Running, Kicking, Tackling, and Laughing

November 15, 2004

Ack! It's been almost a month since I last updated. Sorry to keep you waiting.

School is rocking along, quickly but surely. Both Davis and Erin had outstanding report cards this six weeks--this despite Erin missing nine days of class and Davis having to fend for himself for an entire week while Walter and I stayed with Erin in Houston. We are so proud of both of them!

Since I last wrote, Erin has recovered from surgery completely and resumed all of her regular activities. One of her first soccer games back, the Knights took a shellacking by a team that was clearly bigger, stronger, faster, and more skilled at every position than we were. On the way back to the car (thinking that Erin might be a bit discouraged by having so many players dribble by her or pass around her), I ask Erin if she wanted to switch to a girls team next year. She looked at me like I had gone completely nuts and said, "No way, mom. I'm sticking with this team. These are my friends, and until they all quit I'm playing on this team."

In the final game last Thursday, Erin played a position we call "raptor," but to most aficionados would be a "stopper" or "defensive center midfielder." At least four times, players on the other squad knocked her to the turf--twice straight back on to her back. Did it scare me? A little. Did it phase her? Not a bit. Did she stop the ball and keep the other team from scoring? Every time. Those Knight really impressed me--from Jackson's rumble down the middle of the field to score his first goal ever, to Nico's gazelle-like strides as he chased down another ball along the sideline where his grandmother looked on and cheered, to Josh's fierce concentration on every play, to Dustin's quick put back when he saw the other team's goalie set the ball down, to Tori's unflagging effort in every, single minute she was in the game, to the beauty of Devin's natural God-given talent as he dribbled the ball towards the goal, every time he touched it, to Noah's delighted face when he made a steal and sent the ball headed to our end of the field, but mostly when I saw Erin Buenger--running, kicking, tackling, and laughing with her friends.

Erin has also continued practicing the art of storytelling for UIL. The big competition comes this weekend, and I think she is ready. I'll keep my fingers crossed.

It looks like the Buengers will have a couple of weeks respite from soccer. Davis's adult season ended couple of days before Erin's, and his high school team won't begin after school practice until the week following Thanksgiving. Wee hee! What will we do with all the free time? Erin has her plan, of course. It involves a large four-legged animal and a newly borrowed saddled (thanks so much Mary Helen, you have made Erin's year!). She starts horse back riding lessons on Thursday! Davis will begin practicing and studying for the Federal Reserve Challenge, an economics competition that will take place in February (when you are supposed to be an expert about something as complex as the country's economy, it doesn't hurt to start early). I guess, I will just grade more papers. That seems to be my lot in life.

For those of you keeping track--scan week will start December 7.

Before I close. . .Congratulations to Nico and Adam, new big brothers to the darling Ian Tjoelker. We are happy to have a new addition to our extended, adopted family.

Recovering

October 19, 2004

The Buengers have all recovered and are feeling much better now.

Erin has enjoyed being back at school immensely. For the last month she and several other students have been practicing for the UIL storytelling team. Yesterday was the tryout, and today Erin learned that she was one of three students chosen to compete in November. This has taken her mind off having to sit out of her other activities. So far, she has been pretty patient about getting back to soccer and dance. The real test will be this evening when she attends (but does not play in) a Knights soccer game. She is already in her uniform. I hope she doesn't try to trick me into letting her play. We also stopped by the dance studio this afternoon, during her regular rehearsal time. All the girls and teachers were happy to see Erin though we didn't linger long.

We finally heard from Erin's oncologist, Heidi Russell, this afternoon. As we suspected, the pathologists did not have much to add to their original report on the surgical biopsy. The surgeon removed the mass with good margins (healthy tissue encircling the mass) on all sides except the bone side (we didn't want to take too much tissue there and have spinal instability). We are hopeful that the surgery will take care of everything. We will go to Houston for scans between December 7 and 10, and will know more then about whether we have nipped this problem in the bud.

