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


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).


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.


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).