Monday, April 30, 2007
You may want to take cover. I'm about to wax nostalgic about youth sports. It was nine years ago this month that Davis told us he was going to try tryouts for the local competitive soccer team. The announcement astonished me. Davis wasn't the best player on his recreational team that spring. He wasn't even in the top three. I would have been hard pressed to swear he was in the top half. No one else on his team tried out. As best I can recollect, no one else in his whole league tried out. Davis did, along with seventeen other ten year olds. Eighteen boys made the team. The Buengers' lives changed.
At first, it was just a matter of juggling the lawn care and the gardening schedule, so that we fit it in on Saturday mornings before we left for Houston or even pushed it back to Sunday afternoon some days, if we had an especially long road trip. By the end, our yard was no longer the envy of the neighborhood, and we bought tomatoes from the store in the summer if we wanted them. We started out with a sedan, but soon traded up for a van, not just for gear, but to carry other boys along. By the end Walter and I each drove minivans, in case we had to take the whole team somewhere. As newbies, we hollered "Kick it!" or "Clear it." After a few years we knew enough to suggest "Composure" or perhaps just "Easy." In the end Walter rarely spoke at all on the side lines, and I just added the occasional "Well struck." We eventually understood what the referee meant when he signaled off side and knew the difference between a foul with advantage and one without. One birthday, Davis chose to take three buddies to a 3 v 3 tournament in lieu of a party, and we thought it a grand choice.
Competitive soccer tryouts for Erin's age group start tomorrow, and much to my astonishment, Erin will be there. I say astonishment, not because she is not capable of trying out and making the team. She is. In the Neuroblastoma world, children in relapse rarely feel like running around the soccer field, especially at that level, and frankly, most parents can't honestly sign a contract that commits their child to play for a year. Not the Buengers. We'll gladly sign the bottom line. . .and put up the money. Walter was even talking last night at dinner about trading in his sedan for a second van again. All I can say is that if you need us. . . look for us on the pitch.
Not much else is going on around here. Walter has moved the church one step closer to having a new (and I believe splendid) pastor in place by the first of July. Davis has knocked off all of his finals and is wrestling his History of Science term paper to the mat as I write. Erin had a break from school today, because the teachers needed one last work day to get organized for the final run to the finish line. She and Nico and Adam spent the day doing their usual stuff, which, as always is top secret, as well as incomprehensible (at least to me).
I did take the opportunity to meet an old friend on Saturday. Angela Thomas, matriarchal head of the Thomas Team and mother to angel Christi and angel on earth Shayla, and wife to the uberbanker Shayne, flew into Houston on Saturday on business. She graciously made time to visit. We had both thought that our daughters (same age, diagnosed within a month of each other, witty, creative, and bright) would meet some day and share laughs about their silly old mothers. Sadly, it will never happen. Christi had a good run, but not good enough for those of us who loved and admired her. Christi died last September, but she is a child who continues to bring out the best in people, even those like me, who never had the privilege to know her. You should stop by her blog or her permanent website christithomas.com and get to know her, too. You will find your heart and imagination growing as you read about her. Here are Erin and I wearing our new Ohio State shirts in honor of Christi's cat, Buckeye (who I am told was named after the candy and not the university mascot).
Tuesday, April 24, 2007
Wicked, wicked, wicked. That's what I am. I didn't actually play fairly with you last week. I pretended to give you a respite from the grind, by sending you off on a cross-country adventure through website land. Sending you wasn't the problem. I suspect that those who wanted to travel did. Otherwise you stayed home. The problem arises because I sent you one place and immediately headed out for some place better. You had to cope with the reality embedded in each website, and in the meantime, I was lolling about on the banks of the Guadalupe River like a sun-drenched river otter. That's right. Last weekend the Buengers hopped in their car and headed to one of their favorite spots, Mo Ranch Family Retreat, where they traded cellphones, email, weblogs, and television for hiking, horse back riding, and river swimming.
Those of you who follow the Willie angle (DO NOT EVER, EVEN FOR A MOMENT, SWITCH THE "l" and the "e" IN THE PRECEDING WORD) are probably wondering what he did in our absence. My mother (who has mentioned twice in the last month that she doesn't get much space in the journal. How's this for customer service, mom?) volunteered (I use this word very loosely, sort of like when parents volunteer to clean up their pre-schooler's vomit) to watch him, and Uma and Luke. As best I can tell, he inflicted very little damage to the house in our absence, and everything that I noted could be classified as Nibble Damage, as opposed to Chewing, Gnawing, Crunching, Chomping, or Masticating Damage. In fact, he fell far short of the usual verb categories: Ruin, Wreck, Destroy, and Demolish. And for that I am grateful?
