Sunday, April 30, 2006

Little bit of love, little bit of tofu

Today, we went to church for the first time since Little Warrior's diagnosis in January, and the last time for a couple of months, since LW begins "double dose, double scoop" chemo on Thursday.

We walked in, and everyone in the entry/fellowship area turned ... and applauded. And cheered. Forget verklempt, I had tears rolling.

Then, during the welcome at the beginning of the service, our family was specially welcomed. More applause

Then, wholly a coincidence, the first hymn was "Come, Come, Whoever You Are."

Tears rolling freely down my face as The Husband and I looked at each other. This was the song that we sang, often with broken voices, to LW in the hospital, because of the line, "...ours is no caravan of despair ..."

For those who are not Unitarians, the words of this simple song are:

Come, come, whoever you are
Wanderer, worshipper, lover of leaving,
Ours is no caravan of despair
Come, yet again, come.

So, time for Joys and Sorrows ... all eyes turned to us. I got up and told everyone first, why the first hymn had me crying, then, I introduced myself and Little Warrior for anyone who didn't know us, explained that she had been diagnosed with cancer in January, and since that day, this congregation had ministered to us in a million ways. Thanked everyone for "cards, casseroles and courage" and everything else they had given us.

A nice Sunday. We couldn't stay long, fear of germs and whatnot, but it was good to return home.

The Bulge ... seems to have gone down a good bit since last night. A few Wilms parents have emailed me to mention several things it could be, that are not dangerous, so I'm feeling better. Thanks to RevChristine for alerting me to the realness of PTS, since I was definitely experiencing it last night. Whooosh ... I was completely back in that fear and mindset that I was in before her surgery.

But today is better. And we see the doctor on Thursday. Not that I'll wait that long if it gets worse, but it seems to be getting better.

Unrelated gift to my blog friends: if you like chocolate pie, you MUST try this recipe. Yes, I know it says tofu. I am not saying that this recipe is good "for a tofu pie." It is the best chocolate pie I've ever had, period. But you must use silken tofu. Perhaps the easiest pie recipe in the world, short of buying one at the store. Anne, get AJ to make you one. I am not a granola head, I am a foodie. And a chocolate freak. If I say it's good, you can trust me.,,FOOD_9936_14312,00.html

Saturday, April 29, 2006

A bulge

So, you're just going along, getting back in the groove of things, occasionally going 20 minutes at a time where you don't think of cancer. And then.

There is a bulge on one side of Little Warrior. Right where the tumor bulge was before.

Now, I'm sure it could be so many things. Maybe what remains of that kidney is putting out lots of fluid. Maybe it's related to her muscles not being healed yet. It's not hard like the tumor was. It's soft.

Maybe this. Maybe that.

I'm scared again.

Mission-Centered Committee on Ministry

Even though 90% of my brain is consumed with family and cancer, there is a small portion still allocated to my church and helping it to grow both numerically and in effectiveness.

Through this whole cancer-thing, I've learned a lot about ministry, as much of my church has ministered to us. We do not have a minister, full-time or otherwise, not out of choice, but economics. A lot of what a minister would do has been taken care of by our congregation. Friends have come up to the hospital, sat with us for hours, listened, talked, offered hope. They have fulfilled the spirit of Matthew 25:35, as they have fed us, clothed us (diapers for Little Warrior and their own sweatshirts for The Husband and me), given their literal blood, and mailed cards.

Like in many churches, when the subject of a Committee on Ministry has come up, it has usually been in the context of "we need someone to be the go-between with the minister" or "we need someone to deal with this problem person."

No minister now, but problem people ... well, there will always be at least one of those, right?

But I'm mulling over the idea of a Mission-Centered Committee on Ministry and how, not having a minister, we have even more of a need for it. A COM that, much in the way the Supreme Court is all about the constitution, is all about our mission. (We have a really great one.) What a concept, a group of individuals whose responsibility it is to make sure that we are working to fulfill the guidance of our mission.

Hmmm. Muse, muse, muse.

Friday, April 28, 2006

Differing levels of AQ and AQR in males/females

You know about IQ - Intelligence Quotient. You've probably heard about EQ - Emotional Quotient. Now, I present to you -- the AQ.

It's not Adversity Quotient.

It's not Autism Quotient.

It is ... Asshole Quotient.

AQ is a somewhat measurable (completely subjective and all anecdotal) level ascribed to the male of the human species. That number is not as important as the AQ-Requirement level, found in the female of the species.

(I am sure that there is a related corollary switching the genders, my research, however, has been on the above male-female dynamic. No sexism is intended, men and women can be equally good or equally bad.)

With that disclaimer, back to the subject at hand.

Human females have different levels of the AQ-Requirement. It is theorized that everything from genetics to experience can affect these.

Some women have very high AQ-Requirements, or AQRs. They require that a male have a very high AQ in order to view him as a mate-able object. Those males who do not have a high AQ are often characterized by this type of female as "a wonderful friend," or "like a brother."

To the friends of a high AQR female, her choices may appear incomprehensible. "She only likes guys who treat her like shit!" reported one friend of a test subject.

Friends will often question why a seemingly intelligent female will continue to accept the poor behavior of the high AQ male, not understanding that there is a simple x + y dynamic going on. A female with a high AQR is not making a choice between a high AQ male and a low AQ male. Because of her AQR level, she effectively cannot "see" a low AQ male. A low AQ male is essentially, to her radar, not male, e.g. not someone whom she could potentially mate with. She, therefore, is choosing between a high AQ male or no one.

Interestingly, the levels of both a high AQ male and a high AQR female can change. Life experiences can have a dramatic effect on both.

It should be noted however, that the levels will not change simultaneously in a high AQ/AQR couple. This is often the great fallacy in the high AQR female's mind: that by being in a relationship with her, the AQ level in the high AQ male will lower. It will not. Through extensive research, we can report no findings of a situations in which that ever happened. It is only outside of a relationship with the high AQR female that the AQ of the male can be lowered.

Occasionally, the AQR in the female will drop abruptly after being in relationship with a high AQ male. If a male with a very low AQ is in contact with the formerly high AQR female, he has the possibility, at this point, to retrain her instincts, making it impossible for her to view a high AQ male as a potential mate again. And, as seen in the case of the author of the study, she will become fairly intolerant of the situation of other AQR females, not unlike a reformed smoker, drinker, or fundamentalist.

