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There is definitely something to be said for Facebook and birthdays.  Thank you all for the many many well wishes today. I’ve had a lovely day, actually a lovely weekend including dinner out with my husband on Friday and again with my family yesterday.  Today started with homemade waffles and bacon, much to the delight of my little people.

Then an 80-minute run through the snowy sidestreets with my girl Christie. I felt great throughout but waaaaaay older than my 37 years as soon as I was finished.  Then — and perhaps you’ll find this pathetic but try not to judge — my special alone time was a trip to Target. It was special. Really. Braedan tried to weasel his way into it (unsuccessfully) by saying he had let me go to the grocery store alone the day before. Not as special.

The lowlight of the day came when I unpacked the lamp my parents gave me and the boys decided to “make snow” with the styrofoam packaging (after being told not to), giving way to an hour-long clean-up. Like we really don’t have enough snow for them?

We rebounded with homemade pizza and a rousing pillow fight. Then I snuggled in between my two boys and read another favorite, Miss Rumphius. If you have kids and don’t know Miss Rumphius by Barbara Cooney, you really must find it.

And the best part: no hospital stays, no ER visits, no medical emergencies. Just me and my three favorite guys under the roof of our wonderful new house. So, I’m another year older . . . with a few thousand more wrinkles and gray hairs (and stiff muscles)? Oh well, I’m still lucky.

I went for a run today, which wasn’t terribly productive. The sidewalks were nonexistant and the roads had several inches of hard-packed snow making me feel like I was running in place. Which is how cancer treatment in general feels sometimes. Like we put forth enormous effort and get all tired out, but don’t get much of anywhere.

That’s not true, of course. We should be “getting somewhere;” it’s just not a place we can see. And the marbles are indeed moving, one jar almost equal to the other (although I think it’s time for me to sneak some extras into the “Days Left” jar). But I do feel like we’re just bidding our time, waiting for it all to be over.

We all start to feel like that at this point in the year (especially this year, when the whole country is buried under snow) — wondering when spring will come, counting the days until the warm weather hits. It’s especially so when you’ve got a kid with cancer: Let’s just get through this, let the dark days end, let the sun shine again.

Funny thing, though, is that Austin isn’t bidding his time. He isn’t just waiting for it all to be over. He’s still living each day to the fullest. Today we tried to build a snowman (but it wasn’t good packing snow), he went sledding with Braedan and Daddy, and in between he jumped on the bed and the couch and down the stairs. No waiting for this kid, no running in place.

There is still joy, even with gray skies.

Guest blogger here, it’s me, Mark (and yes, Krissy is watching over my shoulder). I know she’s told you that I’m shaving my head again for St. Baldrick’s this year and I know you all know how important this event is to me and my family. But I wanted to put in a word here for Braedan.

He was nervous about signing up for this, mostly because he didn’t want “people watching” him. But he offered to do it for his brother, and Krissy and I are both so proud of him. Although they fight like cats and dogs, Braedan loves Austin a ton and wants nothing more than for him to be able to do all the things regular three-year-olds do.

We all want to raise as much money as we can for pediatric cancer research and we’d all love for Team Austin to be the first-place fundraiser at the Cleveland events. But more than anything, Krissy and I would like Braedan’s courage and sacrifice to be rewarded with pledges of support from his friends and family (just click on his name above and follow the instructions)). It doesn’t have to be a lot; ten bucks makes a difference. And now that he’s learning to read, he loves decoding the names of his donors. He IS pretty curious about his friend “Anonymous” though!

Now, back to the master for her hacking (I mean, revising). . . .

They are not one-dimensional, these boys. Braedan is not all blue to Austin’s all red. They each have varied, and sometimes contradictory, personalities.

Braedan, the “sensitive” one, is not at all shy. No, ask any teacher he’s had over the years, this boy is not quiet and not shy. He’ll talk your ear off, in fact, especially if you’re a grown-up, and is a very animated story-teller. But at the same time, he shuns the limelight and claims stage fright every time I suggest a foray into theater. The fact that he willingly signed up for St. Baldrick’s this year is a big deal not because he’ll be shaving his head but because he’ll be doing it in front of a crowd.  (But if you read his page, you’ll see exactly why he’s doing it.)

Braedan is intuitive and observant. He always comments on how other people must feel in given situations and is remarkably in tune with both his own and others’ emotions. But he’s got a fiery streak too, especially as he gets older. He has a temper and is becoming increasingly fearless.

Austin, my “fiery” one, is also a snuggler and a love-bunny. So he jumps and leaps around but comes back for regular comfort and lovin’, needing the reassuring presence of Mommy often. He’s physically fearless but shy among his peers, preferring the quiet Play-doh table to the rowdy truck area at school (unlike his wilder behavior at the hospital, which is where I truly think he feels most himself).

So, like their rooms (Braedan’s blue with the red chair rail and Austin’s red with the blue heater cover), they each have a little of the other inside them.  And we’re all the better because of it.

