We want to wipe neuroblastoma off of the face of the earth!

Since we have churned through practically all the non-experimental ways to control Erin's disease, her future depends on research breakthroughs. Making a donation is the best way I can think of to help Erin. Last year, I set my account up to give up lunch once a week, and that was completely painless.

One thing you will notice if you have visited Lunch for Life before, the web page has a new look. More importantly, there are new ways to get involved: in your neighborhood and at work. If you have ever thought about passing it forward, this would be the place to start.

Erin has had the kind of holiday we had hoped for. I can't say that she is completely back to normal, but it is the closest to normal we have experienced in quite a long while. She has not needed pain medicine in over a week (although we ended up giving it to her on a reduced and tapering schedule for a few days because when we stopped it suddenly last weekend she had massive headaches and other physical symptoms. . .for those of you who drink two or three mugs a day, imagine foregoing your coffee habit with no warning). Her appetite recovered just in time for Thanksgiving dinner. I knew she was doing better when she got into the spirit of making ice box cookie dough on Wednesday evening, then moved right on to deviled egg production. She still complains of tiredness most days, but I think a practiced eye can tell she has gradually increased her store of energy.

We have stuck pretty close to home because of the nadir in her counts last week, but we were glad to have a full house on Thanksgiving Day (along with the pleasant company, our guest brought the yummiest collection of Thanksgiving food that we have had in quite some time). We missed Davis desperately, but have now moved into the final three week countdown of his return.

This week promises to return to a fuller schedule. We have four days of radiation left (Erin and I will follow the late/early schedule and spend Monday and Wednesday nights in Houston). Friday is the middle school winter dance, and Saturday is Girl Day at Texas A&M (where middle school girls will spend the day learning about math, science, and engineering options). Next Sunday, Erin will be the acolyte for the second Sunday in Advent.

Wednesday, November 26, 2008

Hearts Full of Thanks

November 26, 2008

We find our hearts full of Thanksgiving this season.

Erin and Walter have finished radiation for the day and the week, had an office visit, and are headed home. I have wrapped up my last class period of the semester and only face final exams and various other piles of grading before I can call it the end.

My house is relatively clean; my pantry stocked. In less than a month Davis will return from Hungary, and we will reunite as a family.

Erin had low platelets and white counts yesterday, but a good enough hemoglobin count that we didn't need a boost before radiation. Her susceptibility to germs and bacteria kept us away from the Community Thanksgiving Service last night, but we celebrated at home in our hearts.

HGB 11.9 (well above the 10.0 needed to continue radiation)
WBC 800 (not a good number)
ANC 300 (not a good number)
PLT 42,000 (not a good number)

Mainly, we are thankful that Erin's bad days this fall didn't portend worse days. We had occasions where Erin's overall health, pain level, and fatigue could have signaled rapidly progressing disease--a train wreck that we could not control or stop. Instead, we have a child in school, a child smiling, a child playing, a child cooking. I can't divine the future or even easily articulate what treatment will come next, but I don't really need to. It's enough to give thanks for what we have.

Sunday, November 23, 2008

All A's Again

November 23, 2008

I forgot to mention when I updated on Friday (I guess it was the euphoria of a night off the Erin Watch), that Erin held it together again this six weeks for an all-A report card. Attending the award ceremony on Thursday was one of the most normal days Walter and I have had in a long while, and we certainly enjoyed seeing many of our usual parent buddies at the ceremony.

I'm also pleased to report that, while we got four phone calls from Austin between Friday and Saturday afternoon, all of them said the equivalent of "I'm having fun. I feel fine. NO! DON'T COME GET ME." Mostly she reported on the dance and the six sessions she attended to learn how to make her school a better place to learn.

On another improving front (you'll note here I'm trying to put a good spin on what I'm about to write), Erin managed to spend $36 for three meals, one of which was at a mall food court and another was at a Denny's. This is only exciting because I don't think she's eaten $36 dollars worth of food since I posted on November 2 (Even People with Cancer Get Sick). She probably didn't eat everything she bought, but she was definitely channeling the desire to eat.

This is how she looked about an hour after getting back from Austin:

Tired, but happy, and Willie and Teddy didn't mind a bit.