Thursday, April 27, 2006

Little Warrior in Camouflage

Little Warrior is scheduled for a CT scan on May 25, the day after her first birthday.

I feel on the verge of bursting into tears.

There is no logical reason for this. The CT scan is a normal step, and hopefully it will give us good news. No cancer to be seen.

But just the thought that it could show something scary ...

Do cancer parents get PTSD? I suddenly have a vision of myself in the supermarket ... I walk past the lobster tank and the sound from it is so like the ubiquitous fish tanks they have all through the hospital that suddenly ...

I AM IN THE JUNGLE!!! RAT-A-TAT-A-TAT!!! We see Lizard Eater, covered in camo clothes and makeup, running through the Vietnam brush, Little Warrior (in camo makeup and a camo onesie) strapped to her chest, Rambo-style.

CHEMO-CALYPSE NOW. Coming soon to a theatre near you.

Wednesday, April 26, 2006

Movies to Watch Again and Again ...

Okay, copying Happy Feminist and Cuumbaya, I'm making my own "movies I'd see again and again." As Cuumbaya pointed out, not necessarily the best movies.

For my list, that point is self-evident.

1. Better Off Dead: let others of my generation wax rhapsodic over Pretty In Pink or Breakfast Club, I'll toss my vote to this underrated, over-the-top John Cusack flick. Really, who hasn't had the experience of going through a breakup and every song on the radio is a breakup song?

2. Crazy From the Heart: It was made for TNT, I think, back when the commercial cable channels could still get good scripts and good stars. (Now they all go to HBO/Showtime). Stars Christine Lahti and Ruben Blades in a romance between a high school principal and the school janitor in South Texas. Wonderful feel good movie.

3. And speaking of wonderful feel good movies ... Return to Me, with David Duchovny and Minnie Driver. But the real stars of the show are Carroll O'Connor, Robert Loggia and their "old man" friends. It's the happiest movie I know that starts with a heartbreaking death.

4. Crossing Delancey with Amy Irving. Oh, I know that Susan Faludi panned it for being anti-feminist. It's not. It's not about lowering one's standards, it's about learning to value someone for being decent and kind, as opposed to shallow and materially successful. A perfect example of a woman and her AQ. (More on the AQ in another post.)

5. Simply Irresistible with Sarah Michelle Gellar. Oh God, I know, I know. There is nothing socially or intellectually good in this movie. But it's a cute movie about someone becoming a magical chef, something I can't resist.

Actually, that leads me into the whole genre of "Food Movies." Is there a single one I don't like? Hmm. Not that I can think of. Ones I enjoy, in order of pleasure:

1. Like Water for Chocolate
2. Big Night
3. Soul Food
4. What's for Dinner?

Never have seen Tom Jones (the movie, not the singer.) Yeah, I know, they say I should for the food scene.

Oh wait, there is a food movie I didn't like. 9 1/2 weeks. Ha.

Feminism Causes Rape

It's not enough that feminism is the cause of everything from the breakdown of American society to teens killing each other, now, feminism "may be partly to blame" for rape, according to Naomi Riley in an article for the Wall Street Journal titled, "Ladies, You Should Know Better."

Thankfully, there are writers like Jennifer Pozner who are taking the time to point out crazy things like um, facts.

Monday, April 24, 2006

Power of Prayer? Or Not ...

I've had some time to think about prayer, here lately. I've kinda gone through the Berlitz course of personal philosophy and theology.

So, any conclusions?

I've had so many people who have prayed for us, and for Little Warrior. Literally, people around the world, since I have a former minister in Australia and a former brother-in-law in Prague adding their prayers to the mix. It felt good, all that focus and attention on Little Warrior.

Do I feel that the prayers are what saved her?


Do I feel a metaphysical God saved her?


Even as I type this, I feel a twinge of superstition. Am I calling for the forces of God to descend upon us, to disprove my belief? Will Little Warrior pay the price for my lack of faith?

I do not believe that. I cannot believe that. At the end of the day, I am a Universalist, not only in terms of universal salvation after death, but also universal salvation during life. If the force I call "God" is going to save one person from death, then that God would save every person from death. S/he doesn't.

I cannot reconcile the idea that the Force would be so capricious that it would only help those who receive prayers.

My father was supposed to be in artillery in the Korean War. Right before he was to be shipped over, he and my mother got in a car accident. Because of that, he wound up stateside, teaching in the Army Corps of Engineers.

His mama told him, "I knew you wouldn't have to go to Korea. It was because of my prayers."

This angered him so. "What about the boys whose mothers didn't pray? God didn't think they were worth it?"

The flip side of all this is just plain nasty. If prayer keeps one person alive, then when a child dies, that means that we didn't pray enough? Huh???

And then there's the science.

A few years ago, there was that famous study that "proved" that prayer actually heals people, even people who don't know they were being prayed for. Well, that study has been thoroughly refuted. Bad reporting, bad science, fake, fake, fake.

More recently, there was a study that proved it doesn't heal, and the people who knew they were being prayed for did worse. I'm not sure what to think about that, alyhough the "I didn't know I was so bad off you had to pray for me," thing has some logic.

So, do I think that there is no power in prayer?

Absolutely not.

I think there is tremendous power in prayer.

"But, but, but??? How can you say that, with what you wrote above????"

Here's the equation:

* Person praying for Little Warrior: the time taken to pray gives person the chance to focus on Little Warrior and feel sympathy towards her. This gives the praying person the feeling of doing something rather than being completely helpless (1 point), he lets me know he's praying for her, which gives me a warm feeling of community (1 point), and quite possibly, he then is a little warmer to those around him (1 point). If he is a Believer, then he also feels in contact with his version of The Divine (1 point), a feeling that takes him out of the world of shallow concerns and makes him feel there is a bigger purpose to it all.

* With the warm feeling of community inside me, I feel less alone, less depressed (point already awarded, above). This affects the way I treat all four of my children and my husband (5 points). This, in turn, affects how they interact with others, leading to more points. Then also, when I tell my children that so many people are thinking of us, praying for us, leads to their own feelings of community. More points.

