Late at night . . . too tired to edit . . .

It’s in the dark of night that fear’s cold hand catches you in its grip.

You’ve perhaps noticed the lack of posts over the last couple of weeks, as I’m usually a weekly poster.  My absence punctuates the answer to why children’s diseases lack funding and advocates.  It’s sorta like expecting soldiers in the trenches to negotiate a cease-fire while they’re fending off the fire.  We’re down here, doing all we can, and sometimes it saps our energy, while others there truly is no time to give to anything else but.  I have these fantasies about running 50 5ks in 50 states (a sort of Dean Karnazes thing without the superhuman athleticism) for childhood disease awareness;  but because of what cancer has done to my family, I lack the financial wherewithal to pull off such a thing.  Or maybe just a cool fundraiser, but again, largely as a result of cancer, I am isolated.  My old contacts have gone on with life and are no longer part of mine.  My career is a relic of a now-unfamiliar past.

I had a break, a nice little hiatus, from cancer treatment.  My daughter hasn’t had a drop of poison since Thanksgiving 2008, and while I’ve been ever watchful for cancer’s unwelcome return, I have to admit . . . it took me by surprise.  Isn’t that how it works?  You worry and you worry and just when you start to think “well maybe . . .” the evil c pops right back into your life.  Well, for some there’s no hiatus, so I have to be grateful for the breather.  For some it’s an unrelenting assault.  For us . . . well, we don’t really know yet.  I’ve steadfastly maintained that we don’t KNOW that cancer has “returned” because we never knew for sure that it left . . . and I’ve been relieved that the neurosurgeon who will no doubt offer to slice open my daughter’s spine again is on another continent where he and his scalpel can’t touch us. 

I know that the current status of medical wizardry has little to offer for neuroblastoma patients who relapse.
 

So maybe I have simply been in a necessary state of denial?

The problem is that it’s hard to convince yourself, to govern your emotions and your less rational thoughts, when you’re asleep and the subconscious is at the helm.  I’ve had very strange dreams that have left me staring at a black ceiling in the wee hours.  Doesn’t mean cancer’s back, of course; just means that my confidence that it’s not may be failing.  That doesn’t change what is, it only challenges my perception of what is . . . but I have to live this life, whatever it brings.  I don’t think I’m ready if more cancer is on deck.

Last night it was the panic attacks that kept me up.

I have to talk myself through those.  Reason with myself that it’s not a heart attack.  Just breathe.  They’re not as terrifying to me as they once were, but they’re no picnic either.  But that was just part one of a sleepless night.

At about 2am, Aurora woke up beside me, thrashing her legs and crying out.  At first I thought she was having a bad dream, so I just covered her up and soothed her.  But as this continued to go on about every 20 minutes or so, I realized that she was in pain.  (That, and she said she was in pain.)  It was hard to get her to say what hurt, but I finally figured out that it was her leg.  Her left leg.

I rubbed her back and her legs until she fell asleep, only to wake up again; this went on until about 6am or so.  With no acetaminophen in the house, I decided to give her a heat pad and good old mama comforting and hope for the best.  She finally fell asleep and remained that way for a couple of hours.

I have no idea what it was about, but that doesn’t stop my imagination from creating scenarios.  Usually those involving a ravenous small blue-celled tumor devouring her nervous system.  My mind is trying to recall which peripheral nerves are at T12, and what they do.  My memories fly back to when Aurora was six weeks old and would scream in agony any time Zach and Ava would pull on her legs to get her attention.  Are we there again?  Because just a few days ago I was satisfied that the fused MIBG-CT scan was merely showing us tumor tissue that had existed all along.  In the wee hours with a screaming child, my confidence waned considerably.

In the dark of night, I realized that I may be wrong.

It’s a helpless feeling.  So . . . I blog.  What makes me feel less helpless?  What’s the opposite of being reactive?

That’s right.  Being proactive.  Hypervigilance to the uninitiated may seem like a mild psychosis; for folks like us, it’s a lifeline to sanity.  Learning what we can do to help, getting our hands dirty – those things are not just good for the world, they are good for our souls.  For our day-to-day coping mechanisms.  What seems to some like “running away” is actually a sort of “running toward.” 

