Love and Someone Else's Deathly Ill Child

It's the last Love Thursday of the year, and today I want to write of someone I love who is going through something very difficult.

My dear friend A's nine-year-old daughter M is fighting for her life against acute T-cell leukemia, and it is one hell of a fight.  What M does not know but is learning is that her mother has a heart of oak and will not break unless M breaks, for good.  M will simply not be permitted to break, not for good, not before A has spent everything she is and everything she has and every scrap of power she can gather to protect M.

A and I are very different.  We are both women of upper-middle-class, Southern California, Jewish origin; we both love animals, plants, food, the great outdoors; we both have rich intellectual lives.  She is a fervent Zionist, though, while I am not a Zionist at all.  She voted for Schwarzenegger when he ran for governor of California the first time, and I ridiculed her choice.  Also, where I recoil from the thought, she has happily given birth to two children she loves more than anyone else in the entire world.  And if you're going to have children, that's exactly how it should be.

I must confess:  I do not love A's children.  It's not that I dislike them or wish them harm, and I do love them the way I love people generally -- distantly, with no deep feeling, just unspecifically benignly wishing them well.  I don't really know them, nor is it important to me if I ever do.  They live far away, on the other coast of this continent, and I have only met one of them, M, when she was very small, moody, and needy, and A was new at being a mother and very busy trying to do it perfectly, berating herself out loud every time she thought she had made even the slightest mistake.

No, I do not love A's children.  I love A.

A and I have been through truly terrible things in our lives.  A and I have saved each other's lives.  She has actually saved my life concretely, buying me groceries when I was starving, giving me paying work when I had no income.  I have served as an emotional support to her.  I have not needed her concrete help in years, and since she has married and had children, she has not required my emotional support almost at all.  Yet I love A like a sister.  I think of her as a sister.  I think of her more frequently than my actual sister, who has spent less time in or on my life than A even though my sister and I shared a room for my first eight years.

So now A's little girl, M, is terribly sick, and I find myself naturally hoping M doesn't suffer much more and also doesn't die, but I just don't feel it for M at all, except as I would feel it for any child, anywhere.  No child deserves to be this sick and miserable, yet many are, and worse, and I hate it for all of them.  My sorrow and my fear for M specifically, though, are not about M at all, but are all about my friend, A, whom I really love, with a capital L.

This girl is part of her.  This girl is every other beat of her heart.

Many years ago, A moved to Israel and became an Israeli citizen.  Lots of people change their names when they do this, when they "make aleeya," because they feel like they are going through a kind of rebirth.  My friend changed her last name to one she made up for herself meaning "daughter of oak."  She married an Israeli, but it was a bad marriage, and she had to give up everything she owned before he would consent to divorce her, which is how it is in Israel if you are a woman stuck in a bad marriage, and if you are lucky enough to have a bad husband who can be persuaded to divorce you at all.  She became disenchanted with her new country for this and many other reasons, and returned to the US, still imperfect but still home, where she eventually met and married the man who became the father of her children, and whose parents are Israelis.

Her last name has changed five or six times since I have known her, what with one thing and another, but she is still Daughter of Oak to me.  I will always know her as Daughter of Oak, even though it wasn't the name she had when we met.  It's her Daughter-of-Oak-ness which is going to pull her through this war she's in now -- if her poor oak heart isn't splintered and killed by it.

With all the hell she and her whole family are in right now, she can still make me laugh.  These foreign things, these children about whom I only care especially because they are hers, they really do make her a mother, a classic mother.

A gave birth to her children with a midwife and no drugs, and she feeds her family all natural, all-organic foods.  She didn't have her children immunized for fear of side effects.  An attachment parent, she breast fed them as long as they wanted.  Knowing these things about her, you might guess that she is not the sort to reflexively submit to every treatment plan any doctor proposes.  Her daughter gets chemo because chemo has proven effective in combatting even this kind of leukemia.  It was very hard for A to consent to M having her brain irradiated prophylactically, though. 

Apparently, with this kind of leukemia, chances are high that every patient will relapse, and chances are high that relapse will occur in the central nervous system.  If relapse occurs in the central nervous system, chances are the patient will die, and badly.  In a patient who receives prophylactic intercranial radiation, though, the chance of a relapse occurring in the central nervous system usually diminishes so significantly that it would seem like an obvious choice.  However, there is not a lot of data yet on long-term side effects of the latest treatment protocols.  When the treatment was new about 25 years ago, children were given so much radiation it fried their brains, either killing them all by itself or rendering recovery almost meaningless.

M is very smart.  M wants to be a physicist and work for NASA someday; in fact, hanging out with NASA and helping during a shuttle launch is her Make-A-Wish wish.  (And yeah, her illness is so severe that immediately upon diagnosis she was urged to lodge a wish with the Make-A-Wish Foundation.)  "M is her brain," A told me.  "What will she do if she can't be smart anymore?"

The doctors swore that this would probably not have any "significant" effect on M's intellect.  "And so what if she loses a couple of IQ points?" lots of people asked A.  "She's so smart already, she can afford it."

This infuriated A.  This was not helpful input.  What was helpful was when one of the doctors took the time to explain to A that M being young and brilliant had ample dendrites in her brain, and that meant that her brain would have more opportunities and resources to recover its health and power even if it was slightly damaged by treatment.

Like you do when faced with a choice like this, A read every published paper about this treatment and even went over other as yet unpublished data with M's oncologist.  She asked other people to help her read and interpret.  The learning curve on this kind of exercise, the culling and comprehension of useful information from medical studies not written to be understood by patients or their parents, especially old studies or studies reviewing data so old it is almost irrelevant because the protocols have changed so much, is not a gentle slope.  It's like throwing your brain off a cliff and hoping it doesn't go splat at the bottom but instead bounces back up to you knowing something you can use, with everything you hold dear at stake, with someone else's dear and ebbing life -- and brilliant but delicate hope of a future -- at stake.  In the end, even after all that reading and talking, A was still unsure, but she gave her consent, because in the end waiting was not an option and there simply was no better choice. 

