Friday, February 27, 2009


February, 27, 2009

I think I will take the weekend off from desk work (other than end-of-month bill paying, which, I suppose, I can't avoid), so I thought I should post an entry before I logged off. Erin has definitely made positive progress after three radiation session. Her breathing and coughing have improved, and we are easing back on the pain meds to see if she has also gotten better on that front as well. Less pain medication will translate into greater lucidity, which will improve her outlook immensely. She will have five more sessions next week, then we will re-evaluate and see what happens next.

We spent part of the afternoon sorting out lanyards and how to proceed (Our stock is up to a couple of dozen so we ought to be able to fill most standing orders soon). We have some made for folks who had particular parameters (colors, length, etc.). I will contact you directly, in person, by phone, or by e-mail, and let you know how we will handle the delivery. For those of you who didn't express particular preferences, we have taken photos with batches of lanyards. I will send the photos to you by e-mail (or if you have facebook, they are on my site, and I will friend you if you need me to). I am doing this sequentially in the order the lanyard requests came in, so different people don't claim the same on-spec lanyard. Once you have adopted a particular one, we'll make a plan for delivery.

Thursday, February 26, 2009

Exactly What President Obama Needs

February 26, 2009

This morning I realized the "Gold" no longer worked for Willie. Not even two months into our experiment, Willie has spurned roasted turkey cubes in favor of a good, long explore under the abandoned trailer down the road. I tried to lure him out by feeding Teddy hers and exclaiming what a good dog she was. I even gave out the gold to Willlie's weimaraner friend, Jade, who actually can't perform any gold-deserving tricks, just to get Willie's attention. Nope. Nothing doing. I may have started the morning walk with a lot on my mind (how do you decide how much narcotics to give your 11 year old so she can breathe during radiation without taking the edge off her Wii skills for the rest of the day), but Willie re-focused me on the important details: how could I outsmart a dog who wouldn't take the bait? Would I ever make it back home to my first cup of coffee? Why did I leave the security of my kitchen without my coffee in the first place?

I finally had to give up the pretense that Willie would ever come out from under the trailer on his own accord--just because he wanted to please me, just because he heard my melodious voice singing out "Willie come," just because I had morsels of delight waiting in my pocket to reward his obedience. I groped up under the trailer, dragged him out, and clamped the leashed on his collar. The look in his eyes said, "I love you," but also "Officer, what seems to be the problem?" He pranced home on the end of the leash, clearly not missing any chopped and smoked poultry pieces that may have been his right in other circumstances.

I settled in at the table to glance through the paper and enjoy my coffee while Willie went off to lie by the sliding glass door to monitor squirrel troop movements. I read that Barack and Michelle Obama had their eyes set on a rescued Portugese water dog to fulfill their promise to Sasha and Malia for a new pet in the White House. I laughed out loud. Actually I chortled. My first thought was, I'm glad they didn't select a Rhodesian ridgeback as their dog of choice. Then I remembered Scupper. Some of you who read this page might remember Spencer Dolling's
Portugese water dog, Scupper (some of the best Scupper stories are on the back pages of Spencer's caringbridge site. Try searching for "Scupper" in that link to find stories of purloined fresh salmon, stinky smells, and mayhem) . Scupper may be the only dog in North America (he's Canadian) who made bigger messes and caused more problems than Willie. I swear both these dogs make Marley look like the model pet.

Soon, like me, President Obama will have something to take his mind off those petty concerns like failing banks, a stagnating economy, and an expensive and unpopular war. He will have a Portugese water dog.

Erin had her simulation and first radiation session yesterday, and we've already made it home from this morning's session. I can tell already that her breathing has improved and her cough has stabilized. By tomorrow, I hope her back pain will start resolving and that she will regain some energy. The steroid she is taking to reduce swelling in the area has ramped up her appetite, so I need to go and make some chili mac for the starving child.

