The Official Thomas Bickle Blog

Epilogue #Last

2008-09-13T21:53:00.001-07:00

One of the sweet habits of Thomas’s that I’ll always marvel over was his “job.” He always had a job – at a certain time of the evening, each night, he’d get up and do whatever new activity he was practicing at the moment for about 30 minutes.

We first noticed the pattern when, around 8 months old, Thomas started pushing an empty laundry tub around, back and forth across the front room, every night after dinner. For the first couple weeks, he did it on his knees, and then as he got better at walking, he’d push on his feet, back and forth and back and forth…

Later, the evening walk covered “job time,” so the jobs went al fresco. My hearts is sore this fall as acorns have begun to appear again; Thomas would carefully inspect several at a time on our walks and then hand me the best ones. Deposits were to be returned from my pockets every 10 feet or so.

After that, Thomas’s job was putting his animal magnets on the fridge in a very straight line. Then making play-dough & crayon towers, then writing while making counting sounds… it was always something. He would work really hard at his job for a few weeks, and then, satisfied, he’d move on to his next effort.

Leaving this blog feels like that. I am someone who just writes, period. It surprised and encouraged me to find that my family’s story had found purchase in so many hearts, but I honestly don’t think I could have managed Not writing about this in some way.

Whether I was telling the story of our exhausting in-and-out-of-hospital weeks, or just bragging about how cool Thomas was, writing about our experience helped me sort it out, review it, hash it up ‘til I could get it past the lump in my throat.

I’m not done grieving, not done remembering. Not done connecting with the people who love us. Not done writing. None of that, by far. But … I am thinking of Thomas looking at the laundry tub after the third week, and instead of pushing it, stepping in to pretend to drive it. I think that starry-eyed carrot top of mine was right – you take what you’ve learned, and then you re-imagine it.

We’re done here, with the blog, I mean. But we’re taking all the support and memories and tears captured here with us when we go. Our next job is one Thomas was great at – making the most of life in spite of cancer. In honor of life.

I told you he was smart.

So in honor of Thomas, thank you for being here. And good night.

Epilogue #2

2008-09-13T21:40:00.000-07:00

Just so's you know - we are doing well. We are remodeling the living room*. Scott is starting a new job Monday. We are starting to get out and about a bit. We're still sort of stilled from our vacation. We're sad. It's good. Or at least, it's all welcome.

*This is fair a compromise from our first instinct, which was to add to the end of the memorial service program the invitation: "Family is welcome to join us for a short ceremony in which we will explode the house into frickin' smithereens," and the impulse to see even the walls as a souvenir of our life with Thomas.

Epilogue #1

2008-09-01T20:06:00.000-07:00

Here we are. Back in town. Back at the house. Back where we started, but of course not really.

The memorial service was beautiful. I can't imagine a better representation of Thomas's life, of our life as a little family. We were joined by people who loved Thomas, and people who loved people who loved Thomas, and people who loved us before Thomas was born, and people who wandered into our lives after cancer blew the front door off. We all cried and laughed and listened to some beautiful singing. There was cake. All the important stuff.

Scott and I went away to quiet places for a few weeks, and then we came back, eyes blinking in the bright light. Everyone asks, "How are you doing?" It's hard to say.

And even when I know the answer it's hard to describe. We're doing better, in a lot of ways. There is less stress and more sleep. Our awareness of Thomas's suffering and his sad fate took such a large toll these last years. It feels strange and exciting to make plans of any kind, to cook dinner, to do a silly dance because we're feeling light-hearted.

And then, of course, we're doing worse in others. We miss him. I spent some time looking through all the photographs of Thomas before we left town, and I was amazed to see how clear the effects of the cancer were in so many photographs. I think I couldn't admit to myself, until it was safe, how hard this has been; how hard it was for Thomas.

So when someone asks, and the listener has the time, I try this exercise to explain how we are:

Hold out your left hand in a fist. Now put out your pointer finger and your middle finger. Imagine this is all your joy.

Now put our your ring finger and your pinkie. This is all your sadness.

Now take your right hand and squeeze the left fingers, really, really tight. That's what living under threat of cancer has done for these last years.

And then take your right hand away. That's the strangle hold of cancer letting go, leaving both our sadness and joy behind. It's just that there's more room for both of them now.

Scott and I are taking it easy, taking care of ourselves, taking care of each other - all the things you all told us to do in your kind emails and letters (20 thank-you notes down and 146 to go, by the way!). We are making careful and slow forays back into the world of work and friendship, and we are being welcomed back very gently.

In fact, it's like this: hold your left hand out again, and think of the tears and silly dances that those fingers represent. And then let a friend hold on to it.

So long and thanks for all the fish

2008-08-07T19:52:00.000-07:00

We're doing ok. I mean, whatever that means right now. But you don't have to worry, is what I'm saying.

I wanted to say two things -

1) Thanks for all your kind thoughts and prayers and casseroles and making-room-in-your-hearts for us and for our dear son. Your words and presence have meant the world to us.

2) We are heading for the hills. If you know me, and you don't hear from me, we're ok. We're getting out of town for a couple weeks. It'll be good.

thanks.

2008-08-04T20:30:00.001-07:00

Kim Breen's tender obituaty for Thomas here.

sad facts

2008-08-02T21:03:00.000-07:00

*Thanks to Kim Breen for writing the obituary that is appearing in today's paper*

Fact 1: There will be a memorial service at Bethel Lutheran Church in Dallas at 11am on Monday. Any real-life friends of ours are welcome to come.

Fact 2: Feel free to do flowers or nice emails or whatever is natural for you in times like this. You could also give, in Thomas's name, to Community Hospice of Texas, who gave us such profound support during these last months, or to Children's Medical Center of Dallas, whose empowering help moved us through the labyrinth of cancer.

Fact #3, slightly less sad: Also, I know that I have been very honest here about our financial situation, and some of you have already expressed concern about that. Recent fundraising by SWA and the AAFOC (Austin-Area Friends of Candace) did exactly what it was meant to do by providing us a worry-free way to take off work while Thomas was sick, and to spend time with family and each other now that Thomas is gone.

Besides that, the very kind and gentle people at Rolen-Wood Funeral Home have provided their services for almost-entirely free, and of course Bethel Lutehran isn't charging us. So that concern is gone as well.

Fact #4: Unbelievably kind gifts like these and yours, and your kind thoughts over the last however-long have made a path through the dark place for us. You will never know how much your help has meant to us, and we will never stop remembering.

Last fact: We are busy being sad. We are hearing your kind words, but I am probably not going to respond for a while.

-Sarah

Sad News

2008-07-31T20:07:00.000-07:00

I have something sad to tell you.

We lost Thomas this afternoon.

He died in his dad's arms. He was not in pain.

He'd had a very, very exhausting day and night and morning of wet, depressed breathing, but he hadn't really been alert since bedtime last night.

These are the last three things Thomas did: the "hey, look at me, I've got a humungous bowl on my head" joke for his hospice nurse on Tuesday, and then last night, he woke up to watch Blue's clues and to wave at Steve and Blue. And then he gave his dada kisses before bedtime.

Today, we held him for a long time. We told him lots of good things, and sang to him, and held him some more.

gloom and loom

2008-07-27T20:36:00.000-07:00

This week was terrible for Thomas. Like last week, but with more restlessness and more moments of real discomfort.

It's been hard on us. We try to take breaks, to get off the couch where Thomas sits for some period of time, but what is there to do?

I go to Target, Taco Cabana, the garden store. Eventually, I wander into my friends' homes or evenings at the pub and ...I don't even wander. I loom. I say unconnected things and when I realize that I'm not making sense, the effort of imagining trying to connect the dots exhausts me.

Cancer has finally disrupted the last bits and pieces that made up our family routine. The bath, the bedtime book - it's like Thomas was humoring us the last few weeks, knowing how much these gifts of parenting mean to us, but now he's done. He's too exhausted, too sensitive. He'll start to color, and then stop.

Even on these tough days, though, Thomas has perked up for our daily Cars* viewing, and for the early part of visits. He's still a show off... or maybe he's just tired of us looming.

*seriously, Cars? Great movie. has to be - I've seen it 8 times now (not including the 3 times in Spanish when we were in the hospital) and I still like it.

Gotta dance Gotta dance

2008-07-20T09:54:00.000-07:00

Hey, just a quick update. We have caught back up on Thomas's med needs for now. This means that he has had a more relaxed and alert two or three days...That's as compared to Total Crap days, but still ...we'll take what we can get.

He even got up off the couch three times -

a) to dance the salsa with Handy Manny

b) to hang with our favorite Child Life Lady, Cinda
and

c) to march over to the pantry, despite the fact that the trip clearly exhausted him, and demand a cookie

And Now for Something Completely Different...

2008-07-18T13:06:00.001-07:00

I have here a Friday treat: a passage from the short memoir I mentioned earlier by Elizabeth McCracken. Her piece "This Does Not Have to Be a Secret" appears with several other poignant and original voices in this month's O magazine's "Memoir Feast"*. Her setting is the time surrounding her first son's still birth.

********From "This Does Not Have to Be a Secret" by Elizabeth McCracken*************
"As for me, I believe that if there's a God...then the most basic proof of his existence is black humor. What else explains it, that odd reliable comfort that billows up at the worst moments, like a beautiful sunset woven out of the smoke over a bombed city.

For instance: In the hospital in Bordeaux one of the midwives looked at us and asked a question in French. [...McCracken explains her and her husband Edward's mediocre French proficiency...] This particular [midwife] was a teenager, checking itmes off a list. The room was like a hospital room anywhere, on a ward for the reproductively luckless, far away from babies and their exhausted mothers. Did we want to speak to -

'Excusez-moi?' Edward said and cocked an ear.
'Un femme relgieuse,' the midwife clarified. A religious woman. Ah.
Here's what she said:
'Voulez-vous parlez a' une nonne?'
Which means, Would you like to speak to a nun? Of course in Catholic France it was assumed we were Catholic.
But Edward heard, 'Voulez-vous parler a' un nain?'
Which means, Would you like to speak to a dwarf?

When he told this to his friend Claudia, she said, 'My God! You must have thought, 'That's the last thing I need!''
'No,' Edward told her. 'I thought I'd really like to speak to a dwarf about then. I thought it might cheer me up. '
We theorized that every French hospital kept a supply of dwarves in the basement for the worst-off patients and their families. Maybe it was just a Bordelaise tradition: the dwarves of grief. We could see them in their apologetic smallness, shifting from foot to foot.

In the days afterward, I told this story to friends over the phone. Our terrible news had been relayed to my friends...and now I phoned to say - to say what I wasn't sure, but I didn't want to disappear into France and grief....We ordered carafe after carafe of rose', and I told my friends about the dwarves of grief, and I listened to their loud, shocked, relieved laughter. I felt a strange responsibility to sound as though I were not going mad from grief. Maybe I managed it...."
*************************************************************************************

********Dear Oprah, Please don't sue me. Love, Sarah

Love Seat

2008-07-13T06:51:00.000-07:00

I'm writing, as you may imagine every blogger doing, from the couch, in my P.J.s. I've got yarn and needles and a pattern book, garden books and mystery books and magaizines. Things to drink, my phone, both remotes, kleenexes and a little bag for them. It's like I'm six and I've got the flu.

But no, it's all because of this little boy snoring beside me. We've been on the couch for a little over a week. Thomas has spent very little time awake. Some of this is because we had to bring in the big guns to fight nausea, and those medicines make him even sleepier. Some of it is because his pain medicine dose has grown to a size his system just can't take standing up.

And some of it, we fear, is because his body is just tired from its struggles. So Thomas wakes up to get more medicine and, when he is comfortable again, he is able to relax and rest.

We had to really think about the reasons. Our hopsice nurse is a veritable Madame Pomfrey; if we wanted her to conjure up something to keep Thomas awake and active, she could do it. So Scott and I have had yet another of these outrageous "How much doing is too much doing?" conversations. We decided that this, too, goes on the list of things that seemed like a good idea when we were anticipating this moment, but that doesn't fit now that we're here*.

Scott sent me a video at work - I am still working for now, half days, something I could not have chosen if not for all of you - of Thomas playing with bubbles. I don't want to share it with anyone. I know, looking at it, how shocking it is. Thomas is pale and already so skinny, and he is laid out in the pillow and lifting his arm in the way that shows how weak he is. But what I can see, looking at it, is my son, having a moment of delight with his dad. I don't know how to explain the way our horror and grief sits right next to our regular old affection and daily kindnesses and humor - all of it piled up together on the love seat of our hearts.

Novelist Elizabeth McCracken has a basically life-saving, sad, and hilarious excerpt from her memoir in this month's O Magazine called "This Does Not Have to Be a Secret." I may or may not resist the urge to quote great swaths of it here, especially the part about the "dwarves of grief." She speaks of her first son, stillborn, and of the great "family tree of grief" that you get grafted into when something like this happens.

