CATITUDE:

Finding friendship and community online and IRL

by Lindsay Ballantyne

When people ask for a History of Catitude, it’s hard to pinpoint what’s important to share, and even more difficult to figure out the time line of events. Our paths crossed in a lot of different ways before we all came together. Many met in the chat rooms that accompanied live shows run by the Vlogbrothers or the Harry Potter Alliance on a site called BlogTV The Vlogbrothers BlogTV chat was also used in its off hours as a meeting place for enthusiasts of This is Not Tom, a series of online puzzles interwoven with a mysterious story written by John Green.

In April of 2009, a few of us took part in an event spearheaded by author Maureen Johnson called Blog Every Day in April (BEDA) and were matched up by Maureen as “BEDA buddies,” giving us a support system to get through the month. Other to-be Cats watched the Scripps National Spelling Bee together in May, and the enthusiasm from that event has carried on in annual viewing parties. We were all pretty prolific on Twitter and would have pages of conversation in messages of 140 characters or less.

BEDA is where it all started for me. We had created a Skype chat that was meant for brainstorming blog ideas but it ended up as a shared stream of consciousness. When BEDA ended and our chatting slowed down a bit, Arka mentioned he’d been talking with another girl he thought we’d like—Esther. A new chat was formed so that we could talk with Esther, and we never looked back.

When I first met Esther she was so well spoken, thoughtful, and kind. I thought she was too wise to be my age, so imagine my surprise when I discovered that at fourteen (“almost fifteen!”) she was five years my junior. When I met the rest of Catitude it was the same story. I quickly learned that my age gauge would never be accurate when it came to this extraordinary group of people. Not long into our collective friendship, Esther said, “I feel as though we’re all the same age. I don’t know what age that is, but yeah.” It was true. We could go from debating which would be better to eat, chocolate-flavored poop or poop-flavored chocolate, if you had to choose one (a dispute that has lasted years and proved to be our most controversial discussion), to sharing our deepest thoughts and desires without missing a step.

Very early on we discovered that Valerie was a Harry Potter virgin. Because many of us had first met through our involvement in the Harry Potter fan community, we felt it was our civic duty to correct this. It was the first time many of us had spoken, and so as virtual strangers we organized “Operation HP Valerie.” Our mission: get Valerie to read Harry Potter by annotating the books and mailing them around the country. Two or three people were assigned to each book and we kept track of it all in a very complicated spreadsheet (a time-honored Catitude tradition).

There were countless chats in early- to mid-2009 that frequently evolved to suit the current need, but it’s generally agreed upon that Catitude as we now know it shares its birthday with Esther. The day she turned fifteen coincided with her return from a weeklong vacation without Internet, so we gathered as many friends as we could, including anyone who may have known Esther even tangentially, into a massive celebratory Skype chat.

from JULIAN GOMEZ

“Esther, I remember I met you on the day of your birthday, which was basically the inception of what Cat-i-tude is now. We had a party for you on Skype and the first impression I had of you is ‘I really want to be her friend.’ I’m so happy we became good friends.”

Excerpt from “Birthday Chat”

8/4/09

[11:12:20 PM] JULIAN GOMEZ: Why did no one tell me about this collab thing?

[11:12:27 PM] ARIELLE LINDSEY ROBERTS: *finally playing truth of fail*

[11:12:28 PM] LINDSAY: teryn organized it

[11:12:30 PM] ARIELLE LINDSEY ROBERTS: Teryn organized it

[11:12:36 PM] ESTHER: TWINS

[11:12:37 PM] KATIE TWYMAN: TERYN FAIL. D:<

[11:12:38 PM] LINDSAY: she said she DMed everyone in the chat

[11:12:39 PM] BLAZE MITTEFF: #blameteryn

[11:12:44 PM] JULIAN GOMEZ: Oh, Teryn hates me apparantly

[11:12:44 PM] ESTHER: hahahha

[11:13:00 PM] LINDSAY: D:

[11:13:05 PM] [MORBLES.]: I feel like I’ve been ignoring you guys >.<

[11:13:08 PM] JULIAN GOMEZ: Last DM I have is from ncacensorship

[11:13:10 PM] ARIELLE LINDSEY ROBERTS: Julian did you see my tweet to searchlight?

[11:13:15 PM] JULIAN GOMEZ: YES

[11:13:21 PM] ARIELLE LINDSEY ROBERTS: how awesome would that be?

[11:13:35 PM] JULIAN GOMEZ: Very haha

[11:13:37 PM] ARKA: holy crap how many people are in this chat?

[11:13:45 PM] VALERIE: 21!?

[11:13:46 PM] JULIAN GOMEZ: We tweeted at the same time

[11:13:49 PM] ESTHER: MANY AWESOME PEOPLE

[11:13:54 PM] [MORBLES.]: 21?!?!

[11:13:54 PM] BLAZE MITTEFF: over 9000

[11:13:59 PM] JULIAN GOMEZ: 1337

[11:14:00 PM] [MORBLES.]: I feel special

[11:14:03 PM] ARIELLE LINDSEY ROBERTS: no one comes to florida =(

[11:14:04 PM] [MORBLES.]: but lame at the same time <3

[11:14:09 PM] ESTHER: LAME?