Tuesday, February 24, 2009

Relief on the Way

February 24, 2008

Luckily, everyone got on the same page about Erin's breathing/coughing problem. . .maybe because it became so acute so fast. She has not been able to lie on either her back or her front for the past two nights (this makes falling asleep a challenge even for the most intrepid sleeper) and did not even think she could walk from one end of Jane Long to the other (we had secretly been hatching plans for Erin to be pushed from class to class on a rolling teacher's chair by one of her friends so she could make it to school). Erin's Houston docs got with the Bryan radiation oncologist, who got us in for a consult and some measurements this afternoon. It did take about three hours and some heavy medication to get Erin comfortable enough to lie back under the machine so they could do their job. Tomorrow's simulation will be another challenge, but after that the sessions ought to get easier each day as the radiation does its job. We also drew the bonus of a twelve minute drive to the appointment each day, rather than a 2.5 hour drive each way.

All I can say (in true Mardi Gras spirit) is Laissez le bon ton roulez.

Sunday, February 22, 2009

Up and Down with Erin Buenger

February 22, 2009

Despite advice to the contrary, Erin chose the bus ride to Houston over the personal day on Friday.
She thought it was great to go to Houston and not have to go to clinic or the hospital. The 8th graders went to the Body Worlds exhibit. She, Sandy Schwalen, and I had seen that show in December. Really weird! The 6th graders looked at the other exhibits at the Natural Science Museum (most of which Erin has viewed numerous times. She saw one new one called the "Wonders of the World," which was a photography show.

Luckily, I made the decision to follow the bus down to Houston (just in case). This gave me the chance to have lunch with Davis in a non-hospital setting. By 2:00, Erin had burned her wick down pretty far and opted to ride home with me in her usual, luxury-appointed captain's chair with City of Ember audio book playing in the van rather than seated on a vinyl bench seat of a district bus with "100 Bottles of Beer on the Wall" as the audio accompaniment on the ride home. Beyond the obvious reasons this was a good call, her bus didn't leave for home until the exact high tide of Houston traffic (a student on the trip had to make a trip to the ER for a very minor injury, but most of you reading realize that "minor" in the ER often translates into a long stay because more "major" traumas get pushed ahead of you). We got home in time to walk the dogs, have some dinner, and get on with the evening. Everyone else on her bus arrived home two and a half hours later (at around 7:00).

Erin had little steam left most of the day on Saturday. She did manage to make it to Barnes & Noble to spend some gift cards, so she wouldn't have to be totally bored as she lay about the house. This is likely to become a more common occurrence. Erin's lung is doing her no favors. The pleural effusion on the bottom right side has persisted. It hasn't spread too much, but it has developed some crackles (at night, when everything has gone quiet, it's like sleeping with someone holding a bowl of Rice Crispies). She has also developed some pressure higher up on the same side, most likely from tumor progression. This is new and is causing her some labored breathing and coughs.

With forced rest much of the day, Erin had enough steam to host a Wii party for Jackson, Aaron, and Jesse and their folks. The kids Wii Played, Wii Sported, and Wii Fit for about five hours, while the adults ate, chatted, ate some more, drank, and beaded lanyards.
Don't despair if you have heard nothing from me about your lanyard order. We are picking up steam, it's just that Erin can't work marathon sessions, so we have to pace ourselves.

Folks, we have hit a rough patch again, as evidenced by the number of times per day we have to visit The Erin Project for affirmations. If you meant to join the project, but thought too much time has past, please consider this your personal invitation.

Thursday, February 19, 2009


February 19, 2009

A necessarily short post this evening. I meant a longer one with photos and wit, but somewhere around the tenth hour of my day trip to Houston, I decided all you were going to get was a mini-entry.

Erin had a clinic appointment in Houston this morning, and we scheduled it early, so she could spend the rest of the morning and into the afternoon doing a photo shoot in the Ronald McDonald Room at the hospital. This was the first session to provide the artwork for a new cookbook that Erin is writing. It will have recipes that kids can cook even if they are stuck in the hospital (no stove or oven). Some of the recipes are fairly simple and a pre-schooler with some assistance could have a go at making and eating them. Others have, let's say, more complexity. The proceeds from the sales will go to support more research for pediatric cancer. That's her plan, and I'm sticking with it.

