Monday, November 10, 2014

Epistle: To Shir, on the Occasion of Seeing Your Smile

Shir Shironet,

Oh, Shir. Where to start? You live in a world of extremes. Things are always wonderful or terrible, and usually both together. Nothing is ordinary. "It actually turns out that Monday is my favorite day of the week," you just told me. "Which is really weird."I asked why Mondays are good. "Because we end at 3:00," you answered. (That's early.) "And we have two hours of algebra and two hours of science." And that's good? "Yes," you assured me. "I'm really good at algebra."



Most days when you come home, you announce that you're about to die, that it was the most terrible day ever in the history of days, but GUESS WHAT? And then you tell me about some AMAZING WONDERFUL STUPENDOUS thing that happened, often involving cake.



"It was the worst day of my life, but it was great," you say, with absolutely no irony whatsoever. It is a gift, your zest for life, it is a gift that I hope you treasure.



You are the second child in the family, but you have carved out a distinct spot for yourself. The walls of your room are covered with pictures you've drawn or clipped from magazines. Sadly, you have also taken marker and spray paint to much of your furniture, but we're working on slightly tempering your artistic tendencies. You are incredibly social, and you are always looking for ways to earn money so that you can immediately spend it (often on cake. Or candy.).



You are quick to point out the unfairness of life. Any slight, real or imagined, is immediately magnified, dissected, and held up as an example of why you must have been somehow taken from your real family -- royalty, natch -- and left with... us.



Music is such an integral part of who you are, obviously. It's right there in your name, and you are nearly always listening to some song, singing something, bobbing your head, or talking about how this or that song or singer is the most amazing, but you're going to have to kill him or her but it's fantastic, but it's so horrible.



This is you, Shir, a study in contradictions. And I hope that you never change.



I love you.

Love,
Mommy


















Thursday, November 06, 2014

Epistle: To Yoni, On the Occasion Of Being Called Into Your School

Dear Yoni,

So, like a week and a half ago, your guidance counselor called and asked how things were going.

"Um, fine? I mean, we're at home, and we're starting the last round of treatment soon, and everything's good, and Yoni's been really happy, and blah blah..."



After a few minutes, I realized she wasn't saying anything.

"Was there... something you wanted to talk about?"

"Well, yes. There have been some... incidents."

"What?"

"Just some... we feel that... Yoni is having trouble being his best self."



I pressed her for details, Yon-yon, but she didn't give me any. Instead, she asked to meet with me and Daddy, and we talked about something towards the end of this week, but then a few days later she called and said that the meeting would be Sunday morning at 8am.

That day, when you came home, I asked if something had happened at school.



"It wasn't my fault," you said. And slowly, you told a somewhat horrifying story about a science experiment using acid and rocks and how another student took acid on his eraser and put it on your shirt and so you had NO CHOICE but to do the same thing back to him, and Yoni, I must confess that I was pretty certain we were rearing a serial killer. ACID??? REALLY??? That's why, when you told me about the goodbye party for the substitute teacher, and you told me that even though THE WHOLE SCHOOL KNOWS that you HATE chocolate, two girls announced that they were making chocolate balls, and so maybe I could make meringue cookies, THAT'S why I said yes. Because I figured that then, years later, when your serial killer nature revealed itself and inevitably the media blamed your mother, I could tell them that I MADE THE COOKIES.



So then it was Sunday morning, and we came into the meeting, and basically what they told us was that you, Yoni, are awesome, and we, your parents, are NOT SUPPORTING YOU ENOUGH IN YOUR AWESOMENESS.



Apparently, twice last year there were these projects that they deliberately assigned you so that you could stand up in front of the class and present them, becuase you LOVE presenting, and then you came home and told us you needed to do these projects and we were like, "Oh, Yoni, we can't get you any supplies or help at all because we are SO TIRED and YOUR BROTHER HAS CANCER," and you went back to school and told your teacher that you were sorry, but your parents could not help you and you could not do these projects, and they wanted to make sure that, you know, we stopped dropping the ball. WE, not YOU. You, Yoni, you are AWESOME. It's just that your parents kind of suck lately.



So,Yoni, this is my way of saying that I am sorry. I am sorry that you have been getting short shrift. This has been happening for basically your whole life, so you're probably not even fazed by it, but it's not okay. I'm sorry that I have not been good enough. I promise to try to be better, because you deserve better.

I love you.

Love,
Mommy













Wednesday, November 05, 2014

Epistle: To Amit, on the Occasion of Many Occasions Having Passed with No Letter

Dear Amit,

Dude, you got a raw deal. You're the youngest, so it's rare for you to get anything new (although kudos on the new Spiderman sheets!), plus your parents have been incredibly distracted for, like, most of your life, AND you have yet to spend 2 years in the same gan. So, happy therapy, kid.


I remember when you were born. It was kind of amazing. And that shabbat is right up there as one of my all-time favorites ever.

And now you are five. FIVE. (And a half, you tell everyone, which is almost true at this point, but you've been telling people you're five and a half since the day after your birthday.) And you are FUNNY.