This part I'm about to quote perfectly summed up for me my feelings about the video of my sick son popping bubbles. I know that he looks sickly, and our story is pitiable, but what I see is Thomas and not The Boy With Cancer.

And Thomas is not dead, but something inside of me quickened when MCracken wrote, "I'm thinking of that Florida lady again, the one who wanted a book about the lighter side of a child's death, and I know: All she wanted was permission to remember her child with pleasure, instead of grief...He's dead but of course she still loves him and that love isn't morbid or bloodstained or unsightly, it doesn't need to be shoved away. It isn't so much to ask."

*ctel, we did do the steroids after all, but in a cream form, and we have seen no ill effects

2008-07-10T20:24:00.000-07:00

On the left: a week's worth of meds, last week's dose. On the right: a week's worth of meds, this week's dose.

We are fighting his pain.

Hard to believe that this pic - of Thomas being a bridge for his train - is from two weeks ago.

It's been a very difficult week. I think there are difficulter ones ahead.

Fake but Open Letter*

2008-07-07T08:49:00.000-07:00

"Dear Will Smith,

Well, my Independence Day weekend was hardly a holiday from anything. Still, I wanted to say thanks for making yet another funny and odd and thoroughly diverting movie.

These days, I don't really want to leave my son at home, but if I don't get out a bit, I turn into a creepy villain myself, so ... off I went to my local OverchargeOPlex.

I could have seen Wall-E, but let's face it, I've got quite enough cute in my life - (not to say that you're not totally adorable, of course) what I needed was that ulimate in painkillers, the Escapist Action Flick. Having finished all seasons of Alias and Buffy, I knew you were my only hope. And you delivered, as a hero should.

Of course, a fun movie these days reminds me of swimming when I was pregnant: a blissful, pressure-free zone that lasts until getting out of the pool makes the renewed experience of gravity hit like a ton of bricks. Still, for that couple hours of relief and silliness, in this season of freakish backwards macabre pregnancy, I wanted to say thanks. *

Sincerely,
Sarah McManus Bickle"

*This is not to say I wouldn't recommend asking a new writer to take a final look at continuity for the whole narrative after the first director's cut on your next July 4th offering, but still....

switchback

2008-07-01T20:40:00.000-07:00

Three weeks ago, I remember watching Thomas jump around the living room.

"Ribbit," he was saying, dragging his knees under him, "Ribbit."

This isn't so bad, I remember thinking: We are limited by his good days and bad days, but this is still pretty fun. He drew what appears to be a face today, and now he's being a frog. Which is awesome.

It hasn't been entirely downhill since then, but ... have you ever hiked back down a mountain? It's like we've hit the switchbacks. We're cutting back and forth, covering ground that looks familiar, but descending for sure.

Thomas's abilities seem to be stable, but we have had to double his pain medication dose in the last three weeks, and that makes him sleepy. Scott is always coming up with way to fight this frustrating side effect, but let it be said for the record that caffeine does not have the desired outcome. On Thomas, anyway.

The sleepiness masks the other symptoms, but we have begun to see them. I won't list them all here. In fact, it's hard to know what to say. The sad has gotten into our shadows and follows us around every corner.

But then, so does Thomas. I realized that I'd been a little uptight this week when I realized that Thomas had added a "Pursed lips and crossed arms" act into his routine. He was mad at me, but I cracked up. Can't imagine where he picked that up.

Mental Overload, a bit.

2008-06-26T05:35:00.000-07:00

I'll be back soon. We're kind of having a tough week trying to manage Thomas's pain and his sleepy-making meds.

Weird

2008-06-19T17:55:00.001-07:00

So, it's weird.

Thomas had a really difficult day yesterday; lots of breakthrough meds, general grumpiness, and sitting on laps. Did some of his strange, loopy motions that seem to be med-related, but which could be tumor-related.

Then, today, he was totally hyper and didn't take a nap; ran around like a champ all day doing cool kid things like learning how to make splashes "jump" in the water by squeezing your fist, and playing "frog."

Trying to keep up with the arc of emotions and needs at our house is a full time job. I don't have the strength for it. We try not to take too much stock, not to look at the big picture. It's too big.

When Scott's mom stayed with us recently, she remarked on how hard it is to see all the space cancer takes up in our lives until she visits for a 24-hour cycle. I can see how this is the case - people ask me why we're so tired, and my mouth falters. The answer is something like,

"Well, Thomas got an extra med dose early in the day, so he took a really long nap, so he went to bed late, but we got up to give him meds at 3 am. Then he had a coughing spell at 4:30, and we have to monitor that, because the meds can make him thirsty, or he might have stopped being able to swallow and could die. Also, he has this weird sleeping schedule, so he sleeps pretty lightly, so he took until about 5 to go back to sleep..."

There are more reasons, but I am too tired to explain them. Just trust me, it's weird.

Happy Fracking Father's Day

2008-06-14T20:42:00.000-07:00

So it's Father's Day. Scott and I ignored Mother's Day, things being what they are - though we aren't fans of Holidays Brought to You By Hallmark Cards to begin with. I think I'm supposed to be ignoring Father's Day, too, but I've been thinking about it.

I am thinking about Scott's journey over the last few years. He was working at Mad Science of Dallas when Thomas was first diagnosed, managing sales and instructors and thrilling children of all ages with highly scientific explosions. He went without eyebrows a lot.

Now, of course, there's plenty of madness, science, and thrills, but there are fewer explosions and generally enough eyebrows to go around (as long as he ducks when he throws the matches into the barbeque pit). Otherwise, I think Scott still seems himself as the Equipment Manager and Head of Training at home, and I couldn't be happier about it.

I've been so impressed at the way he's taken the whole stay-at-home-dad thing and made it something authentic and about his talents and personality. I don't know a lot of men who could demonstrate that kind of maturity and grace*.

Still, it's an exhausting job. One of the big things everyone says to me as a mom is, "Be sure and take time for yourself." Good advice, and believe me, I tend to err on the side of caution in that area. But because a lot of people forget that men can be caretakers, too, they forget to encourage the men to do the same.

Hospice did not forget that. When Thomas came under hospice's care, they reached out to Scott immediately. They asked him good questions, and came up with a team of helpers who provided additional interaction for Thomas - sitters and play therapists from Gilda's Club or ECI or heaven, more likely - and generally treated Scott like a competant grown-up with a lot on his plate. Their keen observations and funny stories and good suggestions could not be more supportive or timely.

I asked Scott if he wanted to write a blog to explain what a difference they'd made in his ability to go forward, and I didn't hear back for a while. When I checked with him, he said, "I really have been trying. I just keep writing this stuff, and it sounds really stupid. I just want to explain ... I just can't find the right words to say to honor the way these ladies have given their time to help me, and our family..."

So, when I think of Father's day, I am thinking of how Scott has fought his way through the mess of our cancer lives to make himself into the father he hoped he'd be. And, as always, I am thinking of all the people who keep us in fighting shape- these hopsice ladies who delight in Thomas's "'K'Bye!Thangoo!LadYoo!Bye Guys!Mwah!'K'Bye" each time - and all of our family and friends and supporters.

I hate getting sentimental on these Hallmark holidays. I mean, even getting with the spirit of things doesn't guarantee you'll find a card that works. I've been looking for a section called "Father's Day - Star Trek Jokes" for years, but I still haven't found anything for my dad, and the "Thanks for Leaving West Texas" genre of cards leaves us without options for Scott's dad, too.

So I guess if our situation wasn't so dire, I'd have kept looking for that Father's Day card featuring characters from Battlestar Galactica for Scott, but .... as it is, this kind of rambly tribute will have to do.

* shouts out to The D.G. and to G.A., on this - you guys were rocking the nontraditional dad thing way before it was cool

hellooo out there

2008-06-13T12:24:00.001-07:00

So, we're here. More to come first on Father's Day and later this week, but I wanted to say Hi and that nothing has changed that much.

Also, I thought I'd post this momento of a proud moment - Scott managed to coax Thomas outside yesterday, something that's been harder and harder to do.

Night in the Life

2008-06-02T07:53:00.000-07:00

So, I haven’t known what to say to update our friends and family. Nothing has changed that much with Thomas, just everything, a little bit.

On the same as ever front, he’s still a charmer. Some friends of ours came over to babysit the other night after Thomas went to bed. “We really don’t expect him to get up,” I assured them.

About 30 minutes later, I got a text: “He appears to be fine, but he is AWAKE and playing basketball.” Our friends said that once Thomas overcame his surprise that strangers had replaced his parents, he took them by the hand and led them to the basketball net. I’m sure he was thinking, “New people! Yay! I knew they started the parties after I went to bed.”

Scott and I laughed when we got the message. We were out playing pool, one of the few dates that seems to be a sure thing during cancer. I mean, think about it – what are you going to talk about over dinner?

One of the things we’re not talking about on our night out are changes in Thomas’s condition.

Last week, he has had a seizure for sure – we’d thought we’d seen them in the past, but there was no doubting this one. It was sudden and passed in a couple seconds, and he didn’t seem affected by it after it passed. Still, even now, I don’t know what to say about that.

Really. got nothin.

What I Did Over Memorial Day

2008-05-24T17:08:00.000-07:00

Thomas says, "I kicked back a couple of cold ones with my buddy, got some projects done around the house, went dancing..."

Happy Memorial Day, every body. Don't forget the reason for the season.

Montage - cue rousing music

2008-05-09T17:42:00.000-07:00

Well, this week was rough after all as we fiddled around trying to find the right medicine dose.

But there were a couple of cute Thomas moments that I had to share - for one thing, when he feels good, he works out with his dad, and I got a cute shot of them doing PT together. And then our good friend Tim, long-time family friend, stopped by and we got an adorable shot of the two of them. I hope Tim doesn't mind me sharing this shot - it's one of the best pictures of Thomas we've gotten in a while.

Three Nice Things

2008-05-07T07:49:00.000-07:00

Just a quick update:
1. Thomas is on a new medicine that is controlling pain better right now, which makes this week better than the last.

2. Also, it doesn't have to be given every 3 hours, so we are not quite so exhausted as we were last week.

3. Since he feels slightly better, he's been talking more on his pull-phone and making more complicated construction projects with his big Legos. :)

Potential Book Titles

2008-05-01T10:48:00.001-07:00

Every once in a while I get an overzealous commenter who thinks I should write a book. I doubt I will. But every once in a while, I like to think of what I could offer the world based on our experiences. Here are some titles I've come up with:

Coffee, Bourbon, and Ice Cream: Cure for Cancer?
No, but That’s Not the Point

How to Look Slightly Less Tired
Concealer, Mascara, and the Color Pink

Detective Novels: Key Components to Mental Health

Haiku for Every Occasion
…with contributions from over 100 Friends of Sarah!

What Not to Say to Sad People
preview here

Charming: How to Get Free Coffee Almost Anywhere

Scott, the Equipment Whisperer

How to Maximize Your Carbon Footprint:
Maximizing Your Packaging and Petroleum

Today, on Grouch News

2008-04-28T08:53:00.000-07:00

My favorite all-time Sesame Street sketch (yes, I have one) features Anderson Cooper from CNN. He's the reporter for the Grouch News Network, and he's got two Grouch talking heads on - Dan Rathernot and Walter Crank-ite. The schtick goes like this:

Cooper: Would you like to comment on this breaking news story, Dan Rathernot?

Rathernot [in grouchy voice]: I'd rather not.

Cooper: Walter Crankite?

Crankite: Bleuurrrgggghhhh.

And so on. Those are the only things they say. It's hi-larious to me, even though Thomas doesn't really get it.

This week, I've been trying to give our family members and friends a picture of where we are in Thomas's struggle. I don't know what to say. Can I explain how, despite the fact that there are no outward changes, we think he's gotten a lot worse over the last week? I'd rather not. What is there to say about his pain increasing exponentially each day? Bleuurrrgggghhhh.

I don't know where we are. But it's dark, and it stinks.

Note to Self: Don't Be Too Sad

2008-04-24T07:45:00.000-07:00

NOTE: are much more stable financially than we’ve been that entire time, so please know this isn’t any kind of under-cover plea. It's just generalized Raging against the for-profit Insurance Machine.

I’ve changed jobs a couple times since this started, and when people become aware of our situation I have to re-explain. I usually sum up: “Cancer. Quit job. Expensive. Sad.” I’ve realized that a lot of people think we got into our financial troubles by not having insurance. This isn’t the case; we’ve had tons of insurance.

It was, after all, my insurance company who helpfully reminded me to choose our anaesthesiologist carefully as we headed toward the ER and Thomas's first round of surgeries.

And I certainly had an insurance company when they rejected our bills from those surgeries, pointing out that our world-class pediatric neurosurgeon was charging more than the going rate that all those other (- what, 4?) pediatric neurosurgeons in Dallas were charging. Because what we really want is a surgeon who's working on the cheap.