Those of us struggling to hit our stride in the new normal know that it’s exceedingly difficult for the rest of the world to relate to us.  The platitudes of the uninitiated, while often well-meaning, sometimes serve as little more than a reminder of how far removed we are from the place we were.  And those who stick with us are often anxious for us to fall back in stride with them.  It’s nearly impossible to do so.  For most rational and caring parents, the illness of a child is life-altering and not something that you can file away in a memory box.  For parents who have lost a child, the screaming vacuum of that child’s absence is a constant.  Exhortations of friends and family insisting that you rejoin the world only serve to further isolate you, as you recognize that they just don’t – perhaps cannot – get it. 

I’m sure that Christopher Reeve and his wife Dana were told to accept the new reality, just let go and let God.  And I thank that God that they didn’t:  the Reeve Foundation is the reason my daughter walks.  The stuff I learned there, no one was telling me about.  I was told to adapt and accept.  What about John Walsh?  Talk about obsessed.  How many times do you think he heard “Jesus, John, just let it go.  Your son’s not coming back?”  Look what he has personally done, all on his own, for the cause of missing children.  What a legacy.  And then there’s our favorite:  Nancy Goodman Brinker, sister of a breast cancer victim, founder of Komen for the Cure, the architect of . . . pink. 

We childhood cancer parents have expressed complaints about the sea of pink every October (especially since it follows a relatively gold-free September) and throughout the year.  It’s everywhere and everyone knows what it’s for.  We’re jealous.  If people gave this much attention to childhood cancer, maybe we’d be making progress by leaps and bounds, and yet we lag behind.  Those of us whose kids face more treatments are painfully aware of how little has been accomplished.  Maybe those of you with other childhood illnesses in your lives feel the same way; I can only venture a guess.  But there is no doubt that Brinker changed the landscape for people with breast cancer.  And for fundraising foundations.  And not just the hue of it . . .

Nancy Brinker started Komen for the Cure because she watched her sister die of breast cancer.  It’s as simple as that.  She saw an unfulfilled need, and she got to it.  Much like Reeve and Walsh, she funneled her realization that all was not well in the world into a concerted effort to fix it.  Brinker herself was treated for breast cancer.  And she rode on the coattails of Betty Ford’s candid approach to her own battle with the disease.  Imagine, a brand-new First Lady, talking to all the world about breast cancer?  (Did she just say “breast?”)  Because back then, you didn’t talk about it.  All that changed because of Betty Ford and Nancy Brinker.

You all probably know that Betty died very recently, and most of the editorials speak of her addiction struggles, her treatment center in California . . . and only mention that she had breast cancer, but not really how atypical it was for a woman to talk about it back then.  We take for granted today what was a major thing a mere thirty-plus years ago.    Breast cancer was a hush-hush ordeal.  Can you imagine?   And what a fortunate turn of events, that Brinker would decide to start Komen at around the same time.  People were ready to talk about breast cancer, and Brinker was poised and ready to cash in on that fundamental change of thinking.  She started small:  her social network consisted of a group of contacts from her husband’s business circles.   It was a formidable group, moneyed and connected.  But it wasn’t the money or the research that is Komen’s legacy so much as how it literally changed the way breast cancer is perceived in the world.  The late great Betty Ford broke taboo when she announced her disease to the world, referring to it by name rather than some vague “woman’s disease.”  And Komen ran with this.  Today, the pink is ubiquitous.  In fact, the words “the pink” require no explanation.  This is what one woman accomplished with a few motivated friends.  We can’t even fathom being hush-hush about the disease now, so effective was Komen in tearing down those walls.

There is no shortage of breast cancer foundations today.  Komen is but one of many.  The same is true for childhood cancer, in spite of how little funding we’ve managed to secure.  The problem is, in my opinion, that there are simply too many causes.  Too many unfulfilled needs.  People are so tired of outstretched hands.  

I’m not interested enough to research the figure, but would anyone care to venture a guess as to how many fundraising-slash-awareness operations are in existence just for childhood diseases?

The market is saturated.

So I will again ask you, the parents of sick kids . . . what can we do to help all of the kids?  What can we do that doesn’t require a cash donation , that doesn’t require someone to “choose” the most deserving cause?  (Why do you think the American Cancer Society thrives in spite of its shocking administrative budget?  Because folks are trying to cover more bases with the same donation.) 

