Choose Your Own Birth Adventure! Catastrophic Event or Life-Threatening Cancer Risk

I tend to write my daily gratitude reminders for FB and save the heavy shit for the blog. So buckle in, because this is the blog.

The biggest question I can never answer about how Aria got leukemia is, well, how Aria got leukemia. 

I understand the process, but "why Aria?" hasn't been something I can delve into. 

If it were environmental, was there something I could have done? If her immune system was defective, was there something I could have done? 

I had been happy to keep checking the NO box. Til today. 

It started with an NPR video for kids about the importance of microbes in your body. It mentioned how the increase in some immune system problems -- like asthma and allergies -- may be due to an the increase in caesarian sections. They didn't mention leukemia specifically. But "immune system problem" is a polite way to define leukemia, and I hadn't explored that avenue. 

A quick google, with my stomach in my throat, brought a medical study on "Cesarean versus Vaginal Delivery: Long term infant outcomes."  It briefly delves into the theory that by skipping the trip down the birth canal, and thus not getting the recommended daily allowance of microbes (on Day One), the baby may instead be at risk for "some cancers" later on.

Now feeling dizzy, my second google brings forth a science article on how "C-Section Births Cause Genetic Changes That May Increase Odds For Developing Diseases In Later Life." 

"Delivery by C-section has been associated with increased allergy, diabetes and leukaemia risks....our theory is that altered birth conditions could cause a genetic imprint in the immune cells that could play a role later in life."

As you already surmised, Aria's mommy had a C-section. Two, actually. With Lyric, the exit had a roadblock, so the doctor took a scheduled detour through my bikini-line.

With Aria, I then opted to have an "unnecessary" c-section because I was terrified not to. That whole "uterine rupture" problem sounded "unnecessarily" horrifying. I knew some hospitals won't even do a VBAC because of the risk. And hell, all my lady parts were all still in tact, so why not re-open that convenient bikini-line entrance to welcome baby #2? Frankly, I wasn't all that broken up about it.

As it turned out, as the doctor was airlifting Aria from my womb, she "mentioned" that my previous scars had, in fact, already opened. So, um, that rupture thing kind of happened, right? I really had made the safer choice and averted potential life-threatening catastrophe for all of us. That relief still trumps any misgivings I had about choosing 48-hours of harder recovery over 48-hours of labor.

Yet, I'm still sitting here wondering if the combination of not breastfeeding Aria long enough (we had issues) and "opting" for the c-section is how my baby "got" cancer. I'd sure like to be not wondering that. No it's not my fault exactly, but I still would like to erase this morning from my knowledge banks and go back to assuming an evil wizard did it.

It's OK. She's fine. (Is there a bar car on this train?)

As mom of a preschooler with cancer, I speak in blurbs of bullshit:

"She's got a 90% chance at being cured. Can't get much better than that!"

"If she still had hair, you wouldn't even know she has cancer! She's almost unaffected by it all."

"The worst of the chemo, the pain, and the fear?  Over."

"It's all gone so much better than we anticipated."

"We're rounding the corner." "...nearing the summit....""...can see the finish line."

"We know how lucky we are."

"She's fine."

I do mean them all. We are two weeks from entering the two-year-long Maintenance phase of treatment. I'm viewing it as Home Free--with a few boulder-size grains of salt: Each day she'll take poison pills. One week a month she'll take steroids. One day a month (or maybe a few days in a row) she'll get the Mega-Chemo Dose injected into her spine. But her immune system should remain stable-ish.

That sounds horrible, but if you ask me about it, you'll get the blurb.

"Are you kidding? Compared this first phase, that's cake. A vacation, even!" 

And remember, anyway:

"She's fine!"  

Correspondingly, so am I! Emotionally on track!

Annnnnd here comes the three-car bullet train:

Engine Car Thursday:
I chatted with a new acquaintance about Aria. He leaned in, all-knowing.

"Just be careful. A good friend of mine always wishes he'd been more careful. His 7-year-old had leukemia. He took her camping. She ended up with pneumonia and died."

