Wednesday, January 14, 2015

The Roller Coaster

Yesterday was one of those days where you go from extreme to extreme. Elation to depression, in a matter of seconds. That's fairly typical for a cancer parent.

Two days ago, it had been fairly clear that we'd be discharged either yesterday or today. So yesterday morning, I told the doctor who did rounds that Adi's brother was having a birthday party yesterday afternoon, so we really wanted him to be at home, and ultimately she agreed that instead of a day in hospital with no antibiotics (that is, just for observation), she'd let us go home. But she couldn't possibly remove his PICC-line, because, "What if he needs it?"

"You realize it's about to come out on its own, right?"

"If you want to go home today, I'm not removing the PICC-line."

I said fine. And then I went upstairs to oncology to tell our doctor and have him remove the line, because, DUH. Anyway, I was in a great mood when I got upstairs, and then I saw my friend who told me that she was waiting for bone marrow results for her son, and she'd been a wreck, especially after what happened to T, another child on the ward.

"How is T?" I asked, and she looked at me.

"You didn't know?"

"I mean, I know he relapsed, but I..."

"Saturday night," she said, and it was like a kick in the stomach. Again. Again. Again. Because T. was a kid who was ALIVE. Who was ALWAYS talking, always running around, always smiling, always laughing. Always kind, always going.

"I thought you knew," my friend said helplessly, and I couldn't make my mouth say all the words inside me, and I think I said something, but all I could think was, "I need my husband. I need Guy," because it hurt so much in that instant, and in the middle of being so happy and excited that Adi was going home, I just wanted to curl up on the floor and cry.

And the oncologist took out Adi's PICC-line, because DUH, and we went home, and Yoni had an amazing birthday party and Guy broke the Internet in our house and Adi was home and everything was great and I couldn't stop smiling at the party and when Mambo Number 5 came on, I danced(because DUH), much to the embarrassment of my children, and everything was wonderful, and then I remembered and it was like a kick in the stomach. Again.

And this is how it is. Because as happy as we are, there is always a tiny screaming terror in the back somewhere that we can ignore a lot of the time, maybe even most of the time, but it's there, and it's waiting, just waiting, to kick me in the stomach. Again.


Wednesday, December 24, 2014

Epistle: To Adi, On the Occasion of the Final Day of Active Treatment

Dear Adi,

Before. Note the belly. That's gone now.

Whoa. It's been a long 16 months. Only twice as long as the oncologists told us it would take!

Right after diagnosis, before the port was put in.


I mean, let's not get TOO excited. Sure, today you had your last dose of active treatment chemo, but it's not like the road ahead is going to be easy, or, you know, WITHOUT CHEMO. We've still got those six intrathecals to look forward to, after all. And there's the oral chemo you'll be taking for the next year or so, which, YAY, oral chemo!

Home after the first hospital stay. 


Everywhere Adi goes, Yuval goes. 
But, indeed, there is cause for celebration, because WE FINISHED ACTIVE TREATMENT. That's kind of a big deal, and the weirdest thing is that you're not even here today. You're off having a grand old time in Eilat, with your peeps, 119 kids with cancer and 100 counselors and a whole bunch of support staff making sure your every need is met.
What my kid does on vacation.
Not at all disturbing.

You've been out of school for 16 months. And yet, you've learned an enormous amount. You've learned to deal with situations that are beyond your control. You've learned that on days with abdominal ultrasounds or CTs or intrathecals or any of a host of other tests, you need to be fasting -- and you even understand why. You know the meds you take, in what form, and you know instantly if something has been changed. You know how to share a room with someone else, you know that sometimes we can't go to the playroom, that sometimes you need to throw up, and that soon you'll be better.

So tired. Just want sleep.

Eff this... stuff... is what I think you're trying to say here. 


Because what kid doesn't dream about being the garbage truck man???
You know that soon you'll have surgery to fix your stoma. (I am personally quite excited about that one, because you don't know how to do laundry, so that task falls to me. There's a lot of it.)
You know that soon you'll go back to school. After SIXTEEN MONTHS. This should be... interesting. I think you'll be happy to be back in your misgeret, back to your regularly scheduled program, as it were. We've got a lot of work ahead of us, but you've never been afraid of a little hard work. You may object to it, often loudly, but you've never been afraid of it.

I will walk with my pole BY MYSELF. 

The very fact of your existence at this moment is miraculous. Truly -- medical science can't explain how you survived multiple bouts of septic shock, two bowel perforations and two bowel obstructions, methotrexate toxicity, anaphylaxis brought on by PEG Asparginase, and I'm sure I'm forgetting something else. Amazing how you can lose count of your kid's near death experiences.
As long as there's cake, it's all good. 
Or Belgian waffles. That works, too. 
You are my hero. You and your smile -- you are amazing. I love you. So much.