The only thing that sparked her back up for the evening was mention of a trip to Gina's Restaurant. I have to tell you that Gina's has weighed on Erin's mind lately. The crowds there have thinned since it opened earlier this year, and Erin is worried that if things don't pick up her favorite place in the world to eat will close down. It's a little off the beaten path (although conveniently four minutes from our driveway), and Erin hopes that you locals will think of it next time you're hungry for chips and queso, chile rellenos, or her personal favorite avacado taco with shredded chicken. In fact, I am putting this on the home page because it is the third time in a week that she has ask me if I have told her internet friends to eat at Gina's, so here's the address: 1416 Groesbeck, Bryan AND the phone number: 822-1254 AND a link to the mapquest map. Here's proof that going to Gina's will cure what ails you (post-Gina's photo):

And on that note, I will remind you of another thing you can do to make our Erin smile. Click on this link and follow the instructions to Join The Erin Project! So far, we have over fifty Erin fans willing to publicly demonstrate their love and support. I haven't finished the website, but I have made a substantial effort. You can visit the work in progress at If you would like to add anything to your already submitted information, you can send me an email ( or just leave a comment your entry on the project page. I think you will find browsing The Erin Project more affirming and uplifting than most anything you've done in quite a while.

Friday, November 21, 2008

Some Positive Signs

November 21, 2008

Sometimes, when you have swam against the tide for long enough, you find yourself in a tide pool and it takes a minute or more for you to stop swimming with all your might and enjoy the respite that the absence of a strong head current gives you.

After last week's scans, which threw us immediately into five days of chemo followed by an additional ten days of radiation, all we could do was follow one stroke with another, hoping to make some headway or at least not to fall victim of the waves and be washed away. Funnily, Team Buenger has all gotten stronger as the week has gone by. Erin has felt better and incrementally more energetic, and Walter and I have chipped away at our tasks so that we no longer feel like we are drowning. Erin's counts on Thursday morning looked robust:

HGB 12.2 (nothing like borrowing a bag and a half of blood from someone else to pep you up)
WBC 6700 (normal)
ANC 6200 (normal)
PLT 345,000 (normal)

Erin and I showed up before the doors opened at radiation this morning (6:50), got the third zap, and were in the car heading out of the parking garage by 7:25. We drove against the traffic most of the way home, getting her to school by early in second period! Yesterday she missed the last two periods to make the late afternoon appointment, so this late/early schedule may optimize school attendance.

Last night we worked on the Thanksgiving menu and finished up a project on England for Tech Apps. She is still pretty far behind in some classes, but like with everything else these days, making a little headway (Do you hear that, you rotten tumor? We are making headway on all fronts, so you'd just better give it up).

The big news is that the van to Austin left with six Jan Long middle schoolers aboard this afternoon at 2:30 to attend the Texas State Middle School Student Council Convention, and Erin was one of them. Even bigger news, I wasn't in the group, nor am I following along later. She said she felt well enough to go without either of her parents. I SO hope that's true.

What will I do instead? I haven't decided. I have twenty-five folks scheduled for Thanksgiving dinner, so I could clean house. OR I could spend the evening with Walter, chilling, watching the sunset, and enjoying a libation or two. If I had time, I would poll you to help me make the decision, but since I don't I guess I'll flip a (two-headed) coin.

Tuesday, November 18, 2008

Postcards from Home

November 18, 2008

Last Friday, when we didn't come home, Luke, Teddy, and Willie sent Erin patient greetings through the Texas Children's Hospital website. Last night, when we were in short (now there's a misnomer if I have ever heard one) stay getting a unit and a half of whole blood, those doggy messages finally caught up with Erin. Here they are, in their original, complete, and unadulterated form:

Dear Mistress,

I think I was bad yesterday. I think I might have had some sort of accident, It's hard to remember when you're as old as I am. Well, it must not have been too bad, because no one fussed at me. I would be glad to see you soon, if I could see better.

