Pages

Wednesday, December 31, 2008

A Pint Low

December 31, 2008

Erin and I are both a pint low. She will have her pint of vintage red through her picc line this afternoon (room 395 of St. Joe's if you have nothing to do before you don your gala clothes and leave for tonight's party circuit. Note to Bob: I am writing this on Wednesday, December 31. Do not go to St. Joseph's looking for Erin if the ball has dropped in Times Square. . .and remember that I am writing this while winking and smiling). I will have my pint in a mug this evening to celebrate saying good bye to 2008 (a year, by the way, I am not overly cross about leaving behind).

Saturday, December 27, 2008

Gold

December 27, 2008

I want to send thank you notes. I really do. I just don't know where to begin.

There are at least seventy-seven contributors who gave up lunch for Erin's Lunch for Life tree (1147 ornaments this morning!) and even more who have joined The Erin Project. More astonishing? I don't know them all and will never meet many of them.

We average around 450-500 drop-ins to the website every day, not counting the couple of you who click on the link every time you walk past your computer. Individuals, groups, and whole congregations around the world pray for us.

Erin receives beautiful and thoughtful gifts year-round from people, some of whom we've never met and most of whom we can never reciprocate. I can't even name them all for fear that through sheer oversight, I would leave out some dear and valued friend of Erin. Our friends give up their time, their talent, their hearts for us.

An even bigger gift flows from the thousands of tiny stitches that each of you add to the fabric of our lives every time you see us, smile with us, pat us on the back, hug us, drop us a line, teach us, learn from us, and in a myriad of ways, add to the richness of our experience.

Finally, you have given me the the most special gift I could ever receive, the gift of grace: my own realization that I can't ever repay you AND that even though I can't repay you nor do I deserve your gift, I can accept it with the same graciousness as you give it. For someone who used to think she was self-sufficient for all practical purposes, this has been the hardest and most profound gift to accept that I have ever received in my life.
I tend to want to pick up the tab, to make sure I pay when it's my turn, and to return favors as soon as I get the chance. Yet now I have so many debts, there can never be a reckoning. All I can hope is to learn from your example, and pass these thoughtfulnesses on to others.

All of this is pure alchemy or perhaps like the fairytale of Rumplestiltskin. You have taken what I had and didn't want (lead, a room full of straw, a child with cancer) and turned it into gold.

Please accept our thanks.

But wait. There's more.

If my request for you to join the Erin project collided with Thanksgiving, then Christmas, and you have put it off, use this lull between Christmas and New Year's to send in your entry. Or make it a New Year's resolution that you can keep.



Tuesday, December 23, 2008

Christmas Can Come Now

December 23, 2008

Last time I posted Erin was still singing

"Hark the herald angels shout
Two more days 'til school is out."

I, on the other hand, was hoping school would last another ten days so I could get ready for Davis's arrival and Christmas. As it was, I had two blissful days lined up: Davis not home yet; Walter still working; Erin still in school. So when Shirlene and Mary Ann asked me how I was going to spend the day on Thursday, it didn't seem unusual at all to say, "I plan to clean the attic." The way they looked at me implied that not everyone (or anyone) they knew had similar aspirations for the Thursday before Christmas.

I knocked that off the list, got some late shopping in, then turned my attention to the real victim of the season, my house.

Didn't I read that if you gave your house a super-duper deep cleaning for Thanksgiving, it would last until Christmas? I'm not sure where I saw the article--I read Smithsonian, Consumer Reports, and The New York Times--but I really expected my house to stay clean for at least a month (and don't you dare roll your eyes). Alas, you can't believe everything you read. The cobwebs on the twenty-four foot ceiling have re-spun themselves, the toilets have soiled themselves, and the windows have grown nearly opaque.

That means that I had a lot to do before I could get Christmas under way, and I'm happy to say that with a little help, the house looks fairly presentable. A few dirty spots still linger, but not in the immediate public area of the house (you can come in the great room, but everything else is off limits).