Anyway, Erin made frozen fruit salad cups, key lime pie, and guacamole for the camera today, and ran out of time to make twice-baked potato cuties. Kim Christensen did the photography, and I will be excited to see how they look. She did a fantastic job under primitive and interrupted circumstances.

Erin had looked forward to the day for a while, because, well doing a photo shoot sound exciting and possibly even glamorous. I think she imagined it more like sports photography, where she would be in the kitchen doing her thing, and the photographer would walk around trying to catch the right shot. Instead, it was more like "let's pretend to cook" so the photographer can get the angle and light right. Both my kids are all about expectations and things going according to (their) plan. Needless to say, it wasn't exactly what she expected. When she had to cut things short (not getting to the potato dish she had planned) because she had been recalled to the clinic for a hemoglobin transfusion, I knew better than to try and jolly her up. At that point it was merely a matter of surviving the day. This does not even count that the transfusion pushed our departure back so that she missed fencing (the first night with real foils).

She's asleep now. Tomorrow will be a better day. I think she plans on boarding the bus at school and driving back to Houston (within three blocks of Texas Children's, actually), to go on a field trip to the Natural Science Museum. Since we were just there in December, I might try to talk her into taking a personal day tomorrow, to get over her twelve-hour extravaganza today.

Monday, February 16, 2009

Once Upon A Time

February 16, 2009

Leicester, England
Rubber Plantations
London Model
The Who Drummer, Keith Moon
Skin Care and Facials
Ian McLagan
Red Hat Ladies of Austin
Jane Long Middle School
Wii Fit
Erin Buenger

Now what if I asked you to write a coherent story that connected the items in this list? It starts, "Once upon a time. . ." Can you finish it?

Here, let me help:

If you know the online game, Funny Farm, these places, people, things, and concepts would form a network of connections around the central key word, Kim Kerrigan (if you don't know Funny Farm, I promise you are really missing out on fun and distraction, and you should stop right now and give it a try.).

Did you Google Kim Kerrigan? If you did, you probably went to a Wikipedia article about her. That would help you write part of the story (up through "Skin Care and Facials"). Let me help you with the rest. Kim Kerrigan McLagan lived a full and vital life. A little over two years ago she died suddenly in an auto crash. Her impact on people was profound and long-lasting. A group of people who knew her (but did not always know each other) formed a group to keep her spirit alive. That group, The Red Hat Ladies of Austin, heard about Erin through a connection they had with a teacher at Jane Long (Erin's school). They decided that to help Erin with her goal of getting back into shape, so that she might return to competitive soccer someday, they would present her with a Wii, Wii Fit, and a full range of accessories so that her friends could support her in her goal AND have fun with her. They want her to continue to conquer the world with her smile and wit, much as their dear friend Kim did.

These wonderful folks, whom we have never met and who we may never meet, arranged the surprise for last Friday afternoon, shortly before the school dance. Erin is not speechless very often. Friday at 5:35 she was. As she pulled the paper back on the first box, her stunned look and flushed cheeks said it all. Eventually, she stammered, "Mom. . .mom. . do you know what this is?"

Here's how it went, step by step (I recommend clicking on each shot to zoom in and see the facial details):

All I could say then and all I can say now is "Wow!"

Why did I wait until now to post this entry? Well, Erin did have the Valentine's Dance about to start. Then, we had to run up to Dallas (only two hundred miles) on Saturday morning for cousin Emma's Pump It Up four-year-old birthday party.

No, it wasn't as calm and private as these two shots imply:

As one thing leads to another, being within an hour and a half of Clayton Sue's house, we felt moved to drop in on the Benson's in Fort Worth on Saturday evening.

Katherine (my sister) and Emma (the newly anointed four-year-old) returned with us to Bryan on Sunday, just in time to have Erin's buddy, Jackson, come over and help her set up the new Wii. They managed create their Mii's and bowl a line before we rushed off to meet another group of angels.