And I had an insurance company when they refused to cover Thomas's chemo drugs last year, and simultaneously would not provide a comprehensive list of drugs that were covered, or a clear path to appeal that decision.

Frustrating? You betcha. Depressing, why, no.

I mean, it could be depressing. To some people. But not to me. My friend Gordon pointed out recently that Scott and I need to be careful not to become clinically depressed. That diagnosis would cause us to lose our individual health insurance plans, even though neither Scott’s nor my plan covers mental health at all.

Gordon has been chronicling his family’s struggles with insurance over at his blog, Real Live Preacher. Gordon is a smart guy. College-educated. An entrepreneur. Although Thomas's medical trials have been more overtly dramatic, Gordon’s experience very closely mirrors our frustration in trying to make bureaucracies speak plain English and follow through on their promises. It's hard to believe that people like us can't make the system work.

I know this is an election issue, but I don’t think any presidential candidate is going to solve this problem. But whether it’s my voice as a consumer or my voice as a voter that’s going to make a difference, I am going to have to holler about this for a while. Something’s got to change.

Shaking It, and Be Still My Heart

2008-04-23T07:55:00.000-07:00

When I first took Thomas to day care, he was itty-bitty. Eight weeks old: bed rest had eaten up my maternity leave. They gave me a form to fill out that covered his eating and sleeping habits, his likes and dislikes.

I suddenly felt terrible – I had no idea what his likes and dislikes were. What kind of mother can’t answer such a simple question? I agonized a bit and finally put “Likes: being held. Dislikes: getting his face washed." I guess I was going for partial credit.

Thomas’s personality has bloomed a bit since he was a tiny, hungry thing. I make a little list every night in my head of what he seemed to like and dislike that day. It changes, but we’ve got the main idea:

Likes: Things with wheels. Jumping. Things that jump. Tap-dancing on TV. Drums. People playing stringed instruments or brass. Music with a good beat. Dancing. Dogs. Making people laugh. Putting things in a row. The “mail’s here” part of each Blue’s Clues episode. Visiting our neighbors.

Dislikes: Trash on the floor (he always hands it to us like, “Here, I think this is for you,”). Not being the center of attention. Green or red foods. That whiney Baby Bear on Sesame Street. People being sad on TV. Our neighbors not being home to answer the door. Getting his face washed.

The past week, he’s bee a lot more sensitive to noise and disruption. He’s so grouchy, and there are a lot more items on the dislikes list than usual. We hate that TV is at the center of our family life, but hitting anything on the “likes” list lifts our spirits.

Last night, everything we did was the wrong thing and nothing entertained him for long. Finally, right before bedtime, we found the optimum morphine dose right as Blue’s Clues started. Halfway through the show, Thomas heard, “Mail’s here!” and spun around with his eyes wide. “Maizeer!” he said, wiggling his bottom and swinging his fists along with the show. We sang the song and I danced, too. This, I like.

Light It Up

2008-04-17T09:25:00.001-07:00

A friend of mine just let us know that Thomas will be honored with a luminaria at one of the local celebrations of Relay for Life.

I didn't know much about the event, but reading about how it honors people who have endured cancer and raises money for studies made me really happy. And Thomas's luminaria is being decorated in a train motif by one of my friend's students, a leukemia survivor; another in a long line of thoughtful acts done for Thomas by school kids.

We are so blessed by the prayers and kindnesses of all the people who care about us. I wish everybody who is fighting cancer had the support that we have.

Ratings Boost

2008-04-11T19:05:00.001-07:00

Here is Thomas figuring out his new gift from our sweet neighbors. And here is Dad managing to get some work done wihtout a baby pulling his pants leg. And here is mom goofing around with her camera.

Just a nice normalish day. We like those.

Texas, Our Texas

2008-04-10T08:51:00.001-07:00

Just FYI for family who've been calling, we made it through the storms just fine. Dived into the tornado closet with Harry the Dirty Dog and extra meds for Thomas at 4 am, but the storm missed our block for the most part.

Oi, vey.

Drawing

2008-04-03T10:52:00.000-07:00

It’s hard to say how Thomas is doing these days. It’s a wild roller coaster, but the ups aren’t as high as they used to be.

We’ve had occasion to learn how kids’ metabolisms process drugs more quickly than adults, as Thomas’s morphine dose has increased exponentially in the last few weeks. We thought things were getting really bad again last week, but it was just another case of pneumonia. And then, no, just allergies. Pardon me while I go vomit.

When he’s dosed up on morphine, he’ll play with us. But most of the time, Thomas doesn’t feel so hot, and he wants us to play his new game, and he is so not playing around:

Rules for the new game, Watching Over:

1)To initiate the game, Thomas will take your hand and lead you to the place where he is coloring or watching TV or playing with trucks

2) You may or may not be allowed to stand. Thomas will indicate his preference through hand motions.

3) Your job is to keep the desired pose – seated or standing – and watch Thomas doing what he’s doing.

4) You may not do what Thomas is doing. If he is coloring, you may not color. If he is eating whole grain fruity cheerios, you may not mindlessly nibble along.

5) You may not attempt to read on the sly. If Thomas discovers that you are concealing your disinterest in Bob the Builder by keeping the newspaper just out of sight for snatched moments of adult thought, said paper will be confiscated and shredded

6) Failure to comply with the rules will result in an all-out fit that will lead to Thomas having a headache

Scott was gone visiting his sister this weekend and, can I be honest, by Saturday night, I kind of hated Thomas. His new fussiness, my inability to decide how to discipline a kid who has only become grumpy since his pain increased ten-fold, and the interrupted sleep of night meds just frothed over into an intense grumpiness on my part.

We were chilling out before the bedtime routine started that night, and he came over to steal my newspaper. My first instinct was to yell, “Mo-om! Thomas is stealing my paper again!”

But . . . I am the mom. So I hauled him off to bath and bed a half hour early. I poured a glass of wine and finished up last Sunday’s paper. I liked him well enough before too long. I’d call it a draw.

Sad Thinking

2008-04-02T05:56:00.000-07:00

So, this is sort of a public service announcement for those of you with kids who have followed our story or are friends of Thomas's.

I don’t want to alarm anyone about the short term, but I've been thinking about how Thomas's death will reverberate in my own life, and in others', when it comes.

I don’t bring this subject up lightly, believe me. But I was thinking about Thomas’s little friends and cousins, and about how many of you have written me to say that you and your young children are praying for us. And though you may not be thinking of it yet, I have been, and I wonder what we will say to these little people when the time comes.

On this week’s episode of Mr. Roger’s Neighborhood, Mr. Rogers talked about the death of a pet with his “TV neighbors,” who are probably in the 3 – 5 age range. I noticed he did some smart things that I would not have thought of until I’d already said something unhelpful.

So, again, I don't want to worry anyone more than is necessary, but what can I say; this is really happening, and I am thinking about it.

Besides, you’re raising these compassionate, empathetic kids who are learning to care about the sick – I’m sure you’re thinking, too, about what to say to them.

So here are some websites that seem to have smart, helpful answers. I mean, you could google them yourself, I guess, but here are the ones I thought made sense*:

http://www.hospicenet.org/html/survive.html

http://www.ec-online.net/Knowledge/Articles/deathchildren.html

http://www.hospicenet.org/html/talking.html

http://pbskids.org/rogers/parentsteachers/theme/1666_t_art.html

The main idea seems to be – find out what the kid thinks, don’t over-explain, and don’t use vague or misleading terms that might scare kids, who tend to be really literal (like, “Death is like sleeping,”).

It’s a tough conversation, and not just for kids.

*sorry these don't link. I'm having a bit of html trouble.

Magic Beans

2008-03-26T23:30:00.000-07:00

Thomas’s new thing last week was the "magic seed” ..which can also be the “magic rock” or the “magic shell” or the “magic little train car.” He'd find something hand-holdable in the morning, and he’d hold on to it all day.

And by all day, I mean that if a task required two hands, Thomas would turn to us with the seed as if to say, “Hey, can you hold this for a sec?” I'd go in to give meds at 4 am, and he'd still be gripping the bumpy seed or little train.

This week, there's little magic. Thomas is having a tough time of it, so we are, too. I started thinking about how many seasons we’ve been through since cancer started, and how we've needed something different to hold on to at each point.

I've talked to a lot of parents by now whose kids are facing terminal diagnoses, and I think I see a pattern in all of us parents’ experiences:

Stage 1: Chaos of initial diagnosis. We shut down. Do what we’re told. Trust the doctors desperately. Needs: someone to remind you to eat

Stage 2: Anger. We’re mad at the disease of course, but it’s the doctors or nurses or relatives who get the flak. Needs: somebody to listen, and coffee

Stage 3: Learning Curve. Ok, we’re going to have to live with this disease for a while. Let’s get some control, make ourselves useful. Figure out the meds, the equipment, the lingo. Needs: smart nurses and docs who know how to teach

Stage 4: Exhaustion. I know how it all works, but I don’t care. Needs: A nap.

Stage 5: The New Normal. We hold our breath, but try to settle into an adjusted version of life. Siblings go back to school, parents go on a date. Needs: to be left alone a bit

Stage 6: The New Idea. Surely the reason why we’re not cured is because we haven’t found the right treatment, or the right hospital or doctor. If we’d think outside the box or try harder, everything would turn out better! Needs: Someone to listen, and doctors you can trust

Stage 7: Still Sick? Be depressed, anxious after new idea didn’t work. Needs: coffee

Stage 8: Nesting/The New Normal 2. This is probably the beginning of acceptance. We hunker down, prepare for what we can, try to hold on to some fun and peace. Needs: a little family vacation, nice family dinners.

Stage 9: Things fall apart. All stages occur in a single day, out of order, or concurrently. Needs: counselors, smart hospice people, extra patience for the spouse. Coffee.

Stage 10: Acceptance. We quit trying to segregate the sadness from the joy. We stop thinking of death as a thief. Needs: quiet, and friends who can sit with sadness. And coffee.

Diclaimers:
I’m betting on the Stage 10 thing. I think I can see that coming, but it's a guess. Right now it's all the downhill jumble; I can't see much at all, to tell the truth.

Also I’m not totally sure that other people have “coffee” as their main magic seed. I feel certain they should.

LUV Update

2008-03-25T17:58:00.000-07:00

The SWA silent auction raised well over a month's pay for me. People went way over the top in terms of generosity - in fact, one of the organizers told me today that someone came by and asked to just donate enough to cover a full day off.

I'm just ...flabbergasted by all of it. I really thought that, when this was all through, we'd be making up for lost time with an extra job or just ...figure something out. But with this kind of help, I'm able to take time to be home without rationing - and without making hard choices about bills. We might even finish up with the doctor bills before the end of next year. Which is just about the farthest thing that I could have imagined at this time last year.

It really is mind-boggling. There are so many people at my work who are undercover heroes - they are fighting cancer themselves, or they are caring for kids with autism or hemophillia or severe disabilities. The same is true of a lot of the people who read this regularly - you don't see them in the comments always, but I hear from them.

I am so humbled that people of that caliber have the energy to invest in just caring about us, about Thomas's story. And humbled that SWA Maintenance would include helping my family in the long honor roll of good deeds that they have under their belts :)

All We Need Is LUV

2008-03-18T13:17:00.001-07:00

Some of you may have heard of the flap going on with Southwest Airlines lately. I’m not going to address it here –I’ll just remind everyone that SWA has one of the cleanest safety records in the business, and our reputation will totally be resucitated when the media starts being as critical of grandstanding senators as they are of Gary Kelly’s truncated comments.

OK, OK, I’m a little biased. I love working at SWA. Working in Maintenance (on computers, not planes – don’t worry!) has been a trip – a trip to, say, some air base in deep West Texas. Everyone gets up early, works really hard. They love God, America, and deep-fried turkey, and everybody here is family . . . Loud, politically incorrect family who hate hippies but love me anyway. . . you know, Family. :)

They’ve treated Thomas and Scott and me like one of their own, even though I’m still just a contractor. Working here has brought me into the black on my regular monthly bills, but my coworkers have been conspiring lately to make sure that when I have to take time off, I can take it without worrying.

I had been trying to keep Thomas's story quiet here – I was grateful enough to have a great place to work. But my manager and her partner in crime sat me down a couple months ago and bought me coffee.

“So, we know you’re going to need to be home with Thomas sometimes,” said one.

“And we don’t want you to have to worry,” said the other.

“And everybody wants to help. I mean, everybody. They keep coming up and asking what they can do.”

“So,” and they looked at each other, as if to say, here we go: “We’re going to do some fundraising. And we’re not going to try to embarrass you, but you don’t get to say no. It’s just going to happen,”

“But,” said the one with people skills, “we did want to let you know ahead of time.”