A phrase that has been said or written to me many times is "we're lifting up Little Warrior and your family in prayer."

I LOVE that. Being lifted up in prayer -- doesn't it sound lovely? No directions for us -- none of the "Just remember, with God all things are possible," "Just remember to give it over to God," etc. No advice, no false reassurances. Just documenting what is being done. "We are lifting you up in prayer."

I feel lifted up in prayer.

To me, that is awesome power.

Sunday, April 23, 2006

Green Mountain - Not a Good Sales Technique

Knock, knock.

I go to the door, holding Little Warrior.


I'm sorry, (gesturing to baby), my child is seriously ill and now just really isn't a good time.


Well, she has cancer, so it'll be a couple of months.

--Sales person flips open his book and eagerly begins explaining how the two biggest killers are heart disease and cancer and it's all because of the company I choose to cool my house. --

I coolly explain to him that in her case, it's because of a mutation of the WT1 Gene, smile with no warmth, and close the door.

I was, actually, considering switching to Green Mountain. Think I want to now?

January 17th, I was still a kid ...

... January 18th, at long last, I grew up.

I just realized this. The Husband and I are watching VH1C's "Class of" show, where they show videos from certain years. We are 80's teens, and getting a kick out of watching songs from that time. They close-caption the show, which is an eye-opening experience for both of us. "I didn't know they actually spell out 'Method of Modern Love,'" sez The Husband. "Wow, 'The Reflex' really doesn't hold up when you read the lyrics. It makes absolutely no sense," sez I.

There is something about listening/watching these songs ... it's like when you get a whiff of something from your childhood like playdough or crayons and are instantly taken back to that time. Sitting here, watching A-ha croon "Take On Me," I can actually feel the way I felt back then. Young.

That's when I realized. I ain't young anymore. I agree with all the folks who say that age is all a state of mind. It is. I'm 36, not even remotely a Crone, but certainly a grown-up. But I never felt like one. I always felt like a kid pretending to be a grown-up. It still amazed me that "they" allowed The Husband and I to live in our house with no adult supervision.

January 17th, I was still that kid.

January 18th, I took Little Warrior to the doctor, a bit apologetic about making a fuss, surely it was just gas ...

... and we got an x-ray ...

... and on the way home, the pediatrician called and said Don't Go Home. It looks like cancer. Go immediately to the ER ...

... 1 1/2 hours of rush-hour traffic to get to the ER, just me and Little Warrior ...

When we got to the ER, I was a grown-up.

Saturday, April 22, 2006

Wheels on the Bus

Yesterday, I got to do "Wheels on the Bus" with Little Warrior.

For those living a child-free existence, this is where you sing the song, "The wheels on the bus go round and round, round and round, round and round ..." while bicycling your infant's legs. This is also a good cure for gas (the baby's, not yours), the only problem being that you are right in the line of fire.

I'm sorry, what was I talking about?

Ah, yes, wheels on the bus. Well, Little Warrior and I used to play this game frequently as it was a guaranteed way to make her smile. But, after the diagnosis, we couldn't. Too big a risk of breaking open the tumors.

Yesterday, I realized we could play it again.

There were not two happier people on the entire earth.

Don't Expect to Find a Paris Cafe in an American Suburb

However, hope springs eternal, doesn't it? So when I got an ad in the mail that a creperie was here in my neighborhood, I had to try it. The Husband brought home a "Greek Imperial Crepe," filled with "Melted Cheddar / Jack Cheese with Lemon Juice and Fresh Spinach in Artichoke Sauce with Walnut."

I took a bite.

It tasted oddly familiar.

Took another bite.

There was something crunchy in it, that wasn't a walnut. I visually examined the specimen. Water chestnut.

Took another bite and realized why it was familiar.

It was a crepe filled with spinach/artichoke dip. The kind you make with mayonnaise and Knorr soup mix. I know it was Knorr soup mix, because I recognized the rehydrated vegetables.

I am in the process of trying to lose weight and save money. To waste both money and calories on this was, to say the least, disappointing.

My point, and I do have one:

This very true story also makes a good metaphor. So often, we get excited about something that's too good to be true. A Paris creperie in the suburbs! Then when we get into it, we say, hmm. This is familiar. And we realize that we're eating the same old schlock found at every employee potluck, just wrapped up in a crepe and microwaved.

Moral of the story? There really isn't one, other than to say, don't be surprised. Match your expectations to a realistic view of the situation.

As for me ... well, I'll still keep trying little hole-in-the-wall places that sound too good to be true. About once every 15 times, I'm rewarded. That's not bad odds, in my book.

Now, please excuse me. I've got to mix up some crepe batter to have for later. See, I do know someone who makes fantastic, authentic crepes. Which is, I guess, another moral.

If Your Friend's Child Goes in the Hospital ...

I have the best friends and they have taught me so much through all this, namely, how to be a friend to someone whose child is seriously ill. So, for others who may be in their situation, here's what you can do to help:

1) If you have a wide community of friends, establish one person as "point person." This will be the person who does the phone calling to the friend, disseminates the information, etc. One of my friends even created a yahoogroup devoted to Little Warrior so that everyone could write back and forth with updates, who was taking casseroles to the family, etc. Doing this not only helps with the parents not having to make 20 phone calls, but hopefully you can also run interference with the not-really-a-friend person who wants to go up to the hospital, or call the parents with her story of her cousin's child who died from something similar, or whatnot.

2) Find out what's being done on the homefront, if there are other kids. Both parents of the sick child want to be at the hospital. If a family member hasn't taken up residence, figure out coverage. Even if there is someone there, take food. Ask everyone for casseroles and such. If the kids go to school, make up a bunch of sandwiches and snacks and bag them up. For non-parent caregivers, getting the kids ready in the morning was a big chore. Take over some easy breakfast stuff, like french toast, that just needs to be heated up.

3) Take them clothes. Doesn't have to be their clothes. My friends brought up some comfy pajamas, tshirts and flannel shirts of their own. There was something really comforting about wearing their clothing. No matter how hot it is outside, take a sweatshirt or jacket. Hospitals are freezing.