Mo Ranch is not a working ranch, much to Erin's dismay, but it is a 500 acre camp and conference center nestled in the north fork of the Guadalupe River west of Hunt, Texas. Getting there takes some trouble, but once you've arrived, you immediately slow your pace and set your cares aside. Celtic tradition has a word for spots like this. They call them "thin places," to denote somewhere that the material world and the realm of the spirit come close together.
Erin claims she loves Mo because of the horse back riding and opportunity to play by the water's edge, which is true enough.
I know the truer story. When we go to Mo, Erin believes she has total freedom. It is a place where everyone does what he feels like doing. Want to hike? Go ahead. Read a book? Go ahead. Take a nap? Fish? Canoe? Romp? Build crafts? Sure. At 9:00 p.m. when Erin looks out the window into the pitch black and says, "Mom, can Nico, Clayton Sue, and I go exploring." I say, "Sure. Take a flashlight." She pauses for a minute to consider whether I have lost my mind, then skitters out the door before I recover. Have I lost my senses? Notice that I said that she "believes" she has total freedom. With 117 other folks from out congregation along for the weekend, it would be awfully difficult for Erin to actually stray into trouble without someone showing up to warn her off or even rescue her if she needed it.
So, if she wants to swim in the icy cold river until her skin turns blue, I say why not? And I mean it.
We got back to town Sunday evening and have had a hard time matching the pace of the normal world. Oh well. We'll catch up eventually. Erin had her follow up appointment with the ENT doc today. As best he can tell, her fluid has cleared, although the right ear has some lingering scarring behind the ear drum, I suppose from the serial ear infections. Anyway, the bottom line is no ear tubes for now, which makes us very happy. We also had week three counts done today. Erin's hemoglobin was a hair under the normal range today, and everything else looked fine. We'll have clinic in Houston next Wednesday and barring the unexpected will start in on the 18th round of etoposide the following Monday.
By now, you may be wondering why I called this entry "Second Strike." The first strike was sending you to Penelope's page last week. I enticed you into taking a look at a child suffering and her parents trying to make sense of it all. It might have depressed you or made you cry. If you read this journal for the fun of it, to catch up with Buenger highlights, or for some other light hearted reason, sending you to that page probably wasn't what you hoped for. If that describes you, you should stop reading right now. I am going back into advocacy mode. What I am about to show you is gruesome and will ruin your day. Frankly, it may be too much to look at.
This year's Pulitzer Prize for feature photography, announced last week, was awarded to Renee C. Byer of The Sacramento Bee for ''her intimate portrayal of a single mother and her eleven-year old son as he loses his battle with cancer.'' The boy had neuroblastoma, and these photos show something that every cancer parent fears more than anything.
Last week I sent this link to the Senators from my state, telling them that this is every cancer parent's nightmare and asking them to sign on as co-sponsors to Senate bill 911 which support funding for research for pediatric cancer. I would like you to do the same for your Senators and your Representative (HR 1553), if they are not yet sponsors. Half the children we know diagnosed with neuroblastoma will die unless we make progress towards a cure. Almost all of the ones who relapse will.
Background information in case you decide to write: 13,500 children will be diagnosed with cancer in the US this year. Most will never know the cause. A lot of them won't survive, and those that do may have to cope with severe effects from the treatment that saved them. While 13,500 is a big number, it is not big enough to catch the pharmaceutical companies' attention. There is not enough profit in designing, testing, and seeking approval for drugs and treatments for a population that small. In fact, as best I can tell there have only been two drugs developed and brought to market for pediatric cancer in the last thirty years. Everything else are hand-me-down drugs developed for adults (that children had to wait a long, long time for). In instances when the free market fails, as it does with finding a cure for pediatric cancers, the government has a responsibility to help. There are two bills in front of Congress (S. 911 and H.R. 1553) right now to further the fight for cancer funding for children. The Senate bill has one sponsor and six co-sponsors (click here to see the bill and check if your Senators are in). The House bill has one sponsor and 53 co-sponsors (click her to see the bill and check if your Representative is in).
My Congressman, Chet Edwards, is on the list, but my Senators (and yours if you live in Texas) are not. I think they should be and told them so through an e-mail to their website. You can find who represents you in Congress by clicking here. It will be worth your time. Ask them specifically to sign on to the bill as co-sponsors. If Senator KBH tells you the Conquer Childhood Cancer Act never made it to the floor last year for a vote (and by implication that she would have supported it), ask her why she never signed on as a co-sponsor and encourage her to do so now.
I wouldn't ask you to do this if it weren't important.
Wednesday, April 18, 2007
That's right. You deserve a vacation, and I'm here to give it to you.
The Buengers have already started to make summer vacation plans. First up? A long weekend at the beach at Port Aransas in May. Walter, Davis, and I will have our semester flushed, and Erin doesn't mind a respite from the grind from time to time. DC is on the calender for late June, and we hope to get to somewhere cooler once the heat sets in in the second half of summer.