Erin's surgeon will check her out and remove her stiches on Thursday. If all is well, I think he will clear her for action. If so we will see you on the pitch on Saturday, as the Knights take the field with Erin back as team "raptor."

Sidelined

October 14, 2004

Sorry for the break in updates. The whole family took ill after we returned from Houston. Erin started with a stomach virus on Sunday, followed by Moo on Monday morning, and Davis and I Monday night. Walter held out until Tuesday night. We all recovered fairly quickly, although Erin's symptoms lingered longer. I guess because she was already a little weakened from her hospital stay last week.

Erin returned to school on Wednesday, and according to her teacher, the class spontaneously burst into applause when she walked in. I can tell you this really made the transition back much easier. She made it through the school day just fine, but by the time I picked her up she was one tired puppy.

So far, she hasn't noticed sitting out of soccer much. Monday she felt too bad to care, and Tuesday I felt that way myself. Next week will be the true test. We will practice on Monday and have a game on Tuesday, and no doubt she will think being sidelined in UNFAIR. By the following Saturday's game (October 23) she will be cleared for action!

Walter and I celebrate out wedding anniversary last night (20 years!). We all felt well enough to eat dinner together (a big breakthrough this week), but we are saving a night out on the town for later. Some of you might remember that when Walter and I first married, we committed to 64 years together (the same as his grandparents) before we were going to consider other options. We are still sticking with that deal!

All of our FPC friends should remember that this Sunday is our big celebration event for the Capital Stewardship Campaign. Let me end by quoting an e-mail I received this morning. It really speaks to the love we are surrounded with on a daily basis:

"To tell you the truth, every person in that church is pulling and praying for Erin and your family with all our might. One part of me says we could forget everything else and ask Erin to stand on a chair up front on Sunday and say, "We are trying to build a facility that Erin can grow up in and proudly bring her friends. What can you do to help?" That would seal the deal in a very few minutes."

Post-Op

October 9, 2004

Home at last! We rolled into town around 4:30 this afternoon.

October 8, 2004

Well, we are still in Houston. Erin's drain is still leaking a little. Maybe tomorrow will be the day.

I got up very early this morning and drove in to CS to teach. My students have been so gracious and patient with my unplanned absence this week. This is the first time in all the times Erin has spent in the hospital (more than 80 days total) that I have left her all day to do something else. I left her in the able hands of her dad and Aunt Kat. I think they had a great time without me. Nico and Adam slipped over from Bryan with their mom Elaine, which really pumped up the party. I think there was a lot of puzzle working and game playing. Nico and Adam's dad, Mark, kept me company on my drive back to Houston so that Elaine wouldn't have to drive back alone after a very long day. Thanks, Mark.

When Erin's doctor was unable to release us from the hospital this evening, we asked for a pass. He gave us four hours away from the IV pole (and the hospital), so we all had a great meal at the Marriot and really enjoyed the time away. We got an additional unexpected surprise when we returned and the nurse told us that we didn't have to hook back up.

No news yet on pathology.

October 7, 2004

Well, it's still raining in Houston, not that it affects us too much, but it does make being away from our friends and family a little more drearier.

Yesterday after I posted, Erin had visitors. Mrs. Jacques (Erin's kindergarten teacher) and her daughter Katie dropped by unexpectedly, bringing books and good cheer. Soon after they left, Erin's school buddy and Knight teammate, Jackson, and his mom Shirlene arrived bearing a variety of goodies. Thanks especially to Mrs. Stafford's second grade class who practiced the right way to write letters by writing letters to Erin wishing her a quick recovery and telling her what they were studying in class. Thanks also to the awesome Mrs. Honea for organizing Erin's classmates to send the most beautiful get well cards! Mrs. Honea has also let some of Erin's classmates write e-greetings to her which is so uplifting for Erin. She feels like she is not even really missing much of school because everyone is keeping her so well informed. Jackson's cousin, Bailey, also sent a cute letter with an even cuter picture of herself. We are really adding to the decorations in the hospital room! Shirlene also brought my students exams from Monday. I guess I am going to have to cut back on the bon bons and champagne and get to work on some grading.