Your Oldest Dog,



Dear Mistress Mine,

I've been a good dog while you are gone. Moo left the door to the garbage unhooked yesterday, and I didn't even poke my little nose in it! (I did accidentally turn over two trash baskets; and of course, I had to spread it around a little just to see if there was anything dangerous there). We took a walk this morning and who should I see but that snooty "W." Although, since the election I think he's not so snooty. Actually, I think he was just too embarrassed to speak to us. I'll be glad when you can get home. Maybe we can go for a walk and Moo can show you the nifty-gallifty mushrooms she found.

Your Best Dog,



Dear Mistress,

I was GOOD today!! The Old Woman Next Door let me out this morning while she was fixing our breakfast AND I CAME BACK!! Then, after we ate we went for a walk, There were lots of things to smell, but I didn't see any bunnies. That was probably a good thinG or I might have pulled the Old Woman down the road. I miss you.

Your Worst Dog,


What Willie didn't add to his note was that on Monday, Moo put him on his leash attached to one of the posts on the back porch. When she glanced out to the back yard, she noticed Willie running around still on the leash, pulling the backporch post (4 X 4) behind him. Luckily, the porch has not fallen down yet.

As long as this is a "true confessions" postcard, Walter insisted that I reveal my true character by stating that when Erin bowled a remarkable (for her) score of 118 in the first game on Sunday morning, I was force to throw a spare in the final frame so that I could beat her 125-118. I don't know why he wanted me to tell you that, but he said it would be revealing to our readers.

If you can't tell, we are home tonight and giddy from surviving the last six days of super fun. Erin and Walter will head back to Houston around 1:00 tomorrow for the first zap of radiation. After that, we will just have nine more to go.

Before I sign off, I have to thank and apologize to Mary Ann and Jesse. Thanks for driving in to Houston for the final day of chemo and for bringing us a fine lunch which we enjoyed terrifically AND for the entertainment. Apologies for letting you loose at the crappiest part of the traffic cycle. I made it home by 8:00. I hope you were close behind.

Erin seems to have sloughed off the worst of the pemetrexed side effects and most of the other noise. She is not completely 100%. But who would be after six solid days of torture and menace?

HI to the Mika's who we met but didn't get to spend nearly enough time with. Maybe next time!

Working the Short Rows

November 18, 2008

In farming communities before heavy mechanization (at least in the South, which is as far as my familiarity goes), when things were getting a little easier, you might say "I'm working the short rows, now." This presumes that the field or garden was probably set slightly on an angle, as opposed to sitting like a perfect rectangle. As you neared the end of your assigned work--plowing, hoeing, picking--your rows would get shorter and thus the work would get a little lighter. Tired workers always looked forward to the short rows.

So here Erin and I sit, looking at a short row. It's not the last row, because we have daily radiation sessions starting tomorrow (I've heard the number ten kicked around, but not confirmed by anyone in charge) that will require daily drives to Houston. Nevertheless, considering that we have worn the plow for the last five days, dragging it up and down the furrows with little rest, we are terribly excited to get to this short row.

Nothing about this visit to Houston has been easy, and it is a tribute to Erin worth singing from the rooftops that she has borne it all with determination and occasional wisps of humor. Luckily, we have had many blessings in the form of people willing to strap on the plow and pull with us. The Rosses, along with Bailey Scherr, took the long cut home from Victoria on Sunday, detouring through Houston for multiple games of Flinch and a nice dinner. Elaine and Nico braved Houston traffic yesterday for the fourth day of chemo and the nifty transfusion add-on that guaranteed us a full twelve-hour day. Hopefully a red blood transfusion will give Erin the boost she needs.

I don't want to leave the impression that Erin has laid about enduring with grim determination all day everyday since last Thursday. It's just that the fun-to-unfun ratio has been rather low. We did manage to sneak away on Sunday morning (while we were waiting for bed control to call and let us know they had space for us). Can you guess where we went?

Saturday, November 15, 2008

Connecting the Dots

November 15, 2008

My updates have fallen short on detail and cleverness lately, so I'll try to connect the dots a little.

The first week of November, Erin spent most of her time feeling like she had drank a hefty dose of paint thinner. We still don't know how to parcel out the blame: stomach virus, seasonal allergies, or chemo side effects, but the cumulative effect was awful. The second week of November (this past week), Erin has fared much better and has slowly, but surely, regained energy and cut back on pain meds.

