Thrive

 Well, it’s now official.  Annaka is on the transplant list.  Based on her most current lab results and other factors, her PELD (Pediatric End-stage Liver Disease) score is at an eighteen.  As I’ve mentioned, this number is most likely not high enough to get her an organ, and so her transplant team is currently in the process of asking for “Exception Points.”

What this means is that the team will request that she be considered for a higher PELD score based on some specifics.  From the team’s perspective, Annaka is a “failure to thrive” baby, meaning that she is gaining weight very slowly and is doing so only with the help of an N.G. tube that feeds her overnight for ten hours. (To give you some perspective, at six months she is still only thirteen pounds).  She also suffers from ascites, which means her abdomen fills with fluid from the liver failure, making it difficult for her to breath.  To make this condition tolerable until her surgery, she has to have albumin infusions periodically to remove the fluid.

 These “exceptions,” along with others, make her a more urgent candidate for a transplant than what her score would suggest. Earning “Exception Points” can take up to twenty-one days but is often done within a week.

Regardless, we now live with the understanding that we can receive a call from St. Louis at any time, day or night, and have about four hours to get there.  Upon our arrival, Annaka will endure some more tests and will be screened for viruses of her own.  Based on this information, the surgeons will decide if the transplant will take place.  If so, the surgery will last close to ten hours.  If not, we’ll go back home and wait again.

Throughout the very long wait leading up to this point, many people have approached us with the notion of raising funds, and, for a long while, we struggled with the idea.  After all, we have health insurance and we have jobs. Conventional wisdom would suggest that the time and energy it takes to raise money would be better suited for a family without such resources.

However, after sitting through multiple meetings at Children’s Hospital with multiple people who have much more experience in liver transplants than I do, two ideas stuck out.

For starters, a liver transplant does not entirely fix the problem.   This is a lifetime health issue with multiple components, some of which are not completely covered by insurance.  For example, in order to keep her own body from attacking her new organ, Annaka will need to take anti-rejection medicines for the rest of her life.  This stuff can be enormously expensive; according to our transplant team anywhere from five to ten thousand dollars a year, depending on the specific prescriptions.  Making matters worse, because this medicine's job is to decrease a person's natural immune system, it has the side-effect of potentially turning the common cold, (a pretty standard virus in a household with two teachers and two school-age children) into a multiple-day visit back to St. Louis for observation.  In other words, the bills keep showing up well after the stitches go away.

The second idea that stuck with me, and I’m a little embarrassed I hadn’t thought of it sooner, is that many, many people just simply want to help.  People who genuinely care about you also genuinely want to help you in some way, and a fundraiser is one way to do that. 

I should have known all that, of course, considering how many “How can I help?” queries we’ve received in the last few months.  People do pray, but God answers those prayers on his own schedule, in his own dialect, which can sometimes be confusing to human ears.  Also, some prayers are  answered “behind the fence,” so to speak, entirely beyond our very limited scope to comprehend.  However, many of us need a chance to put some paint on that fence to know we’ve at least done something, to put our mark on a problem in a visually tangible way.

Unsurprisingly, there has already been a tremendous amount of “painting.”  Many of you have already heard of young Lincoln Ervin’s very successful Popsicle stand.  Thanks to the remarkable generosity of hundreds of people, he sold a crazy amount of Popsicles in just over two hours.  Also, just two days earlier, so many people called into Barnes Hospital requesting to be a potential live donor for Annaka’s surgery, nurses finally had to stop taking names.

It’s important to clarify that these two examples do not just represent “feel-good,” isolated incidents, however.  Instead, they are part of a larger trend.  They are testimony to the inherent kindness of thousands of people whom we will never, ever be able to repay, many of whom we will never even meet. Collectively, hundreds of hours have already been donated by family and friends who, just like most people in this country, are all super-busy with their own lives.  

This is all very new to us; very much uncharted water.  At the risk of sounding like a broken record, the entire experience has been overwhelming.  At the end of the day, we’re just very thankful that we get to raise our children surrounded by people willing and able to run a Popsicle stand. 

Exception Points

We missed Wade’s 5^th birthday party.  This was his Spider-Man birthday, complete with red & blue balloons, red & blue cake, running, jumping, and flips.  We also missed Ellyana’s first softball game of the season.  She had a pretty good night, though, going two for three off the pitcher and smacking a solid grounder off the tee.

Or so we’ve been told.

JaLana and I were back at Children’s Hospital in St. Louis while all that was going on, hoping to figure out a way to get the swelling down in Annaka’s tummy.  Three albumin infusions and a blood transfusion later, along with some tweaking to her meds, she’s doing better.  Her mood has lightened, her appetite has increased, and she’s more comfortable sitting up on her own.  This is not surprising, though, considering that her volleyball-sized belly has now been reduced to a more manageable softball-sized gut.

Siblings, I guess, if we want to add to our society’s panache for the war metaphor, are the collateral damage in these chronic health campaigns.  We obsess over the tiny little patient, for good reason, and parents often get plenty of sympathy, but the brothers and sisters sometimes get overlooked.

Fortunately, Annaka’s brother, whom she adores, and her sister, whose hair she likes to pull, are blessed with remarkable grandparents who are so good at what they do they make their grandchildren’s extended stays away from home seem like summer camp.

As of right now, Annaka is waiting for some red tape to be cut before being officially put on the liver transplant list.  Before the infusions, we spent an additional couple days in St. Louis as out-patients, meeting with doctors, social workers, financial experts and other officials as they walked us through the labyrinthine world of very serious medical procedures.