In the midst of end-of-semester grading, student hand holding, and generally not having enough time to keep up with grocery shopping and laundry, I am more than ready. I'll bet, you too, feel the lazy, hazy days of summer approaching, though not quickly enough. It's in that spirit that I invite you to take a journey with me. No, I'm not inviting you down to your local library for a mind-journey into literature. Over the next few days or weeks (I envision this as an occasional foray), I want you to take the trip I take every morning. Come along with me as I visit children with neuroblastoma.
First, I stop in to take a peek at the local kids, all treated by Heidi Russell at Texas Children's in Houston. This will be a breeze. Everyone is doing well. Even Colby (first picture below. . .imagine his mother's delight that he covered his hands with permanent marker) who relapsed after Erin is having a great response to treatment. Colby recently had scan results that showed his tumor load improved, so everyone at their house is riding high. I also usually stop by Hannah's place. She has been out of treatment for a really long time and her parents don't update her site very often. Still, I stop by every morning, and last week I was rewarded for my loyalty with a new long and heartfelt entry. Ryan (shown with his beautiful sister Haley, who apparently has a voice to match her looks) now sports a a full head of curls to go with the impish smile he never lost. CD, who does much of the writing on Ryan's website, would love for you to add a note to Ryan's guestbook. He is especially fond of the Aggies (NOT) so you should highlight them in any comments you leave. Ryan had a nontraditional path through treatment ,and it took a long time to get free of the cancer beast, but their family pulled together strongly.
For those of you who love the west coast, I also check on Sam in California. Sam shares Erin's red hair and love for soccer. He has two younger brothers (Charlie is in the picture with him), and I think the pack of them move at a pretty fast pace. Earlier this spring, Sam's great Aunt (whom I admired almost beyond words) Molly Ivins died. If you scroll down to last week's entry (April 12) you can catch a glimpse of the pre-scan experience that I write about every few months. His mom captured it to a T. There is a link on the main page of Sam's website that takes you to a site called Magic Water. Magic Water supports parent-driven pediatric cancer research dedicated to finding and funding promising treatments, quickly bringing them into the clinic to save as many lives as possible.
Sam's dad works diligently to find ways to help children before it is to late. He and Penelope's dad have made great strides, but for Penelope the time is running out too fast. For the past many weeks, she has been held in the loving arms of her family, while they hope for a miracle. I know that none of you want to spoil this vacation journey by think sad thoughts, but these parent's love for their daughter is too heart-felt and well-expressed for me to let you pass them by. Don't stop with the most recent entry. Click on journal history and read a few of the entries to appreciate the love and humanity created by this little girl.
I've sent you to Spencer's website before. His dad doesn't update that often, and there is rarely very much information about treatments or symptoms or concrete things that parents look for when they cruise the internet. In fact, the site isn't all that "useful" at all. But boy does it make me laugh. I think I'm going to stop adding new places to visit right now, just in case you get a hankering to dig into all the past entries on Spencer's site. If you're up to it, start with the first one, back on November 11, 2002 (that's right, they've been in the game almost as long as we have) and go from there. Now that I have single-handled undermined North American productivity for the rest of the day, I'm going to sign off. Don't come looking for me, I'm reading Spencer's journal.
Friday, April 13, 2007
I failed to do justice to last week's scantravaganza with either wit or photojournalism. In some ways, it was enough to announce that our stool hasn't started to wobble (translation: things remain stable). Still, I'd like Erin to have this diary when she's an old survivor and read about the fun that we mixed in. In that spirit, here are a couple of photos (before and after) from the Lighthouse Lift at the Houston Aquarium on Tuesday night. Both are completely staged by a couple of professional hams.
Before twenty-five rides on the machine that carries you up thirty feet into the air and then drops you (Alternative title: A Good Day with Cancer):
After twenty-five rides on the machine that carries you up thirty feet in the air and then drops you (I think you can click on the image and get a closer view of Erin and Nico's interpretation of A Bad Day with Cancer):
I even used my still camera to take some motion video. If I can figure out how to set that up on a sidebar, I will.
Since Scan Day, we have charged into April: three softball games, two birthday parties for Davis, a craftfest at the church, two soccer practices, an Easter performance by the Carter Creek Brass, a Walter/Vickie dinner date, dental sealants for Erin, horse back riding, and a quick trip to Houston to return Davis to Riceland.
For Easter we coordinated our outfits with Erin's. To hell with "When I Get Old I will Wear Purple." I decided the right time was right now. We even managed to throw off our coats long enough to snap this shot.