WHAT?! No, I don't have all the details. No, it doesn't matter really. It happens, I know that. But WTF, dude. I need to sleep. That's not helping.

Freight Car Friday:
Til now, our understanding of Aria's "ANC" level (blah blah blah cancer, blood tests) has been:

"Low ANC Bad. Stay home. High ANC Good! Play!"

This past month, Aria's ANC has been way way (way) up. Like 3500 instead of 500.

We've been told the "safe" level is 2000+. So, you know, 3500 should be awesome.

Maybe.

Kevin received reassurance from our trio of doctors (who are sometimes be referred to as "Hurried" "Vague" and "Jargon") but Kevin is still worried.

FIRST, I belittled his concern (bad wife). THEN, I googled to confirm I was right. And, well, shit. Every. Single. Result was, in summary: high ANC ---> relapse.

Crater-size caveat: these studies discuss high ANC during the Maintenance phase, which we have not yet entered. But the closer we get, the higher her levels seem to go.

Is this at all relevant? Expected? Are we being kept on The Protocol because it's best for the Study, or because it's best for the Aria?

We've had zero problems to date, so I'm deep in Cancer is Easy Land. That's when people like me get blind-sided.

So, I will be meeting with the doctor on Monday. He just doesn't know it yet.

And Saturday's caboose:
The Make A Wish people came to our house today. They scheduled a free Disney Vacation for our family.

I used to think of that charity as offering a last wish, a dying wish. A last meal. I've been pretty good at trying not to think that.

Until Thursday. And Friday. And now here are the volunteers at my door, smiling with adoration at Aria's fuzzy little skull.

Aria stated her wish to go to Disney (because 4-year-olds don't know they should be picking Paris, Bali, or to meet Chris Hemsworth in his Thor costume).

As for Lyric, when heard the Wish Team was coming this morning, she said, with all the enthusiasm, innocence, and personal satisfaction a six-year-old can offer:

"ARIA! Just ask them to make you NOT SICK anymore!!!! They have to grant your wish, right?!"

Aria just looked at her big sister, then at me. Neither of us had the energy to explain. Fake princesses and giant mice, here we come.

Turns out I'm not Wonder Woman

Thanks to the couple of folks who offered to help plan my 2013 fundraising party idea. I haven't gotten far.

First, I can't identify a venue large enough and cheap enough (where cheap=free). I'd love to throw a big Halloween Party, but for hundreds of people, we might need to be outside, which is unreliable weather-wise. I'm stumped.

Secondarily,  I (finally) acknowledged that I need to do less.

This year we got two life-changing diagnoses. Aria as you know, has cancer. Lyric, as you might guess, has her own stuff going on.

She's been labeled "twice exceptional" or 2e--- a euphemism, in her case, for being 1) a lot smart and 2) a little nutty. Ahead intellectually, but behind emotionally (ADHD+Anxiety).

The 2e combo makes moving to public school all sorts of unfun at times. I miss her Montessori terribly.

And because there was not enough uncertainty at our house, my company's health also continues its downward spiral.

(I'm really bringing you down now, aren't I. It's ok, it gets better.)

So, as Kevin mulls new job opportunities, I was writing business plans, hoping one would emerge as a viable start-up for one of my ever-circulating ideas.

But then, as it turned out, I'm not Wonder Woman. This was a genuine let down.

I can't have a secret identity as a brilliant, creative successful entrepreneur while living my daily life as a calm and engaged mommy who works full-time, carts her kids to chemotherapy and social skills groups, remembers medication regimens and schedules that change weekly, and doesn't damage her kids by having her own daily tantrum.

So, nope, I'm not SuperMom or whatever BusinessWeek is calling us this week. I can't do it all. This bummed me out. A lot. I know actual people who do all these things. I felt like a failure.

Until I played hooky with Lyric.

We took off last Friday from school and work and just played together outside. For hours, it was just us playing tag, fort-building, hide and seek, tree climbing and sitting in secret hideouts. I haven't felt so much myself for far too long.

I miss northern California, being wonderfully overwhelmed by nature. I miss hanging out with someone and just being.