This leads me to the next observation: it doesn't seem fair that cancer patients have to do the chemo dance on the days they feel the best. Doesn't it seem more logical to let them feel well and save the chemo for when they wouldn't feel like doing anything anyway? Sigh.

Thursday was a typical scan day at a major metropolitan children's hospital with a patient population a wee bit larger than it was designed to handle on a day with only one CT scanner working. Oh, and make sure you don't start bright and early, so there is barely enough time to fit everything in. For fun, order a zealous tech who needs at least four extra, unordered views of the bone scan, just because she might get a bonus if she spots something no one else can see [sidenote: did you realize that a tiny bit of spilled radioactive tracer can get on your PICC line cover, and if it does it will smear around on your head when you raise your arms above your head during the scan, thus requiring a head washing and more scans to make sure you don't have a skull tumor?]. I guess the best part was watching the doctor stitch Erin's PICC line back into her skin with just a lidocaine appetizer.

Ultimately, the day prepared us to hear that the pemetrexed hadn't done the work we'd hoped for. Erin's tumors are slightly bigger, though perhaps more necrotic looking.

Friday was better, timingwise. Erin has an overnight fieldtrip to Austin scheduled for next Friday and Saturday, so if we were going to get a round of chemo in, we needed to start yesterday. That's what we did, and we got started early enough and things ran smoothly enough that we beat the traffic out of town and got home in plenty of time to have Teddy time.

On Thursday, when we found out we needed to be in Houston for several days, we sent out a call for help. On short notice, the amazing Benson family dropped all their weekend plans in favor of driving down to the Houston area, just so Clayton Sue could participate in "Fun with Chemo." Her parents met us this morning at the Barnes and Noble near the hospital, and she shooed them away before we had much of a chance to visit. Since then, CS and Erin have been shoulder to shoulder, chitchatting, watching movies, playing computer games, beading lanyards, and (I hope you are reading Ellen) doing homework.

Lara and Elle Weberling also drove in from The Woodlands to act as our beading supplier and also provide us with mirth, humor, and companionship!

I have to say that the chemo schedule got pretty disrupted by the 5:00 p.m. start, but we're almost done post-hydrating and will head out to the Marriott for the evening shortly. Since we can't start tomrrow until 3:00, I think we'll try to get in to see Madagascar before hand, or do whatever two wild eleven-year-olds want.

Moving Forward, Pretty Soon

November 15, 2008

We are primed to hit the hospital and start day 2 of topotecan and cyclophosphamide. The car is packed with a sculpture kit for horses, origami material, plenty of art supplies, some movies and audio books, and our suitcase. We have our dear friend Clayton Sue Benson standing by in Kingwood (having driven in from Fort Worth last night) ready to meet us and start the fun. Unfortunately, we're feeling a lot like Mary and Joseph at the moment. There's "no room in the Inn" for us at this point, so we need to hope that some cancer child passes their culture test or their blood test or some other hurdle they are waiting for to get discharged, so that we can have their room.

We certainly enjoyed the comfort of our own beds last night and the peace of watching the sunset over the lake.

I'll keep you updated on the changing story, but until then keep The Erin Project contributions coming. I have not had too much time to put the marterial up on the web, but . . .slowly but surely.

Thursday, November 13, 2008

Buckle Your Seat Belt

November 13, 2008

The game is changing again, and it looks like we're going to try to do this the hard way. Erin's scans weren't much worse than two weeks ago (probably not bad enough to kick us off the study), but there is one tumor in particular that could cause Erin some problems if it keeps growing so her doctor wants to radiate it, and Erin can't do radiation and stay on the study. So. . .we dropped out of the pemetrexed study today, and tomorrow we start back on five days of the Topless Cyclone (Topo/Cyclo), which we can do without delaying radiation.

What does this mean?

Well, the ten minute pemetrexed infusion every three weeks was appealing logistically. Still, the side effects, although difficult to separate from Erin's other illnesses and complaints last week, were pretty limiting. Erin's energy level had dwindled so far, that her life had become quite small. Her liver function numbers went through the roof, and she had a headache that wouldn't go away. Plus she now has a small tumor pushing up against one of her bronchial tubes that needs to be stopped in its tracks.