[11:14:12 PM] BLAZE MITTEFF: I came to florida >:(

[11:14:16 PM] JULIAN GOMEZ: Sounds like a personal problem, Morgan

[11:14:19 PM] [MORBLES.]: hahahaha

[11:14:22 PM] [MORBLES.]: thanks Julian

[11:14:24 PM] ROY DUKE: I just got searchlights CD, it’s AWESOME

[11:14:28 PM] KATIE TWYMAN: LEAKYCON. FLORIDA. WINNN.

[11:14:28 PM] JULIAN GOMEZ: np <͚

[11:14:30 PM] ARIELLE LINDSEY ROBERTS: sorry correction no bands come to florida

“The Four Corners of My Life,”
QUINCY, MASSACHUSETTS, 2009

As happens with any large group, people drifted away from our carved-out corner of the Internet. The twenty-five or so who remained would come to be known as Catitude. Skype chat rooms can be given a name by anyone in the chat, and this feature was often abused by us for comedic value. It was very late at night (when we’re at our silliest) that the title was changed to “Cat-I-Tude” and the few of us online couldn’t stop laughing about it. Whenever someone would change the chat name we would change it back to Catitude. Ultimately, once John Green and Andrew Slack began referring to us collectively as Catitude, it just stuck.

You could sign onto Skype at almost any hour and someone would be there to greet you. Many of us had trouble sleeping, so we kept each other company in group calls or video conferences, playing multiplayer games online until the sun came up.

Katy said, “We were united by some common factors: a slight addiction to the Internet, a love for John and Hank Green and nerdfighteria, and we all knew Esther. She really was the lighthouse of Catitude. She created the open environment; she had this wonderful way of drawing you in, of making you feel like you were the only person who mattered.”

We talked easily and endlessly about our common obsessions, making stupid jokes that only we would find hilarious, taking quotes out of context and posting them on Twitter. Everyone was acutely aware of how Internet friendships are generally perceived and we mocked the connotation constantly. We would call each other “stalkers,” some even going so far as to write details about the group in their own “stalker notebook,” and routinely joked that one of us was actually a forty-seven-year-old man.

We watched A Very Potter Musical together, counting down in an attempt to hit play at the same moment, then cast each other in the roles of the musical. Esther and I ended up as Voldemort and Quirrell, respectively, mainly because the characters share a robe back-to-back the majority of the play and we thought our height difference would increase the hilarity. Soon after, she sent me this letter and illustrated poem:

For several months none of us knew Esther was sick. We had seen a few pictures with oxygen tubes, but whenever someone got up the courage to ask her about it she would just say she had “breathing issues.” During one of our late-night video calls I remember thinking, “How does Esther’s hair always look perfect, even at three a.m.?” It was, of course, a wig.

The Internet was one of the only places Esther could go and not be treated as Cancer Girl. Looking back, I am extremely grateful I had that time to get to know Esther, the real Esther, free from the constraints that are inevitably put on a relationship when something like cancer is thrown in the mix.

Then one night we decided we didn’t know enough personal details about each other, so we took turns posing and answering questions. This excerpt begins with Esther’s answer to the question, “What do you want to do with your life?”

9/12/2009

[10:01:19 PM] ESTHER: I’ve always been really interested in the medical field. I have a lot of health issues that have resulted in me spending a lot of time around hospitals, and curing people is such a great thing. I just don’t know if I’d be able to deal with the other side of the medicine industry, like the death and stuff. I know there are jobs that have you not have to deal with that side constantly, but yeah. not sure what I’m doing with my more obvious future.

[10:01:45 PM] KATY: what health problems have you had, Esther?:/

[10:01:54 PM] KATY: slash do you have

[10:02:02 PM] TERYN: :/

[10:02:02 PM] TERYN: I’ve been wondering myself a bit, too.

[10:02:08 PM] ESTHER: aha. long story time? I’ll probably [be] writing for a while yeah

[10:02:13 PM] TERYN: yeah, what Katy said.

[10:02:15 PM] KATY: we’re here for you lady

[10:02:25 PM] TERYN: okay well, take your time.

[10:02:26 PM] LINDSAY: yeah, i know a bit but not a lot

[10:02:27 PM] TERYN: we’re here <3

[10:05:49 PM] ESTHER: I’ve never really talked about it with internet people, so telling people things in text is kind of awkward. um, in november 2006 I was diagnosed with thyroid cancer, which is not seen like, ever, in kids. it had spread to my lungs, which was not that great. so they removed the tumor, but there was still a load of crap in my lungs, where like you can’t remove things from. so they did some treatments a few times, and it worked a bit. I was in France at that time, then in 2008 we moved back to the US, and they started me on other treatments that worked better. last christmas I had a really serious time where I was pretty seriously sick, but I’ve been improving loads. so um, my diagnosis is thyroid cancer, and it just brought on a load of other problems, which bring other problems. erm. don’t know what else to say about it but I probably didn’t give you like any information on it wohkay.

[10:05:54 PM] VALERIE: ho man

[10:05:57 PM] VALERIE: i love you guys

[10:05:58 PM] ESTHER: aha that was a lot.

[10:06:01 PM] TERYN: *reads*

[10:06:26 PM] KATY: oh Esther <3333333

[10:06:28 PM] LINDSAY: *reads esthers*

[10:07:04 PM] DESTINY: Esther <333333333

[10:07:09 PM] VALERIE: freaking heck i don’t want to go to bed now, i wanna talk with you guys

[10:07:13 PM] VALERIE: and esther <3

[10:07:18 PM] TERYN: oh Esther <33333333333333 *loves*

[10:07:20 PM] ARIELLE: esther <3

[10:07:25 PM] DESTINY: as soon as I typed in Esther, I want candy by Aaron Carter came on

[10:07:31 PM] LINDSAY: esther <33

[10:07:34 PM] ARIELLE: haha destiny

[10:07:34 PM] ESTHER: *is candy*

[10:07:41 PM] LINDSAY: oh baby

[10:08:01 PM] ESTHER: I’m totally fine talking about everything, I just don’t know how to bring it up or what to say about it.