I love all of these pictures too much to choose one.
Love,
Mommy















































Monday, December 22, 2014

Epistle: To Lior, Because the Words Are Spilling Out of Me

Dear Liorie,

Eleven years ago, when Adi was in the NICU, I was terrified. I had no idea what was wrong with my baby, this new creature I hardly knew. I didn't know if he would survive. I didn't know if he would live, only to be afflicted by horrific disabilities. I didn't know what was wrong, or what the future held. And I was equally terrified that one day, you would come to me accusingly and tell me, "It's NOT FAIR that I" -- and here, I didn't know what, exactly, would come, but it would be something, and it would be because of this other child, and it terrified me, because I knew you would be right.



You were the first to be mine, and for a time you were the only one to be mine, and you are always mine. It is always you.



I think I imagined myself bravely heroic in these discussions, holding back my tears as I let you shed yours, allowing you the space to resent your sibling's special needs while respecting him.

I think I wasn't very smart then.



You have never thrown Adi's disabilities, or his leukemia, at me in anger. You have been the graceful one, doing what is needed, often setting your own needs aside. This is not to say that you have never railed against the unfairness of this mortal coil, but you have always done so in reasonably good spirits.



Some years ago, I was terribly angry with you and your sister. Honestly, I don't remember the actual incident, but I do remember writing the post. I remember how awful I felt, listening to you and your sister going on and on about how horrible we were.



One day in the future, I'm sure I will see this post, and I won't remember The Math Test Which Shall Not Be Mentioned and The Incident of the Text Message and the other many, many difficulties of these, your teenage years, but I will remember how much it hurt every time we had to reprimand you. Every time we had to take something away, to say no, to remind you to study. I will remember how I had no idea how to tell you how very much I love you and that I am NOT KIDDING when I say that it hurts me more than it hurts you to study for that test and to do that thing and to not do that other thing. I will remember how it caused me physical pain when you wouldn't answer my "Good morning," because your righteous anger burns in you.



Oh, you are so very clearly my daughter.

You were the first to be mine, and for a time you were the only one to be mine, and you are always mine. It is always you.



You are so wise beyond your years, and sometimes all I want to do is protect you from the cold, hard truths of the world. I want to prevent all the mistakes you will make -- you will make them, it's inevitable -- but I want to spare you the pain of making them, as impossible as that is. I want to just give you all the answers now. But it doesn't work like that. You have to forge your own path, to make your own mistakes, and to learn in your own time.



We will survive these tumultuous teenage years, I know that we will. And I know that if this is the worst -- these mornings of stormy silence, these evenings of bitter tears -- that we are very, very lucky. Even if right now you think I am the most horrible person in the world, and not very smart, to boot, we are very, very lucky.



I love you so much. I can't find words to tell you how much I love you and how amazing I think you are.



Love,
Mommy
























Wednesday, December 03, 2014

Yesterday

Yesterday was one of those days that, while things are happening, you can already imagine telling people the story afterwards. You know how you'll sound, where you'll roll your eyes, where your audience will laugh, everything. But it was also one of those days where you just keep saying OH MY GOD MAKE IT STOP MAKE IT BE OVER HOLY CRAP I CANNOT TAKE ONE MORE THING.

It started Monday night, when Adi spiked a fever after two days of Ara-C. Not unexpected, as Ara-C is known to cause fevers. But it meant a trip to the ER, nonetheless. And then, out of nowhere, suddenly Adi was in pain. Stomach pain. And since we've been down that road before, I knew immediately that we weren't going to be getting IV antibiotics and going home.

We were admitted, even though the x-ray showed nothing, because with Adi's history, you don't mess around.

Tuesday morning, we had another abdominal x-ray and an ultrasound. The ultrasound showed "something," but to get more clarity, we'd need a CT. With contrast. So Adi drank a litre of contrast dye, and then they put in a peripheral line for the contrast material (it clogs picc lines), and off we went. (Well, actually, we waited hours and hours, and then off we went.)

They gave Adi propofol and sent me out of the room. And then I suddenly realized it had been 25 minutes, and WHAT THE HECK WERE THEY DOING IN THERE???? So I went over to the door and heard Adi SCREAMING, and then the doctor opened the door and said, "It's okay, we had technical difficulties."

Um, what now?

Well, they started putting in the contrast material, and the peripheral line burst. And then when they tried to use the picc line? It tore. But no problem, because he was already out, so they could put in a new peripheral line, right? Except that when they stuck him, HE WOKE UP, and I wasn't in the room, and he was NOT HAPPY, and then the stoma just started leaking poop everywhere, and then he started screaming. But somehow, they had gotten the CT done, the doctor told me.

Except that, of course, it was inconclusive, and so Adi had to drink another litre of contrast dye, although this time they did the CT without propofol, and then they told us that Adi has an infection in his bowel. Of course he does.

So, he remains NPO, on antibiotics, inpatient, until further notice.


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