And so…that’s what they'll be doing Thursday - raising money for my little family with a silent auction. Even though they’re in the center of a ton of Real Business. I keep trying to thank everybody (for this and many other kindnesses), but then there is crying, and that makes me look red all day . . . and that makes them make fun at me . . .it’s a vicious cycle.

So, thanks, guys– especially the awesome people in my group (ugh. Am weepy), but really everyone who’s donated or helped out or hugged or just been fun to talk to and work with and learn from at SWA.

Strangely enough, I don't feel funny.

2008-03-17T08:46:00.000-07:00

It was easy to forget, for a while, that Thomas’s “up” periods were largely fueled by morphine.

Every couple of weeks, though, we’d fall behind in the race against pain. Thomas would get grumpy and miserable and couldn’t be comforted or entertained. We’d readjust the timing and dosage and combination of meds, and everything would feel normal again for a while.

This past week, though, Thomas has still been doing the fun kid stuff – playing basketball, chasing grandparents, hitting the neighbors up for bacon - but his truly “up” times are getting shorter. The amount of morphine it takes to create those moments has spiked in the last week, and we can't always keep up with his increased needs. And he seems to hurt more when he hurts; we don’t have to guess any more if it’s a “two year old thing or a cancer thing.”

On the other end of the spectrum, Thomas is learning a dozen new words a week these days. He can tell us what he thinks is cool (airplanes, my earrings, the basketball net from Meemaw, people playing stringed instruments on TV), what’s yucky (the trash bin out back, wet stuff on his hands), and he has finally started calling Scott “Daddy” instead of “’Cott!”.

Scott’s and my neediness has spiked, too. It takes a much more concerted effort to enjoy his accomplishments and not end every present moment with the thought that this, too, is something cancer will take away. We tried half-heartedly to make some jokes about him jonesing for morphine, but it just ... isn't funny.

Some days we can do it, and some days …are hard.

17 syllables

2008-03-11T17:54:00.001-07:00

There is a long and storied tradition of sardonic haikus among my circle of friends (beginning with the now-famous Disco Haiku by RB: "I bought a record/I then bought some Brut cologne/I am set to go"). In that grand tradition, I bring you some thoughts on

Coping With Frickin Cancer Haikus *

Plan A Was Trying To Be Strong Haiku

Cancer's tough both ways
Instead, plan B: Irritate Scott.
Eat donuts, nails. Drink.

Plan B Failed Haiku

Plan B is right out.
In fat pants, I cry to Scott
about fingernails.

Next Plan Haiku

C: Mourn in public.
When people ask how I am,
weep wildly. Beat chest.

Plan D is Running or Eagles Song Haiku

Who can go the distance?
It is indeed a long run.
Run away; run home.

*I am poking fun at maudlinness here; please indulge my overstatements.

Quick! It's snowing for five seconds! Grab the camera!

2008-03-05T13:17:00.000-08:00

Forecast: Intermittant grins.

I Love You Austin!

2008-03-01T08:14:00.000-08:00

Update: I did find out who the instigator was. She is a "delegated" friend - a friend sent to us by a farther-away friend. I am suprised and not surprised by her thoughtfulness; the first time we met her, she babysat Thomas while we tried to have the "What Now" conversation with the doctors after finding out the worst news. I will be thanking her biweekly for the next couple years.

Also, I wanted to say that Thomas is having a great week or so. He was very sick with his Not-the-Flu sickness for so long that we started to think it was The Decline that we've been holding our breath against.

But we're not there yet. This week, he's feeling much better. There are discernible changes, but the big Thomas News of the Week was him finally catching some air while jumping, something he's been working on for a month.

Cheers to that.

I mean, I've always loved Austin, a lot. I'm not sure who the instigator is, but I woke up to a Paypal account filled with a LOT of small donations that added up quickly.

You are padding my If-I-Need-to-Stay-Home-from-Work account in a serious way...and giving us a little wiggle room as we adjust to Scott having quit his evening job (Thomas's needs becoming too unpredictable).

Thanks, Austin. I salute you with my organic free trade morning coffee. (you showed me the ways)

Minibreak

2008-02-27T18:31:00.000-08:00

We did catch a break this week - a family donated a night at Great Wolf Lodge for us. It's this very kid-friendly resort near here with a huge indoor water park. We went when it wasn't too crowded, and Thomas had a great time - a perfect low-key, no-pressure break for us.

Also, the room had a land line, Thomas's favorite kind of phone - nearly as big a thrill as the water rides.

I actually noticed a lot of special needs kids there with their families, and I feel like we'd all happened on this genius solution - it's a vacation without travel, and if, like Thomas, you can only do the fun things in very small spurts, it's ok because you can relax in the nearby room until you feel better.

Anyway, extremely nice break for us. Thanks, Happy Donor Family.

window in the heart

2008-02-24T18:24:00.000-08:00

A whole lot of what I have been doing in this space is trying to trace the lines of this disease: "This is where cancer is, and this is where it is not." A useful practice, over this long last two years.

That need, I think, is wrung out of me. The lines, at any rate, are fading.

This time two years ago, Thomas had been sick and then sicker and sicker. We had thought his ear tubes would make a dramatic change, but a week after the surgery he stopped using a bottle and would only nurse, weakly, mostly for comfort.

I couldn't put words on it then, but I began to have the sense of heavy, electric dread that precedes a tornado. I remember laying him down for a nap, early, and actually stepping outside to check the sky. He was diagnosed a couple of days later.

We have come back to that season. He is losing his balance. He hurts. There are a dozen small things that have already slipped by without us counting them. He is holding his head to the side.

A couple of weeks ago, Thomas and I watched Paul Simon get his Library of Congress award on TV. We were both transfixed by Allison Krauss and Jerry Douglass's version of my old favorite, "Graceland." We both danced on our tiptoes, and I have been singing bits of the lyrics this week, when I could sing:

"There is a girl in New York City
Who calls herself the human trampoline
And sometimes when I'm falling, flying
Or tumbling in turmoil I say
Oh, so this is what she means
She means were bouncing into graceland

And I see losing love
Is like a window in your heart
Everybody sees you're blown apart
Everybody sees the wind blow . . ."

Taking Orders

2008-02-11T19:46:00.000-08:00

Link O Rama

2008-02-11T18:54:00.000-08:00

I've had a hard time lately getting a bead on how Thomas is doing. When he feels bad, we give him medicine and he perks up fairly soon; it's been hard to bring incremental changes into focus.

Tonight, though, we were watching the upteenth episode of the Little Bill marathon. The only one I hadn't seen was the episode that our cable said was, "Mrs. Murray's Wedding." Sweet, I thought. I had just been wondering if the preschool teacher was married. Unfortunately, cable was wrong - it was the Guppies episode, and I'd seen that one.

On, then, to Wonder Pets. When bedtime finally hit, I heard myself I thinking, "They really write the hamster as the smarty pants, but Ming Ming is the one who does all the work." *

So it seems we've been spending more time on the couch lately. And when I think about it, I know we've been giving more meds. For now, though, when I think of Thomas's day, what I'm counting is the new games and new phrases, not the med changes.

This week he added "airplane," "howzYOdeegoin?" ("How's your day going?") and "I know what to do!" (from Harry the Dirty Dog) to his vocabulary. Thomas knows what the moon is for sure now, too, but he's still calling it "Goat" ...there's a story there, but ..another time.

Anyway, I wanted to say hello. We've slipped into a pattern here, and it's been hard to remember that "here" is still nowhere near normal.

*This is one of the only shows Thomas and I disagree on - he totally gits down and boogies to their surreal, atonal baby opera, while I keep trying to get him to watch Yo Gabba Gabba instead.

First Sentence:

2008-02-06T06:02:00.001-08:00

"Cookie! I like that!"

*video to come when I figure out how to upload

2.5

2008-01-24T18:25:00.000-08:00

So yes, things are sad. And yes, every day we grieve the loss of just a little bit of ground to cancer.

But can I just tell you some cute stuff? He is two and a half, and funny,and I just wanted to share this new toddler phase.

Thomas has discovered drama. He has been directing increasingly complex "scenes" with his stuffed animals. First, they just "talked" to each other, making the intonations of a conversation. It sounded like the practice tapes from when I first started studying Spanish:

"Hola, LKJLKJLKJ. KASJALDK estas?"

"Hola, KJLKJLj. Bien. KJLkK?"

Lately, the plot is thickening. Little Pig is apparently a baby. He begs for things that he wants. Thomas puts him to bed early, but Little Pig will get up and cry and whine in a tone of alarm extremely similar to the one Thomas uses after I lay him down for the night. Little Pig crawls to the end of the bed and gets down backwards, just like Thomas does after I've shut his door.

Then, Little Elephant, or sometimes Big Zebra*, will come over and, in a soothing voice, make comforting and warning sounds. Little Pig gets back into bed and lays down. Thomas covers the Pig up and pats the sheet three times. "Night night!"

I have no idea where he gets his inspiration...

*we're not-so-much with creative names here. we seriously considered renaming our then-pet dog Sam when we found out we were pregnant so we could use his name for T. (dog was too dumb to change)

Breadwinner

2008-01-21T12:42:00.000-08:00

So, this is my last post about money. I figure I should say something, but it’s hard to know what to say.

In the past, I’ve been very desperate and very honest about money here, and each time, readers I didn’t even know I had came out of the woodworks, so let’s stop here and say:

I AM NOT DESPERATE TODAY. THIS IS AN UPDATE, THAT’S IT.

The support of so many readers and friends and family and family of friends and friends of friends’ families …have brought us to a point that I think is familiar to most people – we have enough for today.

The extra gifts that we were surprised to receive over Christmas put us back on our own two feet: we’re using my paycheck to pay current bills each month. We’re even starting to slog through the last stack of hospital bills. It’s a big step. I am insensibly proud of this renewed independence, even though I know how many people it took to get us here.

Knowing that so many of you are like us, living close to the edge, I have very mixed feelings about leaving the PayPal button up. All along, I’ve known how bizarre our situation was, but like any parent, I focused on doing what I had to do for my son, without shame.

But, going forward, keep in mind that WE ARE NOT DESPERATE TODAY.

The reason why I’m going to leave our PayPal button up is there is I still owe Thomas some time. I do have a great job but I’m a contractor; I get paid when my butt’s in the chair. I am going to work as much as I can, but as Thomas’s care grows sadder and more demanding, there are just going to be some days.

Scott will need a break, I will just want to be home, Thomas will need his mom. And when we get to the end of all this, I’m going to need a break, too. I don’t think there’s going to be any braving it for a little while.

So should future donations appear – and we are not counting on them to eat or fend off the creepy collections agents like we have been – we are socking away money and positioning ourselves to ride this next season out. And one way or another, as we go forward, we are going with gratefulness to have had so much help so far.

Just so you know.

Sunday

2008-01-14T20:00:00.000-08:00

Sunday was a pretty good day - lots of time with my family. Note that in everyone in this (I know, dim) pic, everyone is playing with Play-Do except for Thomas. And the second is one in an ongoing series of jokes involving putting silly things on his head.

All Your Cookies Are Belong to Us

2008-01-14T18:28:00.000-08:00

It was a beautiful, sun-filled weekend here, but we spent most of the time inside. Thomas still likes playing around the house, and every once in a while he'll spend an afternoon on his jungle gym. Still, the trike has been in the corner for two weeks.

Saturday, he failed the cookie test.

We try to catch pain somewhere in the late-grumpy phase and before the real-hurting phase, but the line is awfully thin. I mean, he’s two. As you may be aware, two-year-olds are not widely known for their even tempers. Some fits are my little hothouse flower testing his boundaries, and some fits are his brain tumor giving him headaches. Tough call.

So, first, we offer a cookie or two. It distracts him and buys us some time while we asses symptoms. But Saturday, the cookie had no effect at all, and we could see that there wasn’t time to wait for Tylenol. Hospice had prepared a grape-flavored morphine syrup for us, and Thomas took it obediently. He felt almost immediately felt better.

We, however, did not.

I keep thinking that I am being too dramatic about each step here. But I am not; this is the real deal. This is the part in the movie where the family has survived the wreck at sea, but out of the waters a shark fin appears.

Holy Days

2008-01-04T18:52:00.000-08:00

Whenever Thomas got out of surgery, which has happened a lot, we'd get to see him finally when we got to the recovery room. We'd sit in the waiting room with our hearts in our throats for hours of surgery, getting periodic phone calls to tell us that he was still alive, still in process. Finally, we'd get the call that they were done, and then we had to wait and wait some more until one of us was allowed to come back.

The recovery room had a dozen or so beds very close together; you frequently have to scoot around another parent to get close to your own child's bed. The last time I had to fold myself into a spot in the recovery room, Thomas had had three major surgeries in less than two weeks.

I was sitting there trying to telepathize to him my deep regret that he had to go through all of this; I was trying to muster up the strength to stay put and not go screaming from the room.