Last night we watched Anne (with an "e") of Green Gables, which is a very good and veeery long movie. We have also made progress on James and the Giant Peach. They are currently floating in the ocean about to be eaten by sharks. I don't know if we can stand the excitement. The jigsaw puzzle is coming along, although we are looking forward for Aunt Kat to arrive this evening so we can make real progress. She is such a puzzler.

Erin's appetite has finally picked up the pace, although it is not yet to its regular level. The pain management doctors DC'd (discontinued) Erin's personal morphine pump this morning. She hadn't used it much--just precautionarily before moving around or when she had gotten very stiff after being in the same position too long. Yesterday, she just used it once--right before her dressing change (not that it helped much. Erin has very sensitive skin and the tape really grabs hold of her skin and refuses to let go. Afterward, it required a trip to the gift store to make amends.). Anyway, getting exclusively on oral pain medication is one step closer to discharge. The only other (major) hurdle is the wound drain. We are headed in the right direction, but not close enough to slip it out yet. We are still hoping for the weekend, and the doctor confirms that that is what he has in mind, too. For you scientists out there--no path report yet.

Some of you have asked about the playroom. The 11th floor playroom has been open during the day, and we have played there some. It not quite as happening a place as the 9th floor playroom, and we have plenty of stuff to do in the room (thanks to all of our many friends who keep us well supplied).

We all really miss Davis and Moo (and Luke, Uma, and Kitty Muffin), and they miss us too. We are all out of practice on this hospitalization scene and look forward to all being back together.

October 6, 2004

Erin has begun to paper her hospital walls with the greeting you are sending. Thank you so much. It really brightens her day! We watched the debate together last night, though I have to say that neither VP candidate had exciting enough things to say to keep her awake. Last night went more smoothly than Monday night so we are all more rested today.

Erin's clinic nurses stopped by this morning for a visit and loved the fairy house she was building with materials the wonderful Mrs. Honea (Erin's teacher) sent to Houston with us. This was solace through work--she did not win the prize in the Radio Lollipop craft contest last night.

Erin's drain continues to, well, drain. This means she has to continue IV antibiotics, which in turn means she has to stay connected to an IV pole. The drainage does appear to be decreasing gradually. Erin had both physical therapy and occupational therapy this morning, which went well despite the fact that they interrupted the important work (fairy house constuction) Erin was doing. No word yet on what the doctor is thinking about the "go home" date nor any prelinimary pathology reports.

Just Fine

October 5, 2004

I think it speaks very clearly about how Erin is doing for me to tell you that she let Walter and I leave for a short lunch together while she stayed and played a game with her cousin, Matthew. Aunt Jan and Matthew both took off time from work to drive in and see us this morning, and it was something that Erin thoroughly enjoyed. Matt's friend Krysie who works as a neo-natal ICU nurse at Hermann Hospital served as their guide, and we really appreciate her visit as well.

Erin's pain is being controlled for the most part, and she has had what I consider to be a great first 24 hours post-surgery. We were all pretty exhausted last night and could have used a bit more rest during the night. The top-notch nurses here at TCH wanted us to feel extremely well cared for, so they kept coming in, messing with her pump, medicines, drain tube and so on.

We got up for the day around a quarter to six, finished reading The Witches and finished listening to The Magician's Nephew before breakfast. By the time Aunt Jan arrived at 11:30 we had also crossed watching The Black Stallion off of our To Do list, and seen the surgical resident, Erin's oncologist, and the doctor who did her surgery. Erin's napping now, and I wish I were, too.

Everyone's opinion about what the pathologist will turn up is still quite murky. The only thing I am sure about is that the pathology report will continue to pend for several more days. The current thinking is that the neoplasm is possibly therapy related, perhaps in some combination with a genetic tendency for Erin to have trouble suppressing tumor development. We may never really know. I think we have narrowed what will happen next down to three scenarios:

1. We will do nothing. The mass is gone and stays gone forever.
2. We will do nothing. The mass will eventually grow back and we will have to resect it again and consider other therapy.
3. We will not trust that the mass is gone for good, and we will follow up with some sort of therapy.

