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.
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