Slowly, but surely we have knocked out the must-do pre-Christmas items on the list. We have a tree. We have all the gifts made or bought and some actually wrapped under said tree. We have the Christmas music piping through the house until some annoyed family member shuts it off and Walter put up the blue lights outside before the last cold front. I got my mams o'grammed this morning. And we tanked up Erin's platelets this evening just in case she feels like falling on her knees in delight at any point on Christmas Eve or Christmas day.

Erin had her own list of pre-Christmas activities. You'd think someone counting down the days until school dismisses for the holidays would run home as soon as the bell had rung. Not Erin, she stayed at school last Friday until 5:30 going to Chess Club or Science Bowl or maybe both. I don't know. Since then, she has kept her friends entertained by arranging company almost every day. Jackson came over Friday night. Clayton Sue buzzed in from Fort Worth on Saturday, and her grandparents graciously share her with us for several hours. Aaron Wunneburger left his dad to put the lights on their tree on Sunday afternoon to hang out, and Ayesha made Tuesday a great affair with her unexpected but most welcome visit on Tuesday afternoon.

Christmas is coming on Thursday, whether I'm exactly ready or not, so I say "Come on." I may have only written four Christmas cards (and they are not mailed yet, thus automatically turning them into New Year's cards), and I completely forgot to put on the wooden bead garlands on the tree before we decorated it. I'm ready in my heart even if I don't have everything precisely arrange.

Thursday, December 18, 2008

Advent and Cancer Research

December 18, 2008

On Monday, we had a longer than normal wait at clinic. No explanation. Just a long and unproductive gap between checking in and getting started and slow transitions between each step in the process once Erin got hooked up (hipster warning: "hooked up" is not a reference to casual sex in this context). No one had singled me and Erin out for the slow treatment. Nobody had written orders that instructed nurses to make us wait. It was what it was . . . a thirteen hour day.

I did get a little antsy from time to time, but I never lost my cool. I could feel a lot of frustration in the infusion room, and I didn't want to add to the level of tension when I knew there was absolutely nothing I could do or say that would make things go faster. I decided to re-frame the whole experience in light of the Advent season: waiting and anticipating was an important part of the experience. I would appreciate the end of the five-day cycle all the more if it didn't come easy--if I had time to reflect before it arrived. It was a stretch, but it kept me in relative peace until we finished up and hit the road.

Upon further reflection, I think I used the wrong analogy when trying to make sense of Monday's marathon. Waiting, anticipating, getting ready, preparing my heart and mind makes sense for Christmas. It even makes a little sense in how I frame counting down the days until Davis gets back from Europe (you can see that I have added a countdown timer to The Report). It just doesn't make sense for thinking about a long day at clinic. Here's my new frame of reference:

One of the speakers at the Women in Science day that Erin attended in early December was someone who does breast cancer research. After she had made her spiel, she looked around the room and asked the assembled girls if they thought what she had showed them was interesting and exciting. They nodded in agreement, but clearly the talk had not stirred the audience like the various goops and explosions had during The Chemistry Roadshow, nor had it grabbed their attention like solving the faux murder of Justin Timberlake during the forensics sequence. Erin raised her hand and when she was called on said something like:

"I'm Erin Buenger. I've had cancer since before I started kindergarten. The kind of cancer I have doesn't have a cure. I go to Wahington D.C. to lobby for more money for cancer research for the kinds of cancers kids get. I think my friends and I would be a lot more interested and excited in your research if you were working on kids cancer instead of what everybody else is working on. I'm sort of tired of waiting."

I think that fits better. I, also, am tired of waiting. I don't need the time to prepare myself. I don't need the anticipation (to finish a day at clinic or to embrace big breakthroughs that will save kids' lives). Sigh. Thank goodness Erin fans around the world have taken matters into their own hands, contributing to Lunch for Life in record numbers. Click here to view the 998 ornaments on Erin's tree or better yet be the one to put her over 1000 (estimate a minimum of five bucks per ornament and do the math if you don't think a little effort can make a big difference). We all owe you more thanks than we can ever express!