At least we know what to expect with topotecan/cyclophosophamide. The worse part will be missing school Friday, Monday, and Tuesday, but we decided to jump right in so that Erin could go on her Student Council field trip to Austin next weekend. Anyone from the Bryan/College Station area who wants to sign up to go with us for part of the trip would be especially appreciated. Erin was not really down with spending five days getting chemo, so I am going to have to work really hard to spice up the pot.

We've had a really long day, so I'll try to post more as I remember it.

Wednesday, November 12, 2008

She's Laughing

November 12, 2008

Walter and I don't know what kind of news we'll get when the scans come in tomorrow. I don't think the doctor is very optimistic, although it's hard to tell. We've certainly had enough signals to confound us over the last week and a half. Nevertheless, there are some positive signs. Erin's counts looked great on Monday:

HGB 9.6 (headed up from a low of 8.8 last Thursday)
WBC 10.2 (normal)
ANC 7800 (high normal)
PLT 375,000 (also high normal, what's going on here?)

And all of the liver panel numbers looked better, as if some virus or huge dose of chemo was resolving itself. Erin's massage yesterday felt like a train wreck under the fingers of the masseuse, but it also felt muscular rather than tumor-y (as if I could ever discern a difference). Princess Barking Dog still sound like she is coughing up a lung every time she lets a series of coughs loose, but so do half my students these days, thanks to the BVC (Brazos Valley Crud).

The best sign? Jackson and Noah came over this afternoon, and for the first time in almost two weeks, I heard Erin belly laughing. It started with a heated conversation (definitely, middle school material) about the difference between "gross" and "nasty." I got lost in the finer points of the debate. Then they started listening to their music downloads, definitely bring back old memories (maybe high school?) of everyone trying to sing the falsetto part to "Bohemian Rhapsody." I think they hit replay thrice before they moved onto another tune.

If you read this on Thursday, think about us. Walter, Erin, and I are driving to Houston, and hoping for the best on the CT and bone scans we have scheduled. If all is okay (at least stable) we'll do another round of pemetrexed next week (hopefully without the viral and allergen side dishes). If all is not okay, then I'm not sure what will happen, since we don't have that many options left. Anyway, think of us and send all the positive vibes our way that you can afford.

Also, we are really enjoying the contributions to The Erin Project! It's not too late to join.

Tuesday, November 11, 2008


November 11, 2008

Erin found a website where you can load a couple of photos and through technology magic, see what a baby produced as a bi-product of matchmaking between the individuals in the original photos would look like:

Erin submitted this shot of Teddy:

And this shot of Willie:

The resulting baby, Twillie, looks very little like either of them, but perhaps s/he shares their personalities:

Needless to say, Erin thought this was hilarious.

Sunday, November 9, 2008

The Noise Continues

November 9, 2008

In my last post I mentioned that I was having trouble discerning what, exactly, was going on inside Erin. Five more days have passed, and I still don't have a clear idea. She continues to feel quite tired (lingering virus? chemo side effects? tumor progression? hemoglobin 8.8?). Her back--on the opposite side of where she typically has tumor pain--continues to bother her and she has either tylenol or tylenol 3 in her system a good part of every day (constipation? lingering virus? tumor progression?). . .I have a massage scheduled for Tuesday. Her appetite has dwindled from its usual robust level (chemo side effect? tumor progression? lingering virus?)

Her cough provides some clarity. She coughs like a barking dog, almost positively as a result of seasonal allergies and the Brazos Valley Crud. This no doubt contributes to her aching back and lack of restful sleep. The good news is that we took a chest X-ray on Thursday and it showed clear; no tumor obstruction nor pneumonia. Her counts also held steady, with the exception of the diving hemoglobin mentioned above. On the other hand, her liver function numbers were quite elevated. We'll draw them again tomorrow and see if they have come down any.

Since I last wrote, Erin was in school on Wednesday and Friday and in Houston for clinic on Thursday. We also pulled off a splendid garage sale (despite my complete ignorance and inexperience) to raise money for neuroblastoma research ($1300) thanks to all of you contributors who left great items that were snapped up quickly and to the other women--Tracy, Lara, and Athena--who knew the ropes and handled every contingency.