Doctors also had to run numerous blood labs and other tests on Annaka, including some in which she had to be sedated. Unfortunately, because she is such a little girl and such a “hard stick,” when it comes to placing an I.V., she even had to be put to sleep with gas.

Doctors estimate her PELD score, (Pediatric End-stage Liver Disease) based on her labs and tests will be in the teens.  This number will most likely not be high enough to get her a donated organ in the immediate future, but it is a start. Due to Annaka’s failure to gain weight, her need for a feeding tube, and the fact that she needs infusions to keep her belly reasonably sized, the transplant team also plans to apply for “exception points.” If approved, these points are added to the PELD score, which will move the candidate up the list.

Thus we find ourselves at this very weird place.  Instinctively, we want her to get better.  However, we have also resigned ourselves to the uncomfortable truth that in order for her to get truly better, she needs a new body part.  However, in order for her to be eligible for the new part?

Yeah, she actually has to get worse, but that is the cold, hard logic of organ transplantation.  Her bilirubin level has to go up.  Her itching has to get more intense.  Our little baby girl, who still has the heart to smile at every nurse she sees, even the ones who poke her in the arm looking for a vein, has to move closer to the end before earning the liver that will save her life.

So I guess we have started climbing this mountain, then, and like most climbers, we are anxious to get to the top.

Rules Matter

Rules matter.

This is not a profound statement, of course, but I do often find myself mulling over rules this time of year.  It’s May, and for a school teacher that means the brief end of yet another nine-month foray into the wilds of education.  As an English teacher, May also means plenty of research papers to grade, with many misplaced modifiers, sentence fragments, and unclear pronoun references to go with them.

Grammar rules do matter, but it isn’t so much the rules in and of themselves.  What matters is the idea that we agree on a certain way of doing things.  One inch margins may look nice, for example, but they don’t necessarily make you a good person.  If we can at least agree on the margins, however, we can then move onto more important ideas.

This May, though, I have been thinking about rules a little more than usual, particularly those English rules, because this is the last May I have had the tremendous privilege of working with Mr. David Ruff.

Mr. Ruff, or Ruffy, as he is often called by so many colleagues and students, former and otherwise, is retiring from teaching after thirty-two years.  For most of his life he has taught his students rules that matter about our language.  He did his utmost to instill in his students a framework for composition and a background in literature.

 Mr. Ruff was amazing at his job.  Mr. Ruff was so good, in fact, that trying to discuss these gifts in this mere column will simply end up sounding trite or rushed or a little bit of both.  Instead I will touch on, very briefly, three ideas we might consider about ourselves and about life in general, ideas solid in my mind after working with Mr. Ruff for just a few short years.

To begin with, as mentioned, rules do matter.  Rules can change, of course, and they do, particularly when it comes to language.  However, we do need those common assumptions to help clarify and streamline our dialogue, to get the very most out of our discourse. 

Unfortunately, we wallow now in a culture that, in some ways, has done away with many rules, grammatical and otherwise.  Basic assumptions of civility are often tossed aside.  Respect for our elders and compassion for our young, two tenants absolutely vital to a civil society, seem to fray at the edges like a worn out rug. 

Secondly, questions matter.  Knowing the rules and having enough respect for each other to follow them never negates questioning those rules and also questioning each other.

One of the most important experiences of my career happened just two years ago.  After months of working on a new curriculum for our freshmen students, we presented the finished product to the department.  I was proud of our work, which has always been a vice of mine, and I was ready to soak up the kudos from our department head.

Mr. Ruff, though, had questions.  “Why was this story chosen instead of that one?”  he asked, along with “What happened to this novel and that assignment?” 

His questions weren’t rude, nor were they meant to belittle. They were just legitimate questions that needed answered before we presented a new curriculum to hundreds of ninth graders.  We needed to know why we were doing what we were doing. 

Do you know what happens when a society stops asking itself tough questions?  Do you know what happens to a nation that no longer thinks it’s necessary to ask why it’s doing what it’s doing?  Be patient.  You’ll find out in November.

Finally, people matter.

After being moved to the high school I quickly learned that if I was going to be absent, it was kosher to tell Dave.  I learned this after about the third time I missed a day because of a sick kid.

“Everything OK?” He’d ask.

This confused me at first and I wondered if he was being nosy, which didn’t seem to be his style.  However, I quickly learned that his concern was genuine.  He just seriously wanted to know if everything was OK.  He also wanted to know if I would be gone in the future, but not in a “big-brother, keeping tabs” kind of way, but in a “Hey, keep me in the loop so I can best help out your sub.”

 Group unity was important to Mr. Ruff, and so he often invited us all out to his compound in the outback of Altamont each summer to reconnect before August.  From his perspective, we weren’t just colleagues, we were a team, and regardless of our differences, the team was the thing.

Nowadays, sometimes it seems we risk devolving into extremely solo individuals, our playlists and queues always waiting, ready to rock-a-bye-baby us into our own sleepy day dreams.  These might seem like harmless habits, benign symptoms of a technologically enhanced world, but if I’ve learned anything else this past year, it’s that without each other, none of us stand a chance.

Returning to this idea of question-asking, then, we in the English department have been asking ourselves one question for the last few years, sometime out loud, but often quietly to ourselves:  “Now what?”  For so very long, to be a teacher at Effingham High School meant also to be Ruff’s colleague; to be a B-winger meant to arrive at work after he did and to often go home before.

What we all might consider, then, is this: when in doubt, cite your sources.