In the childhood cancer world we struggle with this.  There is a huge amount of resentment toward the pink.  (It doesn’t help matters that Komen uses donor funds to threaten lawsuits, and file more than a few, against smaller cancer-fighting organizations that dare to encroach upon their protected “for the cure” phrase.  Doesn’t make Komen seem very much “for” a cure, does it?)  We keep hearing about how “rare” our kids’ diseases are.  Often it’s the parents, in some misguided desire to amp up the drama, who use the term “rare.”  Or maybe they use the term – as I did – out of ignorance, thinking that the rarity would inspire caring, when in fact the opposite occurs.  People think your child is a freak of nature, an abomination, a candidate for Darwin’s theories.  Considering that adult cancers are largely the result of lifetime environmental exposures and lifestyle choices, what explanation is there for why kids get cancer?

The explanation is the same explanation whether it’s childhood cancer, autism, asthma, or severe and life-threatening allergies.

Back to my question of “what can we do?”

I have some thoughts.  It is our very way of life that has caused these epidemics of children’s health, not survival of the fittest.  It is our plethora of toxicity in the environment coupled with the poor nutrition our bodies take in that has caused this phenomenon.  And it’s a crying shame that only the ones suffering understand this truth.

While your children are healthy, you can pretend that you’re doing everything right and therefore those people with sick kids are doing something wrong.  This is not necessarily the case.  Perhaps your child merely dodged a bullet.   In America, we tend to take credit for fortune when it’s often just circumstantial and put more stock in the exception than the rule.  This is why everyone thinks their child will be born healthy, a future beauty queen or all-star.  We think our kids will be above average; why would we ever expect them to be other than healthy? 

What’s a parent of a sick child to do to debunk these myths?

I suspect that we’ll be waging an uphill battle, outnumbered.  But there are other ways.

I’ve said it before and I’ll say it again . . . question your beliefs.  Look for the inconsistencies.  And think of policy choices that benefit children.  Valuing our youngest members is a precursor to everything else.  If we value them as people, and not just extensions of their parents, we take blame out of the equation.  I am constantly shocked by the number of people who think we shouldn’t give welfare benefits to people who have too many kids, as if starving the kids will teach the parents a lesson . . . and then the same people will say that kids matter?  Do they mean all kids, are just the kids from respectable families?  Are they excluding the ones from the ghetto or “trailer trash?”  Why so much hatred toward people getting help for their families?  Don’t you think that the folks with healthy kids feel the same way about all the extra resources your kid takes from the school system?  What would you say to them if they had the balls to complain about it to your face?

Ask yourself this (and no, I don’t want to debate immigration policy:)  should we provide medical care to the children of illegals?

Should homeless children have access to food and medical care and shelter?

Whose problem are these kids, anyway?                     

Does your passion for the sanctity of life begin and end with the abortion debate?

And shouldn’t everyone care about my child’s cancer?

While it may seem like a small thing, the attitudes that people carry around with them are not always a carefully constructed list of reasoned points-of-view.  On the contrary . . . they are generally knee-jerk reactions or extensions of deeply-held prejudices.  Ponder these things.  Ponder your own.  Challenge people’s assumptions.  Don’t succumb to insults about your patriotism or godliness:  you’ve seen things, experienced things, that other parents haven’t had to. 

It’s important to spread awareness, raise money, get politically involved.  But these things take time and often money.  Attitude adjustments, however, are free.  Examine yours.  See if something needs a little tweaking. 

Don’t ask people for your compassion if you have none to offer anyone else.

Hypocrisy will damn us.  But more importantly . . . an inclusive attitude to the tune of “kids first” will benefit everyone. 

With that, I’m going to bed.  Hoping for a peaceful, pain-free night.  For my daughter, and for all of the babies and children and young adults out there who are fighting sickness in their lives.  And for all of the exhausted parents caring for them or coping with not having them to care for anymore.  But as for the rest of the world . . . I hope that some of this keeps you up, just for a little bit.  Just something to think about, the ramblings of a frightened, worried, and tired mom of a cancer patient  . . .