No More Pins and Needles

July 28, 2006

Lash me to a pole and torture me. I have been home almost 18 hours and have not updated Erin's website. I could barely swim through the hallway this morning when I delivered Erin back to vacation Bible school without stopping to reassure inquiring eyes that our day had gone well yesterday. Erin, Nico, and I dragged our tired, but happy selves back into the Microplex around 5:30 yesterday evening. We brought with us news that Erin's scans remain stable, her counts look fine, and we will start round 8 of oral etoposide on Monday. We will scan again in three (or maybe four) months.

The staff on Erin's pod at Texas Children's Hospital have had a rough summer with new diagnoses and more relapses than usual, so I know that everyone was glad to see a very healthy appearing and very happy Erin Buenger come through with good news on the inside as well.

For any of you who might be interested in honoring Erin by supporting Neuroblastoma research, Nikki, a wonderful young woman is doing a fund-raising blog-a-thon starting
9 am (EST) Saturday, July 29. She will post updates every half hour for 24 hours and will feature different cancer kids and their websites.

Neuroblastoma is a very “under-funded” cancer as far as research dollars go, so your help is extra appreciated.

To read more about Nikki’s efforts and to make a sponsorship donation, go to:
http://bloggingforchristi.blogspot.com and click on “sponsor me.” On the next page, scroll down about halfway and you’ll see the details you need.

I have a bit more to pass on to you, but want to take you off pins and needles by getting this posted as soon as possible. I'll try to post again in a quiet moment this weekend. Until then, thanks for checking in.

Full Week

07/20/06

Erin's blood counts held steady over the last week, helping us to accept that the ditch we hit a week and a half ago was infection related and not tumor related. Everyone who sees her remarks how well she looks. Next Thursday's scans will, of course, show the truth, but I have not started the worryfest. Everything is going too well to run over that already flat rabbit again. Erin lives large considering she is in the midst of her fifteenth month in a row on chemo since relapse.

Last Friday, as the finale to her creative arts camp, Erin performed in the festive, yet poignant, production of "Fat, Fat Jehosophat!" She sang and danced and smiled the whole time. Now, I have to confess, what I knew about Jehosophat before last Friday would have fit in Erin's Barbie's thimble (that would be the now passé Seamstress Barbie). Apparently, Jehosophat was a righteous OT king who required prayer (sincere, heartfelt prayer) from his soldiers before battle. After praying and fasting too long enough to become "Flat, Flat Jehosophat (what a side benefit), his enemies attacked and vanquished each other. Now, I don't know if that sort of dedication could protect folks over in Lebanon or Iraq, but there is a good chance the prayers laid out by our wonderful friends at the Methodist church where Erin had camp last week kept the germs at bay. Pretty good deal!

Last weekend we did our usual weekend stuff, plus a couple of other things. The Tjoelkers made it back to town after their two plus week odyssey to Pittsburg, via Columbus, Ohio (hurray, we survived, although, unfortunately the triops didn't). They made it back just in time for our annual Christmas party Saturday night. Luckily, one of the boys received a new package of triops to start. Quelle coincedence.

Perhaps I toasted too many times on Saturday night because I was barely fifteen minutes into my soccer game on Sunday afternoon when I began feeling very unfit. I tried to pawn it off on the 104 degree weather, but no one was buying it. In the end, I didn't throw up; I did finish the game thanks to strategically placed water breaks; and we only lost 1-0 (our slimmest margin of loss all season).

Davis practiced hard at becoming a college student over the weekend. Rice requires incoming students to read several articles and summit two directed essays about the readings so that someone can determine which English class they should enroll in. They have three days to get it done, and (stereo)typically Davis took it down to the wire. Just when he was on the brink of having to submit a pile of c*&#, the Rice server experienced technical difficulties and the deadline was extended another sixteen hours, giving him a do over instead of the object lesson as I had hoped. Oh well, I have always said it's better to be lucky than good (though perhaps he'd be better off adhering to the corollary that it's best to be both good and lucky).

Wednesday found us heading towards Houston for a non-medical trip. Erin went to spend the day with Aunt Quin at her Education Through Music colloquium. I think they had a blast singing and cavorting and cutting up all day. Davis went along so we could travel in the HOV lane, and also to meet one of his new Rice roommates, Ryan. Ryan's going to run track for Rice next year, and being athletic is only one of many things they seem to have in common. I think it took a lot of the pressure and mystery away for Davis to meet his roommate face-to-face and discover that he wasn't a complete (or even partial) weirdo.