I admit that in the past 18 months, I've started a lot, finished little, and mostly shortchanged my kids, who need more of me than I was willing to give.

Now I spend as much time as I can trying to be mentally where I am physically, and trying to be in as few places as possible.

Oh, whatarelief it is. Everyone is notably happier, calmer, focused and kind. 'Cause it's true that when momma aint happy, aint nobody happy.

A writer I follow started posting three things she's grateful for each day. I might start, too. It's much too easy to brush over the good things that seem small, and dwell on the hard things that seem huge, when almost exactly the opposite is typically true.

Crowdsourcing the Fun Hat Party Committee

July 18, 2013

July 26, 2013

This is
the space
where I
try to process
how we got from left
to right.






I just ate a half a pan of Deedee's amazing Rice Krispie treats with a Bacardi and Coke. And now I'm gonna blog... 

You and me, we should fundraise before the summer is out. See my kid up there? That's why.

A couple of months ago, I believed I'd be planning these fundraisers all summer. Turns out I spend a lot more time facilitating the health, welfare, and livelihood of other dependent humans. I don't have as much time to play event planner as I wished. I need the help of others to make things happen. I'm seeing that a lot lately. Who knew.

Anyway, I've been thinking of hosting two events. Or maybe it's one big 'un. Or a dozen small ones?

In case you're behind, Aria has far less hair than she did at birth. A light layer of peach fuzz, like a duckling. She doesn't want me to shave it. She seems to like it. She wears headbands.

She should wear a hat. But she doesn't care that she's bald, and that makes her awesome. Again.

The steroids finally started to wear off, so hopefully in a few weeks she'll return to her standard elfin size.

For my baby Sinead fundraiser, I'm think: Silly Hat Party! (As if I'd invented the concept. As usual, Google pointed out how unoriginal I am.)

Regardless: Fun Hat Parties, where fun = fabulous, freaky, funny, fancy, or f*ed up headwear.

One fundraising party would be for kids to attend. Entrance fee would be a new toy, which we'll donate to the toy box for the chemo kids at Aria's pediatric cancer clinic at Loyola.

Some days the clinic has a full box, some days it's lacking. Often it's got dozens of Barbies and not much for little kids, for boys, or for smart girls who finally figured out that Barbie is boring. 

I'd like this fundraiser to include kids activities (Michelle gave me a gift certificate for face painting, for example) and light snacks.

My dilemma is one of venue. My townhome is too small. Even if we thought the front yard adequate, bad weather would muck up our plans. And here we enter my ADHD Zone.

I wonder: Is there someone in Oak Park I know with a big house and yard and would actually enjoy allowing dozens of strange children to trample their chaise lounge, labradoodle, and begonias?

Probably not. Even if there were, would I live through the guilt of a flattened labradoodle in the flower garden? Unlikely.

Is there a kids' art studio, kids' gym, a rec facility, a school gym/cafeteria, or playspace that would donate their venue? How big does it need to be? How many kids are we talking about?

If I had too much means and far less sense, and invited every child we know from school and after-school, we could have hundreds of kids. And that's sort of my plan. It's a fundraiser, not a birthday party.

Is this an event to ask the Lake Theatre to sponsor? Is it a block party? Is it a series of weekend events if various locations? What is it?

Tell me what you think. Use the comments (hardly anyone does.) Be my committee. 

I'd pick the Children's Cancer Research Fund. That's the organization that my uncle ran a marathon for in May.

The *other* party would be Adults Only. 

I'd like to find a restaurant that would donate a portion of an evening's proceeds (or a week's proceeds from anyone who comes in to dine wearing a silly hat).

WSMS (the girls' school) did this kind of fundraiser with House Red, incorporating wine tasting. Perhaps the owner Neb is amenable. Perhaps he remembers me?

Lyric's a regular at Kinderhook Tap. (Free ice cream with every kids meal!) Maybe there? Who do you know? Should I have her ask them?

Aria spends her allowance at Poor Phil's. (Best Mac N Cheese, Mommy!) Do I walk in with my bald baby and guilt someone into it?