Obviously, we are all pulling for the prize behind Door Number 1.

Davis was scheduled to make his solo coaching debut this evening as the Knights take the field without Erin, but wet fields will sideline everybody. I think Davis is okay with that because he is hot to watch the VP debates tonight.

FOR MY STUDENTS: Although Erin is doing better than I expected, she will not feel well enough to be away from her mother for eight hours in a row tomorrow. Please check the announcement page and course schedule for further instructions. MGMT 466 STUDENTS YOUR EXAM WILL BE HELD TOMORROW (WEDNESDAY) AS SCHEDULED.

S-Day

October 4, 2004

Erin came through her surgery this afternoon just fine. It started about an hour later than scheduled (about a quarter until 2:00) and lasted just over four hours. She came out of anesthesia very quickly and was alert and fairly happy by the time we got into recovery. The surgeon told us that the best tumor pathologist in the city came and picked up the tumor himself to get started figuring out what Erin's mass was. I still don't think we'll know anything for a week or two, or more.

We made it to the room by a little after 8:00. Erin felt well enough to sit up and watch a bit of television and listen to some reading (Roald Dahl's The Witches). Her stomach got upset a little while ago (after effects of anesthesia, I hope).

Walter brought all of our stuff to the room, and now it looks pretty familiar. It's getting late, so I will sign off now. Thanks for all of your thanks and prayers today. So far it is working.

Run Up to Surgery

October 1, 2004

I spoke with the surgeons yesterday afternoon. Here is the plan: Erin will have surgery to remove the mass on Monday at 12:45. The surgery will last at least 3 hours, but longer if they need to proceed more cautiously. The doctors expect to take out the mass along with the surrounding muscle and bony parts, and they think she will be home by the weekend, barring complications. Before they will let her leave the hospital, she will have to have her pain controlled orally and all her systems working on their own. I don't expect her to return to school immediately, but we will play that by ear based on how she is feeling.

I will take the laptop with me and post updates each day to let you know how things are going. As in the past, you can send e-greetings by clicking on the link in the header of this page. Volunteers deliver these each day, and Erin loves to plaster them all over her hospital room.

In the meantime, Erin plans on having as much fun as she possibly can before she goes to the hospital. Yesterday she went to school early for the Branch Jump Rope for Heart , stayed after school for UIL, went home with her buddy Tori for some play and relaxation, and ended the afternoon at the Texas A&M soccer clinic. Tonight her close friend, Ayeesha is coming into town. They are both spending the night with another friend, Abby. The Knights have a game tomorrow morning, and Abby has her birthday party tomorrow afternoon. We will top it off with church on Sunday and youth choir Sunday afternoon, before heading down to Houston.

Thanks for checking in on us!

Pre-Surgical Scans

September 29, 2004

The pre-surgical scans went fairly smoothly on Monday. Nico rode along with us for the fun of it all. The two of them had a good time playing math games, and we started Roald Dahl's James and the Giant Peach. We had a pretty long wait between scans and made it home by 11:00 Monday night. Erin popped up early enough for school Tuesday, but was too pooped by the end of the school day for dance.

I heard from Erin's oncologist on Tuesday with news that the tumor was still there (darn, I had hoped for a miracle), but didn't appear to have nerve or too much more bone involvement yet. I'll know more when I get briefed by the surgeon (probably tomorrow or Friday). The surgery is scheduled at Texas Children's Hospital in Houston for Monday, October 4 at 12:45 p.m. Dr Jed Nuchtern, Erin's usual surgeon, will work with an orthopedic surgeon (Dr. William Phillips) and a neurosurgeon (Dr. Robert Dauser). That's all I know at this point, but I'll fill you in as I go.

On other fronts, Erin will be getting a Science Award at her school on Friday. We are quite proud of her for so many reasons.