What's next: Davis is counting down--eleven more days of work. Erin has Vacation Bible School all next week, with a side trip to Houston on Thursday for scans. I am checking things off of my summer project list. Walter is looking forward to vacation; we head west towards New Mexico on August 5. Luke and Uma are already getting miserable at the thought of being left here without their people in the dog days of summer, and Willie, blind to that disaster, continues to wreak havok and create disasters of his own each and every day.

Pump Primed

July 13, 2006

Pat yourself on the back. For some reason, after sitting like a bump on a log at the bottom of a bog for three days over the weekend, Erin's white count put on the afterburners and returned to normal this morning (WBC--5100; ANC--2500. You read that right, her ANC is five times higher than it was three days ago.). And we owe it all you Erin Fans who put the big call in to get the pump primed for more bug fighting juice in Erin's marrow. Thank you!

This news relieves no one more than yours truly, who made the call to send Erin to camp this week with 130 other kids. Normal counts today make me look brilliant (and of course, much loved by Erin who would have gladly punished me soundly had I kept her at home all week waiting for definitive news). Had they stayed put, I would have looked stupid and perhaps abusive. What a narrow line cancer parents walk between protecting their kids so they can live and letting them live.

As it is, Erin (I assume, I haven't actually talked to the doc yet) is back on chemo and set for the next two weeks, until we return to Houston for scans. I have been warned that I need to bring a video camera to the camp finale performance tomorrow night to capture Erin's dance. Alas, the highly technical, but gadget-poor Buenger family doesn't own a video cam. Once again we must depend on the kindness of strangers to record the important moments in our lives. We are also expecting the arrival of Walter's sister from California. Hurray!

I have put a picture of Erin with Chet Edwards here, and will also add the link to the photo page.

No Rebounds

July 10, 2006

Things seem a lot quieter around here today. Both sisters and both nieces returned to Garland yesterday. We've shoved the extra mattresses back under the beds, taken Raffi out of the CD player, and returned the borrowed baby equipment (and managed to do it without renting a U-Haul). Erin had great fun with both Emma and Annabelle despite the large age gap among the cousins. We kept it pretty low key for the Fourth of July, but did manage to get some swimming and movie watching in later in the week.

I really had few expectations about Erin's blood counts last Friday. I thought we might see high numbers inflated by antibiotics or steady numbers since we were early in this cycle of chemo. I never expected borderline neutropenic (ANC=500) and self-imposed house arrest for the weekend. I made the tech run the sample a second time (ANC=400). Oops. I talked (bribed) Erin into a venopuncture (ANC=300). Double oops. I tried to convince myself that I just caught her in the trough following an illness and that Monday would bring better number. I even entertained the thought that the machine had validity and reliability issues.

Erin did not take the news well. Believe it or not, Erin was invited to a birthday party on Saturday (not unlike every other Saturday for a long time). Walter and I played the heavy and made her stay home. We rented Wallace and Grommit and some other less palatable kids films. We tried to remember the rules of neutropenia (the only one that readily came to mind was the one about repeat handwashing, so based on the notion of cleanliness being next to Godliness, we proceeded to act like obsessive-compulsive handwashers for the next three days).

We returned for more blood work this morning, convinced we were going to see the biggest rebound since Dennis Rodman retired from the Detroit Pistons. "Uh oh." I looked the print out and then at the technician. "Did you hand me the results from last Friday? These look very familiar. . .Oh, these are today's?" Seeing numbers in the same ranges as last Friday left us with a tough decision. Do we continue the self-imposed house arrest or let Erin attend Creative Arts Camp? What would you do? We armed her with her own personal bottle of hand soap and sent her off to camp. We'll check her blood again on Thursday. In the meanwhile chemo is still on hold.

What does this all mean? First, it makes us a little nervous to delay treatment for a week, but we did it last fall when Hurrican Rita closed down the clinic with no ill effect. Since we have scans scheduled in a little over two weeks, I don't think the decision will have much effect and will hopefully give her counts a chance to recover on their own.

Why did her counts fall? I have three thoughts about that. 


1. Erin has been sicker then usual this summer (first the lung gunk (post Disney) then the ear infection (post DC trip). Her immune system may just need time to recover. 
2. We have been poisoning her with chemo for 14 months ,and her immune system has taken a hit and will continue to drop lower and take longer to recover, regardless of the number of germs she encounters. 
3. Something (tumorwise) is going on causing her counts to drop.