[10:08:03 PM] KATY: I love you gusy!

[10:08:11 PM] DESTINY: same, Esther

[10:08:14 PM] TERYN: Got it, Esther.

[10:08:15 PM] LINDSAY: so are you in remission or what exactly?

[10:08:17 PM] KATY: are you gonna be ok, though, Esther?

[10:08:19 PM] LINDSAY: I LOVE YOU GUYS TOO

[10:08:21 PM] LINDSAY: SO MUCH

[10:08:23 PM] LINDSAY: gusy

[10:08:24 PM] VALERIE: gah i really really have to go now I love you all A LOT and i hope we will have more talks like this

[10:08:32 PM] KATY: WE WILL <3

[10:08:32 PM] DESTINY: aw bye Valerie!

[10:08:36 PM] VALERIE: <333333

[10:09:08 PM] ESTHER: goodnight valerie <3

[10:09:11 PM] ESTHER: I love you lots <3

[10:09:35 PM] ESTHER: oh and no, I still have cancer and probably won’t be officially cured of it. but it’s looking good, I guess. still have a lot of other things with it. don’t really know what the future is going to bring, so I tend not to really live ahead :\

[10:09:46 PM] KATY: aww Esther </3

[10:10:03 PM] TERYN: aww Esther

[10:10:06 PM] LINDSAY: esther <333

[10:10:06 PM] TERYN: *loves*

[10:10:11 PM] ESTHER: *loves back*

[10:10:11 PM] TERYN: <3

[10:10:21 PM] LINDSAY: i don’t know if i should say this but i’m totally crying right now

[10:10:22 PM] LINDSAY: </3

[10:10:23 PM] TERYN: esther you are amazing

[10:10:32 PM] ESTHER: I love you all so much.

[10:10:33 PM] LINDSAY: YOU ARE SO AMAZING

[10:10:35 PM] LINDSAY: I LOVE YOU

[10:10:35 PM] ARIELLE: yes esther you are totally amazing!

[10:10:36 PM] KATY: Lindsay, I’m close

[10:10:37 PM] KATY: </3

[10:10:44 PM] ESTHER: I’m pretty freaking close to crying

[10:10:45 PM] TERYN: I’m tearing up

[10:10:52 PM] KATY: #girly

[10:10:52 PM] ARIELLE: me too

[10:10:52 PM] ESTHER: I’m kinda shaky

[10:12:23 PM] TERYN: God Esther, I like . . . you’re awesome. That you keep going. I know that may seem sort of strange, because you didn’t really have a choice, but seriously. It makes you epic. And keep going. And I love you.

[10:12:39 PM] ESTHER: <33

[10:12:40 PM] LINDSAY: yeah

[10:12:42 PM] TERYN: <3

[10:12:55 PM] LINDSAY: esther has always been epic

[10:12:58 PM] LINDSAY: this just adds on

[10:13:04 PM] ESTHER: hahaha <3

[10:09:27 PM] ARIELLE: okay so here’s a question: Other than

nerdfighting and harry potter what is something you are really passionate about?

[10:30:18 PM] ESTHER: I haven’t found my one thing to be passionate about, but childhood cancer sucks. and I know that there are so many amazing causes that help, but going through it kind of changes the way I view things and it’s just, I don’t know. not really finding a cure, cause I don’t have the resources for that. but helping people who have to go through that feel better.

[11:00:45 PM] ARIELLE: i love you people

[11:00:50 PM] KATIE: God, seriously.

[11:00:56 PM] ESTHER: yeah, I’m so glad ALL OF YOU are here, right now, talking to me. I’ve never talked about anything with anyone from the internet that was serious, but I’m so happy for your guys <3

[11:00:58 PM] LINDSAY: i can’t stress enough how much i’m here for you guys

[11:01:08 PM] LINDSAY: like, really

[11:01:10 PM] ARKA: guys talk about something dumb for 5 minutes I have to get on the laptop

We grew closer that night. People shared their insecurities, struggles with anxiety and depression, and many of the biggest trials life had thrown their way. Our little Skype chat became more than just a place to have fun; it was a place full of unconditional love and support.

Learning of Esther’s cancer didn’t affect the group dynamic as much as one would expect. There was always that worry at the back of our minds, but Esther was really good at downplaying the situation, and we knew her well enough to think of her outside of her disease. Catitude proceeded apace, becoming even more active in our community by starting a tumblog together dedicated to showcasing the creativity and awesomeness of nerdfighteria.

Sometimes I just sit and watch the chat and everyone is so funny and intelligent and caring for one another. It’s like this truest, purest, most wonderful form of love and friendship. I don’t know. It’s just the best. And Esther was part of that. She was that. The best.

—ALYSIA KOZBIAL

I think there were a number of reasons we all immediately fell in love with this little chat we had. Obviously, a lot of the appeal was that we were all interested in similar things: we all met through various online communities like nerdfighteria, the Harry Potter Alliance, and fan forums for bands like The Mountain Goats and They Might Be Giants. The mutual interests made the initial get-to-know-you’s simple and comfortable. Still, in only a few months, we became inseparable from each other, and I think that was because of much more than common history.