Kinghts Win

September 25, 2004

The mighty Knights grabbed their first win of the season this morning in a tight 4-3 game. Our team had just enough players for each position, but no subs! Erin roved the defensive area, mostly playing Raptor, and all the players played very hard and never let down. Coach Davis was at Camp Tejas with his church youth group and missed it, but he will be so proud to hear that everyone played their positions like he taught them in practice!

There is still no definite surgery date, but the pre-surgical scans have been moved to Monday evening (September 27). Of course, I'll let you know when I know more.

By the way, we haven't actually told Erin that she is back on deck for surgery, so. . .for those of you who live in town and see us, try not to mention it to Erin for a couple of more days. We didn't want to spoil the weekend or have her worrying about it until we knew more--when it would be, how long the surgeons think it will take, how long she should expect to stay in the hospital. Thanks for understanding.

Thriving

September 23, 2004

Hello Erin fans! The Buengers are thriving these days. Davis had open house at the high school on Monday, and we got to meet his teachers, who seem like a lively and interesting bunch (but perhaps easily fooled--they were quite complimentary of our number one child). Erin's open house is tonight, and she is already bursting with pride to show us around her school (we won't remind her that we have attended open house there seven times already--six time with Davis and once with her).

The Knights (Erin's soccer team) played their first game last Saturday in rather brutal heat. Josh got his first goal ever, and everybody else ran around with the ball and without it until the sweat was flowing like rivers. Erin played T-Rex and Raptor (which, for you soccer fans out there, on our team means sweeper and stopper, respectively) and was quite bold at stepping up and stopping the offensive flow.

The sweet D'Anna and Shirlene (two mothers of knights) brought birthday surprises (cupcakes and chocolate-dipped pretzels) for yours truly and the rest of the team to last night's practice. Thank you ladies for always going out of your way to do nice things!

We have somewhat new information on the medical front. We got the final, amended pathology report last Thursday. The pathologists have labeled a component of the sample "cellular and atypical" rather than malignant, and the rest of the sample is benign--mainly "reactive fibroblastic proliferation with some areas of hyalinization and benign chondroid-like material." We received an addendum today with the results of the cytogenetic G-banding tests. The doctors still can't tell what kind of tumor Erin has or even if it is benign or malignant. The tumor cells do, however, have several genetic abnormalities. This has led everyone to conclude that it is best just to remove it.

Frankly, Walter and I thought this was going to be the case. As many of you know, Erin had originally been scheduled for a resection. When the plan changed to biopsy, the doctors hoped that they would discover a benign tumor that would possibly go away on its own. Now they are not willing to trust that to happen. The surgeons have not yet scheduled a date, but I suspect it will be next week or possibly the week after. Of course, I will let you all know.

Thank you for caring enough to drop by and read our story.

Not Synovial Sarcoma

September 10, 2004

I received an e-mail this morning from Erin's doctor with confirmation that the cytogenetic tests came back normal, and therefore the pathologists are ruling out synovial sarcoma, like they have ruled out all the other malignant sarcomas. Of course...I suppose they could change their mind before they finalize their report, but I am sticking with this until I hear otherwise.

The docs still don't know what is going on or why, but benign is much better than malignant and no surgery now is better than maybe surgery later.

Erin is scheduled for an MRI in October. Until then we will enjoy dance, soccer, school, and friends. Erin is quite relieved that we have removed surgery from her immediate schedule, and frankly, so are we.

Sort of?

September 9, 2004

Pathology has not yet finalized the report, but I did talk to Erin's doctor last night. Here is the latest:

The biopsy looks mostly benign. One section has "sort of" aggressive looking cells, which could be caused by malignancy or some other things. Pathology is running one last cytogenetic test. A negative finding will essentially rule out malignancy.

If that is the case, the doctor will have Erin come in the second week of October for another MRI and a urine sample. This will help them decide whether the mass is (a) sitting there happily, not causing problems; (b) regressing on its own; or (c) growing in a way that might eventually cause trouble.