In the meantime. . .Erin is so looking forward to
sleeping in starting on Saturday. I have drug her from pillar to post for what seems like months now. She hasn't had an absent-free week at school all semester, and she's tired of always being behind. She just wants to relax. Luckily, that is in the cards for her two-week break. Hopefully, this will take care of the complaining and general negativity that she has crept into the way she greets the morning (it's worth noting that after about half an hour she cheers up and resumes her positive outlook).

I'll leave you with a few photos from Saturday night (I'm hoping someone will see this and send us a copy of the photo they took of her with Vince Young):




Sunday, December 14, 2008

Remember the Titans!

December 14, 2008

Remember the Titans! How could we forget them? They wrote their names on Erin's head with permanent marker.


What kind of mother lets total strangers with Sharpies mark up their daughter? Me, I guess.

When we made it over to the Marriott after Saturday chemo, we caught the hotel personnel doing some spiffying up: sweeping the front sidewalk, polishing the lobby brass, etc. They also had velvet rope strategically placed. We noticed folks loitering about, including a lot of hotel employees that ordinarily would be occupied at that point in the afternoon. We could tell they were expecting company, but no one would tell us who.

On the way up the elevator, the hotel assistant GM, who Erin had befriended on an earlier stay, let her in on the secret that the Tennessee Titans would arrive around 5:00. With help from a small, but mightily generous, crowd of Titan fans (who really knew the ropes about getting autographs),
Erin found a strategic spot on the rope line right at the top of the escalator and waited. Her first triumph: an autographed copy of the photo of 6' 6", 320 lb. Albert Hayneworth that appeared on the cover of Sports Illustrated.

A short time later Vince Young (former UT quarterback and multiple award winner and record setter) came up the escalator.

His designer suit: $1200
His tasteful jewelry: $5000
The look he had on his face when Erin asked him in a very small, very polite voice if he would please sign her head: priceless

Not only did he sign her head, but he was gracious enough to sign two more times so that Erin's friends Jackson and Aaron (who in contrast to Erin, actually know who Vince Young is) could each have their own autograph.

Over the course of the evening, Erin scored many more signatures--some on her head, some on paper, and some on the clothes she had on. Lendale White was my favorite--not because he told Erin that he would put her photo in his locker for inspiration (although that did weigh in his favor), but because he took the time to talk to her and get to know her. Donnie Nickey gave he a strawberry kiwi G2 gatorade along with his autograph (which really helped my campaign to keep Erin hydrating herself to avoid the kidney problems often associated with cyclophosphomide). Even Coach Fisher took the time to meet and sign (I think maybe he's rethinking that wasted two minutes in light of the Titans one-point loss to the Texans this afternoon).

I can't say enough about the efficiency of the in-patient staff to get us in and out smoothly both Saturday and Sunday. We barely had time to run down and visit our buddy Hans (who was restricted to the 7th floor waiting on his severely low potassium to recover). The short time we were there was made even sweeter by having Jackson along. He is the most cheerful helpful middle school kid you would ever want to spend time with.

We got home this evening and Erin had a plan. Since 5:00 she has been in her self-styled, self-built tent fort--reading, munching popcorn, and snuggling with Teddy. I barely had the heart to make her come out for supper.


Saturday, December 13, 2008

Getting By. . .With Help From Our Friends

December 13, 2008


We have started the infusion for day three and wow! The days have passed quickly and uneventfully. We brought Sandy Schwalen for Thursday and Friday. Sandy loves horses even more than Erin does and taught us the finer points of dressage and equitation. The two of them worked pretty hard on end-of-semester homework, but, of course we had plenty of time to kill, so we managed to play a lot of games and watch a couple of movies, too (Goonies and What's Up Doc?). We also got our grit up and went to the Body Worlds exhibit at the Houston Natural Science Museum on Thursday after chemo. I didn't know whether Erin would appreciate such a disturbingly close up view of human bodies, but I underestimated the middle school fascination with anything even bordering on gross.