Erin's blood counts on Wednesday showed that all was still right with the life fluid circulating around her body. All the different numbers we pay attention to (hemoglobin, white counts, and platelets) met the minimal standard for normal. She brought home another satisfying set of numbers yesterday: a fantastic report card. Only one more six week grading period and Erin will become a fifth grader, or as Walter told her at breakfast this morning, "You'll be on the top of the heap at Mary Branch!" I, for one, am not in that big of a rush to get to next fall. In fact, I'm not in that big of a rush to get to next week. Instead, I plan on enjoying the weekend end-of-season soccer tournament and the sleepover Erin planned for this evening. I will also tune my eyes on her singing "Feed My Sheep" at church on Sunday. If the timing works out, she may do Walk/Trot Equitation in the BAHA Spring Horse Show and that would be great, too. Davis played in the semi-final match of Rice soccer intramurals last night, but I don't know the outcome. Tomorrow is the day of the re-scheduled Beer/Bike race. I will update the Report with birthday pics and other stuff when I find out the results of those two biggies. Thanks for stopping by! P.S. No news on the Agent Cool Blue front. I did make it through to the automated consumer help line, which helpfully read out loud the information in the press release and directed me to my health care provider. Since I have heard nary a word from my HCP, even though I emailed with specific questions, I am going to put my concerns on hold.
Thursday, April 12, 2007
Just when I think I can enjoy a worry-free moment, something happens that places all bets off. I followed my usual routine this morning, snuggling in bed between 5:15 and 5:45 listening to Walter's morning routine: dress, walk dogs, allow dogs to rough house and bark incessantly while waiting for their breakfast, feed dogs. Having re-awakened to the blissful notes of dogs agitating each other, I popped downstairs to give
“Interesting,” I thought to myself, “The container probably contains small parts that could choke a three-year old.”
I read further and discovered that because the product doesn’t contain alcohol (a relatively good thing for most products geared to go in children’s mouths), it does not protect against the proliferation of certain micro-organisms. ALL units of the product that have ever been manufactured were recalled. I ran upstairs, revved up the computer, and visited the website the newspaper article had referred me to. This is what I read:
My child has been using this product. Should I be concerned?
- McNEIL-PPC, Inc. conducted a thorough assessment and concluded that the risk of illness in healthy individuals following use of this product is very low. Ha Ha, I thought.
Erin’s safe. Then I read further. . . However, there could be a significant health risk to individuals with weakened or suppressed immune systems. To date, there have been no consumer adverse health events reported that are related to this issue. If you have further concerns, please consult your healthcare professional.
Ack! That’s not what I wanted to read. The “innocent” product I bought so that my child who has chemo-weakened teeth has a better chance to preserve her smile puts her at risk for bacterial infection.
So far, I haven’t gotten through on the consumer line to see how dire our predicament is.
I had intended to give you a full weekly report today, along with lovely pics. Be patient. I will fill in the details of the convergence of the peak of softball season, the coming finale of soccer,
Thursday, April 5, 2007
Our day yesterday was fragmented, grueling, and ultimately great. The radiologist declared the CT "stable" with all the January anomalies (that we had hoped were related to lung gunk and general bad health) resolved. The bone scan was negative for disease, and Erin's blood counts looked solid: BUN and hemoglobin returned to normal, white count and ANC remained a little low, but fine for someone on chemo, and the balance tested out just where they were supposed to. Erin had even grown a bit in height and put back on some of the pounds she lost over winter. She's now 4 foot three and a half inches, and 57 and a half pounds (Erin thinks it's quite important to include those "halfs").
Now I can rest easy for about a month or six weeks before I start looking in earnest for signs that things are not going well.
Davis caught a ride back home with us, and is refilling his metaphorical tanks before returning back to school for the final three weeks of mayhem, plus the torture of finals. When I get over the glow lit by the realization that Erin can continue doing what she's been doing and that our family doesn't have to stop, regroup, and make a new plan, I will post a livelier update.
Monday, April 2, 2007
Here's a quickie.
Beer/Bike race--postponed until April 14. Rainy weather, complicated by a campus tragedy (a student overdosed and died) unrelated to the race.
Erin's teeth--no cavities. . .yet. Because of the harsh, high dose chemicals used to treat Erin and the radiation she had over her entire body, including her head, Erin's teeth are starting to deteriorate a bit. Her Number 14 and her Number 30 (I think those are both towards the back) have soft spots developing down in the crevasses. Her dentist, Sig Kendall, will try sealants as the first line of defense. We'll do that in a couple of weeks.
Erin's ears--still fluid-y. No infection in the left ear, milky look in the right ear. The ENT Andrew de Jongh was unwilling to call it pus. We're giving it three more weeks for the fluid to drain on its own, then he will recommend ear tubes. I'm not sure where I stand on that. One more surgery (even though, it's a mole hill compared to the mountains Erin has climbed before) is not high on my list, especially since the ears don't hurt and her overall health seems fine. Still, hosting serial infections in an immuno-compromised child is like playing with fire. Right now, the lake seems to be the deciding factor. If he could make her waterproof molds that she could swim in, I think I would give it the okay, if needed.