We still have questions about where this came from, what it means, and what we are going to do about it. Still, we feel like we can exhale a little.

Erin seems fairly oblivious to all the talk and second guessing that has been going around lately. She began soccer practice this week. All the kids are very enthusiastic and really enjoy chasing Davis around trying to steal the ball from him. Erin's power kick has improved since last year, and she is still one of the toughest defenders on the team. By the way, the players voted to change their name from the Sharks to the Knights. So... Go Knights!

"I Skipped Lunch for Erin"

September 8, 2004

No news yet (noon). When I get out of class at 1:30, I am going to send Erin's doctor an e-mail announcing that I am free to accept phone calls. Maybe that will work ;-).

What follows is a request for your support again this year for Lunch for Life. I am posting this on behalf of the Children's Neuroblastoma Cancer Foundation (If you do feel moved to donate, send me an e-mail with the subject line: "I Skipped Lunch for Erin", so that I can thank you. If you don't that's okay, too.):

After Erin had chemo, she had no appetite. After reading this, maybe you won't either...

Because we are asking you to skip lunch today or tomorrow, and donate the money you would have spent on lunch to fund curative research for solid tumor cancers in children.

We're the Children's Neuroblastoma Cancer Foundation. And through the "Lunch for Life" research funding campaign, we've already raised over $150,000.

But we want $10 million. Yes, our goal is aggressive. But so is neuroblastoma. Only about 2 out of 10 kids that get this form of pediatric cancer will survive. What's more, it's the most common cancer in infancy. (The incidence rate is almost double that of leukemia).

To help us fund a cure, donate your lunch money (for most people that's about $5) to this research fund and---this is the important part---ask 5 friends to do the same. Tell them to ask 5 friends. Then pass it on. You get the idea. This is the only way we will succeed.

To start your own chain of giving, send $5 (or for that matter, any other amount) to: CNCF, PO Box 6635, Bloomingdale, IL 60108. Or call 1-866-671-2623. You can also make a credit card donation online at our secure web site: http://www.lunchforlife.org CNCF is a 501 (c)(3) public charity. Your donations are tax-deductible to the full extent of the law. ID #36-4370725.

Playing "Stump the Doc"

September 7, 2004

No news yet. The waiting is excruciating.

September 4, 2004

Again, no definitive news, but as you can see from the latest email from Erin's doctor the pathology is looking more positive than they originally thought:

They [the pathology department] have still not signed it out. When I spoke with her [the pathologist] yesterday [Thursday] afternoon, she [the pathologist] was very positive about the pathology (i.e. not looking bad at all). They wanted to do one more thing that was either going to be finished today [Friday] or next Tuesday (depended on if it worked the first time or if they must repeat). So sit back and relax over the weekend. I already called off Dr Nuchtern from taking Erin back to the OR anytime really soon to remove anymore because I'm not convinced we will need to do that.

Talk to you on Tuesday.
HVR

Anyway, I plan to take Dr. Russell's advice and enjoy the weekend. Erin feels well. She is downstairs playing trains and singing songs as she composes them.

September 2, 2004

For those of you on the Erin Watch, I have no definitive news. This afternoon I received an email from Erin's oncologist in response to my question--"Are we still winning at "stump-the-doc"?. I will quote her e-mail in its entirety:

There is alot of discussion and perplexity...this is actually good news.
The biopsy Jed [i.e., the surgeon] took this week doesn't have alot of cells - she
[i.e., the pathologist] used the words "burned out appearance".  Although this
is preliminary, it is better than "aggressive appearing" or "alot of bad looking cells".

Hopefully something tomorrow.

How is Erin?
HVR

So, that leaves us waiting at least another day. I want you all to rest easy tonight. That's what we are going to try to do. Erin has had an awesome week at school this week. She is adjusting and making new friends among her classmates. She is reading and doing math like a champ.

Of course, I will post when I know something.

August 31, 2004

No news yet. Dr. Russell dropped me an e-mail this afternoon and said that because of the kind of tests that pathology was running not to expect any news until Thursday. Erin is back at full speed today. She stayed all day at school and went to an hour and a half dance lesson after school.