A nurse came over to make small talk. About my hair. "Please leave," I said, "This is a holy moment, and you are *BEEP*ing ruining it."

Ok, I didn't say that. I played that scene vividly in my mind but I really just mumbled something about needing to focus and the nurse left in a huff.

Thomas is not as bad off today as he was then by a long shot, but I think little has changed for me. I know holy when I see it, even if I can't pull together the appropriate response.

And this time is holy. Thomas's fight is beginning; people talk all the time about fighting cancer, but that's not really the issue for us. Cancer's going to take what it will. The fight for us is to keep grief at bay; to protect the joy that's left to him and us.

He's still about the same as he was last week - more tired more often than he should be, but with a lot of "up" time. We're still managing pain when it comes with Tylenol. I'll get back to this space when the time is right, but until then, just know that no news is ... no news.*

*not to mention no swearing

Happy Annivers-a-ry (pounds table with forks, a la "So I Married an Axe Murderer")

2007-12-28T06:20:00.000-08:00

I’m not so good with numbers. I’ve been telling everyone that Scott and I were coming up on our tenth anniversary. And while I am turning thirty this year and we did get married when I was still twenty, this anniversary is apparently our ninth. It’s tricky.

It's kind of incredible that what has happened this year is that we have grown towards each other and not apart. I'm pretty sure that's largely due to the support we've received. It's actually incredible to begin with that a decision we made when we were mere babes has turned out so well for us. -and I'm pretty sure that one's on us, thank you very much. (Don't try this at home, kids!)

Anyway, just happy to be here. Thomas is doing ok. Running at about 80% energy, and with what looks like an ear infection, but no big changes this week. He has started trying to jump - can't get his feet off the ground but throws his upper torso emphatically up/forward. Started after watching Baryshnikov in the Nutcracker last week.

I like him. I like both of them.

Just a quick post from our house. Happy New Year.

Merry Well Enough Christmas

2007-12-24T17:22:00.000-08:00

Thomas is having a very nice Christmas. His headaches are still slight and intermittant; they haven't tainted this weekend too much. Mostly, he's been hitting the grandma circuit, charming the ladies, high-fiving the men, kissing babies. The usual. New pics ariving shortly - click on the Flickr link to see them.

Hope your Christmases are as full of wonder and grace as ours. Somehow, there is room for us to be blessed for now, and that in itself is a miracle.

Note:

2007-12-21T18:06:00.000-08:00

P.S.
This actually does not sound grateful enough. Can I try again?

Even if it had been a kind of indecent proposal (the next call being "Scott is to take the package to the corner and wait until the man in the Fedora gives him further instructions,") ...really, we would have been all for it. This gift meant that I got to stay home and hang out with Thomas all day today and pay for Scott's broken glasses without thinking about the groceries or bills at all. It's huge. Feel free to stalk on.
-Sarah

Dear Generous Presumably-Mafia Members,
We did receive your envelope with the money order. It was a very generous, and we are grateful. I couldn't understand what you were talking about when you made your annonymous phone call; I suspected we were being "served" or stalked by one of our aggressive medical bill collectors. But yes, we did get it. Thanks again.
-Sarah

The Most Powerful Woman in Travel and the Cutest Kid in the World

2007-12-12T05:50:00.000-08:00

You know how sometimes you go in to work and you have a meeting and then your teary coworkers come to tell you that the president of your large company has delivered two boxloads of Christmas gifts for you?

Well, I do.

This is just one of the extraordinary gestures made by friends and family and KLTY listeners and strangers and let's not forget my very kind neighbors this season.

I would love to list all the gifts we have received here and all the donors, but there are so many kindneses we've been shown that they wouldn't fit here.
We are constantly being reminded of how enfolded into love our little T is.
Thanks so much.

-Sarah

what we have

2007-12-04T06:39:00.000-08:00

A lifetime ago, when I taught English to kids who didn’t speak it, I’d pick up my students’ patterns of speech as often as they picked up mine.

In our multicultural classroom, I must admit we ended up speaking a kind of Amalglish by mid-year – a form of English mixed with common learner-errors, high school slang, and my personal tics*. Sounded something like this:

“OK, guys, let’s talk about your homework. Did you read the paragraph?”

“No Miss, I have too tired. And the book it’s like, blah blah blah*. Why it talk so much?!?”

“There’s no blah blah blah. Your reading is bad! Let’s read it together.”

The kids did eventually learn to speak more correctly, but some of the phrases stuck with me, especially that Spanish transliteration: I have tired. I have hungry.

Right now, we have sad at our house. This thing we know about Thomas, about the facts of our life, is very heavy. But somehow, we are still who we were. The language of our house is toddlerese; our cancer vocabulary doesn’t cross over as much as it has in the past.

One reason for this is that we are in a surreally blissful window where Thomas is off of chemo and not in pain. We haven’t seen him without drugs for very longbefore now, and it is a beautiful thing to see. He is talking and eating and trucking around on his trike, inspecting leaves and collecting acorns. He has figured out that the ladies love to be blown kisses and that most of the time, it’s funny when you put something on your head. Sad does follow us everywhere, and it looms ahead, but right now, we are a family, we are together.

Another reason why our cancer words have been put in storage for now is hospice. I was very grateful to learn that one of the main jobs of hospice in pediatric care is to reduce our load as the “project managers” of cancer. For this stretch, we get to just be parents. The calling around, getting the meds, getting the equipment, asking the doc the questions, getting the paperwork to and from the correct offices –that stuff isn’t our job any more, and that is a very good gift.

We are grateful to not have to look ahead just yet. Days with Thomas are as bright as the leaves he marvels over on our walks: vermillion, saffron.

We have sad. For now, we also have Thomas, and he outshines.

*To find out your verbal ticks, teach a group of kids to talk like you.

Sad

2007-11-23T10:00:00.001-08:00

One of the things Thomas’s oncologist is good at is warning us when we’re about to hit the big stuff. Phrases like, “I have bad news” give our minds time to race to emergency stations and brace for what’s next.

So, I have bad news.

Thomas’s MRI results from last week showed that his tumor is back. It is inoperable. We have discontinued chemotherapy.

We are sad, intermittantly, or underlyingly: it's hard to believe this is real when Thomas is riding around on his trike and "talking" on a plastic measuring cup held to his ear. Off the chemo and not experiencing effects of the tumor yet, he's a handful, squeezing the fun out of every moment of the day.

I don’t know exactly how the immediate future will look. There are conversations and meetings to be had, some easier than others. I think the next couple months with him are going to be golden, so we're going to try to focus on that.

As far as y'all, our faithful readers, go, we appreciate your support as much as ever. We're ok for now. We know you're there for us and I promise, we'll let you know if we need anything.

I do think we'll be on haitus here at the Thomasbickle.com blog for a month or so while we focus on getting through this very cold season.

Happy Feet

2007-11-15T12:57:00.000-08:00

Thanks for all your encouragement, everyone.

I was thinking about how, if you just heard a list of all the things that have happened with Thomas, that you might think he's a sad kid having a really tough time of it.

You'd be wrong. Thomas is totally fun. The chemo has made him tired, and his balance has never fully recovered since the last surgery, but he is adventurous and funny and a real show-off, which is how we make 'em around here.

Here, for example, is a (really dark, again, but I think you get the main idea) video of Thomas being adorable.

Earlier this week Scott and I were watching Happy Feet - that cartoon penguin movie - and Thomas is hanging out, making his cars roll and say "vbbbbbbt". We get to the scene where the baby penguin discovers his native talent for dancing and does a little tap-dance solo.

...And Thomas's ears perk up, he looks at the screen, scrambles up onto the coffee table and does a toddler tap performance.

He did it twice, and we got it on film the second time.

:) Enjoy. Happy Thanksgiving.

Enjoy!

Pretend I Posted This Last Thursday:

2007-11-11T08:19:00.000-08:00

Even before we went into the hospital, last week kind of bit the big one. We're doing better now, but out of gratefullness to our rescuers I thought I'd post this retroactive, belated entry from last week.

Also, Thomas is doing better and therefore we are much more cheerful, too
**********************************************************************************

I’m sure you can imagine that I only write here the things that I can manage in my head. My real fears and a lot of our worst moments are too heavy and raw to be handled in this kind of forum.

Overall, I think we’ve been pretty tough-minded about Thomas’s cancer. We cry when we have to, and we focus on the short term. We do what has to be done with minimal complaining and only enough drama to keep us from imploding.*

Truth is, though, my ability to keep my head in this outrageous game is weaker all the time. Last Wednesday Scott called me to tell me that he’d left the pharmacy empty-handed: the chemo drugs Thomas is taking for this round aren’t covered. We needed to come up with around $300 immediately.

I went into motion; where Scott’s magic cancer skill is charming home medical equipment into working, mine is whispering cooperation into the souls of the bureaucrats in charge of Thomas's care. Hours of waiting on hold and frustrating phone calls were to no avail; there was flat out no money for those drugs, anywhere.

Last year, I would have launched a write-in campaign to get the drugs covered or written a compelling blog entry about our needs. But I’m working. I’ve been doing this a long time. I’m tired. I cried.

Fortunately, I cried to the right friends and family members. I continue to think I have plumbed the depth of public generosity for Thomas’s case, and I continue to be wrong.

We had the next several months of chemo covered within a few hours. -And then Scott just managed to find a very part-time evening job that will put us in position to budget for the medicine ourselves before too long.

...So we’re ok for now. We're terribly grateful, as always. It just . . .

Cancer, you are getting old.

*many of you may know that, for me, this is quite a wide loophole...

Little House in the Suburbs

2007-11-06T19:06:00.000-08:00

We're home. He's conked out in robot pajamas in his own bed, with the lamb whose name is Bear and the hippo.

He got up and up and up and I didn't grumble once. One more hug, please, with no port needle in his chest to avoid. One more chance for bare feet to curl into the waistband of my p.j.s as I carry him back to bed.

It's night night time, and I am freshly grateful for all our little rituals - the evening walk, the bath, the book we always read last in the chair that grandma gave us. We fit so well in this little house.

In the Big House

2007-11-05T06:02:00.000-08:00

Hey, quick note to people looking for us: Thomas is doing ok, but he did go into the hospital on Sunday. He ran a fever off and on over the weekend, and then he started to look really weak Sunday morning, so in we went.

We sat in the ER all day to find out that it's nothing too serious, but his white blood cells counts were pretty low. They gave me all kinds of neutrophil and lymphosyte counts, but I'm too out of practice to remember what the good numbers are. Besides, he wasn't that sick - he was keeping my attention away from Biology 101 pop-quizzes (that stuff will come up, kids!) and on his attempts to tear the phone off the wall.

We got a nice, bright room where Thomas will be for a day or two for observation and antibiotics. He had enough energy to ride around the floor on his little three-wheeler before bedtime last night, so I am thinking this will be a short trip.

A month or so of chemo

2007-10-29T18:30:00.001-07:00

Thomas is doing pretty well. No real sickness yet. The drugs do make him sleepy, so he's been taking a second nap in the afternoon. That makes planning to go to the grocery store or on afternoon errands tough....and then he compensates by being up for an hour or two around 3 every morning. Putting him to bed later doesn't help -his p.m. meds make him drowsy, too.

I'm sure we'll figure out a timing that works for us eventually. Right now, we're grateful that he seems to be feeling ok -- as you can see here on his birthday bike that he's finally big enough to ride on.

Dear Neighbors,

2007-10-29T18:16:00.000-07:00

If you happen to be able to see into our kitchen window at night, I thought you might be happy to know that we are not running a meth lab. Just...fyi.

Little update

2007-10-17T05:59:00.000-07:00

Thomas is tired and starting to look a little peaked, but otherwise is chatty and dance-y and walk-y. This coming week will probably tell us more about how he will tolerate these meds, but it's looking ok so far.

Trucking and Training along

2007-10-09T20:26:00.000-07:00

So, chemo has begun. Twice a day Scott mixes up the concoction; it's so dangerous that he wears a mask and gloves to handle the meds. Then we put it in a syringe and give it to our kid. We have to be careful not to touch any dribbles or let it sit on his skin. So bizarre.

Other than trying to cope with it mentally, things are good for now. I thought I'd share this cutie video of Thomas singing and dancing. I was going to wait for Christmas, but I'm sure we'll get some more footage before then (Sorry about the quality; I can't believe how cutting edge that camera was when Thomas was born!).

Sound Sleep

2007-10-03T19:32:00.000-07:00

For those waiting to hear how it's going, it's going SLOWLY. We still have not started chemo. It took probably -no exaggeration - 24 hours of Scott's and my time to get him insurance that would start on time, and just today it has take 6 more to try to get the prescriptions not ordered, but begun-to-be-ordered. So, maybe this week, maybe not. We'll let you know.

But in the meantime, Thomas is sleeping in his big boy bed for the first time tonight. We decided that the best way to fight a crib climber is to eliminate obstacles. Clearly, they only egg him on.