4) Take toiletries. Shampoo, soap, razor, toothbrush and toothpaste. If she has long hair, a ponytail holder. If she has short hair, some barrettes. If it's a guy, a baseball cap.

5) Take snacks. You know your friends, so you'll know what they like, but I would point you towards "easily digestible." Those first couple of days, we were so stressed out, didn't want to eat, but had to. My brother brought me a Kashi bar. Normally, a good nutritious snack. But, erg. Grab something like animal crackers.

6) Take stupid magazines. Nothing smart. Really really light things like "People" and maybe even the horrible "Reader's Digest." Those first couple of weeks, as we were going through tests and diagnoses, I tried to read a Newsweek, which is still pretty easy reading. I mean, it's not The Atlantic, let alone The New Yorker. I would read the same sentence over and over again, with it not making sense. Basically, look for something with lots of pictures.

After the initial "freak out" couple of days/if the hospital stay was planned in advance:

1) Gift cards for area restaurants -- especially if they deliver. Gift cards for the cafeteria or snack bar in the the hospital, if they give them. If not, an envelope full of $5 bills.

2) If there's a microwave on the floor that they can use, this opens up a lot of possibilities. Some of those microwave Betty Crocker desserts where all you add is water. Microwave soup or some of those meals that don't need refrigeration.

3) More magazines.

4) YOU. With food. This was the most wonderful thing. My friends would go to a restaurant, pick up food for all of us, and come over. Party in pediatric oncology room 9! If they're in ICU or PCU, you can just hang out together in the waiting room. It will be much appreciated.

My husband and I never felt alone in all this. 'Cuz we've got the best friends in the world.

Friday, April 21, 2006

Why UU's Should Have Watched Oprah Today

If you have a friend that might have tivoed today's show, get a copy. She took the piece that the NY Times did on "class" as a starting point. She had Robert Reich on -- some of you may have seen him at the Long Beach GA. Great show, touching on how important class distinctions have become. After Hurricane Katrina, I turned to The Husband and said, "Class is about to become the Big Topic. " Katrina illuminated a lot of things for a lot of people.

Could probably write several pages on this, but someone needs to nurse ...

Thursday, April 20, 2006

Things That Make Me Rant

Life goes on, and things other than cancer can still get me good and frothy. Namely, watching an episode of Dr. Phil, and getting the news that our church is considering hiring a "lay minister."

Each, completely unrelated to the other.

Someone has presented a proposal that we hire one of our members (non-theologically trained) to be our "lay minister," since we can't afford a full-time real minister. In addition to all kinds of logical, sentient arguments, this just affects me on such a visceral level. It makes my stomach hurt. I think seriously entertaining the idea is going to hurt our church. The idea is to present just the idea of hiring a lay minister to the congregation without attaching a particular candidate to it. Except, we're a medium-sized church -- but a small one, if you know what I mean. Most everyone already knows the person who made the proposal (who also wants the job). So then, it no longer becomes an academic question, but a personal one.

But for the record, out of all the 100 reasons I think it's a bad idea, the number one reason:

It will damage our credibility.

We live in a part of the country where most people don't know what the heck a Unitarian Universalist is. I know, I know ... I've narrowed it down to that tiny part of the US that includes every place but Boston. We struggle to educate people that we are, indeed, a real religion. Just a couple of years ago, in Texas, the state comptroller tried to yank our tax-exempt status away. Calling someone who is not qualified a "minister" -- lay or no -- does not serve us well. It adds to the belief that we are some fly-by-night, make-it-up-as-you-go, anything-goes group of people.

I will save the other 99 reasons for some other day.

Okay, watched Dr. Phil today. (Cut me some slack, it's hard to read while nursing a baby. And watching Andrea Immer when you can't drink is depressing.)

He had on a father, stepmother, and two daughters. Led by the stepmother, the family was claiming that the elder daughter was clinically narcissistic and what could be done about her?

Then the story comes out ... her mother died a few years ago from cancer, 6 months later the stepmother moved in, removing all evidence of the mother, they took the daughter on a "vacation" trip, then dropped her off at a treatment center in Mexico where she stayed for a year and a half, (and that first year they didn't talk to her by phone at all) ... oh, and the center has since been closed by Mexican authorities for rampant abuse. The stepmother said if the elder daughter died tomorrow, she wouldn't shed a tear.

OMFG! To give him credit, Dr. Phil tried to tell these parents that they were wack (not his exact words), but fuggedaboutit. As far as the father is concerned, this girl was born bad, he hasn't done anything wrong, etc. etc.

The reason why this is bothering me so much -- besides the obvious -- is because it so mirrors a situation I found myself in a few years ago. A situation where I quietly showed my disapproval, which was, of course, easily ignored. I still really hold it against myself that I didn't say "What the bleep are you doing???"

In a nutshell: had a friend who was a stepmother. She became convinced that her pre-teen stepdaughter was sociopathic. Not in the "kills animals" way, but in the "can function in society" way.

She completely cut the stepdaughter out of her and her husband's life. (Yes, I blame him even more for not standing up to her and saying, "This is my daughter!")

The final straw was when I went over to their house and there was a big sign posted in their back yard. "R.I.P. Tammy*" (*not her real name). What is that? I asked, appalled. "She's dead to us," my friend explained. At my horrified look, she earnestly said, "No, no, it has to be this way."

NO. My mother had to bury a dead child. I have been fighting with every breath of my body to keep a child alive. You, who have a living child, are not allowed to proclaim her to be dead.

Bless my parents. What was beat into us (metaphorically) was "I love you. I'll always love you. No matter what you do, no matter what you say, I will always love you. There is nothing you can do to make me stop loving you."

And believe me, my siblings and I tried! ;)

Wednesday, April 19, 2006

Re-entering Life

I am finding it hard to re-enter regular life.

Odd. The one thing that I have missed so much is regular life. My friends, my church, my denomination -- but now that it looks like I'll have the opportunity to do so in a couple of months, I'm having a hard time looking forward to it.

Odd, odd, odd.

Some of it is already beckoning. I've been the webmaster for my church's site for a long time, and now, at long last, I have people qualified to help me. And they're willing to let me be top dog, while they do the grunt work. But I just have the urge to say, "Take it over, do with it what you want. I don't want to be involved."