We are ever-so-slowly making our way through the boxes and putting together one room at a time (or in my case, putting together a tiny corner of one room and then one tiny corner of another, as every time I wander away looking for a screwdriver or curtain rod, I end up getting sucked into something else somewhere else — and usually forgetting said screwdriver or said curtain rod). Anyway, I have pictures of the boys’ rooms to share, the colors and themes of which were chosen by each boy himself.

Here is Braedan’s blue outer-space bedroom:

Learning from the master

The highlight of the house: a connecting door to Austin’s room

And here is Austin’s red transportation-themed room:

That magical door again

As always, just a blur of motion

Their coordinating red and blue rooms remind me of one of my very favorite children’s books, I Love You The Purplest. The story answers that question that all parents of all time have heard from their children, “Which of us is your favorite? Who do you love the best?”

In this tale, a mother and her two sons head out in the evening sun to go fishing on a pond near their cabin. The one son is cautious and kind, slow and hard-working. The other is quick and lively, running and jumping about. They seek their mother’s approval on each page: Who dug up the best worms? Who’s the best fisherman? And her answers appease them both: “Why, you have the most worms and you have the liveliest worms.” Or, “You caught the most fish, but you were patient and caught the biggest fish.”

In the final pages as she tucks them into bed, each whispers in her ear, “Mama, who do you love the best?” And she answers one, “I love you the bluest.” Blue like the calm summer sky, blue like the ripples gleaming on the lake. The other she loves the reddest. Red like the flames of the fire, red like the hot desert flower.

So, tonight I will tuck my sensitive, gentle Braedan into bed in his blue room and my passionate, fiery Austin into bed in his red room. I love them the purplest.

I know why Austin enjoys the hospital so much. He has my complete attention when we’re there. All the usual distractions are erased: laundry to fold, computer to check, big brother to care for. Nope, when we’re there, even just for our twice-weekly clinic visits, I have nothing but occasional phone-surfing to draw me away from painting, reading, playing with the little man.

This past Thursday, while Austin received a blood transfusion over three-and-a-half hours, we sat next to each other on a bed in front of an eight-foot window looking down on the construction site six floors below us. We must have sat there “in the sun” for at least an hour, gazing at the forklift and bulldozer driving back and forth across the dirt. Then he sat in my lap on a chair and reminisced about last summer at Chautauqua: “Remember when . . .” he’d start each sentence, recalling boat rides and fireworks and trips to the mini-amusement park down the road.

“We’ll do that again,” I kept saying over and over, already looking forward to our upcoming summer, when cancer could be well behind us. But I know that boat rides and fireworks and trips to the amusement park might not happen too quickly. We might still be in the midst of cancer when summer arrives. We are indeed halfway through the mandatory eightteen weeks of treatment. But those extra twelve weeks loom large on the horizon. The fact that Austin is doing so well, tolerating chemo and bouncing back after each dose, will probably bite us in the ass in the end. As long as his bone marrow hasn’t been totally depleted, we really have no good excuse for stopping treatment in April and will almost certainly continue through July. Ugh.

This protocol, the one designed for relapsed Wilms, actually calls for up to six rounds of the twelve-week maintenance cycle we’re currently in. As I explained a while back, few children are able to withstand the full ninety-week protocol (six 12-week maintenance cycles after one 12-week induction cycle and one 6-week consolidation cycle) because their bone marrow is so completely destroyed.  When we signed on for this treatment plan, we committed to at least one of these six-week cycles and two if Austin was able.

And, of course, as of now at least, he is able. So strong, little Austin, too strong.  If he breezes through the next three doses as he has through the past three, we will definitely be in for the long haul. There’s a part of me that hopes he isn’t strong enough just so we can be done. But, as his oncologist has reminded me too many times, our ultimate goal is not an easy few months or a pleasant summer but survival.

Survival. There’s just no arguing with that.

OK, enough griping for now (not that it isn’t deserved . . .). But finally, I have an answer to the question I have heard not hundreds but thousands of times: What can I do to help?

I’ve written before about our favorite cancer-supporting organization, St. Baldrick’s. And we now find ourselves a mere month away from St. Patrick’s Day 2010, a perfect day on which to shave your head. Yes, that’s what I said and that’s what I’m asking you to do: shave your head for Austin. Now, I will readily admit that I’m not willing to do it. Even for my own child. Nope, not me. But maybe you?

This year, we’ve formed Team Austin, which can be joined by participants nationwide (and even worldwide, as long as there’s an event near you).  And the Cleveland event at A.J. Rocco’s (among the most successful events in the country) has designated Austin as one of its Honored Children.

Visit the St. Baldrick’s site and learn about the incredible medical research they fund and the incredible children they honor and the incredible (and incredibly brave) shavees who sacrifice their hair to stand in solidarity with all the bald children currently in the fight.