"Send Them Home"

August 29, 2004

On Saturday the in-service doctor looked at Walter and me, looked at Erin, and turned to the rest of the doctors and nurses standing there and said, "Send them home. These parents can give her Tylenol every four hours as needed, just as well as the nurses here can." So we packed up and came home. You know what. . .he was right. We were able to dose the Tylenol correctly, plus we had the added benefit of home prepared food, comfortable beds, and a doting brother and grandmother to add to the home mix.

Erin slept well and woke up feeling better than she did yesterday. We made it to Gina's for lunch (some things are a must in our family). Right now, Erin and Nico are downstairs playing the game of Life and not realizing how Erin plays and wins the game of life every single day. Unless she overdoes this afternoon, I think she will probably go to school tomorrow, with the condition that she will call home

if she feels worse or runs out of steam.

Biopsy Surgery

August 28, 2004

Erin came through the surgery very well. I had hoped to update yesterday, but the day stretched out in ways we couldn't control. The surgery didn't start until 2:30. Things went smoothly, and she was done and in recovery by 4:30. The surgeon didn't really look around much. He didn't want to disturb the tumor in ways that might make a later resection more difficult, so he just took a slice for the pathologist. Recovery went well--two purple popsicles and a box of Gatorade. Our room wasn't ready by the time Erin was, so we stayed in recovery a bit longer than we hoped. By 6:30 we were in the room (1122). The first order of business was finding food for the starving creature (no, Erin not Walter). The cafeteria sent up yogurt and fruit (quite good, but not nearly enough), so Walter went off in search of a hamburger. Erin practically swallowed it whole when he brought it back.

We had a relatively uneventful night. We watched a little tv and read, with lights out about 10:15. Erin successfully navigated the bathroom and walked a couple of laps around the floor (the first time hoping to find the toy room, which was unfortunately closed; the second time in hopes of staving off bedtime). So far, she is just taking Tylenol for pain. Her back is tender and she is moving slowly, but she is moving.

The in-service doctor came by this morning and gave orders to unhook her from her IV. If she continues to drink and go to the bathroom and her pain is managed orally, we will get to go home. That will probably be late this afternoon or early tomorrow. It doesn't look like we will get any results from the biopsy until Tuesday at the earliest, but probably more likely Wednesday. After that the doctor team will make a plan.

Biopsy?

August 26, 2004

The surgery team made a decision this afternoon to change the plan slightly. Tomorrow's surgery will go on as scheduled, but the goal will be biopsy, not resection. Apparently, there is a fairly large amount of variability when it comes to removing sarcomas. Some types do best if the surgeon takes out two or more centimeters of healthy tissue all the way around the mass. With others, you can safely get by removing much less healthy tissue. Since this tumor is right on her vertebrae, the surgeon doesn't want to remove a lot of healthy bone if he doesn't have to. This way we can possibly avoid having to have bone reconstruction, which would mean having Erin in a cast or back brace for a couple of months and probably extensive physical therapy.

That's the up side. The down side is that it most probably means a second surgery in a week or two.

The parameters of that surgery would be defined by what the pathologists turn up in the biopsy. Apparently, we are still winning the game of "stump-the-doc." For instance, the bone scan shows no abnormalities at all in the spot, but the doctors would expect some sort of bone involvement based on what they see in the MRI and CT.

Tomorrow's surgery should be pretty straightforward and relatively quick. We will probably spend a night or maybe two in the hospital. I doubt if we will have pathology reports before the end of next week.

August 24, 2004

Well, we learned last Friday that Erin's doctor believes she has a small sarcoma next to her spine in her lower back. The needle biopsy couldn't pinpoint what type tumor it is (but definitely NOT neuroblastoma), so it will have to be resected for a completed biopsy work up. While the doctors don't know exactly what we are dealing with, the most common treatment for many tumors still in the running is complete resection, so that is what we are hoping for.