Do I find someone who knows someone to ask someone?

Do you want to help? What are your ideas? Tell me?

Today is brought to you by the letter H.

heartwrenching  

Web definitions (Heartwrencher) A female Dreadnok who carries a large wrench.. www.ask.com/wiki/Dreadnoks

Um, ok. Not the definition I was going for. Here, let's do it in pictures:

Lyric utterly adores Aria. She shows it in a dozen ways nearly every day. By comparison, her "Pain In the Ass Big Sister" moments are few and far between.

Still, I worried about how Lyric would respond today when she came home to see Aria nearly bald (it really does happen faster than I could imagine). Lyric's verbal filter typically is...a colander with a giant hole in the center. On the ride home she said,

"I won't say anything...well not TOO much. Mostly. Well, how can I help it if she's bald?"

Oh, dear.

But moments later, she was consumed with concern over how she would respond upon seeing Aria. When we got home, she tiptoed in, ran up to see her sister, and bolted back to see me before I'd even made it out of the garage.

"Aria looks sooooooo cute with her little head, like she did when she was a baby!"

Then she ran back up to tell Aria how much she missed her, and she rubbed her head.

Aria was not entirely receptive to the gushing. And her head, incidentally, is not actually so little. But my Heart grew two sizes this day.

And so, cognizant of Aria's steroid-induced, starch-craving munch-a-thon this month, Lyric let her eat most of the pizza for dinner, and merrily ate Aria's veggies for her instead.

Loss; Gain.

lossnoun /lôs/ /läs/

The fact or process of losing something or someone

"Finally, chemotherapy has led to Aria's hair loss. It's coming out in waves. Ha ha, get it? Waves." she said.

The state or feeling of grief when deprived of someone or something of value.

I sense a loss that Aria's cancer has so muted my excitement toward Lyric's major milestones. My oldest child finally has her first wobbly tooth and I could barely feign interest in her six-year-old smile.

The detriment or disadvantage resulting from losing

The loss of all my coworkers -- because I've had to lay off every one of them -- has left me numb, demotivated, and uninspired.

gain
Lyric is 6. We are two images in an infinity mirror. I understand why she has a hard time. My comfort is that I already know she'll do better than I do. My hope is that I help that more than I hurt.

Aria is 4. Just eighteen months ago, I didn't have much meaningful to say about her. That hurts to hear, and hurts more to say. She smiled brightly. She was "nice" and "normal," and that was a relief.

But the benefit arrival of this new being who didn't do things for ME (She didn't talk. She didn't cuddle.) was unclear to me. She needed to be more than sibling for the first one. But I regularly felt a loss in that I couldn't find something important, unique, or heartwarming to say about her. 

I hate how I interpreted her simplicity as mediocrity, but I also hated how I took comfort in it, as well -- in being glad she didn't express anything exceptional, including some sort of needs to be deciphered or managed.

At 2-1/2, she became both chatty and affectionate. Now we were getting somewhere. A change of schools may have made the difference. But maybe she was just biding her her time. Maybe she's not impatient like the rest of us. Even her stubborn streaks were fun, wicked, and lovely. 

By 3, I was becoming smitten. Smitten, for me, is better than "nice" or "normal" feelings. I love a good deep feeling. A little bit of drama. I wanted to be smitten, and I was.

But Lyric was still the full-time job after my full-time job, and Aria was still doing her own thing. Aria became the "wonderfully easy child" who "never needs anything." That wasn't the whole of our local Lifetime Special, but it well summarized the dailies.

At 3-1/2, Aria was diagnosed with cancer. We've spent the last half-year creating new space together. Long days, weeks at the hospital, together, unproductively pushing through the worst. 

But they don't feel like the worst at all. They are the gift of time with my "easy" kid. Here I get to find her soul, her heart, her depth, her uniqueness. Here I even find the parts of my husband I rarely have time to access and appreciate much lately. Here I can't think of much else than memorizing the light in her green eyes.