Some fine folks at St. Francis Episcopal Church heard about Erin's lanyards and asked us to come an teach a workshop, so they could make lanyards and raise money for pediatric cancer research, too. Boy, they did beautiful work, and while we shared the work, we shared some fine fellowship. At one point, I was explaining to the group how to know that you could stop adding beads and go to the finishing process. I wrapped a partially beaded wire across the back of my neck, so that the front two ends hung in front, and said, "most people would like their lanyards to come down about even with their bosom."

From across the room, I heard, "twenty or fifty?"

I, thinking 20 inches would be too short and 50 inches way too long, looked confused and said, "I beg your pardon."

The woman said, "Should it hit the bosom of a twenty year old or a fifty year old?"

Rim shot.

Anyway, we returned to regular programming this morning, with Erin not looking or feeling real great when it was time to get up for the start of a new school week. I hope it was just van lag (or whatever you would call it when you get hauled up and down the road all weekend). I think I may drop by for blood counts after school, since I have had a difficult time distinguishing Erin's lips from the rest of her pale face for a couple of days.

I always get in trouble when I start mentioning the kindnesses that people do for us, because we are touched by so many friends. Aaron and Jesse gave Erin carnations at school on Friday because they are great buddies. When she got home Friday evening (she ate so much and danced so hard that she accidentally threw up at the dance and got sent home early), a candy and flower arrangement from her retired historian friend, Jim Smallwood was waiting for her, just in case she needed to replace the calories lost from dancing and vomiting. The inestimable Bate family, who gifts Erin on so many special holidays, had another lovely box of surprises waiting for her when we got back from Dallas. There is absolutely nothing I can say to express how loved these action make us feel, so I will just say thank you.

Friday, February 13, 2009

"Worst Day of My Life"

February, 13, 2009

Erin came home with a cloud over her head after school yesterday and pronounced that "Today has been the worst day of my life." She proceeded with a litany of complaints:

"Someone stole both sets of my gym clothes;"

"We had to write an essay in math class. . .imagine writing in math class. . .you're supposed to do math in math class;"

"I had a Spanish test that I completely forgot about;"

"It was hot in social studies, and Mrs. Williams made us keep the door closed so the 8th graders wouldn't make faces at us when they walk by to the cafeteria;" and

"I got ten points off on my art test because she said I didn't write half a page on my essay."

I could bare keep from laughing in her face. For a girl whose life over the past six and a half years has been a parade of chemo, radiation, surgery, et cetera, et cetera (as the King of Siam said), this day of stolen gym clothes and other junior high foibles is the worst day of her life? Any middle school teachers out there? Doesn't this sound more like "typical" than "worst?"

Interestingly, she got over it and went to fencing. Then, afterwards, when I was carting her and Jackson to the ice cream parlor for a post-en garde treat, she wound up her angst yet again, and did a encore recital of the "Worst Day in My Life" for Jackson's benefit.

After we dropped him off, she said, "I always love to complain to Jackson. He always agrees with me."

Funny thing is, while yesterday may have registered as a completely bad day by Erin's standards, today is likely to rank really high on the other end of the spectrum. Some ladies have a surprise planned for her after school that ought to jerk her quickly back in the other direction.

Tuesday, February 10, 2009

Back to School

February 10, 2009

I saw the stat counter climbing, so I knew a few of you wondered what became of Erin. Since she didn't run a fever and since she insisted on returning to school this morning, I let her go. . .even though I thought she looked like grits that had sat out on the table too long. My spies reported that she started off pretty slowly but perked up as the day went on. I even heard she was laughing with her usual lunch crowd in the cafeteria (this is good on two counts: eating, of which there hasn't been a lot in the past couple of days, and laughing, which truly is the best medicine).

We had planned on getting a CBC after school here in town, but the technician who usually does it was out, and the nurse thought we might want to avoid the accumulation of sick folks at the clinic. We agreed and took a pass until tomorrow.

Erin came home and ate second lunch or first supper, worked on her animation project for tech aps, and sat on the porch a while reading. Now she has cozied up with Teddy to keep her out of the kitchen.