Our church's district has a summer program that's a blast. Imagine summer camp for families. I have personally persuaded at least 4 families to become participants. In the middle of this, I didn't think it was possible that we could go this year. Now, it looks like the timing will be right. And my closest friends are going, with their families. I just looked at the information on it, read the workshop descriptions. They sound good. I have no interest in going.

It just seems like everything takes too much effort, too much energy.

Maybe I just need a good night's sleep.

Tuesday, April 18, 2006

Children Under 3 Don't Get Cancer, Do They?

Excuse a bit of a rant.

I'm really getting tired of the phrase "ages 3 and up." Not only is it found in the materials for most childhood-cancer-support organizations, such as Make-a-Wish, Sunshine Kids and all family camps, but it is also found in the treatment centers themselves.

We live in a big city with one of the most famous cancer treatment centers in the world. They will treat childhood cancer ... as long as you're at least 3 years old.

Now, this doesn't bother me too much, because we are at a very good Children's Hospital, and there are some great reasons with going to a Children's Hospital, such as the fact that all of the medical staff are experienced with children -- anesthesiologists, nurses, techs, etc. The television doesn't carry Comedy Central, so I couldn't get my dose of Jon Stewart, but hey, that's pretty understandable, not to mention unimportant.

But just the fact that there is that limit -- a "you must be this tall to go on this ride" sign. Everywhere!

Many of these organizations that plan trips to baseball games and family picnics and whatnot understand that cancer affects the entire family, it affects siblings and parents as well as the patient. But if the patient is under 3, too bad. You need to take care of that yourself.

Here's what it means, having a baby with cancer:

* When you're in the hospital, or the clinic, you can't go down a few floors to grab a sandwich, like you can with a child old enough to a) understand and b) push the call button for the nurse.

* They can't tell you what hurts. So you just have to guess.

* You have to get them sedated for everything, because you can't tell them to lie still. But in order to be sedated, they have to go at least 4 hours with no feeding. Again, not something you can calmly explain to the patient.

* The normal things used to distract a kid while they're getting chemo -- video games, cartoons, promises of stickers afterwards -- don't work.

* In fact, there are no motivators that work -- telling a baby "Try not to gag on your medicine and you'll get a prize!" is useless.

* Sibling issues: they were just getting over the normal "There's a new baby in our house" issues, when WHOMP, now the baby has cancer. And all of the normal "sibling with cancer" issues, plus she can't tell them how she's feeling.

Oh, I could go on and on.

Now, I know that there are benefits to the patient being a baby -- no worries about school, they don't care (or know) if their hair falls out, you can feed them breastmilk to pump up their immunity without getting strange looks -- but dammit, we could use a little of that support, too.

Okay. Done bitchin' for tonight.

Taking a page from Anne:

1) Little Warrior seems to be getting over her cold/slight fever/vomiting without a trip to the ER ... okay, everyone knock on wood, please.
2) Even without outside help, my kids seem to be doing okay and overall, are pretty wonderful
3) TV was good tonight.

Monday, April 17, 2006

Love Song to Bubbe and Pops

My parents are about to leave.

How do I tell them 'goodbye' ... more importantly, how do I tell them 'thank you'?

They live a couple of states away, but they have an RV and do a bit of traveling. After spending Oct-Dec down here with us, they had just returned to their desert home when they got a phone call from yours truly.

"Hi, Daddy. It looks bad. They're talking about it being cancer."

As soon as the ER had ascertained that yes, it was cancer, my parents jumped in their car and drove hell-for-leather to my house to temporarily become parents of our three children, ages 3 - 9, while we spent two weeks at the hospital, immersed in tests and diagnoses.

At ages 75 and 76, it was not their plan to learn the intricacies of getting the schoolkids off in the morning and convincing the 3 year old not to wear a swimsuit when it's 50 degrees out, but they performed admirably.

This was a new thing for all of us. My family is close, but we are all quite independent, parents included. They have their life, we have ours, my siblings have theirs. We get together a few times a year and enjoy it, but other than frequent phone calls, we are not a part of each other's daily existence.

That changed with Little Warrior's diagnosis. As soon as the doctors began their refrain, "It's a marathon, not a sprint," my parents returned to their home just long enough to grab some clothes, their coffeepot and their rv, and returned to my town. They set up camp about 15 minutes away and became, as we quoted from 'Pretty Woman,' our beck-and-call-girls. They dropped kids off at school on rainy days, entertained the 3 year old on chemo days and picked up more pizza in 3 months than they'd probably bought in the previous 3 years.

Every time Mom came over, she kept the laundry going, washing, drying, folding -- she even learned which were the 6 year old's clothes and which were the 3 year old's. (No mean feat since the 6 is small for her age and the 3 is large for hers.)

After doing odd jobs around my house, fixing door knobs and shower heads, my father began a labor of love that lasted several weeks. We moved to this house just a year ago, and inherited a garden that had been neglected at least two years, probably more. Worried about his grandkids running into copperheads, he began clearing away brush and trimming up bushes that could attract their nesting. "You ever read 'The Secret Garden'?" he asked, surprising me as I learned that he had read on of my favorite books back when he was a kid. "Well, I think you've got a secret garden here." And so I did. As he cleared away weeds, neatly trimming and bagging the refuse, he uncovered a treasure trove of plants -- azaleas burst into bloom when the light could reach them, elephant ears appeared, lantana, little white flowers, and other plant life I couldn't identify.

The grandkids got accostumed to 'Bubbe' and 'Pops' being around all the time, so much so that any good behavior they might normally accord them was tossed out the window. They disobeyed, they argued -- in short, they acted with their grandparents as they do with us. And I think they began talking with their grandparents more than they ever had. Pops knows all about the Star Wars movies now, and Bubbe knows (and hates) Polly Pockets. They know that when you can finally get The Princess to do her homework, it'll only take her about 10 minutes. They know that if Bo Peep starts acting naughty, it probably means she needs a cuddle. They know that if The Boy gets argumentative, it means he's tired. And they know that when Little Warrior puts her hands on her head, that's her sign for "grandparents." She only does it for them.