Lyrical Interlude: Symphony in C Minor

This isn't about Aria. I knew eventually I'd have something to say about Lyric that stretched beyond Facebook fodder. I'm surprised it took so long. She's not easily reduced to blurbs. It didn't seem fair to leave her out, but nothing ever seemed as stunning as "hey, this my life...with cancer!"

I worry a lot about Lyric. She's formally tested on the far right of both IQ and Anxiety bell curves. She is biologically constructed to identify, quantify, analyze...and then verbalize...all negative potentialities in her life.

She's also far on the right of Never Stops Flipping Around or Singing Really Fucking Loud curves. I tend toward physical inertia, and have an unfortunate aversion to yelping. Poor kid can't catch a break.

She is my very first spawn. Recipient of graceless parenting attempts and the bulk of my personal attention, good and bad. Then she got smacked in the face with a sibling who couldn't be more different...became her best friend....and then got sick.

Lyric is why I own 65 books on parenting, from classic Brazelton to the uberspecific "Freeing Your Child From Negative Thinking." She's why I never have the energy to read most of them. She's also why I roll my eyes at my own blog entries; I know full well where she gets most of her, um, personality quirks.

Today was her first day at Day Camp. Bedtime should have brought fear and anxiety. A breakfast of toast soggy with tears.

We should not have gotten out of the house on time, or without the echo of my sniping unenforceable threats on the way to the car. Lunches and swimsuits should have been forgotten. Conversation been limited to Lyric's time-sucking conjecture on the painful, humiliating day, nay summer, of terror that awaited her.

History says that today should have been fodder for her own adulthood blog.

Shoulda woulda. Instead, here's her top 10 of the day.

1. She looked forward to camp. She did not curl into a ball of despair that none of her school friends would be there. She said, and I quote, will the full inflection of a six-year-old shrug: "Oh."

2. We got to camp on time. With clothes on. She made her own lunch and breakfast. I reminded her to brush her teeth less than 3 dozen times.

3. I left her at the camp (or did she leave me?) with a smile and a freaking bounce in her step. Not our repetitive, sigh-filled, heart-wrenching ritual..... "Good morning. I love you, mommy. Have a good day. Good morning. I love you, mommy. Have a good day. Good morning. I love you, mommy. Have a good dayyyyyyyyy." 

4. I retrieved her at 3pm and she said nothing about how damn cold the swimming pool must have been this morning. Nothing about how she didn't make any (or enough) friends on the very first day. No scary/mean/evil teacher/friend/made-up-people stories. It wasn't too boring, too easy, too strange.

5. She volunteered that she swam all the way across the pool to earn The Bracelet. She didn't shy away from trying for reasons I rarely grasp.

6. She told her best boy-friend that she was jealous when he "liked" a new girl -- instead of shoving him or pulling the girl's hair. In other words, she coped better than your average high school sophomore.

7. She made friends with that same girl. She looked through the emotional interference and decided the girl was...nice. 

8. Her positivity at pick-up was followed by none of the standard, always inexplicable, Total Pissiness. No meltdown over the wind coming through the windows, the volume of the radio, or our lack of plans for the afternoon. No dissecting my tone or seeing judgements where there were none. Just a little tired and a lot of happy.

9. We went to Trader Joe's, it was fun, we came home. 

10. She ate a salad.

To date, my blog's purpose has been to sort my thoughts. To say I Get It to people who experience similar frustration or bewilderment.

Today's is for people who try to know their child for their child's sake, not for their own. Who try to see their kids outside of others' expectations and outside of their own insecurities. For those who produced brilliantly difficult children, do not feel like professional parents, and second-guess their seemingly futile efforts to try something different (or try the same thing ad nauseum), wondering if they are fated to end up with the indifferent results. 

A great first day at Day Camp can be a minor thing (we have a title!). But in between all these days that have me struggling to see the bright side (and I admit it is bright, it is my lens that is too dark), great first days are truly super sun-shiny.  

Come tomorrow, tears may spill, and anxieties could drive her constant questioning of my every word. But, we still earned a lot of "fuck-yeahs" today.