"Amit, how was your day?"

"ASK ME IN HEBREW."

And the way you pronounce "r" in English, with your little Israeli accent that makes it come out somewhere towards the back of your throat but not quite resh, oh, it's priceless. "Purrrrrrple." Yum.

You are terrified of the dark, and of being alone, and apparently, that if you get water in your ear you will be deaf. You are crazy about your big brother Yoni. You love your Legos. You are full of energy and excitement, and you make me laugh, even as I realize that I should actually be punishing you. Can't do it. You're too cute.

You cannot figure out which way your shoes go on your feet, you love your new jacket, you love when I read you The Day the Crayons Quit, and you love to hear Adi tell you No, David.


You love gum and junk food. Regular food is not so much your thing, but you seem to sustain yourself fairly well on junk.

Today, while we were driving home, you wanted Daddy to put a video on his phone for you. But Daddy was driving, so he couldn't. So you said, "Daddy, I don't understand why you can't stop for a minute and put me the video!" Because, really, what mattered here? Getting home, or your video? Clearly, our priorities were wrong.


Apparently, your Chanuka wish is for headphones that go over your ears, since you can't use the kind that go in your ears. Bless.

Amit, you are awesome. I hope you know how awesome we think you are.



Love,

Mommy

Tuesday, November 04, 2014

The Day After

If you didn't know that Adi had treatment yesterday, you might not notice the difference today. But the signs are there.

When he came home yesterday -- well after 6 pm -- he was exhausted. He barely made it to the sofa before his eyes were closed. We had to wake him for meds, and to get him upstairs, and then again for his steroids. It wasn't easy, but we got him to take everything he needed.

This morning, he was up early (thanks, steroids!), and hungry (again: THANKS SO MUCH DEXA).  He was also kind of irritated, (GUESS WHY?), banging cabinets and slamming doors. He made himself some toast (charred, thanks), and slathered it in peanut butter and chocolate spread. Hey, that'll go great with our low-salt, low-sugar diet! Woohoo! (We get a free pass: Adi is allowed to eat what he wants on steroids, but he's not supposed to have drinks with sugar in them. We treat with insulin if necessary.) (It will probably be necessary.)

By 8:30 am, Adi was ready for lunch, and he had very specific ideas about where we should go. Unfortonutely for Adi, every restaurant he mentioned was (a) closed, and (b) I may have told him that all of those places are currently undergoing renovations. I'm just saying, it may have happened.

By 9:15, Adi had decided that he was going to need a toy from the toy store. Yoni needs long-sleeved school shirts, and the two stores are next to each other, so off we went. Adi chose a tool set for 70 NIS (about $20), and I got Yoni's shirts. On the way home, Adi sang, "CAN I FIX IT? YES I CAN!" at full volume. He's already jittery from the steroids, moving from place to place in the house, fixing things, racing from the computer to the iPad to the stairs, outside, then back to the fridge.

Currently, he's taking care of his dolls, telling them that he's right there, and everything is okay.

Also, every time I go upstairs to switch the laundry, I return to find another bag of snack food has been opened and eaten.

So, yeah, the signs are there.


Monday, November 03, 2014

The Trauma of the End of Treatment

So, today marks the start of our last round of active treatment. In four (or, you know, eight or twelve) weeks, we will move on to Maintenance. Our lives will return to some semblance of normal.

But that's the thing. I've kind of known for a long time that normal -- if it ever were a part of our particular plan -- is no longer in the cards. First of all, maintenance doesn't mean home free. Adi will still be having intrathecals, he'll still be taking oral chemotherapy at home, and he'll still be in the clinic every two weeks for bloodwork. His stomach will still be horribly scarred from his half-dozen surgeries. And our hearts? Oh, our hearts.

So many things cannot be unseen, cannot be unheard, cannot be unknown. Too many names jump out at me and make my heart twinge, hurt, ache. Fevers will still send us to the emergency room, bruises on my son's body will still make us panic.

But the thing is, people won't expect us to panic. People will start to expect us to return to normal. People will start to expect things from us. When the list goes up at the gan and all the parents are asked to fill in what they'll bring -- a cake, a quiche, a fruit platter -- I won't be able to just ignore it and shrug my shoulders. When the school calls, they won't use that tone, the one that says, "We know. We understand that it's impossible to expect you to show up to this conference about your future serial killer child. We'll just handle it on our own." They'll get annoyed. They won't let me reschedule endlessly. When my kid forgets his homework three days in a row, there will be consequences.

There's no switch to flip that takes you back to normal, is the thing. It takes time to get there, and sometimes you never quite make it all the way. You get close, close enough to an approximation of normal that you can fake it in your daily life, and only the people who know you well can tell the difference. Only the people who know you well can see that you don't quite smile the same way. Your laugh is a little different. You're just a tiny bit altered, but that tiny bit is the part that contained the essence of carefree happiness, and that's gone.