It seems to me that we were each at a bit of a crossroads in our life; we all were questioning things about our lives that we may have taken for granted previously. Many of us were coping with anxiety, depression, and other mental health issues. Even more of us were making plans for college and careers, beginning to explore what adulthood might look like. With growing up comes insecurity and uncertainty. Catitude did something to put all of our minds at ease.

Catitude was important because it was exactly what we needed it to be at any given moment. We spent an inordinate amount of time making complete and utter fools of ourselves. Entire nights were spent in Skype calls, playing multiplayer games online with each other. I remember making jokes about poop, going far out of our way to make each other uncomfortable, and laughing at things like a bunch of over-sugared six-year-olds. And then there were the nights when someone showed up in the chat, obviously hurt or bothered. Everyone would stop what they were doing, and all attention would turn to the person in need. Nothing else would matter until that person was properly cared for. It was impossible—not—to trust everyone in the chat with the most vulnerable parts of yourself.

—KATIE TWYMAN

“The Arms of Catitude,”
LEAKYCON, ORLANDO, FLORIDA, 2011

I have had a lot of online friends over the years, but in general I’ve found that it’s a lot more difficult to have personal, intimate conversations online than in person. Maybe it’s the overwhelming availability of entertaining and mindless culture to absorb, or maybe it’s just the awkward barriers of clunky keyboards and hundreds of miles. Maybe it’s just residual warnings from parents not to talk to strangers in chat rooms. This isn’t to say that it’s impossible to talk about serious issues, since it’s easy to discuss such things abstractly and impersonally, but rather that it’s hard to talk seriously, with something at stake, about simple, personal, hidden details. In fact, some of these might be so mundane and obvious that it doesn’t occur that they are being withheld.

It was no exception talking to Esther for the first time online. We talked about online games, Harry Potter, and how weird some other online communities were. When I remember the first couple of months of knowing Esther, I mostly remember laughing a lot, and thinking what a fun, witty person she was. It’s strange, but after being Esther’s friend for not too long, she already felt like a little sister, albeit one who happened to be halfway across the country, and whom I’d only seen in blurry YouTube videos. We would make fun of each other’s typos; we would have passionate, late-night discussions about Harry Potter, about the latest film in the series, about how a certain scene was just perfectly rendered; we would have the most inane chats with our other friends, with the unrivaled silliness of teenagers and young adults. Being friends with Esther was just fun, and sometimes it seemed like that was all there was to it.

It wasn’t long after we became friends that I realized that there was something else about Esther that made a deep impact on her close friends. It’s hard to describe this characteristic, but I think it was ultimately a profound capacity for compassion. She would simply, once in a while, avert our attention from fart and poop jokes, and transform our chat into an intimate space to let other people in to the parts of you that you show hardly anyone. She made it a natural transition, and I think that we were all yearning for moments like this. It’s hard enough to let new people in to our unattractive, uncomfortable, shadowy inner selves in real life; online, it’s easy to have acquaintances you regularly talk to through multiple platforms, but never really open up to. The Internet doesn’t demand the same expectations of social interactions, and most of social media doesn’t have the same directness of one-on-one interactions.

As I see it, it takes a lot of bravery to break away from the silly, lighthearted chatter, and actually ask your friends to delve into the deep recesses of their lives. Esther would manage to break through the layers of ironic humor and aloofness, to get us to talk about our families, our pasts, our fears and anxieties, our faults. She made our chats seem inviting and completely non-judgmental. She gave you the impression that she’s honestly concerned about you, that she really cares about more than you than just your talent for puns. At least largely thanks to her, our group of friends went from being jokes and random nerd enthusiasm, which bears no fault in itself, to becoming a safe, comforting online space of love and compassion. Before I had met Esther, I didn’t think of the Internet as the kind of medium for friends to spill their souls out to one another. I couldn’t have imagined I would get to know online friends just as well as friends I see every day. These are the things Esther means to me: being able to care deeply and ostensibly for your friends, and being able to make yourself completely accessible and vulnerable in their presence.

Sometimes, though, I forget an equally important part of Esther. It’s incomplete to characterize Esther as having been completely open and vulnerable. I forget, even though I constantly remind myself, the Esther who was a young, scared, sick, lonely, flawed girl. I forget, because it took me several months to find out that she had cancer. I forget, because there were far fewer conversations when she told me how sad and depressed she was when her friend passed away, or how futile waking up seemed when she would only go back to sleep, or how isolated she felt even though with the rapt attention of her loving friends and family. I forget, because even though she was a few years younger than me, sometimes it seemed as if she had the maturity and wisdom of an old sage. I forget, because I don’t have to think about death every day except in philosophy classes. I forget, because it’s hard to realize that the same person who gives you so much love, and to whom you give so much in return, can go through the kinds of pain and suffering that nothing you do can alleviate.

Maybe this is why it’s painful to remember Esther. It could have been easy to just recall her laugh, her idiosyncratic typing, her sense of bouncy fun, even her unbounded love, but it’s more true to her own way of loving to remember all the little cracks in her image through which she occasionally permitted us access to her deepest concerns and fears. She would want us to remember her authentic self, including all the imperfect parts. What’s the point of opening yourself up to your friends if they don’t notice you in your vulnerable state? The point of it all is to love friends completely and utterly, at their best and worst, and to love more than just the good things. It’s about showing that you’re willing to accept them for whatever they are, that they should not feel insecure or self-conscious in your presence, which can be a hard task to achieve. Esther really knew how to make you feel constantly that she cared deeply about you, to show that she loved you with or without saying so.