Did they learn anything about their daughter? I don't know. I feel like they knew me pretty well before all of this began. They knew that I can cry unceasingly and still keep doing what I need to do. They certainly knew housekeeping isn't a priority for me, a fact which has only been confirmed during the last three months. And they knew that I can be a mama lion when it comes to my babies. ROAR!

I learned more about them. I learned that they have far more patience than I ever would have credited them with. I always suspected the marshmallow-inside of my gruff father, but I saw it prominently on display every time he looked at Little Warrior, his face showing his desire to scoop her up and take her far away from needles, prodding and poking. I learned that my mother has the ability to steel herself without detaching -- when I had to express out loud my darkest fears, I could see my pain reflected in her eyes ... but her replies were always calm, warm and reasonable. I saw in both of my parents a pride in my husband. He was a boy to them when we got married, now, they saw him as the man of his family.

My father has always used a certain classification for a special kind of person. "Can you send him for the ammunition?" he asks. You're down in the trenches, and the enemy is coming over the hill. If you send your foxhole buddy back for more ammunition, will he return?

There are many people out there who are good people, but you know you couldn't send them for the ammunition. And there are people whom you may not be as close to, but you know that they'd return with it.

I always knew you could send either of my parents for the ammunition, but this was yet more confirmation. I never even had to ask them to come. It was a given. There were no conversations. They were simply here.

It is time for them to return home. Hopefully, the worst is behind us, and now it's just time to finish out the chemo and begin healing. All of us, healing from this. They have a house they need to tend to, friends who have missed them, adventures that still beckon.

Part of me, when I think of their upcoming departure, feels a bit panicky. "What will I do without them???"

If they knew this, they'd be torn, but I think this would be the final sign that it is time for them to go. As parents, they were both very clear on what they knew was their one job with all of us. It was to teach us to fly. Building self-esteem, nurturing us, being friends -- pah. If that happened, fine. But it was never the goal. The goal was teach the baby birds to fly on their own.

If you find a bird with a broken wing, you can fix it, make it a little nest in a shoebox, put a little food near it. But as soon as it begins to move the wing on its own, you need to put in back in the wild. Otherwise, you are making it a pet, and it will not be able to survive on its own.

My wing is on the mend. It will be hard for them to leave Little Warrior, but it is time.

For my parents, love is a verb. They love their children. And they are still parents. I am grown with 4 children, but they are still parenting me. And teaching me to fly.

Thanks, Mom and Dad.

Saturday, April 15, 2006

Chemo Blues

So, I have a prescription called Zofram that is supposed to help with the nausea that chemo causes. However, Little Warrior just throws it up. There might be a suppository that she could take, but that would make *me* throw up. (Oh, I'm just kidding. If it would help, I'd give it to her. It couldn't be worse than forcing Captopril down her throat 3 times a day. )

Not too bad, though. Doing lots of nursing, wanting to be held 90% of the time. Oh, gee, I've got to cuddle an adorable baby all day. The torture of it all.

My other three, not having cancer, have been roly-polys, a fact which greatly concerned my slender family (I'm the only pudgy one) until they began noticing that at age 3 1/2, each one would suddenly stretch out and get skinny. But oh, the irony ... my father has made so many jokes about my butterball babies, and now this one ... he would give anything for her to gain some weight. Her little arms look like sticks. I think The Husband wants to try feeding her bricks of butter.

The doctor is unfazed, so I'm not worrying about it. I'm letting her nurse as often as she wants, which is about 50 minutes of every hour. You would think that the weight would be melting off of *me*, but life is unfair, which we've already learned, right?

Enough nattering on. My wing of the family is coming over for Easter tomorrow, before my parents return to their home on Tuesday. I should make some effort at picking up.

Thursday, April 13, 2006

A picture of Little Warrior

Thought I'd share a picture of Little Warrior. I probably won't leave it up permanently, but as an Ostara/Easter/Passover/Friday gift ...

This photo was taken yesterday. Not bad for someone less than two weeks after getting double partial-nephrectomies and having a grapefruit and an orange removed ... sum total, 2 lbs.

Oncologist talked to us today. It's mostly good news, but always the warnings not to get too comfortable. First issue is the post-op chemo and how will she respond to it, especially after she turns 11 months (a couple of weeks) and her dose is doubled.

And then there's the "we'll be scanning her every 3 months in case it returns."

But today, things are good. Today, she is happy. Today and today and today.

"She Won't Remember a Thing"

It is a bit odd. One of the things that has been repeated to me over and over again by well-meaning friends is "well, the good thing is that Little Warrior won't remember any of this."

I understand the feeling behind this -- that the treatment is scary and painful (it is) and so it's good that she can't remember it.

But I have some issues with this. First off is my concern that though she won't have conscious memories of this, she will have sense-memories. At 10 months, she doesn't have the ability (we think) to make any sense of this. She can't understand that all the poking and prodding is from love, and to heal her. All she knows is pain and discomfort and fear. I have concerns that she will take all of those feelings with her, with no way to comprehend them. I guess we will simply have to occasionally tell her about what happened, as a way to give her a context.

The other thing ...

This reminds me of when I was about 18 or 19 years old and I had my wisdom teeth removed. I asked the doctor about that anesthesia, and pain. He told me that I wouldn't be put under, but that the anesthesia they gave me would mean that I would have no memory of the pain.


Being on that side of the equation -- the side that had not yet had the pain -- this didn't sound like such a good deal to me. "You may go through absolutely excrutiating pain, we may do simply horrid things to you, torture you mercilessly, but hey, you won't remember it! So what's the problem?"

Ah well, nothing that can be done about it. She had cancer, she needed treatment to save her life, no real decisions there. The challenge in the future will be to give her the information she needs, and be honest about it, while not allowing that to become her identity. I do not want her to be The Child Who Had Cancer When She Was a Baby. Just as I do not want my identity to become Mother Of A Child Who Had Cancer.

It is something that happened to us. It is not us.

Wednesday, April 12, 2006

The Ham Gene is Passed Down

Oh, Lordy. Looks like Little Warrior is a ham like her mama.