"You forget," people told us. "You forget what it was like, you forget the names of the drugs, you forget the nurses."

I'm not sure that's the case. Maybe for the lucky few, it is. Maybe there are families who come in, get treatment, and move on. But a family like ours, a family that was already scarred, comes to treatment already wary. Trust no one, we think, even when we don't realize we're thinking it. It won't be as easy as they say.

And so we emerge, blinking, into the overly bright light of day. We reach for our sunglasses so that no one will notice that sometimes we still cry. We make sure things look okay from the outside so that no one suspects that something at our very core may be rotten.

We create an approximation of normal that is close enough to pass most of the time.

But the scars are still there.

Sunday, November 02, 2014

Information Overload

Way back when we started this whole cancer thing, Adi was what they call a "prednisone-poor responder." When ALL is first diagnosed, children start a regimen of steroids -- prednisone, to be precise. The goal of the steroids are to break up the blasts (the bad cells) and get the number down from whatever astronomically high starting point you're at to under 1000 blasts by Day 8. Our Day 8 results were not great. This put us on the path to High Risk treatment, which was then confirmed by Adi's fairly abysmal Day 15 results.

Those were some good times.


So, anyway, we've been on the High Risk path, which means that treatment is longer and more aggressive. And part of that treatment was supposed to be cranial radiation.

We were never thrilled with the idea of, you know, shooting radiation into Adi's brain. And then we went through all this horrific stuff like seizures and PRES, and there were MRIs of Adi's brain, and they told us there was damage, but they didn't know if the damage was permanent or reversible or what would happen. They just couldn't say. 

Adi was supposed to have his cranial radiation over 8 days during his first interim maintenance period. But because he had emergency surgery and then went on vacation after recovering, his oncologist agreed to push the radiation to the second IM break. And then as we approached that break, another doctor from his team said that maybe we wouldn't do the radiation, but then the first oncologist heard about that and said, WHAT THE SUDDENLY (this is a direct translation of a Hebrew phrase which would be better translated as WHAT THE HELL, but you probably figured that out.), and said OH YES YOU WILL DO CRANIAL RADIATION, but then we did ANOTHER MRI of Adi's brain and GUESS WHAT??? There is STILL damage from the PRES and again a different oncologist said NO RADIATION and this time the first oncologist basically said FINE DO WHATEVER YOU WANT.

It was... a little disconcerting. 

At the same time, another family talked to us, because their daughter has T-Cell ALL AND she had PRES, and terrible neurologic reactions to chemotherapy, and although the doctors originally told them NO RADIATION, now they were suddenly saying YES RADIATION, and it's a little bit disturbing when that happens. 

So they went and talked to the head of the radiation place, who told them NO WAY RADIATION and then they spoke to two other senior oncologists, who BOTH said NO NO NO NO NO RADIATION, and so it looks like neither kid is getting cranial radiation, and it's one of those things where you say, OK, I really hope that by PRESERVING YOUR BRAIN FUNCTION I am not inviting the cancer cells to HAVE A PARTY IN YOUR BRAIN. 

***

Tomorrow, we start what is supposed to be our last round of chemotherapy. A little Vincristine/Doxo, a little ARA-C, some intrathecals, it's gonna be a blast. It's supposed to take 4 weeks and be outpatient. And I know I'm supposed to be optimistic, but really. We have NEVER done this in 4 weeks as outpatients. So, wish us luck. 

Saturday, November 01, 2014

Birthday Blues, Redux

So, last year, Adi's birthday did not turn out the way I wanted. This year, I was determined that things would be different.

We've been at home for the past month, enjoying interim maintenance. Adi has been feeling pretty good, so we figured that it was best to take advantage of that and celebrate. And that's what we did.

I may have mentioned once or twice that Adi loves garbage trucks. Everyone who knows Adi knows this. And so, a couple of our volunteers started making calls. They got in touch with the city council and arranged for Adi to do a ride along with them. They tracked down our oncologist and got permission. They went out and got Adi a neon green vest -- JUST LIKE A REAL GARBAGE MAN. And then they showed up at our house.


This is... for me?



Getting instructions....



I'm the garbage man!!!




I can push the button?




I'M DOING IT!!!



Riding on the back of the truck.


That was great!!!!

But that is not all we can do, said the cat. Oh, no. That is not all, said the Cat in the Hat. 

Because then Adi's teacher called and asked if she could bring his class over for a birthday party. And that's what she did. She brought 8 of the nine kids in his class (one had pneumonia and couldn't come), and games and gifts and balloons and cake and snacks and it was AMAZING.


Everybody got to see Adi's room. 


Hanging out


Making his friends laugh


OH MY GOD I LOVE THIS KID.


Balloons!


CAKE! WITH A CAR!!!


Just chilling. 


What's a party without snacks?


Opening his gift -- a shirt with a picture of the class on the front and "We love you Adi" on the back!


Wearing his new shirt.

It was an AMAZING birthday. Everything I could have hoped for. And Adi's smile shows it all.