—ARKA PAIN

Make-A-Wish!
Esther, Teryn Gray, Lindsay Ballantyne, Katie
Twyman, Madeline Riley, Abby Drumm,
BOSTON, MASSACHUSETTS, 2010

Catitude is a really difficult thing to try to describe—even I have trouble trying to articulate the weird and amazing relationship between all of us. I have other friends who have said they are envious of the total openness and uninhibited love that exists between all of us, Catitude, as friends. I guess that’s a pretty great thing to be a part of. There has never been a time where I have felt like I could not share anything and everything with someone in the chat. I’m not sure if that unique aspect comes from forging our friendships online, but I am sure that it has a lot to do with how we came together through Esther.

“Esther shared herself through this chat and through us and so, in turn, we shared right back. It became an open platform for discussion on all of life’s problems and curveballs, but also a place where we could race to see who was the fastest at answering Harry Potter trivia (something Esther and I constantly battled for the winning title). We trust and accept each other in a way that we can’t always trust and accept ourselves—through the loving of each other’s faults, we grow to become okay with our own.”

—TERYN GRAY

The Will Grayson, Will Grayson event was my first IRL (in real life) meet up. It was Esther’s too.

On my end, I was terrified. I had to drive a few hours to go to it. Everything was planned. That day kind of solidified everything. Friends that had been friends before an actual meet up all seeing each other for the first time. Too nervous to laugh too loud, talk too much, hug too much, say the wrong thing. All I wanted to do was stare at them to make sure they were real and they wouldn’t run away from me. That was one of the scariest/most rewarding days of my life.

—SIERRA SLAUGHTER

Will Grayson, Will Grayson release,
CONNECTICUT, 2009

“Manly” Esther with friend, 2009

The following excerpts are taken from one of Catitude’s earliest abandoned projects. In the course of sending each other snail mail, someone came up with the idea of a shared journal. Esther was the second and last to receive this notebook that we had planned to send through the group multiple times. This is the epitome of us as a group, diving in with gusto and following through on maybe half of what we set out to accomplish. It’s a snapshot of Catitude as we were in 2009, including a lot of our running jokes. Esther refers to Valerie as a dog, calls herself “unmanly” when she’s tired, and casually slips in quotes from A Very Potter Musical.

—LINDSAY BALLANTYNE

CATITUDE STALKER NOTEBOOK

September 17, 2009

HI EVERYONE, THIS IS ESTHER, AND I LOVE THIS NOTEBOOK. I’m on an actual IRL phone call with Lindsay Ballantyne, the awesome person. She just set her phone down to put her hair up and I could hear her make noises like “nghngg” eheheh.

I’m trying to do our adorable apostrophe character apostrophe on paper and Lindsay wants me to try to draw a D with eyes but somehow make it look like a pipe. Oh Lindsay here I go . . . ‘D’ wtf ‘D’ wtf ‘D’ Lindsay what the hell am I supposed to draw I do not get you :/(<3)

And now she’s telling me about rooming with Geri and her other roommates. They would send videos through Facebook. My pen ink color changed! :O!

Oh man so Lindsay and I are still talking. we’ve been at it : )for 4+ hours. We called Arka and then we called Abby because she was jealous of our CALLNESS and then we called Teryn to say hello. We called Katie to say hi but she wasn’t there so we left her an awesometastic message and didn’t know how to hang up so it went on and on (and nerimon) and then we called Valerie for like 5 minutes to say hi. Oh and we talked to Abby for a half hour or so and then she went nappy-nap. Me and Lindsay are in the closet. Separate closets, unfortunately, but later . . . later I’ll be in hers. >: )

Lindsay just asked me “when you Google mapped my house was it white or blue?” quite randomly. eheheh I love creepy.

SO IT’S 10:25 PM AND I’M SO FREAKING UNMANLY. School is turning me into this monster. This frilly, flower smelling, bow-sporting monster! I hope tomorrow (tomorrow being Friday) UM, I went to sleep and now it’s 11:32 AM, September 18, 2009. I don’t know how that sentence was going to end. SUSPENSE.

Today I had French but my French teacher wasn’t there so all I did was draw dots on my notebook while the substitute yelled at us for talking even though we weren’t. He’s a weird teacher . . . right, I drew dots and wrote out VPM quotes. Like:

ooooh it’s a FOR REAL new page! eeeeeeeeee! (that was so I want to try “umm” like Abby did. hokay here: a fun to write!ummmmmmmmmmmmmmmmmmmmmm mmmmmmmmmmmmmmmm

OOOH that was FUN! #coolformsofentertainment

When i rule the world, I’ll plant flowers!

When i rule the world, I’ll have . . . snakes! >: )

Photo booth with Katie Twyman and Lindsay Ballantyne,
QUINCY, MASSACHUSETTS, 2010

Sunday 9/20 11:41 AM

hihihihihihihihihihi I haven’t forgotten about you, Mr. Notebook, I’ve actually thought about you many times. I just haven’t written in you. IDK WHY. Just haven’t.