2007-09-30T18:51:00.000-07:00

I'm so sad. I have this friend in England - we "met" through my blog - whose young son had ependymoma and a trach. The son died today.

His name was Lawrence. He liked to cook and to make tea and coffee and to watch Mr. Tumble. He had two pandas, and he did not like to take baths.

In a stupid, mixed-up postmodern world where diseases help people make friends over the internet, this space seemed like one where I could just say these things.

My sorrow on this can't compare to his family's, so let's just be silent. No comments on this one.

I Can't Smoke Because of My Asthma ANYWAY

2007-09-27T20:37:00.000-07:00

I am normally a political junkie, but for reasons that should be obvious I have avoided adding drama to my life this year. And I certainly don't want to bring up anything divisive here, a space that is about Thomas only.

But man, as Thomas's mom, I cannot keep my mouth shut about health care this year. I heard three Republican pundits and politicos* today answer questions about health care with more or less this response: "People need to be take individual responsibility. blah blah blah Don't be obese or smoke."

I thought about this as I went in to change Thomas's diaper just now and adjust his bear and sheet. Poor Thomas. If he had known not to be overweight and not to smoke, he surely could have avoided the whole brain tumor thing.

I mean, if only his parents - a vet and a public school teacher when he was born - knew something about personal responsibility. Or had purchased expensive health insurance before he was born.

Oh wait, we did that.

Let's see. . . do I know anyone else with prohibitive medical costs? Well, my there's my elderly neighbor, who takes great care of herself, but is waiting for her Medicaid "donut hole" to be over so she can afford the expensive medicines she needs. She volunteers at the hospital and church and worked part-time until just recently. Man, I wish she was more responsible!

Then there's Scott's old boss, an entrepreneur who poured herself into the science education franchise that Scott managed. An amazing woman who paid to bring her -highly trained and legal - family members into the country, she had a hard time keeping full time employees because of the prohibitive costs of group insurance plans. Silly irresponsible small business owner, bringing millions of dollars into the area economy....

Look, I grew up in a government-managed health plan as a military brat - I realize how complicated large-scale solutions to this issue can be. But let's get real. Health care costs - not just the bills but the way that a major diagnosis can wipe out a family - are hurting our economy. Personal responsibilty isn't the issue; our collective pocketbooks are. We can come up with a better plan, and we must, no matter which side wins.

I don't care who you vote for. Just, when it comes to this issue, for Thomas's sake, find somebody who's not making up crap about the situation on the ground.

*This is not to let the Democrats off; it's just that they can't afford to ignore this issue the way the Republican primary candidates can. My thoughts here are the result of watching the Republican debate with none of the frontrunners attending last night, and a radio program featuring a strategist.

I am looking forward to hearing what the actual frontrunners have to say, and relieved to find out that none of the attendees at the debate have a shot at winning. (I really have had my head in a poltical hole)

The Bad Doctor

2007-09-24T18:01:00.000-07:00

*I wrote this last year when we were first consulting with a specialist who did not become our doctor. Just found it last week; thought it was a funny counterpoint to my thoughts on Good Doctors:

There are just some things you don't want to hear your doctor say. Things like, "Oh, my God!" and "Nurse, come and take a look at this!" Last week* I added, "Do you want my honest opinion?" to the list, and in fact discovered a whole host of frustrating things a doctor can do that we hadn't come across before.

We were really eager to see this specialist - not at Children's - to talk about how to go forward with treatment option A (too technical to worry about here). After this appointment, we were really eager to get back to Children's.

For one thing, I don't think we've ever been interrupted at Chidlren's when we were asking questions about Thomas's care. This doctor not only interrupted our questions, he kept rolling his eyes when we were asking them. ROLLING HIS EYES! Have you done that in public since you were fifteen? It was like this:

Us: Doctor, I'm concerned about what you're saying [specialist rolls eyes] because it's the opposite of what we'd heard up until now about this issue. Our oncologist said . . .

Him: Well, he's right, when he says that XYZ is one common after effect of treatment B, but [insert long circular explanation of XYZ side effects].

Us: Um, we were going to say [specialist rolls eyes] that he said treatment B was not a good choice. Did we understand that wrong?

Him: [Sighs] Well, it's true that option B isn't used that often, and that's because of [reiterates side effects of treatment that we're not likely to choose].

Apparently, we were exhausting him, which put him past the point of logic.

Him: [Yawns, fidgets] Some people choose option A, and some people choose option B.

Us: Yeah, that's what we heard.

Him: [Rolls eyes]

Us: But when you say some people, how many people are you talking about?

Him: A certain number choose A, and a certain number choose B.

Us: But we've heard that the number of people in Thomas's situation who choose option B is close to zero -

Him: It's not zero.

Me, in my own head: Everyone will think I'm exaggerating when I tell them about this conversation.

Us: So, in Thomas's case, you're saying you thing option A is be-

Him: Well, if Thomas's tumor were in a different location, and he were older, and there were more of the tumor left in the brain, ...

Me: [rolls eyes]

Scott tried to appeal to his humanity. (Maybe he has more patience than I do, and maybe I depleted my supply of eye-roller patience in my years of teaching public high school.)

Scott: If this was your child, Dr. Specialist, what would you do, option A or option B?

Him: Do you want my honest opinion?

Us, in our own heads: Nah. We took the four hour round-trip that this consultation is going to take and exposed our chemo'd kid to your waiting room so that you could lie to us.

Scott: Yes, that would be helpful.

We left. And that guy not only didn't get to be involved in Thomas's care; he's not even at his own facility anymore. I like to think he rolled his eyes at some mom of a special-needs toddler in need of cancer advice, and she gave Dr. Specialist a concussion.

The Good Doctor

2007-09-19T07:19:00.000-07:00

Since this all started, Thomas has seen, I dunno, a bazillion doctors. Most of them were excellent. We have, however, had some bad experiences (I'll share a funny story later this week about one), and thinking about them made me start compiling a list of what makes the good ones good.

How to Identify a Good Doctor
The Good Doctor tells the whole truth, carefully and kindly. She or he encourages us to ask questions. And he doesn’t feel the need to drive the point home – just because we’re happy after a successful surgery, for example, the Good Doctor doesn’t remind us right then that we are not out of the woods yet. Our docs are really, really good about this.

The Good Doctor sees a person, a family, not just a patient. When I say, “Thomas needed suctioning every ten minutes last night,” the Good Doctor also hears “My infant and I were up all night and are now both frantically tired.”

The Good Doctor looks you in the eye – us and Thomas. On the parent side, this means that even when he thinks our questions are off base, which of course sometimes they are, he looks straight at us and talks through it with us. On the kid side, see the following -

The Good Doctor knows that Thomas is just little, not totally illogical. I think being a kid in a doctor’s office is like this – your parent and a big stranger in weird clothes are talking, talking; you’re thinking about your toes…and then suddenly the stranger lunges at you with a shiny object. Of COURSE you’re going to freak out. Good Doctors know that it actually matters to look Thomas in the eye and say things like, “Hi, Thomas. I’m going to examine you now,” and to move slowly and friendly-like.

The Good Doctor knows what the parents’ job is. Scott and I are Thomas’s Project Managers of Cancer –not the experts, but the coordinators, the person in charge of tracking deadlines, communication, equipment, expenditures, and reports. Without our careful attention and questions, Thomas’s care would be more cumbersome for the hospital. A Good Doctor knows this and facilitates our informed participation. Our doctors did this from the beginning, even when we didn't understand our role yet.

The Good Doctor doesn’t weigh you down with his own feelings, but he gets that it sucks that your kid has cancer. Oncologists are sometimes the only people who truly know that a nuclear bomb is going off in your family, and their patience and focus makes sentient decision-making possible. Our oncologists seem to genuinely, personally care for Thomas, and that has made it so much easier to trust their expertise.

I think it must be really hard to be an oncology doctor or nurse. You spend a lot of time with kids in real trouble; keeping their humanity present in the hospital room every day risks breaking your heart. But our team does it. We owe them, and not just a bazillion dollars.

2007-09-18T20:00:00.000-07:00

We're here. We have not started chemo yet. (-are learning that "got the insurance for Thomas settled" means "several more days of lonnnnng phone calls to various governmental agencies) We have all finally fought off the cold from h-e-double-hockey-sticks. More to come soon.

In the meantime, for fans, here is a picture from right before surgery that I love - this is Thomas with his nice friend Andrew, sharing 'Drew's most treasured possession - and the copy of said treasured possession that Andrew's grandma cleverly made. Andrew is a little older than Thomas, but any time they hang out, Thomas takes notes from his hero and we notice little changes in the way he plays after Andrew is gone. It's fun to watch.

p.s.

2007-09-11T07:58:00.000-07:00

Finally got Thomas applied for all the insurance I can come up with right now. This
really says it all, actually.

Every Which Way

2007-09-10T18:41:00.000-07:00

So, we asked every way we could think of, but it seems that this chemo will not be like last time. The answers to our many questions indicate that Thomas shouldn't have to go in and out of the hospital every five seconds. That was a huge relief to hear.

Thomas was also walking better today. He played all day with his trucks and trains, saying "vrrrrrr Boo Booo*" as he pushed them around the floor. Much improved from last week except for a stupid cold.

Honestly, he was probably walking better yesterday; I just didn't notice. Scott and I have each had a turn fighting the same nasty cold Thomas has had, and I know I took almost entirely to the couch Sunday. "Hand mommy the remote, honey" was basically the height of my contribution.

Poor kid. I swear he only gets to watch tv when he or we are sick. But that's enough - when he can finally talk, I think his whole vocabulary will be a mix between Law and Order quotes and the hip hop stylings of the Sesame Street gang.

*this is the car version of chugga chugga choo choo

Rock and Roll

2007-09-04T18:25:00.000-07:00

I took Thomas to Sunday School this week, and I had to warn the teacher that Thomas was recovering from surgery and a little off balance, so he needed to be kept an eye on if he tried to walk.

When I got back an hour or so later, the sweet teacher, an older man, looked whipped. "He's quite a handful! There's no slowing that guy down!" he panted.

It's true. Thomas has been feeling more a little like himself. He insisted on visiting our neighbors today, and waved hello and goodbye and "talked" to them and their pets.

It's nice to see; this weekend he started babbling and saying words and singing for the first time since surgery. Of course, his "no" (a full-body side-to-side negative) was the first to return.

We're trying to enjoy the progress without thinking ahead to chemo. That'll start sometime in the next week, we think.

I don't know how it will be this time. Last time, it meant that every time we were home for 3 - 14 days, we went in the emergency room and came out a couple weeks later. It's not supposed to be like that this time, but the dread is a boulder that keeps rolling around my house.

Weak Week

2007-08-29T12:44:00.000-07:00

It's been an up and down week. At the moment, Thomas is in my lap, carefully eating around the edamame I have hidden in his Fruity Cheerios. ("Look at the yummy marshmallows, Thomas!")

Since the ER run the other night, our biggest fight has been sleep. You can imagine, perhaps, that it might be disorienting to be happy and at home one moment, and then to find yourself for the next two weeks being drugged and poked and force-fed bad-tasting medicine and feeling totally miserable. Now, imagine you are two, and coming down off of opiates and steroids. I'd want my mommy to come check on me every little while, too.

Throwing us all off further is the fact that he cannot walk yet. His balance and strength are returning, but very slowly. This frustrates and confuses him. I watch his little face getting quizzical when he falls down after managing to stand up on his own. I hate it.

This condition, of course, has not kept him from trying to crawl out of the crib. ! We laid him down for bed the other night, choosing to let him cry it out a bit despite the way that makes the pits of our stomachs churn. ...and so imagine the heart-flutters when we returned to see his weak little legs propped up on the edges of the crib and his head wayyyy over the outside.

That's your snapshot of the week, Thomas fans!

In and Out Burger

2007-08-24T09:54:00.000-07:00

Yesterday was rough and Thomas ended up in the ER for some weird, scattered possible-symptoms.

The nice thing - in a brain cancer way - about Thomas's history is that we sure do speed through the ER. It only took 5 hours to get a CAT scan, a couple consults with a neurosurgeon, a visit with the neuro team pediatric resident (I think - by the way, remind me to send a letter - she had the best bedside manner with Thomas possibly ever), an eval by the opthamologist, and an informative conversation about meds with an ER doc. Five hours is a long time, but trust me, it takes some serious hustling to get all those people and tests organized that quickly.

Good news is, his ventricles are actually a lot less swollen and the things we were seeing were not the result of pressure in the brain. That's good. Bad headaches still stink though. I'm hoping they end soon.

Thanks, Aunt Kaitlin, for the Tater Tots for Tots in Trouble delievery (and the jalapenos on my burger). :)

Bath and Bacon Makes Better

2007-08-22T19:40:00.000-07:00

After a long day, he's home, in his own bed. Freshly bathed and baby-smelling (in a good way). Whew.