Maybe you’ll be inspired to join them. And if, like me, you believe you can still do good while keeping your hair safely on your head, you can at least donate. On behalf of Mark who’s shaving for the third year in a row, or Braedan who’s shaving at the family-friendly event in Chagrin Falls the Sunday before St. Patrick’s Day, or the mom at Braedan’s school whose hair goes all the way down her back, or any of the thousands of other men, women and children across the country taking this step.

And at the very least, you can come out and join us for the fun on Wednesday, March 17 after the parade at A.J.Rocco’s downtown. Drink some beer, cheer on the shavees and make a difference.

You should’ve seen me trying to put Austin down to sleep last night while he kept insisting, “We are NOT sleeping at the hospital!” It was after ten when he finally conked out only to be roused a few hours later and whisked off into the cold dark night. But he happily watched the empty streets pass by as we drove home at 1:15 am and quickly crawled into our own beds. There is something to be said for waking up in your house with your family all around you.

And after some moments of blissful normalcy this morning, I went to flush his PICC line . . . and it was blocked. Oh, I was so mad. SO mad. It is the worst feeling to sit there and attempt a necessary medical procedure on your child only to have it fail.  I tried a couple of times, afraid to push too hard; was able to draw blood off of it but only with a lot of resistance and air bubbles. Right as I was fuming about what to do next, the charge nurse from the floor called to see how everything was going. “Weeeellllll,” I began and she said, “Oh no.”

So we spent the next several hours down in the clinic, the absolute last place we wanted to be, waiting for the “central line Draino” to work its magic. Which it did, of course. And then, back home, finally home.

Speaking of performing medical procedures on your own child, his injections are becoming quite a production. He is fighting them tooth and nail, and has to be pinned down by me while Mark attacks him with that needle. It’s all sort of ridiculous and would almost be funny if it weren’t so awful. We’ve tried all the tricks recommended by professionals — have given him options (which leg, where we sit to do them), we’ve given him needles to stick into stuffed animals, and have explained over and over that we don’t want to hurt him but have to do this to make him better. But nothing works. He simply will not have it. And because he is squirming and tensing up his muscles, the damn shots hurt all the more.

Ah, how many more marbles indeed?

The past day and a half have been a little better.  Austin learned (through some trial and error) that flying into a rage wouldn’t prevent him from being re-hooked to his pole, so he makes the most of his few minutes of freedom and then begrudgingly allows his nurse to screw that IV tube back to his PICC line. I tried to take a picture of him running laps last night but he was too fast for my phone’s camera, just a streak of baldness dashing by.

And the very good news, confirmed just moments ago, is that he is allowed to go home tonight after his post-chemo hydration. Which happens to fall at some crazy time like 12:30 in the morning. But a late sleep at home beats sleep at the hospital any day.

Just goes to show the enormous benefit of advocating on behalf of your child. We push them a lot, I know, always proposing new schedules or ways of doing things. None of our requests are in any way harmful to Austin or his health, but they do sometimes go against hospital norms. Things there get done a certain way simply because that’s the way they’ve always been done: routines, routines, routines. But if you have an idea or want to tweak to the system, and have good logic to back it up, the doctors and nurses will indeed listen.

Proof positive: Austin was shackled and soon he will be freed.

Did I mention that this is exhausting?

Austin has been extremely feisty today and feisty is a bit of a euphemism. He is full of anger and bluster at being “hooked up” to his IV and insists over and over at the highest volumes that we unhook him.

Last night, when he’d finished his chemo and was about to be switched back to his fluids, the nurse granted permission for him to “run a lap” unhooked. Of course, as soon as Austin had the promise of one lap, he insisted upon two and then requested “five hundred,” which is his go-to number for everything (as in “500 more minutes,” “500 more days” and “500 more cookies”). His lap, which is literally a lap from our room down the hall and around the nurse’s station, was a joy to watch. As was the lap after that and the one after that. His running was interspersed with  skipping and jumping, his hands held high in an Olympic-worthy victory stance, prompting several of us bystanders to say (with due irony), “Wow, can I have some of what he’s having?”

But all good things must come to an end and I eventually had to scoop him up and return him to his room and his dreaded IV pole. This child did not give up his freedom without a fight. A kicking, screaming, hair-pulling fight. He then tried to unscrew his PICC line from the IV himself, not exactly the safest thing for a three-year old to do.

He is just mad, sick and tired of being restrained, tied down, shackled to this damn disease. He feels good and he wants to run free, not be forced to wait for Mommy to maneuver the pole over the door jamb or need to untwist three times in order to reach his desired toy.

The scene was replayed today, both with me and with Mark. Again involving kicking and screaming and, this time, biting. Neither of us begrudge him his anger. He should be angry. This sucks, what’s happening to him. And yet we continue to hold him down and calm and quiet and soothe so we can stick him with another needle or pump his body full of another poison.

We are all sick of being shackled to this disease.

February 2010


February 2010