She's in a bouncy seat, reclining. (Abdominal muscles haven't healed enough for her to stay in a sitting position for very long.) I was in front of her, balancing a Weeble on my head, which she thought was The Funniest Thing In the World. Naturally, I did it over and over.

Finally decided I needed to do some things around the house, so I handed the Weeble to her and looked away for a second. Heard a laugh. Turned back around. She'd put the Weeble on HER head and was laughing like, "See, Mom!" Of course, her sisters and her brother had to come see what the fuss was about. They declared her to be The Smartest, Funniest Baby In The World. They are quite proud of her.

14 pounds of pure ham.

My heart is bursting, full of laughs and love. And I'm thinking of a line from a Carly Simon song: "... so don't mind if I fall apart, there's more room in a broken heart."

Ain't that the truth.

Holy Shamoley! Jesus is a marshmallow!

Okay, I won't pretend to be the most pious person in the world, but this kind of freaks me out:
“He’s Alive” Buns (or Resurrection Rolls)

One roll of refrigerator crescent rolls
Large marshmallows
Melted butter or margarine
Sugar and cinnamon mixture

Preheat oven to 350.
Give each child a triangle of crescent rolls. This represents the cloth that Jesus was wrapped in. Give each child a marshmallow. This represents Jesus (white).
Have the child dip the marshmallow in melted butter. This represents the oils of embalming. Dip buttered marshmallow in the cinnamon and sugar. This represents the spices used to anoint His body. Wrap up the coated marshmallow tightly in the crescent roll (not like a typical crescent roll up … bring sides up and seal the marshmallow tightly inside - this is important, if you don't get it sealed up good the marshmallow runs out). This represents the wrapping of Jesus’ body after death.
Place in a 350 degree for 10–12 minutes. The oven represents the tomb – pretend like the minutes are three days! Once the rolls cool slightly, the children can open their rolls (cloth) and discover that Jesus is no longer there, HE IS RISEN! The marshmallow melts and the crescent roll is puffed up, but empty.

Given the insane imaginations of most kids (judging from mine), this would just be wayyyy too confusing. And the butter represents the oils of embalming? We're teaching our kids that? And the marshmallow doesn't disappear, it melts.

You think I'm taking this too seriously now, well, don't come crying to me when your kid grows up confusing the Last Supper with the Resurrection. "He said, 'This is my body,' and turned into a marshmallow ..."

Sorry for those who like this ... but for this old heathen, this is just too blasphemous. Taking what is to many Christians the most sacred story and turning it into a ready-to-eat-treat?

And for those without kids, who think I made this up ... nope. It's a popular Sunday school project for this time of year.

Sounds delicious, though.

Monday, April 10, 2006

Eek! Time for a laugh!

Oops. Just saw the headline of my last post, and realized that if one was quickly scanning bloglines or some such, it would be easy to interpret it as she *had* passed over, as in death, rather than *is* passed over, as in Passover. Much apologies to anyone who might have had a whisper of consternation.

Yet again I am reminded that even in Very Serious Situations, there is humor. Like last week, when Little Warrior was still in ICU. She didn't get to breastfeed for 4 days. For those not familiar with the whole nursing scenario, if you don't milk the cow (or the mama), the udders, they dry up. I could just imagine Little Warrior: "I go through all that, I get my abdomen sliced side to side, chunks of my organs removed, and you let all my milk go away???"

So, I was trotting up to the 4th floor at the hospital, which holds a "Milk Bank," which is a place where you can get some privacy and pump your breasts, then they freeze your milk. They have a lot of preemies at the hospital, so often the moms will do this, then the doctors request some of the breastmilk to feed their baby via ng tube.

So a nurse sees me one of the days and says, "Oh, Lizard Eater, your baby hasn't been getting milk, right?" That's right, sez I. "Not now, and maybe not ever."

Her face goes white and her eyes widen.

"No, no, no!" I hurriedly assure her. "I mean, she might go straight to the breast, and won't drink any of the expressed milk."

She looked very relieved.

You gotta watch what you say, in trying times, as Ari Fleischer told us. My father would say the same thing. (sound effects as we go backward in time ...)

It was the week before I was to be married. I was picking up my wedding dress and driving to my parents' home when I had a blow-out. This being before cell phones, I hiked to the nearest place of business, which happened to be a funeral home, where I proceeded to call my mother and let her know what happened.

She called my father at work. Her exact words were, according to my father:

"LE was in a car accident. You don't have to do anything. I have it all under control. She's at the Klein Funeral Home."


Happily, I can report that my father did not have a heart attack then and there on the spot.

She is Passed Over

Results are in.

Histology: Favorable (not anaplastic), all the way through
Margins: Clear
Mom: Happy happy happy

And a little bit ... afraid to be so happy. Pretty normal, I imagine.

Looks like she'll complete her chemo protocol, so she'll have 12-15 more weeks.

Hopefully, in June, we can learn more about the whole heart condition and whether it is related to having giant tumors pushing everything up into her chest. Everyone except the cardiologist thinks they're related. Of course, he's the specialist. Acting quite squirrely, though. On one hand, acting as if everything is very dire. On the other hand, he doesn't send anyone from cardiology to check on her during or after the surgery.


Anyway, one thing at a time.

And if you think I'm not thinking of the symbolism of this week being Passover ...

Saturday, April 08, 2006

Prisoner of Chillon

We are home. It feels really, really good.

As I was packing up at the hospital yesterday, I had the startling realization that if everything goes the way we'd like ... cancer beat, no infections, etc ... M-- might not be in a hospital room again until she's having her own baby, or some such.

That was thrilling.

When I left the room, and turned back to look and make sure I wasn't leaving anything -- I found myself taking a little moment to memorize the room in my head.

This morning, the memory of that makes me think of a poem I memorized in high school. The Prisoner of Chillon by Lord Byron.

"And thus when they appear'd at last,
And all my bonds aside were cast,
These heavy walls to me had grown
A hermitage -- and all my own!
And half I felt as they were come
To tear me from a second home ...
My very chains and I grew friends,
So much a long communion tends
To make us what we are: -- even I
Regain'd my freedom with a sigh."

Thursday, April 06, 2006

One Week

A week ago right now, 11:30ish pm, I was cold with fear. I was packing up a few last items for our trip to the hospital for Little Warrior's surgery. Though I tried not to, I would gaze at her, wondering if she would be returning home.