We went to Houston for an MRI yesterday. The MRI is useful to the surgeon to plan his approach. We did get promising results: the mass does not touch or compress any nerves entering or leaving the spine. It does not extend into the spinal canal, and it is not wrapped around any nerve roots. Please hope and pray that all goes well with this surgery, that the pathologists discover Erin's tumor is an easy-to-treat kind (surgery only would be best), and that Erin recovers quickly.

I spoke with the surgeon's secretary a short while ago. The surgery is scheduled for 8:00 Friday morning. She told me he reserved the OR for two hours. This man, Dr. Jed Nuchtern, who has done all of Erin's surgeries, is not by nature optimistic. In fact, he is a big worrier and very meticulous. This is why we love him. So, for him to schedule the OR for only two hours sounds very positive to me!

I wish I could tell you that Erin's recent scans were perfect. Instead, I must ask you all to keep in touch and hope for the best, so we can get back soon to boring website posts about school days, dance lessons, and soccer practice.

Thanks for your support.

Back to School, Again

August 20, 2004

The bone marrow aspiration and biopsy came back clear. Hurray! The pathologists at Texas Children's are still puzzling over the needle biopsies that they took from her spine area last Monday. At this point, the cultures haven't shown infection or fungus, and they really don't think it is neuroblastoma. They just don't have a straightforward answer as to what it could be. I have been walking around, holding my cell phone for days, hoping for more information, but so far nothing. If we were playing a high stakes game of "stump-the-doc," we'd be winning.

I am not too worried yet. Erin does not have any accompanying symptoms. No pain, no fever, no unsightly bulge sticking out of her back. Seriously... Erin feels very well. Her first week of school has zoomed past. Her teacher this year is Mrs. Honea. She has a great classroom, and she makes all her students feel special. She has already visited with Erin on the phone twice, sent her three emails and an e-greeting, and taken time to read The Black Stallion--on Erin's recommendation.

Because her name came first in the alphabet in her class, Erin had the privilege of being line leader and student helper on the first day of class. By lunch that day, her back ached enough from where they drilled into her in three places for her to go to the nurse's office. When I arrived at school a short time later thinking we would just go home for the rest of the day, she refused. She wanted the Tylenol in my pocket so she could "get back to doing her job."

By Wednesday, she didn't notice her back any longer and got on with the fun of being a second grader. Apparently, recess is the highlight of the day. Erin and her friends play an elaborate, rule-defined game that resembles what people my age used to call chase.

Davis has also had a good week at Bryan High, where he is now a junior. He got his learner's permit on Wednesday and is doing very well behind the wheel. If you want to lower your risk of being on the streets with him, you should only drive on roads with more than two lanes and a speed limit higher than 40 mph. So far, he doesn't feel up to driving on those roads.

Since I will have to update when we have biopsy results, I will end here and save the stories of our vacation a little longer.

Thanks for stopping in.

Good, But Puzzling

8/13/04

3650 miles later, we returned to Bryan, Texas, having seen much of the southwest. More about the trip later. I want to fill you in on Erin's scan week.

Both the bone scan and the MiBG scan were normal this round. That means that the spot of Erin's liver that appeared on the MiBG in both May and June has disappeared! She also had a hearing test and a test that measured how well her lungs worked. Both of these tests went very well. She had good lung power and only had hearing damage at the very highest range of the spectrum. This means she might not be able to hear butterflies or small birds whispering. She can definitely hear secrets spoken by parents from across the house--behind closed doors, no less!

While all this is good news there was a small piece of the puzzle we haven't figured out yet. Erin's CT scan showed a bone abnormality on/between(?) the 4 and 5 vertebrae. Her doctor is going to biopsy it on Monday. It could be a bone infection, some sort of back trauma, or something else. Since this doesn't show up on either of the other scans, we are reasonably confident that it isn't relapse--just something there that shouldn't be there.

I will post these results, along with the bone marrow aspiration and biopsy which they will also do Monday, when I have them. I will also tell you about our trip and post some new pics.

Thanks for checking in.