Friday went just as smoothly as Thursday, and believe it or not, we made it back to Bryan by 3:30, leaving us the whole evening to live normally. If we hadn't had chemo today, we might have had a chance to meet President Bush who was in town speaking at graduation. Chet Edwards traveled with him from Washington on Air Force One and on the helicopter into College Station, and wrote to check if our schedule coincided with theirs. It didn't so we had to demure--you can't have it all. Chet thought we might try again for a presidential introduction in '09.

Jackson willingly got up early on Saturday morning and made it to our house by about 8:00 so he could drive down to Houston with us this morning and provide the entertainment. I used to think that video gaming was isolating and led to social alienation. With Erin and Jackson in the backseat, I learned my lesson. They each had their own Mac book with their own game playing, but they were so good a multitasking that they followed their own game and each other's game, doing replays, helping each other get through difficult objects, and frequently trading computers on the fly to play each other's games. And the nonstop chatter punctuated by laughs and giggles, wow! I don't want to suggest that your children sign up for chemo, just so they can have fun, but I do want to say that hanging out with your friends sure does ease the day.

Because the nurse and pharmacist were so on the ball today, Erin started hydrating the minute she walked in her room. That means we can start fairly early on Sunday and make it back home for a decently normal evening on Sunday, leaving us only one more day of chemo on Monday. Dr. Russell gave us an early Christmas present on Thursday by giving us a free pass to stay home in Bryan for labs, etc. We will scan on January 2 (I think) and not have an office visit until January 8.

Wednesday, December 10, 2008

Erin's First Snow

December 10, 2008

Erin experienced snow for the first time in her life today (she can cross that off her life list, if you consider the pathetic little snow we had in today a SNOW).

Chemo (the old standby, the topless cyclone) starts tomorrow and continues through Monday. We have playdates arranged for every day except Sunday. Call me if Sunday fits your schedule.

Tuesday, December 9, 2008

Fallen Down on My Funniness

December 9, 2008

Last night Walter and I sat in the great room visiting and letting the green chili chicken soup simmer, while Erin worked on her Spanish class podcast at the dining room table. I barely know what a podcast is, and the idea of putting one together in a foreign language exceeds my capabilities and perhaps even my imagination. Nevertheless, that's what Erin was doing. The topic: "my family" (which she interpreted loosely to include practically everyone she knew).

To complete the assignment she had to put together a slide show with photographs and use software to record her explanation of the slides (in Spanish). She took photos of Walter and me and the dogs with her computer camera and started searching for more pictures to add to the montage she had in mind.

[Digression: Our preacher, Ted Foote, occasionally stops right before he heads out on a point that seems tangential to his message to encourage the congregation to "hang with me, this will eventually make sense." He then launches down an unexpected path, only to arrive, as promised some minutes later back at a place where the side trip and the main road converge and make sense. I am hoping to do the same, so hang with me.]

Anyway, Erin doesn't read the Home Page often, but she knew that I had some decent photos on it that she could capture for her project. Since her definition of family included all of her buddies, she figured the best place to find material was to browse this site. After a few minutes of scrolling and clicking and sighs and murmurs of "oh that's a good one" and "don't we have a picture of Ayesha somewhere?" the quiet atmosphere that permeated the room shattered into a thousand pieces. I looked over at the table and saw Erin staring at her computer and shaking so hard I thought she might hit her head against the screen. "What's the matter?" I called. She tried to tell me, but her mirth kept her from doing anything but
cackle, chortle, chuckle, giggle, and guffaw. She tried to read me the entry she had come across (What Would You Do Next?), but failed in the attempt because she couldn't keep her composure. She scrolled down some more, found Her Tongue, and cracked up again. There were several other outbursts of almost tear- or pee-inducing laughter, and when she reached the end of Plumbing the Depths of a Ten-Year-Old she gained control of herself, and said, "Mom, you have certainly fallen down on your funniness lately."