Thanks also to those of you have gotten around to sending in your material for the Erin Project. We fell wrapped in love and suspended by a giant glittering network of support already. Please continue to send in your material!

I could write loads more, but I don't want to sit at my computer when I could take a sunset walk down the road with Erin. Until next time.

Wednesday, November 5, 2008

Junkie (Politics and Pickles)

November 5, 2008

First of all some lab numbers from Monday:

HGB 10.8 (not bad for a week after chemo)
WBC 8700 (normal)
ANC 7500 (high normal)
PLT 407,000 (also high normal, what's going on here?)

On the whole these took me completely by surprise. I was prepared for anything, even the possibility of transfusions, but instead got really healthy looking numbers. On the other hand, Erin doesn't feel as good as her numbers look. There is so much noise that it really is hard to separate out the side effects of the chemo, the effects of the stomach virus and seasonal allergies, and possible tumor progression. Here is the cast of symptoms: extreme fatigue, headache, overall puniness, congestion, cough, raw throat, and back pain (of course, this is worrisome).

See, it's harder than it sounds to match cause and effect.

Erin returned to school yesterday, medicated with tylenol-3, and when I picked her up she seemed washed out and spent. Oh me of little faith. After a brief rest, she started getting geared up for the evening. She began by flipping through all of the television channels, matching the channel number and the network to the television program guide, thus creating a list of which channels were covering the election at what times.
Then, she found an internet list of states organized by their poll closing time, which she highlighted and marked with various information about whether they were safe, likely, leaning, or toss up states and if there were contested Senate races in them. By 5:30, she had staked out the prime spot on the living room floor. As the first polls closed and the pundits and analysts started chanting over the numbers, Erin had the remote in her hand, surfing channels, while simultaneously clicking through on her laptop to sites like and looking for the freshest returns. Every time a state went in her favor (actually Barack Obama's favor), she headed to the kitchen for a celebratory pickle! I wonder what her sodium and potassium levels will look like when she has her labs drawn tomorrow?

The Tjoelkers joined us for the poll watch (it's hard to believe they leave for six months in Australia in exactly a month. What will we do?), and we all had a later night than we normally would. Chet's race was closer than we had hoped. Erin had a hard time going to bed without knowing the final outcome, but I finally convinced her she would be a zombie today (and so would I) if she didn't go on to bed. Chet did win, and for that we're glad. And Erin was a zombie. She finally pulled the plug on school about 1:30 and came home for some better lunch and a nap. Overall, I think she feels slightly better today than yesterday with slightly less pain medication.

Tomorrow we drive into Houston early for clinic. Here's hoping for safe driving and no hassles.

Tuesday, November 4, 2008

Ways to Help--Part II: The Erin Project

New entry belowI I am continuing to leave the announcement of The Erin Project here as a reminder that we need your love, your photos, your memories or characterization of Erin, and your story!

November 4, 2008

A week or so ago, Erin received a card with a laminated maple leaf bookmark and some very kind words from Mary Nan Linnstaedter. Mary Nan had chosen Erin from the list of youth at our church as her prayer partner. Her note, like Mary Nan herself, was chatty and full of conversational tidbits: a most lively read. In it, she mentioned first meeting Erin as a three-year-old. Apparently, the Buengers and the Linnstaedters were at some sort of church event. Walter, Erv (Mary Nan's husband), and I were all tied up, busily doing something. Erin saw Mary Nan sitting alone and went up, introduced herself, and kept her company until we finished up. Mary Nan also told Erin she still had the key chain that Erin had helped make the year I chaired the church fund drive.

The point of this?

Six and a half years ago, when Erin started her treatment, we called upon our friends to nurture and sustain us. We broadcast an appeal to folks we knew to send us their photo. It made more sense to a five-year-old Erin to have a tangible sign of our friends' care, so we made a poster-sized collage of these photos and displayed it front an center during every hospital stay, every hard day of side effects, every low moment during treatment. We looked at it and saw abundant love.