I must be going for housekeeper of the year: the 5:00 whistle blew, and I am still scrubbing away on the kitchen and dining room floors on my hands and knees. Well, I took a break to post this entry, but I have just one section left. I am considering duct taping the dogs to the wall to keep them from walking on my floor, so that it might stay clean for a few hours.

Monday, February 9, 2009

And Slowing It Back Down

February 9, 2009

Alternative Title: I'm Skipping Sunday From Now On

Despite the upbeat, pump-it-up, keep-the-party-going post I wrote yesterday (scroll down if you missed it), things did not unfold on the same trajectory. Yesterday was the fourth Sunday in a row that Erin has felt punk. The first (back on January 18) she had the early effects of the pleural effusion. Then came two back-to-back Sundays with (what did the Victorians euphemistically call it?) dyspepsia. Yesterday, Erin looked like warmed over gravy as she stood singing the anthem in church, then she spent most of the afternoon on the sofa with a book. An 8:00 bedtime told me I couldn't just blame my imagination or the fact that she insists on burning the candle at both ends. This morning she woke with body and joint aches and a headache. I sent her back to bed.

She has rallied some, enough to eat a bit, knock off some homework, and of course, play some computers games. I also snapped a couple of photos to show you her new look. Her eye exam last Monday revealed that she is the smallest bit farsighted. Seems the extra screen time that a personal Macbook engenders was enough to strain her eyes and give her headaches. Thus, the $8 reading glasses from Walgreens (just for close work):

Oh yeah, and that is a trace of hair you see.

Sunday, February 8, 2009

Picking Up the Pace

February 8, 2009

Before Christmas, when Erin started feeling better and again in early January, when we had decent scan results, Erin expressed the desire to get more active. Wish granted.

It felt like old times this week:

Wednesday: school, student council, fused glass workshop, homework
Thursday: school, UIL practice, fencing, homework
Friday: invitation to Jackson's house, Bryan High production of "Little Shop of Horrors"
Saturday: UIL meet (five events, two ribbons), Toni and Sandy over for lanyard making and play
Sunday: sang the anthem in a quartet at church, rest (finally)

This week we get another wish granted: no trip to Houston this week, just a CBC drawn locally!

As for the lanyards, I have built a spreadsheet of orders, and we are working through it. For those of you who live out of town, I will take a break from my duties as Erin's social secretary and chauffeur at some point this week and email you more information and instructions. What we really need is just a skosh of patience. We will honor every single request and would love to have even more requests. Just remember that each lanyard is personally and uniquely designed and takes more than a minute to make.

Wednesday, February 4, 2009

Clinic Was A-Okay

February 4, 2009

Not much to complain about clinic yesterday. Erin had decent labs:

HGB 9.4 (dropping, but okay)
WBC 5200 (normal)
ANC 4600 (normal)
PLT 157,000 (barely normal)

Overall, not bad for two weeks deep into chemo. Erin's calcium stayed up, thanks to her cooperation on the nightly supplements (and thank goodness we can stop them!). The best news was that apparently, Erin's liver wasn't feeling as prickly and insulted this week as last week. Her liver panel does still indicate some inflammation, but both her GGT and her ALT headed down, for which I was relieved. Erin's lung has not miraculously drained itself, but Dr. Russell thought it was about the same as last week (not worse being better than worse).

Because her liver numbers had not skyrocketed, Dr. Russell felt comfortable adding another drug with ant-tumor potential to the mix. Erin will start Valproate this evening and over the next few weeks increase the dose so that we might see a therapeutic effect. For those of you keeping score, our made-up cocktail is etoposide, celebrex, zometa, and valproate (all oral, except the one fifteen-minute/month zometa drip). This combination guarantees that I will never know what side effects go with what drugs.

We also got to see Davis for a brief ten minutes. He came over to clinic to pick up his new phone. I didn't remember he had a 3:00 class, so once again it was a kiss and a hug, a quick exchange of instructions, and then goodbye.