My response: "Oh yeah? I'm plenty funny!"

She said: "Have you read your entries lately? All of them are either: we're headed to Houston, we're back from Houston, her counts are good, her counts are not so good. I'm surprised that anyone is even reading anymore."

So, here is a feeble attempt to redeem myself.

Erin likes most foods, but especially meat. She could do without oatmeal and favors vegetables over fruits, but otherwise I have always considered her a good eater. After her stomach virus/pemetrexed-induced anorexia, she had lost ten percent of her 66 pound fighting weight and was hovering between 59 and 60 pounds. We didn't want to force her to eat, but food just didn't appeal. I knew that she loved beef stew. I figured if I bought a slightly better cut of meat and cut it into very small bits in a stew, I might entice her to eat. I put the stew together (substituting pearl barley for potatoes on the theory that they would be easier for Erin to swallow and less overwhelming than giant floating chunks of potatoes) and let it simmer for quite some time, so that the smells might wake up Erin's hunger.

It did the trick, she came to the table more enthusiastically than she had in a couple of weeks, then proceeded to not eat. She poked around in her bowl, nibbled at a crust of bread, then excused herself. At bedtime I used my concerned mother voice to ask about her appetite (in my mind, I wondered if her tumor had grown so suddenly large, that she had no longer had room for food). She looked me in the eye and took my hand and patted the back of it, "You didn't really expect me to eat oatmeal stew, did you?"

So, for those couple of you actually interested in Erin's counts (and if you read them out loud after sucking the helium out of a balloon, this could be even funnier):

HGB 9.5 (holding steady)
WBC 5500 (low normal and good enough to protect her from the hand, foot, and mouth sickness floating around her school)
ANC 4200 (normal)
PLT 110,000 (good enough to start chemo on Thursday)


You continue to amaze us by contributing to The Erin Project (I will have new entries up today or tomorrow--Pat Lacey fan's: you won't be disappointed) and by lighting up Erin's Lunch for Life Christmas tree (we are having our positively best year ever. Erin's Giving Tree Code is 24730 and instructions for giving are below). Erin has a plan for the Toys R Us gift cards that are generated every time the tree gets full. It's probably not something Dr. Russell wants to hear about a patient that spends about half of her days with low platelets, but Erin is saving up to buy herself a trampoline.

Saturday, December 6, 2008

Have You Been Waiting?

December 6, 2008

Erin fans around the world have waited for an update that resumes the normal pace of activities, and do I have a post for you? Let me bring you up to speed.

On Wednesday, Erin spent a majority of the day at school, then I swiped her, picked up her buddy Sam Villalobos and her soccer coach, Lisa Villalobos at the gas station on the way out of town, and headed towards Houston. We managed to get Erin's penultimate radiation treatment at Methodist Hospital (a five-star facility, in my opinion) before we headed out for an evening of fun. We jumped back into the car and drive over to the Rice Village (not as bucolic as it sounds) and bought a new sweater and accouterments for the upcoming dance. We then spent at least an hour browsing Claire's (as any mom of a pre-teenager knows is a gold mine of crap that appeals to 11 year olds). Lisa and I rewarded ourselves by choosing a suitable adultish restaurant with "real" food, Prego's [sidenote: the only other time I have eaten at Prego's was a semi--this means unpaid--consulting job for TCH where we ate and drank in the wine room]. We demurred on the dessert tray because we knew we had access to the concierge floor back at the Marriott, where we hied ourselves to enjoy carrot cake, little petite-fours, and strawberry cheesecake. We then sashayed back over to Methodist, where Sam practiced her Christmas recital music on the baby grand in the Methodist lobby (didn't I mention that Methodist was definitely a five-star facility?).

On Thursday morning, Erin and I returned to the concierge floor for breakfast before finishing off the radiation tour at 7:15 (and rang said bell). We grabbed Sam and Lisa and a little second breakfast (actually Erin grabbed second breakfast and I attempted, unsuccessfully, to update the home page). By 8:30 we were in line to nosh on a third breakfast at the McDonalds in St.Luke's. Are you confused yet?