At this point I am pulling strongly for #1, discounting #3 because her other counts like hemoglobin and platelets are normal and don't seem to be crowded out by tumor cells in the marrow, etc., and hoping we don't have to face either #2 or #3 ever or at least for a very long time.

I checked on thomas.loc.gov this weekend and was pleased to learn that Chet Edwards, true to his word to Erin, joined the list of Congressional co-sponsors for the Conquer Childhood Cancer Act of 2006. If your representative is not on this list, you should write or call them and ask why not.

I'll close for now, but will not leave you hanging for a week or ten days before I update the status of Erin's immune system.

Where Is Lassie When You Need her?

July 1, 2006

Clinic went well on Thursday. Erin checked out fine for another round of oral etoposide (we'll scan on July 27 to check if Erin's lung gunk has resolved and if the tumor is still cooperating). The nurse practitioner also found two infected ears, which explained Erin's somewhat sluggish week. I promptly announced a moratorium on plane trips for the rest of the year. Erin has picked up some sort of floating virus both times we've flown in the last month, and given her compromised immune system, I think it best to avoid the germs.

Despite her less than stellar health, Erin made it to three days of music camp this week and has thoroughly enjoyed Mary Beth and Rachel, who are visiting their grandparents (who live next door). Their visit has taken the edge off of Nico's departure for an almost three week trip to the northeast. We are babysitting his triops (and Elaine, if you happen to check the website while you are gone, try to prepare the boys for there being one fewer triop than when you left. The smaller one died overnight on Friday.).

Aunt Kat and Emma have managed to fit in another trip down to Bryan, and if things work out, we may get to keep Emma for awhile. Luckily, she is a sweet and low-maintenance girl, because odds are, I have forgotten even the basics of toddler care. It may be just what I need to get back into the swing of things. Here is the latest Vickie funny. Last Saturday Erin went to an out-of-town birthday party all day. Davis worked, and Walter drove to a family get together in Taylor. I can't remember the last time I had the house to myself on a Saturday with nothing important hanging over my head. I had the day mapped out in my mind, starting with spreading wet newspaper in a flower bed I planned to rehabilitate. Within minutes of starting, I turned the wrong way and got stuck on my hands and knees in the middle of the back yard. By some freak accident, my back no longer supported me, but instead became a throbbing set of spasming muscles. Willie thought I had dropped to my knees to play with him, so he didn't listen when I asked him to go get my mother next door. I think he saw my pleas as a request for face licking and crotch sniffing, which he complied with cheerfully. Where is Lassie when you need her? Eventually, my mom did go into her backyard to do some watering, and I got her attention and with her help eventually hobbled inside. I have had to take it a bit slow ever since. Each day I have improved and am hoping to convince Walter that I am fit for my soccer match tomorrow night.

Speaking of soccer, most of you probably think that Davis has finally put soccer behind him. Not true. He got picked up by Arsenal in the local Division II league and had two games this week. On Thursday he netted the go ahead goal in a tight game with a left-footed shot that rivaled Maxi Rodriguez's beauty in World Cup play last week. Speaking of which, Davis and I put our fandom behind England after the US failed to qualify. They went down on penalty kicks this morning, losing to Portugal. Rooney's mom should have taught him that stepping on an opponent's crotch was bad manners, then he would not have been ejected from the game at just the wrong moment. Oh well. I guess we will switch loyalties yet again. What do you think? Germany? France? Brazil? Italy? Definitely not Portugal.

Several people have asked if I really thought Chet Edwards listened to us. Some even implied that he may have just been a skilled politician. I'll let you decide. Erin received a handwritten letter from him this morning:

Dear Erin,
It was a joy and inspiration to meet you, because you are a beautiful girl, inside and out!
I have told my wife and my two sons, J.T. (10) and Garrison (8) about you and maybe some day when we are in Brazos County, my family and I can take you to lunch and J.T. can introduce his teddy bear to yours.
Until then, thank you for coming to visit me and please know that you will be in our thoughts and prayers.

Your Friend,
Chet
P.S. What was your teddy bear's name?

He also included a large photo his staffer took of him and Erin in his office last week. He signed it:

To Erin,
I believe God smiled when he brought you into this world. Your courage and sparkle for life have touched my heart. As my new friend, you will be in my thoughts and prayers, always! Chet Edwards

I also learned in an e-mail from his director of constituent services, he has also instructed his staff that any mail he gets from Erin goes directly to him without being opened or screened by anyone. He has also secured one of the flags that flew over the capitol the day we visited and is having it sent to her in honor and remembrance of her visit. Perhaps he is a skilled politician, but he seems like a kind man to us.