It terrified her.  She agonized that she would fail her child fatally, no matter what.

The radiation treatments were not in and of themselves traumatic, and at any rate they are now over, so recently A wrote in one of the e-mails she periodically (between crises) manages to send to all her family's well-wishers about her meeting with a doctor who had tested M to see if there had been any brain damage.

(Here I paraphrase only slightly A's own words.)  On vocabulary, motor and spatial tests, even halfway through terribly brutal chemo and many horrible events, M scored in the 98th percentile.  What a relief!  And yet --

"Wow, she could have done better," remarked A to the doctor.

"What did you expect, 99th percentile?" asked the doctor.

"I guess, or better," replied A. 

The doctor then explained that these scores relate directly to IQ and reveal that, even after everything her poor little body has been through, M scored higher on these tests than 98 percent of all the children, sick or well, who have ever been recorded taking them under.any circumstances. 

A was elated, of course.  And I laughed when I read about it, remembering my own mother, and knowing she would have responded the same way.  We are from the same stock, A and I, from people who, when 98 percent of all parents would be thrilled with 98 percent -- or 98th percentiles -- instead respond, automatically, irrepressibly, "98?  Why didn't you get 100?"

I love A.  She is a mother, through and through, and she has a heart of oak.  I am far away and cannot do her laundry or dishes, weed her garden or walk her dog, and I do not write to her or call her out of the blue because I know what this kind of war she is in right now is like, and I would not demand a single resource from her, not even an instant of her time, but she knows I am here and will listen at her convenience.  Though I've told her honestly that I am afraid for her, she does not know the depth of my terror, nor that all my terror is for her and not her child.

But she is a mother, through and through, and she has a heart of oak, and that heart beats double time, one beat for her daughter, one for her son, so I, though I have but a heart of dough, I will wrap them up in it, too.  My heart does not care about them, but it loves her, so it will just have to stretch to embrace them as part of her.  I will wrap them up with her in whatever kind of trivial metaphorical love pastry I make with that dough every day and have to hope is enough.

Happy Love Thursday, everyone.  I hope whatever you've got to throw at love sticks, and is also enough.

Any is always better than none.

Comments

[Ron Sullivan]

Your friend and her kids -- both of them -- have my sincere best wishes for a good outcome in the new year. Also a sort of sigh of recognition: "I should be the perfect mother" -> "She could have done better." Really, cut that out, mom. You can bet it leaks through to your kids whether you ever say it in front of them or not. Some of us never get that voice to shut up, either. (Of course, that chide there appeals to the inner perfectionist itself, doesn't it...? And so on.)

About that risk-of-immunization bit: I myself in my adult life have taken care of two kids who got sick enough with diphtheria to do time in the ICU (in isolation) because their daddy the chiropractor refused immunization for them. The younger one especially was on Death's front porch at least. Diphtheria! In the twentieth century! In the northern California prosperous suburbs! In otherwise healthy, active grammar-school kids with a wholegrain-healtful diet and lifestyle!

So I guess I'm a bit personally jaundiced about all that, without even touching on herd immunity and civic responsibility.

Oy. Off soapbox. I still really hope your friend and her family come through this OK.

[Sara]

Thanks, Ron. Naturally, I hope this, too. This has been perfectly awful for the entire family, you know, the way it always is for any family who has to endure this or something like it. Also, the father is very sweet but does not have a heart of oak, and everybody has an opinion. Ugggggghhhhh.

About the immunization thing -- I may have misstated. She and I had lengthy discussions about this at the time, and I told her of people I know who have survived things like polio and TB, and what their lives are like, not necessarily terrible, but more difficult than they would have had to be if a good vaccine had been available when they were children. I reminded her that catching some of this stuff, like small pox and diptheria, seems like a trivial risk to us because people have been getting vaccines for so long that we don't know anyone our age or younger who has contracted any of it. Not in this country, anyway. But A loves to travel, and it's something she expects to share with her children. Vaccines will be required for their safety. I think there are some places they are not even allowed to travel without proof of vaccination.

Still, I also know children who are believed to be autistic because of the vaccines, children who were "perfectly fine" according to their families 'til they received them and then changed noticeably. So I don't know what's right. But it is possible in the end that A got her kids some vaccines after a lot of research into which were the riskiest for side effects but just didn't go for the full panoply. I can't remember now.

I would also be surprised to discover that they were allowed legally to enter public school without any at all. Talk about the health of the herd -- without proof of specific vaccinations, no one was allowed to attend public school when she and I were the ages her kids are now. Maybe that law has changed. Or maybe it's just a tiny subset of available vaccines which is legally required now.

Sometime when all this is over, I will ask her about that, just to set the record straight.

[patry]

I, too, hope for health for her child, and peace for the mother with the heart of oak.

I also wanted to stop by at this late hour (1:43 a.m.) to wish you a year filled with light and joy, and to thank you for all the insights and book recommendations, the stories, and the art tips you've shared with me in 2006.

[Sara]

Thank you, Patry. Your visits are always welcome, even at strange hours, and it is always a pleasure to converse with you. In fact, I have many of the same thanks and good wishes to offer back to you.

I'm very much looking forward to reading your book when it hits my local bookstore. I also look forward to hearing of your further adventures as a Published Author (and to the cognac ads shot on your beach once you become a Famous Published Author; I know it won't be long).

Cheers!