Third breakfast?
Third hospital?

Erin had an arrangement to meet her friend and Congressman Chet Edwards on Thursday morning. Chet's sister was scheduled for heart surgery bright and early, and we all found it especially funny to meet at the McDonalds house within one of the finest heart hospitals in the country for a little artery-clogging activity. After a short visit Erin moved on to her clinic visit with Dr. Russell back at TCH, and Chet returned to waiting for his sister to finish surgery to repair her heart valve, clean out a clogged artery, and repair a congenital small hole in her heart (it turns out that that was a three-way victory!!!).

We made good time at clinic. Erin counts were okay (low platelets, but decent WBC and hemoglobin), and we made a run for it before anyone could slow us down.

We didn't make it back to school before the end of the day, but we did manage to make brownies for the CNCF bake sale and get a couple of hours of homework in before bedtime. Oh, and we had salmon for dinner which Erin scarfed down like a starving brown bear.

Friday, Erin celebrated her first complete day at school since November 17. Not satisfied with eight periods, she stayed after school to decorate for the dance, then stayed for the dance: Do you think she had fun?


This morning she met her compadres at school at 7:50 and headed to Texas A&M for the Women in Science Conference. All I know is that involved hissing cockroaches, genetically altered fruit flies with no wings, forensic science, the Chemistry Road Show, 150 highly motivated sixth grade girls and more science experiments than you can shake a stick at without causing an explosion. Here is the pre-departure photo [notice the flower arrangement that Bob and Dorothy Anderson dedicated to our family's honor last Sunday in the chancel at church. Have you ever seen something as lovely or unusual? Thank you.]


Erin returned from her day at Science World full of vim and excitement. I had to relive the whole day through her re-telling of it at a rate of about 1:6 (one minute of explanation to approximately six minutes of experience, which means it took about an hour for her to tell me what she had done between 8:00 and 2:00).

We took a little while to re-group and unload and put away groceries, then we headed over to the Tjoelkers. Much to our dismay, but their delight, the entire family will leave tomorrow for a six month adventure in Australia. Erin looked so sad driving home. I looked in the rearview mirror and said,"You look a little sad."

She looked back and said, "What do you expect? My best friend is moving to Australia?" Here are some photos to keep us going until they arrive and we can SKYPE with them.






Once again we would like to thank the many Erin fans for lifting us up, both by contributing to The Erin Project (updated this again this afternoon) and by lighting up Erin's Lunch for Life Christmas tree (we are having our positively best year ever. Erin's Giving Tree Code is 24730). It's not to late to join either endeavor if you haven't yet.

There are no guarantees in life and that's why we grab it by the throat and shake it when we have a chance.

Thursday, December 4, 2008

Rang the Bell

December 4, 2008

I have many interesting things to post, but I'm up to my eyeballs in other stuff (interpretation: grading, grading, grading). Two important things tonight (and more tomorrow, if I make progress on my other stuff).

First:

Thanks to the many Erin fans for lifting us up, both by contributing to The Erin Project and by lighting up Erin's Lunch for Life Christmas tree. It's not to late to join either endeavor if you haven't yet.

Second:

Erin Rang the Bell today. This means she finished her last day of radiation, signed the guest book (how weird is that?), and got to clang a bell to signify the event. We are SO ready to stay home for a few days and eat our own cooking.

Speaking of which, Erin has a double batch of dark chocolate pecan brownies in the oven, getting ready for the CNCF bake sale tomorrow on the bridge at Texas Children's. Needless to say, someone else will drive these brownies to Houston. We are not going back until they make us (next Thursday. . .when she starts yet another round of topo/cyclo).

Sunday, November 30, 2008

Ways to Help--Part III: Lunch for Life

Our regular holiday season message is

GIVE UP YOUR LUNCH FOR ERIN.