Last night was pretty freaking great. We tokbox’d and ummm. What else did we do? (besides, you know ;) hmm. It was the #manlies left. (me, lindsay, arka, geri, obviously) I love tokbox’ing/calling/chatting with you guys so much. : D

So I keep going between wanting to use correct grammar, punctuation, capitalizing skills and overall good writing, and not worrying about it. See, that night there was a briiiiiilliant LOL VIDEO! I meant sentence. bah aha oh man. #nerd

mmmmmmmmmmmkay what now. What do I discuss what do I share what do I think of life and all its great mysteries WHO KNOWS not I!! #wtpuff

Damn my phone battery just fell out of my phone onto the ground. I don’t want to go get it :/ okay I got it DUDE. DUDE. I’m gonna bring this notebook oh wait oh man I want to oh man I’m not sharing this it’ll be a surprise that some of you won’t care about HA!!! </spaz>

9/22/ 4:22 PM

I am feeling weird. I had a really really terrible day like, okay, it was actually fine, like nothing terribly bad happened, I just felt meh. Then I got home and felt insanely meh. My house is stuffy but I have nowhere to go. So I slept. then I went to the dentist and lalala had a filling and like anxiety medicine or whatever that lovely crap is called. Also had to have two gum/cheek/oh anesthesia shots on mah cheek/gum/whatever ’cause my teeth are bad. yay! But then my dentist told me his son was a nerdfighter cause we started talking about John Green and he’s a sophomore and he goes to my school and my dentist’s daughter is a seminerdfighter and she’s a junior at my school and just : D I love when nerdfighters live near me. I’m going to see them TOMORROW at SCHOOL.

aaaaaaaaaanway I’ll try to think of better things to write in here and I’m sending it soon I SWEAR. K going to sleep or I don’t know something BYE.

Sunday 9/?101 who knows 1:02 pm

Eermmmmm hi. how are you, dear notebook? how indeed? uh I’m okay. I just woke up. I’m slightly exhausted. I didn’t even stay up late last night. Fell asleep at like 5 am or something. It had been just me and Lindsay for pretty much the whole call. Destiny was there for parts but mainly just me and her typing (I couldn’t talk—family) and giggling and oh, my rowling email it was the best.

lol. Valerie’s chickadee needs to be easy to duplicate so I can draw adorable adorableness TOO.

*eats banana* *feels awkward* *glances at banana*

*throws away banana* this actually always happens.

So I was thinking. when we’re done sending this around once, we should send it (and maybe another one) along again so we can all see what everyone wrote. It could be an endless cycle, yeah?

idk it sounds good to me, what do you all think?

ps. I’m totally fine with you all violating my personal writing space by writing/drawing things in my . . . personal writing space : D

Ps.ps. I ship writing/drawing so hard

Saturday, October 3- 1:59pm

OK. before I start apologizing for not writing, let me tell you a few things. I have a cold, and last night was epic amazing awesome fantastic incredible sauce. Yeah, I went to a Draco and the Malfoys, Harry and the Potters, Whomping Willows and JFF & the Sugar Quills concert. It was just AH.

I don’t go to Wizard rock shows OFTEN, but the ones I do go to always have the same people from MA chilling around and I’m finally getting to know some of them it’s GREAT. :D

Yeah but anyway, I got a shirt and pins and a JFF bag and and and oman I love Wizard rock. ahhh.

Oh and MEREDITH, Paul DeGeorge’s girlfriend, who is a merch girl is incredibly awesome and added me on Facebook! Stopping squeeing now. God, I’m friggin awesome.

Hmmmm okay before the show for oh oh I almost forgot but I swear I didn’t. See, I was going to maybe kind of bring The Stalker Notebook with me to the show but I FORGOT so instead I got this thing for you all (that are into Wizard rock, anyway)

So guys. I’m going to send this really soon. I don’t think I’ll write anymore in it, but idk.

I love you all so much. My life is really stressful and before finding the vlogbrothers, nerdfighteria, you guys, I wasn’t you know dead, but I really do feel like I have so much more in my life. Sure, it’s still not complete, but even listening to you guys’ static makes my life feel a little bit more bearable. You’re all the best, all of you. And when I say you, it’s not just a line. I REALLY DO pretty much kind of a little bit love you. A little. : D (sometimes emoticons on paper are a bit scary.) (btw I’m finally sending this on December 26, 2009. : ) )

OOKBAY <3333

(It’s not too spectacular but it has HATP’s signatures, and you can’t see them until Leaky 11 because they’re all MA-y? I love it, anyway >:) )

Exact date unknown

Freaking questions ok:

Valerie’s idea: You can answer this/these question/s if you’d like to, whoever you might be. And then ask things if you want. Just so yeah just so. Man dogs have good ideas if we just LISTEN!

  1. Do you like mustard? Is there a reason for liking/not liking it? What about ketchup? mayonnaise? Is there some other random, possibly disgusting thing you like/detest? Do share!!!!!!
  2. DO YOU POP YOUR KNUCKLES/anything else (you know, like your neck : S) Freakin’ weirdos . . .
  3. If you were a giraffe, and you really wanted chocolate but were stuck in a cage/zoo/caged in area, how would you escape/break out/kill all the guards and what would be your weapon choice? You can only pick one, unfortunately. You are, after all, just a giraffe. Not that giraffes aren’t special, but I mean there’s only so much you can carry.
  4. What is one thing (whether it’s being on a cereal box, graduating from high school/college/other lame place, alive or whatever) you want to accomplish in the next year or so?
  5. What was life like before you were a nerdfighter? How did you *find* nerdfighters? Do you remember your first reaction lol

k, real bye now <3

            -Esther

(this is like Skype, where I freaking can’t say bye.)