Tonight, I gaze at her in her hospital bed, filled with gratitude. Her abdomen is smooth and slender. Her color is good. She spent most of this evening laughing at me, as we played tent under the covers, "hat monster" (don't ask), and just looking at each other and being made happy by the other's face. I thanked her for coming back to me.

Tonight, I pack up a few last items because we will hopefully return home tomorrow. This journey is far from over ... there are histology reports, CT scans, post-op chemo and maybe post-op radiation in our future.

But there's a future.

Friday, almost a week ago, I went to the hospital chapel after having to hand over my baby into the anesthesiologist's arms, not knowing when, or if, I would hold her again.

In the little chapel, with The Husband, I sobbed. I couldn't stop. Finally, compelled by some deep longing inside me, I dropped to my knees in what can only be referred to as supplication. Please, I begged. That was the only word that cried out from my heart. Please.

Later, I can analyze why and what. Tonight, "please" has been replaced with "thank you." Tonight, it doesn't matter to whom -- or what -- those words are directed.

I am profoundly grateful.

Wednesday, April 05, 2006

"Everything happens for a reason"


I know there are some people who very firmly believe in this principle. If you are one of these fine folks, you are welcome to it. I, however, do not share your belief.

Not sharing someone's belief in this core philosophy is akin to saying you don't like scrapple. "Oh, but you haven't had my scrapple," they say knowingly. Surely, if you eat their scrapple or listen to their testimony about how something awful happened to them, but in the end, it led to something good, surely then you will change your mind.

I am sure that I have been guilty of such things. Not saying that everything happens for a reason ... I had a brother who committed suicide two days before my 10th birthday, when he was 23. That kind of knocks those arguments right out of you.

But definitely, I can look back at many times in my life when something appeared to be bad, but it led to something good. Losing a job only to get a better one, wanting one thing, but getting something more right. And I know I have used these situations as examples to why someone shouldn't worry about their misfortune, but should be open to it being the start of something good.

But some things don't happen for a reason.

Okay, now that I have made myself perfectly clear on that point, I will now say that when one is in a situation -- any situation -- I think you should learn what you can, whether it's never order shrimp tacos in a roadside diner in Kansas or any of the many, myriad lessons from Little Warrior's battle with the big C.

Here's one such lesson. A huge "aha" moment for me.

Like many people, I have said, "Oh, you are so special, I could never do that," when referring to someone working in a potentially high-grief job. Hospice chaplain, pediatric cancer nurse, etc.

Aha moment this week: what an incredibly selfish thing to say.

Little Warrior's surgeon is apparently very good, very gifted. I say this not merely based on our experience, but also on all the comments I've heard about him.

So, what if he had decided, Oh God, I can't be a pediatric surgeon. It's too heartrending. It would eat me up.

She might not be alive. Or she might be on dialysis. Or, or, or ...

Each of us has a gift to give to the world. If it turns out that your gift involves ministering to dying patients, or working with sick children, or helping the incarcerated, then how can you say, "I can't. It's too painful."?

You can't. You have to get over it and get to it. Because you're the only person who can give the world your gift.

And if you think I'm preaching to myself, you're completely correct.

Tuesday, April 04, 2006

Just a boring happy day in the hospital

Got into a room last night. We are back on the oncology floor. Ah, it feels like home. Amazing the difference in attitude being on the oncology floor after what looks like a successful surgery versus when being diagnosed.

Little Warrior is nursing, pooping, and doing all the things you want a 10 month old to do. Right now, she is holding onto the ribbon on a balloon K- brought. "It's my balloon and you can't have it." She is adorable, and all the nurses keep coming 'round to see the cutie. They don't get many babies on the oncology floor.

The Husband is off finding a wifi signal at Starbucks so he can email some work in. Tomorrow, he goes back to work, staying at home in the evenings. So, Little Warrior and I will be by ourselves here, which is fine.

Monday, April 03, 2006

"I can't complain, but sometimes I still do." - Joe Walsh

Amazing how ungrateful we humans can be. Or maybe it's just me. Little Warrior is still in the ICU, not because of anything going wrong, but because they can't find a bed for her elsewhere in the hospital. So, we're cramped up next to two other beds, very loud, staff hollering down the room at each other (not "stat, important stuff!" but "hey, girl, do you want Popeyes for lunch or McDonalds?") and I'm irritated.

Taking a cue from "supposedly this is good therapy" ... my gratefuls:

a) we have a bed in the ICU, in a wonderful hospital
b) I have a husband who can be here with me and trade out sleep time
c) I got 5 hours of sleep last night
d) we can afford all this .. or at least have the means to fake it
e) I have so many great friends sending us love
f) We have wonderful parents who are watching our other kids so we don't even have to worry about them
g) There's a library with a computer so I can vent all this
h) Our wonderful, wonderful little girl is alive.

Okay. Time to hit the milk bank and pump. Good humor is restored.

Sunday, April 02, 2006

...and the details

Removed: 1 grapefruit size tumor from the right kidney, 1 orange size from the left. My daughter, the fruit basket.

Kept: 2/3 of her right kidney and between 1/2 - 2/3 of her left. This was more than we hoped for. They did the right side first, and when they came back and said they saved 2/3 of it, we cried with joy, knowing that even if they had to completely remove the left side, the 2/3 could be enough. When they came out 3 hours later and reported how much they saved on the left side, we were so jubilant. No level of happiness higher.

"... my cup runneth over ..."

She's in ICU right now, but doing great. Off the oxygen, draining nicely, kidneys working fine. We might be moved to the oncology floor today, I hope I hope I hope. (No beds/privacy/etc in ICU for the parents). We managed to get a Ronald McDonald room last night and let me tell you, it's amazing what a new person you are after 5 hours sleep and a shower.

We will have hurdles to climb ... namely, getting the full report after they completely analyze the tumors. But we are so, so, so happy right now.

Anne, ready to pass that juju on to you, luv.


Blue Skies

Blue skies
Smiling on me
Nothing but blue skies
Do I see

Blue days
All of them gone
Nothing but blue skies
From now on.