We're still going to be keeping a close eye on his wounds, and on signs of swelling in the brain, which we made the doctors rehearse and rehearse and rehearse for us. Once all the post-multiple-major-neurosurgery stuff is cleared up, we'll start talking with the oncologists....maybe a couple weeks from now.

We, Ama and Dada, are about to hit the sack as well. Scott spent the day getting Thomas discharged and moved back home with all the proper gear and prescriptions in tow and on time.

I, meanwhile, spent roughly five hours finding out how one might apply for 5 federal and state medical aid programs**...and then one hour finding out how we, specifically, could not apply. So instead, I applied for private insurance for Thomas, so that we can be denied, so that we can apply for a 6th state program, so that we can qualify to wait for it while we wait to apply, next month, for one of the other five, and when we don't get that, for us to be then allowed to apply for two others in the group of five.*

Got that?

arrrrrrrrrrrrrrrrrrrrrrggggghhh

Still, baby's doing well. Played quite a bit today and ate a ton. Nothing's as good as a baby with bacon, we say.....

*Note: We DO know about Heroes for Children. I am glad that such a smart and worthy charity is so widely known and we're grateful that they found us early on. I've heard from about a dozen readers about them. They're just one part of the answer to a very big question for us.

**Also note: This isn't a money problem, exactly; just a avoid-having-the-mother-of-all-preexisting-conditions problem, and a long-term-solution-to-managing-Thomas's-care problem. Don't want to sound emergency-ish to our bless'ed supporters :)

Ridikulus

2007-08-20T20:25:00.000-07:00

In an absolutely ridiculous turn of events, Thomas had to have a third surgery in less than two weeks. He had swelling in his ventricles after the second surgery, and was increasingly miserable.

After a long wait today they went in and, as I understand it, poked a hole in one of the swollen parts to let it drain. If this works, he won't need a shunt placed.

Thomas did seem more comfortable by the time I left tonight; he finally got to eat after a long day of "NPO" in anticipation of anaesthesia, and he played a bit with his squishy ball (an
excellent birthday present from Tia Roxana), talked at Steve on Blue's Clues . . . we're hoping it lasts. Y'all keep your fingers crossed.

Happy Birthday, Big Guy.

2007-08-16T21:11:00.000-07:00

Big Mac

2007-08-16T11:10:00.000-07:00

Mr. T is awake and apparently carb-stuffing for this marathon journey: his entrees today have included applesauce, French fries, macaroni and cheese, grilled cheese, and barbeque chips.

They’re keeping a close eye on him as we hope that some post-surgery swelling goes down. And Dad and I are looking forward to his weaning from steroids, because …can you imagine a two-year-old on steroids? !

Overall, he’s more alert and interactive, which makes us really happy. We’re out of ICU, too, which means I can stop worrying that Scott’s going to affect some highly sensitive machine with his new toy.

Thanks for all of your kindness – food, prayers, and time – we are very well-cared for, as always. More updates to come, including, possibly, a Blast From the Past essay from back when I had more time to write ...

2007-08-14T14:32:00.000-07:00

Got through surgery a-ok. Thomas's neurosurgeon feels more confident that he got all of it this time.

We're beat. I'll be back tomorrow.

Monday Monday

2007-08-13T11:02:00.000-07:00

Thomas had an ok day yesterday. Got to eat a little, which is good.

But we're back into surgery tomorrow. There's some tumor left, and Thomas's neurosurgeon wants to go after it right away, before scarring and other issues set in.

So.

It's gonna be a long week.

My aftermath is fuzzy

2007-08-10T19:55:00.000-07:00

Thanks for all your thoughts and prayers. Thomas came out of surgery just fine. His neurosurgeon thinks he got the whole tumor - that's good - and no other little brain parts seem damaged. Scott has first watch while I try to get some sleep tonight.

Can actually barely speak English at the moment, but I wasn't sure my messages to friends were getting throught. Ten pm, and all is well. In a morphine-y way.*

2 thoughts, no, three:

1)Pediatric ICU nurses are from heaven.

2)Thomas's neurosurgeon gives the impression that he does not want us to hug him when he says, "Your son is ok. I got the whole tumor," and we try to respect that. We do.

3) It's outrageous that one has to go into Recovery right after surgery. We're so relieved; we should get to take our baby home for a nice nap and snack before we have to start that part of the journey. ...I wish it worked that way.

I guess I should go take the rest I can. We'll be incommunicado for a few days. Thanks for all your support.

**And thanks, Grandma, for breakfast, and parking, and making a daughter who's a total Trooper.**

*Thomas has the morphine. Not me. Although I was eyeing the valium quite closely...

This is the face of cancer? Really?

2007-08-09T19:18:00.000-07:00

This guy, this one, in the pacifier and the overalls is going to have his head opened up tomorrow. Today, Thomas put the pieces of a model brain back together while the neurosurgeon tried to explain this to us.

It passed me by in the office - I was busy trying to keep Thomas from breaking all the model innards, although really, I could imagine myself saying, "Oh, don't worry, honey, he'll just put it on our tab."

Now, though, I keep wanting to vomit, thinking of it.

My two pastor-friends and my 70-something neighbor lady all swore when they heard that the cancer was back, and that, my friend, is the only correct answer to that news.*

*i do, however, appreciate your good thoughts and prayers during the surgery and recovery.

Checking...

2007-08-08T09:01:00.003-07:00

So, here’s a shot in the dark, and one that seems totally diminished by the spectre of surgery on Friday, but … I can’t ignore life after cancer, even if it seems like it’ll never come.

Anyone got some free time? Scott is starting student teaching in a couple of weeks, but he can’t do it unless we get someone to take care of Thomas. It would be for 12 weeks. Thomas will be taking one pill a day for chemo, and will have some check-up doctor visits, but now that his trach is out, he should be just be a regular boy with less energy than usual (which is still a lot!).

What we need is a highly functional, energetic person with no job, some common sense, and, hopefully, with no or 1 kid at home, as Thomas will have a compromised immune system and we’ll be trying to limit his contact with germs. (Or you could come to our house).

We can pay, more than minimum wage, but not that much more. Email me if you have a real genuine offer– I have my hands full and need to consider serious, checked-out offers only. (This is totally no offense to people who have discussed ideas with us prior to this post. It's just that this kind of thing tends to invite randomness, and we're running out of time.)

In conclusion, you should know that Thomas is totally cool and fun to hang out with. He likes to throw acorns into grass and, if you are lucky, will play you some of his songs on his keyboard. Just so's you know.

Thanks.

planned

2007-08-06T09:13:00.001-07:00

His surgery will be Friday. Just shy of a year after the second one. I'm hoping we don't have to stay on the floor for long; spending Thomas's birthday out of the hospital would be nice.

Thomas is feeling pretty great, still. We went out of town this weekend to see some old friends while we still had the chance. I'll add some pictures, soon - he had a blast playing with "cousins" Andrew and Owen.

More to come.

Love and Money

2007-07-30T17:30:00.000-07:00

Two things:

1) Thomas has a couple more scans scheduled this week. We will know what's next - surgery dates, etc., between the end of this week and early next.

2)Money - a quick update, as I have noticed a couple donations come in, and as always that is both very, very, encouraging and terribly awkward.

We are gaining stability after a year that was as financially heart-stopping as it was medically. These days, I am working at Southwest Airlines as a contractor. I'm making more than I was teaching (I'm sure you can imagine: this is not hard to do) but the trade-off is the lack of stability.

As long as I don't miss very much work through this time, and as long as SWA still needs me, we can pay our bills. And we're trying to set money aside should my contract come to a close.

All the donations we got last year did what I think they were meant to do. They kept us in the house and kept us from going under as Thomas's repeated hospitalizations -and all day/night needs - disrupted everything about our lives.

One particular nightmare have eased up for me: I don't see us pushing Thomas and all his medical gear to our cardboard home in a shopping cart any time soon. OK, that's a little dramatic, but I was certain that was coming when we first realized Scott would have to quit working. But you all rescued us.

There are really only two reasons why I'm leaving the PayPal account up - first, we were really hoping Scott could student teach in the fall for three months. Cancer has prevented that twice already, and ...I just think everyone we know is tapped out, but if Bill Gates comes a'knockin', I'd tell him that we could use enough money to pay someone to stay with Thomas while Scott did his 12 weeks.

Scott getting his certification completed at last would make life after cancer, whenever we get there, more secure. (Thomas can't go to day care during chemo; we're trying to figure out how to get someone into our home during that time).

Still, it's a dream, not a need. We know that. And Thomas's care might get too complicated any way.

The second reason is a hard one. We just don't know how things will go. We are back on our feet, but it wouldn't take much to knock us down. So, I'll leave the link up. We might need your help. and ...you know, if we get desperate, maybe someone can locate Mr. Gates.

Thanks for walking through this ridiculous time with us.

*"Dear Mr. Gates: Also, my mom could totally use a vacation. From, Sarah"

My Two Cents, by Scott

2007-07-28T11:46:00.000-07:00

Sometimes I don’t understand how people can write such intimate details on a blog. I can’t imagine why they would want to share their thoughts and secrets with the world. Today, I think I’m writing this because I don’t know how else to tell our friends and family over the phone what I am feeling. I can’t get through that conversation without blubbering or almost hyperventilating. I am not going to speak for Sarah because she shares her/our thoughts on this blog all the time, but I do want to share a little of what I am feeling and going through.

Every three months since Thomas’ radiation, he has had a MRI. Every time we would get anxious. This time someone asked, “How do you feel about this one.” This in general is sort of an odd question to ask a parent who is waiting to find out if their son has cancer. Nonetheless, for the first time in a year I felt like it was going to be OK. In my mind I was saying, “No big deal, just another visit to the hospital. Maybe I can get lunch with a friend afterward or go to the mall playground.”
Later that evening Thomas, Sarah and I met some friends. We got the call from the doctor and walked outside…

I AM MAD.

I don’t want Thomas to be in pain. I don’t want him to be scared of people in scrubs. I don’t want him to have to learn the phrase, “It’s okay, no owees.” People with toddlers who have chronic illnesses use this phrase to set apart the times when doctor is not going to be doing anything that will hurt.

With Thomas, we have seen all the things a family wants to see of their son, grandson and nephew. I’ve spent the last year watching him grow, learn to talk and stand up from crawling and start to walk. He finally likes green beans. …Granted, they are dried and taste more like potato chips... He knows how to throw things into the toilet and flush them down and says, “Bye-bye pooh-pooh.”

What has been just as rewarding are the triumphs that we never wanted to see. I’ve seen his hair grow back. He pulled out his tracheotomy tube for the last time in the middle of the night. Thomas stopped needing his feeding tube. He is breathing on his own, eating on his own, needs hair cuts. Though he is a little behind in his ability to speak, when you look in his eyes there is a difference. Lately, he understands more and is saying more than you can hear.

I love him. It’s hard for me to imagine what it would be like to have raised Thomas without cancer. Thomas’ cancer is our cancer. It destroys his body and invades every part of our lives. All of our family, all of our friends and people we don’t even know have been devastated by this disease. I hate it. I hate it. I can’t even write this without having to constantly blow my nose and wipe my eyes.

As we head into another difficult time, I want to thank all of you for you continued support. I don’t know if we could have survived, literally, without your help. Though, I will be sad and sometimes angry every time I think of what Thomas has had to endure, my final words are of encouragement.

Thomas Scott Bickle is my son. He is part of me. He makes me happy. His smile brings me joy. His laugh can light any room. I love him so much. He makes me happy.

2007-07-27T07:29:00.000-07:00

We are still waiting on information from new scans and the rest of our team of doctors. What we know now is this: surgery in the next week, and then chemo. Probably not as bad as the chemo last time.

That's all for now. I'll have more by Tuesdayish.

Thanks for all your calls and notes and love.

Thanks especially to Mel for inventing the new, international symbol for Cancer Solidarity.

back

2007-07-24T20:09:00.000-07:00

Thomas is back from the beach, and that is just fine with him. He gets so hot, and he hated the sand. He did learn to eat fish, though, something that is a real triumph around here.

So much is going so well, that is hard to believe it: there is another tumor.

Just one centimeter, but enough.

I don't know what it all means yet. I'll have some answers in the next couple days.

Mr. T will return with vacation pictures shortly

2007-07-18T13:19:00.000-07:00

God Bless Amurrca

2007-07-04T17:48:00.000-07:00

(that's a George W. accent) ;)

Note the patriotic colors, the locally grown pear (one way to say "stolen from neighbors"), the truck: thet boy's from Tehcksus.

Genius? I think so.

2007-06-22T19:15:00.000-07:00

Thomas walks, talks, carries a pear, reads, and giggles.

Recent videos, for those willing to crane their necks (sorry; misplaced some software at home...)(and sorry; am worst cinematographer ever to own an older digital camera):

Let's Review...