Catitude Chain of Command,
STALKER NOTEBOOK, 2009

“THANKFUL” VIDEO

November 25th, 2009

I’ve tried blogging, I’ve tried making a video, um . . . I’m not really prepared to make this, but I’m gonna make it because I wanna have this made, like . . . uhh, I just, I have a lot of things to say and I wanna be able to see that I said them, later on. It’s not like for you, whoever you are. I mean you can watch it, that’s cool. But, like this is . . . I don’t know. I don’t know what I’m even saying.

But anyway . . . Thanksgiving is the time to be thankful for what you have. And it’s more about dinner and what you’re gonna eat for . . . uhsshh turkey, nowadays, um, for most people. But, I actually was thinking about it today and I realize that three years ago, 2006, a few days before Thanksgiving I was diagnosed with thyroid cancer. And, um, ah that made me like just realize it, and . . . um . . . so that Thanksgiving I spent my . . . I mean yeah, that year I spent my Thanksgiving in the hospital. Um . . . and I had like a tube in my side and we didn’t really know what was going to happen. Because, I had been sick and my parents thought that the worst that was gonna happen was that I was gonna have pneumonia. Ahh, then I, then they’re like, oh?

That wouldn’t be so bad now.

But . . . the next Thanksgiving, but then all that stuff happened—it’s a whole ’nother story. Next Thanksgiving I spent, I spent my Thanksgiving at home. We were living in France at the time for 2006 and 2007. (Uh, for a whole ’nother story!) And that Thanksgiving I spent my Thanksgiving at home. With this oxygen tube (points to cannula), except you know, a different one, just the whole thing all over the house, just connected to the machine that would make oxygen. And it was way downstairs and my bedroom was way upstairs so the tube would travel the whole ground and my parents would step on it. And it would be funny kind of, like just, you know . . . whatever. But, then, the next Thanksgiving I spent . . . we were in America. We came back to America so that I could go to a hospital that knew more about “cancer health” in children. Um, and then yeah, I spent that Thanksgiving at home in this person’s house we were staying at. I think, I don’t even know. Next Thanksgiving was this Thanksgiving, which is today, so Happy Thanksgiving!

But, yeah I wanted to say like . . . being diagnosed with cancer, you know, I haven’t really had . . . well I’ve been pretty close to dying multiple times, err . . . you know, pretty close to dying. Thought I was like literally . . . last Christm . . . last, um, last December, November. Whoa Really? Last December, November. Oh, yeah, it was like last winter. I was like literally pretty close to dying. And, um . . . so that just makes me thankful for being alive basically. Um . . . huh, you know if I had died that wouldn’t have been cool. Oh my voice is quivering. Uhhh, yeah . . . I yeah . . . I’m just, I’m just glad that I’m alive and thankful for the doctors and for medicine and for, like, oxygen, and for like, you know . . . all that stuff that keeps me from dying. The pills and stuff like that.

Umm, this Thanksgiving is good though, ’cause I’m a little better even though I’m still kind of sick. I’ll still always be kind of sick, but you know, I’m glad that I’m healthy, healthy . . . slightly healthy now. And I’m at home and I have “aliveness” (uses air quotes), and I have my family, and I have nerdfighters and . . . the Internet and awesome friends that I’ve met through the Internet. And I honestly don’t know where I would be if I hadn’t um, had that horrible Thanksgiving where I was diagnosed with thyroid cancer. I don’t know if I would even . . . you know, I don’t know . . . I might have died a different way! Heh, that’s a really happy thought, ha, oh my! . . . yeah, just, um . . .

So, I don’t usually like . . . think, think about what I’m thankful for . . . like, I just kind of sort of think about it. But I really am thankful for . . . just being alive. And I’m thankful for my family because my family is awesome. And I’m really thankful for my friends because they’re really cool even if they’re . . . most of them are not physically present in this world. I mean in my world! In my world, in my town, most of them are in the computer. They’re pre . . . um hmm, most of them are present in this world, I mean in, in, in the world. Oh yeah, this is what happens . . . when you . . . don’t have a point to what you’re saying except you kind of do, but you’re trapped in your thoughts . . .

Alright. I hope you guys have a nice Thanksgiving because Thanksgiving is cool. Just, you know . . . remember that you’re lucky even if you don’t think you are. Because there’s always something you can be thankful for. And, yeah, I know. Okay.

Friday, November 27, 2009 9:17 AM, EST

Happy Thanksgiving, everyone!

It was the best gift of all to celebrate the day all together, enjoying turkey, stuffing, smashed potatoes (we leave the skin on!), sweet potatoes, roasted veggies and the important condiments. We went around the table to say what each of us were thankful for—everything from family, to jobs, to food, to Wii were mentioned!

Esther continues to hold her own. We had a recent scare when the nurses heard skipping heart beats—as many as 5-9 in a minute. But after complete testing by the cardiology and EKG departments, we’ve been told not to worry. Her team of doctors at several hospitals is also meeting in the next 2 weeks to discuss her continued treatment. She’s had more pain in her feet (a bit like having internal blisters), which is a side-effect of the experimental chemo she takes. She started an additional medication for the nerves which is supposed to help manage the discomfort.