We are now walking an even harder, and definitely less trodden path. And we know we are not walking alone. Some of you leave us messages and send us mail ("e" and "real"). We get a kind look and a pat on the shoulder when we see you. Even those of you who are silent and far away sustain us by your visits to "Erin's Home."

When reflecting on these two separate, but related events, it occurred to me that we needed to leash the power of these two vehicles and combine them to give us an even greater boost. Thus, we are launching The Erin Project.

I want to collect personal photos from as many Erin Fans as I can. I want Erin to browse through page after page of smiling, loving faces, knowing that each face reflects someone who cares for her deeply and wants her to beat this damned disease. I also want to collect tidbits from you about your connection to Erin. Those of you who know her, may have a favorite Erin story (detailed or brief) or recollection. If you only know her through these pages, you probably remember some vignette that captured your attention or imagination. We want to know what that was.

I will take your words and your portraits and build a web page called The Erin Project that she can access anytime (at the hospital, at school, at home) through her laptop whenever she needs a boost of energy, spirit, love, and sustenance.

Here's want you need to do (when I say "you," I'm talking to one each of you. Not just the ones who know us best. This applies to lurkers as well as those we see every day):

1. Send me a photo (by email:; by regular mail: 4138 Cypress Road, Bryan, TX 77807) of you and anyone in your family who thinks fondly of Erin. Send it with the Subject line: The Erin Project.

2. Take a moment to capture Erin in words (a favorite story, lingering memory, small vignette that captures her for you, even adjectives will work), and send that as well (you can do the written part as e-mail, regular mail, or as a web page comment).

3. While you are at it, tell us something about yourself. Erin loved hearing all your funny middle school stories and pet stories. She really loves people, so let us know who you are and what you are like. Tell us your favorite books, music, or shows. How do you like to spend time?

We will put your photo and Erin vignettes on the web, but keep the information about yourself for our enjoyment only. You can do this in stages if you'd like. Send a picture today and the written part later or vice versa.

The important thing is to do it.

We are currently about to finish the third book of Christopher Paolini's Inheritance series: Brisinger. In it, the hero can store energy that others provide him in jewels in his belt and draw on that energy when he is weakened or faces big challenges. Think of The Erin Project as your contribution to Erin's store of energy. She can draw on it when the road gets long and hard and when she struggles under its burdens.

Thank you.

Now, go and vote if you haven't already.

Sunday, November 2, 2008

Even People with Cancer Get Sick

November 2, 2008

Erin had a good evening on Halloween trick or treating with Nico, Adam, Jesse, and Ian. They managed about two-and-a-half hours of door-to-door. They got on such a roll that they never made it to the haunted house, which was definitely okay by me.

She told the people at the houses she visited that she was a gypsy, but she really conceived her outfit as Angela, the Herbalist from the Eregon series.

Despite hiking around the Tjoelker's neighborhood on Friday night, Erin managed to summon enough energy to really enjoy the Aggie's win over Colorado with her buddies Chet Edwards and Aaron Wunneburger. What a special treat!

The fun stopped pretty soon after she got home after the game, starting with the worsening of the chemo-induced constipation (which explains the back pain I reported a couple of days ago). Things went from sort of bad to sort of worse some time during the night with the onset of a stomach virus, including copious amounts of vomit. This is not a picture of Erin, but it looks quite similar to her in the early hours of the morning (talk about disappointed expectations for "Falling Back").

After a full day of feeling puny, Erin seems to be doing a bit better this evening. She has held down some sips of ginger ale and is watching The Witches of Waverly Place on television while I do this update. This beats the rest of the day where her aching self hasn't gotten much rest. When I add that to the news that she hasn't developed a fever yet (fingers crossed; thumbs pushed) AND Dr. Russell emailed news that Erin's bone marrow is NEGATIVE for NB according to the biopsy and other tests done on last week's aspirations, we are all feeling much better than we did for the last eighteen hours.

As I explained to Erin, even people with cancer get sick.

This little setback has not derailed next weekend's garage sale. I have a really good collection of stuff on the back porch. If you don't have time to coordinate with me to receive your stuff, just intermingle it with the bags and boxes that are already sitting out. Don't forget to print out your copy of the flyer and share it (click on the box at the top left of the page and you will have a ready-to-print PDF file.