2007-06-18T14:30:00.001-07:00

I woke the other night to Thomas’s fussing. When I got into his room, I could smell what the problem was. Fortunately, we have tons of hospital gloves around the house, so dealing with nasty diapers is easier than it was before cancer.

I went into the dark kitchen, felt around, picked up a glove. “Oops. That’s a purple one,” I thought, and fished out a blue one (Thomas’s speech therapist uses purple gloves, so we’re helping him get used to them by playing with them during the daytime at home).

Back in his room, I was rolling the diaper into the glove when I thought, “Wait a minute, can I seriously tell the difference between the colors of the gloves in the dark?!?” Yep. I'd never thought about it, but the two have different textures.

Come to think of it, we have a bunch of cancer skills; things I never thought I’d need to know. Let’s review the things I learned how to do, and hope I never have to use again:

Acquired Cancer Skills

Change trach in under 1 minute

Perform CPR on an infant

Identify signs of infection while am in near-sleep state (upped respiratory rate, pallor, slow rate of blood return in extremities, lethargy, and, in Thomas’s case, the whites of his eyes turn grey)

Suction trach while driving (I know, I know…)

Diagnose rotovirus by diaper odor alone

Hide nasty diapers in hospital gloves so that I will continue to like my son

Hook up / unhook a g-tube/button extension while am in near-sleep state

Set and trouble shoot intravenous/enteral delivery machines while am in near-sleep state

Wake up enough to prepare and administer TPN and IV meds (SASH: Saline, Antibiotic or other drug), Saline flush, Heparin)

Identify infant’s respiratory distress in my sleep

Know the difference between labs and cultures, and how long it takes to get results on each

Locate and acquire good coffee and snacks at almost any hour in Children’s Medical Center

I'd Rather Have a Leaky Cauldron

2007-06-12T20:19:00.000-07:00

I know the definition of irony. Really, I do. But I wrote that "typical day" thing yesterday, and, as I was sitting up at 3 am this morning I thought, "You know, that day happens like, once a week,"

And it's true. More days than I care to keep track of are like today:

12:30 am, 1:00 am, 1:30 am, 2:30 am: Thomas wakes up coughing.
Not a big deal - he's got this ridiculously persistent cold, but it's nothing out of the ordinary for a little guy who skipped a lot of the normal childhood illnesses during his first year.

Except, because of his having had the trach for so long, he isn't so good at coughing. So I sit up, listening to him wake up gagging a bit and hollering. I race in to the rescue, mentally reviewing the new child CPR techniques, and find him fumbling for his pacifier. Pop. In it goes, and he's out again.

3:30 am: I wake up with the fever he has given me. I try to remember why I had wanted children.

8 am: "'Cott! 'Cott!" I stumble into his room, having decided to stay home from work. When Thomas sees me, his whole face lights up. "Hiiiiiiiiiii-iyyyyy!!!" he says, happily surprised. I love kids.

8:15 am: I notice a leak in the faucet while preparing T's morning bottle. It doesn't seem that bad. I report it to the Minister of Leaky Faucets.

8:20 am: Scott discerns that the leak has flooded the cabinet below the sink and that we need to replace the faucet and the immediately-connected plumbing ... parts ....or ...whatever.

...and that's how my typical day of work turned into a day off and then immediately into a day of keeping Thomas out of the kitchen while Dada replaced the faucet.

Similarly, Scott had already spent all Monday at the hospital getting x-rays for an on-again-off-again surgery plan to check Thomas's ears and bronchial tubes, post-trach. He got all the way home after lunch and they called him back for a second round of x-rays and discussions.

We sat around tonight in our messy house and asked ourselves why two people couldn't get dinner on the table and the house cleaned up on a regular basis. Well, Scott asked this while I sucked on my asthma treatment and Thomas practiced throwing every single block out of the block box and under the tv cabinet.

I don't remember what we said, but we both laughed.

A Day in the Charmed Life

2007-06-11T20:39:00.000-07:00

It's not always glamourous...

Average Day:

7 am: Wake up, talks to himself, yells "Aba!" if no one comes right away.

7:15: Yell "'Cott!" "'Cott!" because he has seen this name work more effectively

7: 15 - 8: Watch Sesame Street while breakfast is served for Thomas and dad, or travel to appointments

8 - 10 am: General Business - either speech therapy or doctor check-ups, or writing some songs on his keyboard (seriously; YouTube coming soon)

10-11: Cheerios, Pediasure, quesadillas, whatever Dad get him to try

11 - 1: Naptime

1 - 3: Playgroup (Dallas Stay at Home Dads has been awesome for both of the He-Bickles) or the playground; a snack

3 - 4: Fussy time; (possibly learned from Mama, who's not so good at afternoons) will throw fits and blocks while Dad does chores

4 - 5: Building, playing his keyboard, putting his plastic zebra in and out of the plastic barn and making it say, "Baaaaa"

5 - 6: Hug Mama's legs while she tries to put things away and change into play clothes

6 - 6:30: A quick dinner - Cheerios, Pediasure, and wrinkling his nose at whatever non-cheese/chip food we try to feed him

6:30 - 7:30: Mama walks Thomas around the neighborhood, Thomas walks Mama up the street. Then we all throw the beach ball around, Thomas throw blocks at Mama....

7:30 - 8: Mama's favorite: bath, books, and a baby in robot pajamas . . . Who could ask for more?

Father's Day Post, Early

2007-06-07T08:01:00.000-07:00

So, Scott's always been a hero to me. I know he took great care of the Marines in his platoon when he was enlisted; for a couple years after he got out we would get 3 a.m. phone calls:

"Corporal Bickle? Man, you are just ....you know ... I just ....I just respect you so much, man, Corporal Bickle..."

In the Marine Corps, I have learned, a positive drunk dial is a compliment.

Then there was cancer, where his bravery and patience was admired by doctors, nurses, and Thomas alike. I admit it: I'm jealous of the awe that the nurses showed when he would calmly re-connect whatever part Thomas had painfully pulled out or when he solved the riddle of how to make the medical equipment work properly.

And then yesterday, no lie, and no drunk-dial, I get this call from him:

"Uh, I might be on the news tonight."

"Seriously? Why?"

"I pulled a woman from a burning car."

I shouldn't brag about this here, but he really did, and it didn't make the news, and my husband's a hero. [swoons]

It wasn't a raging blaze or anything, I should point out, but the car in front of Scott got smashed in an intersection. Smoke and then flames started coming out of the hood, and the driver wasn't getting out. Scott tried to get her attention, but she didn't respond, and the door was locked, so he pulled her out of the window.

I am seriously not making this up. He was a little shaken, but asked if I wouldn't mind if he went and saw a movie to chill out (I was home with T). I said I didn't see why not.

....A little while back, a Sunday school teacher remarked on Thomas's easy-going temperament.

"You're a lucky mommy," she said. A friend who knows our story well overheard her, and kind of chortled, thinking of our extremely difficult year.

I think though, I am.

Navel-gazing

2007-05-24T15:08:00.000-07:00

The eating and a recent swallow study went so well that Thomas has had his g-button (the little faucet-thing where we hooked up his enteral feeding tube) removed!

The big change that I can tell, now that he has been feeding himself for a few weeks, is that now Thomas knows he has a belly button. Seems he just noticed. I guess I can see how having a plastic piece right around there would be a bit distracting.

Bludgeon Her With the Soft Pillows!

2007-05-14T18:01:00.000-07:00

I've noticed that I'm a lot less funny in this space lately. Which is funny itself; not funny hah-hah but funny-strange.

I guess, in the hospital, with a sick kid - there is absolutely no room for extra anxiety. There is the unbelievable situation, and you. It's ridiculous.

When Kurt Vonnegut, king of the ridiculous and tragic, died recently, this quote was in one of the eulogies*:

"Well, of course, humor is an almost physiological response,” he said in a 1976 interview, “to fears, as I understand it…. I saw the destruction of Dresden. I mean I saw it before and then came out of an air-raid shelter and saw it afterwards, and certainly one response is laughter. God knows, that’s the soul seeking some relief.”

But now, back in something that resembles my old life . . . I haven't been able to explain it. I live here. I commute. That's my baby. And every few months I check to see if there's a gigantic tumor in his head.

I'm having trouble with it.

My mom came over to watch Thomas Friday, because she is a saint, and Scott and I went to a movie. We saw the first ten or so minutes of 28 Weeks Later, the zombie movie. It was devasating. And by that I mean extremely well-directed, well-acted, and terribly painful.

If you want to get a feel for what it means to have your life taken over by cancer, go watch flesh-crazed Britons** attack a family and watch all the awful choices the characters have to make, and the sense, even when they're free, that there's something lurking beyond the little safe zone ....

Ugh. All I'm saying is, I should certainly feel relieved these happy days, but I'm having a hard time talking myself into it.

The funny thing is, I never watch horror movies. I just thought it would be a wild break from our stressful hospital-ly week (the MRI, Scott's surgery).

We did have a nice, zombie-free date after we left and I fixed most of the mascara-smears. Scott politely avoided blaming me at the ticket counter when he asked for a refund.

When we got home, I turned on the tv before bedtime. And this was funny, funny hah-hah: Monty Python was on. It was the Spanish Inquisition episode. Because, nobody expects the Spanish Inquisition.

*Now, kids, this is an example of an unsupported quote. I haven't given you a source, mostly because I don't have time to go back and find it. Don't try this on your homework
**Sorry, Ctel. Nothing poltical/personal.

quick!

2007-05-09T07:05:00.000-07:00

* Thomas's most recent MRI: Fan-tab-u-lous!

*Scott's surgery: excellent - he's already more comfortable**

*Working: hard. Will post a new walking video asap (but there are cute new Flickr pics)

**(and they didn't knock him out so I didn't have to work as hard to prevent "drunk"dialing afterward...!)

Spring Showers

2007-05-03T07:46:00.000-07:00

Bad news: It's one of the most dangerous springs in recent north Texas history, and our power's been out since early yesterday evening. This was one of my biggest fears when Thomas was so machine-dependent.

Good news: But Thomas doesn't need no stinking machines; he hasn't used the feeding pump to eat in over a week. !!!!

And, he's walking!!!

Growing Hope

2007-04-28T18:54:00.000-07:00

A friend of mine, L, is in the tenuous first trimester of her first pregnancy. Recently, she talked about the doctor's visits, which are of course every four weeks.

"At first," she said, "right after a good visit, you're elated to know that everything is ok. And you've got that high for a couple of weeks.

"But then right at the two week mark, you think about the next one coming, and start to think of all the things that could go wrong. You dread it until you get another all clear, and then the cycle starts all over again."

That is exactly how the MRI cycle works. We are very, very much enjoying these busy, bright days. But we're more than eager to get the next MRI (in the next couple of weeks) over with.

In other news, Scott is going to have another surgery, this time on the other wrist for his carpal tunnel problems.* Despite having a very wise doctor (see below), trying to get that taken care of has been the ultimate hassle.

Interestingly, it would be a lot easier if I was the parent who needed medical help, and if that medical help were obstetric in nature.

I'm trying to work up a post about the vagaries of insurance policies and state aid that isn't a total rant, but it's not coming together. I'll get back to you.

Anyway, to make Scott feel better about being just in pain and not pregnant, we got him a puppy.** Three months old, Shnauzer-Cocker Spaniel (I'm trying to popularize the "Schnocker" breed name), Maggie Mae Dog Bickle.

It helps my nerves, putting the pieces back together like this. Last spring, we gave our two sweet little dogs away because we were living in the hospital. And I didn't plant my garden. I even quit watering most of my inside plants out of protest - why should they survive?

The inside plants lived, down to a one. The church group who cleaned our lawn this winter composted and mulched my raised garden bed, and the two little tomato plants I set out are sporting itty bitty tomatitos. And the donated pansies who are stubbornly sticking around despite the warm weather are being slowly trampled by a little boy's first steps.

*Scott asked why he couldn't do both at the same time. The doc told him of a man who insisted on it, but who then couldn't find a volunteer to assist him in his, uh, post-toilet-use routine.

** Technically, it's for Thomas, but Scott was only slightly more excited than Thomas

Happy Easter

2007-04-06T21:12:00.000-07:00

I have this friend, and her dad is, among other things, a linguist. If you dig around at his house, you will find tapes marked with my friend's or her brother's name and dates from more than twenty years ago. If you play the tapes, you can hear my friend's mom sounding very young and very patient, and then there is my friend and her brother, babbling back to their mom and then riffing on their own, blowing raspberries and giggling and being explanatory in that uncomprehensible-yet-sensible-sounding toddler way.

Technically, I think the tapes were a study of early-emerging phonemes in toddlers. But I am pretty sure that the tapes are still around, four or more moves and three decades later, because those voices are very dear to the man behind the recorder.

So anyway, when that friend told me to make some recordings of my son talking, I did.

Here's one for you to enjoy.