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 http://erinproject.blogspot.com. If you would like to add anything to your already submitted information, you can send me an email (vbuenger@mays.tamu.edu) 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,

Luke

*********

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,

Teddy

**************

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,

Willie

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

Twillie

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 http://www.fivethirtyeight.com/ and nytimes.com 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: vbuenger@mays.tamu.edu; 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.

Friday, October 31, 2008

Thursday, October 30, 2008

Candidates Forum and Other Delights

October 30, 2008

What would you do, if you had risen at 5:00 a.m., driven three hours (mostly in rush hour traffic), sat for another four hours in a hospital waiting room with nothing to eat or drink since the night before, had a doctor sedate you and drill core samples with a corkscrew shaped needle from both of your hips, and driven another two and a half hours home?

Go to the Chamber of Commerce Candidates Forum?

That was Erin's choice last Monday evening, even knowing that she would have to climb back in the van a few hours later for another drive into Houston, so she could face another long clinic wait and the unknown of an experimental IV chemo infusion.


You've heard me say it before, but what Congressman has ever made a child smile more than Chet Edwards (TX-17) has? What Congressman would choose to spend all day the Saturday before election day with a non-voter (Erin will attend lunch and the Aggie game with Chet on Saturday)?

It's hard to tell exactly how Erin is doing these days. I usually have a pretty subtle insight based on her demeanor and outlook. Right now there's a lot of noise interfering with a true read. She still has allergy symptoms, especially when she first wakes up. She hasn't recovered completely from her bone marrow aspirations. The ten plus hours in the car on Monday and Tuesday have added to her general stiffness. The dexamethasone makes her hungry and accentuates the negative aspects of her personality. Her back hurts (although not really in THE SPOT that always raises alarms). Mainly, she's tired and a bit grumpy.

But not tired enough to fore go her concession stand duties at family fun night at Jane Long when we got back from Houston on Tuesday. . .or school the rest of the week. . .or piano lessons on Wednesday. . .or pumpkin carving last Sunday. . .or a fall festival party with Jackson and the Rosses last Saturday night. Last night alone, she made final preparations for her role in her science class debate over drilling in the Alaskan natural Wildlife Refuge, practiced her speech for her Day of the Dead project in Spanish, and added the final touches to her 3-D Invent-Your-Own-Continent project for social studies. Nor is she planning on missing Halloween festivities at the church, trick or treating, nor the haunted house at the ice rink tomorrow. And just try and keep her home from seeing the Aggies on Saturday.

Most of you probably have your hand on the receiver, poised to dial Child Protective Services. You think, here's a mom who knows that her child is tired and hurting and yet she continues to ride her hard and puts her up wet. Let me tell you that in all these choices, Erin rules the roost. If she want to stay home, she stays home; if she wants to make an appearance, she makes an appearance; if she wants to go, she goes. I'm just her vehicle. She still has things she wishes she could do, but can't right now. Most painfully, she is still sidelined from soccer, but aching to get back into the game.

I wish I could bottle her determination. It certainly inspires me. It probably does the same for you.

[cue swelling background music]

If you are inspired but don't know how to channel that feeling, here are two suggestions:

1. Go clean out a closet, or your garage, or the attic, or your storage shed. Find something that you don't use anymore, but that has plenty of good life left in it. Donate it to our garage sale.
You can bring the things you find to me any time in the next eight days (before Friday, November 7 at 5:00). If you have a good friend or two, ask them to do the same. If, heaven forbid, you love to shop garage sales, drop by 200 Bernburg Lane in College Station a week from Saturday and buy your stuff (or someone else's stuff) back.

2. Make yourself a cup of tea or grab yourself a cold one. Get out your checkbook or click on this link to Lunch for Life (all proceeds go to support neuroblastoma research through the Children's Neuroblastoma Cancer Foundation). Enjoy your beverage and make a donation (checks should go to
Children's Neuroblastoma Cancer Foundation/39651 Treasury Center/Chicago, IL 60694-9600).