For Erin, the day ran smoothly, thanks to many of you. You may not know it, but Mark Dungan tracks every $5 donation you make to Lunch for Life. In addition to hanging an ornament on Erin's virtual Giving Tree, he issues gift cards to Toy R Us every time you fill up her tree. Erin got her gift card recently and put it with the one from the previous year (and a little cash out of her stash), and bought herself a Nintendo DS. This was an unheard of extravagance at our house, and it really made the time pass quickly.

Erin had a big day today, with an INQUIRE Academy field trip to the Presidential library to see the space exhibit and the special show about Buffalo Soliders (so called because of their strength and courage), as well as student council, homework, and her fused-glass jewelry workshop. How she keeps it all going is beyond me. I think fatigue is a side effect on everything she takes, except her multivitamin.

Monday, February 2, 2009

Lanyard Blitz

February 2, 2009

I actually don't get Groundhog Day, probably because I live in Texas and cannot fathom six more weeks of winter. . .but
Punxsutawney (punx-suh-TAW'-nee) Phil is a cute enough fellow. People in snowy climates seem to depend on him, so who am I to comment one way or another?

I have a confession. I walked next door to check on my mom about an hour ago. She had missed lunch at Gina's yesterday, suffering from the full effect of the blooming cedars (some people around here call these evergreens junipers, but those who do are probably still relying on Punxsutawney Phil's prediction of six more weeks of winter) on her delicate sinuses. This is an annual event, and it also makes her feel miserable. I went over to offer her some sympathy and ended up making her feel worse. You see, she said she was also suffering from some other non-allergy/non-sinus-y symptoms, and I practically fell out of my chair cheering and saying things like "that's great!" and "wonderful news." Why? Erin had the same things going on last night and this morning, and without confirmation that she might have picked up something contagious, I was really having a hard time dismissing the idea that the symptoms were somehow related to disease progression, pleural effusion, and/or an insulted liver. I was so happy, I dialed Walter on the cell and interrupted his lunch with a colleague to share my "good news." I think my mom was looking for less celebration and more commiseration. I felt a twinge of guilt for that, and a bit more of a twinge for sending Erin on to school after her eye doctor appointment this morning.

Okay, so no good mother awards today. I sent Erin to class with some unidentified contagious disease AND wearing sunglasses and unable to read small print because her eyes were still dilated from her eye exam. I did stop at Walgreen's and buy her some real sunglasses so she didn't have to wear those doctor-issued curly ones that don't stay on--even if you like the fashion statement and want to wear them.

As I was looking through the last few weeks of entries, I noticed that except for the school pic I posted on Friday, I have really slacked off posting photos of Erin (over three weeks). So here are some bonus shots. The first two are the quiche Erin made for Walter's birthday.

The second two are of the work party on Friday night when Erin and Leslie Borski got after the glass bead lanyard project.

We stopped by Mary Branch Elementary (Erin's old school) after the eye doctor appointment to deliver a special order lanyard to Mrs. Pope, and because Erin happened to have some lanyards made on spec handy, she caused a little lanyard sales blitz and quickly sold out. We still owe quite a few special-order lanyards to our friends (Laura K., Michelle B., Diane N., Josh D., Bev D., Nick B., plus four others for Leslie B. Also, an eyeglasses chain for Joanie F.). If you have requested one and you don't see your name in parentheses, could you drop me a note and remind me what you want? Erin has raised over $300 for the Children's Neuroblastoma Cancer Foundation selling lanyards in the last three weeks. Thank you for supporting her efforts!

And if you don't yet have your own custom-designed and built, handy and attractive badge lanyard, place your order by comment below, facebook, email, phone, or in person. Saturday we re-supplied ourselves for the next lanyard-making push. Does anyone want to have a beading party this weekend?

Erin has student council after school today and Wednesday (with much to do before the Valentine's Dance), clinic in Houston tomorrow afternoon, and UIL and her first fencing lesson on Thursday. Thanks for stopping by and for all the affirming comments and support Erin fans so generously give.