Three years ago this weekend we found out Esther had cancer. The next year, Thanksgiving 2007, was when Children’s Hospital finished their review of Esther’s medical history, and stated that we were looking at maintaining, not curing her cancer. Then during Thanksgiving 2008, Esther had just come out of a month in ICU, where our family came at the doctors’ request to say our goodbyes—just in case. For all seven of us to gather together at the table for Thanksgiving 2009 is a cherished celebration of life! So, if you haven’t done it, thank God for your family and friends, and look someone in the eye today and tell them you love them.

From our home to yours.

Lori

 

 

Saturday, January 23, 2010 2:07 PM, EST

Esther has been doing well, attending high school about three days a week. She loves photography and French, and is doing well in her English class. She has a tutor for Algebra at home, and is doing her history course online. This past semester she was on the highest honor roll at school!

Healthwise she has been doing good, until this week’s episode with her bi-pap machine. Her hair has grown back, so after Christmas she went back to school “au natural,” without her wig. She has been having a lot of pain in her feet, so her medical team just decided to give her a “drug holiday” for 2-3 weeks to see if the nerve damage will diminish.

However, this week Esther had a tough week. She uses a bi-pap machine at night to give her breathing support, and the machine didn’t work well Monday night. The therapist came out to fix it Tuesday, then 1/2 hour after Esther went to bed Tuesday night, the machine quit. I thought she’d be ok for one night (this has never happened since we started using the machine in November), so waited to call them back Wed morning. They finally came at 1 pm Wed. Esther couldn’t sleep all night—she was upset, exhausted, emotional, and her lungs hurt. The company gave us a loaner machine, so Esther put it on for the rest of the day. Thursday we had clinic, and she was so tired she used a wheelchair—something she hasn’t done for a couple of months. Then unbelievably, Friday morning about 6 am the loaner machine quit! Again, it took the company until 1 pm to bring us another machine.

The sober lesson from all of this for me has been to see how compromised her lungs really are. I knew using the bi-pap added to her comfort level; I didn’t know NOT using it compromised her health to this degree. Now we realize that the huge gains Esther has made this year might simply be attributed to the support she’s been getting for her lungs. Without that machine at night, I’m not sure the chemo or G-tube would have made any significant improvement in her health. Having that support has given her the energy to eat more, to gain weight, and to start school again. It’s given her a feeling of improved health and wellbeing.

Anyway, a couple of long paragraphs. Our hope is that by Monday she’ll have recovered her equalibrium and be back to feeling better. Just in time for her midterms next week! It’s been a reminder to me to rejoice in each good day, and we hope you will take that to heart in your own lives as well . . .

Blessings,

Lori (for the Earl clan)

March 17, 2010

There was a quote on an episode of Lost one day, though I forgot what it was wait I typed it somewhere? Yeah: “you’ve just spent so much time running away to realize what you’ve been running toward.”

Deep, right? ha. I like it. Lost has been my new love for a while. I love its biblical references and mythological feel. It’s quite good. Sad it’s almost over waaaa.

I’m in a lot of pain right now, lol. I mean not too bad, just regularly I don’t really have . . . *any* pain. I did something screwy with my left leg (stretching I think?), and now it hurts when I move it at *all.* waaa yay. It’s not too bad though because I haven’t moved really at all the past week/or so. Why? lol. Because I have a smidgen more of fluid in my lungs (like, literally a smidgen; they barely considered it more. but, because my lungs notice everything, I feel it. ugh) Anyway, it kind of feels like something is pressing on my lungs. Ugh. when I wake up it’s the worst.

But I feel like a butt for complaining! Because there are kids who suffer so much more and yet do *good* for the world. :|

Ok. Gonna listen to music/doodle.

Bye.

Star of nerdfighteria,
BOSTON, MASSACHUSETTS, 2010

Thursday, April 29, 2010 6:48 PM, EDT

Loved Ones,

Esther is not doing well. Next week they will be putting in one or more shunts (tubes for draining fluid) into her right side. All the fluid, and more, that they drained out a week ago is back again. This is very likely a sign of tumor growth. She’s uncomfortable and tired a lot and has asked for a hospital bed so she can sleep for longer stretches. Our health care team is looking at yet another experimental chemo and maybe something more. We are willing and Esther is game to keep fighting, so we’re not giving up hope!

Still, suffering seems a useless business. I see no value in my daughter’s pain. I know the standard answers (“redemptive” “result of sin” “an evil attack” “bigger purpose”). But the only reality is mystery and that sucks. Our faith remains but is changed; we have “put away childish things.” We talk about death and dying and living and loving and we wait, and try to dream a little together each day. Esther knows more about these things than any 15 year-old should. The grief for us is like a tightening of the chest, a closing in, a sadness and an anger and mostly, a helplessness. I can’t do anything to make my little girl’s pain go away! And she’s so perfect, to me.

I wish I could tell you more but those treasures are ours for now. Thank you for waiting with us.

Wayne

May 2, 2010

I don’t think we’re going on the road trip (the one to visit the majority of my friends). Seeing as I’ve been sicker.

I want to invite friends out here.

Where? some hotel?

Who: Abby, Lindsay, Katie, Teryn, Maddie

Maybe also: Blaze, Arka, Destiny, Sara, Geri, Arielle

What we’d do: watch TV (The Office, DW, Community, w/e), baguette duel . . .

“Friends of Esther,”
SQUANTUM, MASSACHUSETTS, 2010

Friday, May 7, 2010 12:48 PM, CDT

To our friends:

Esther just came successfully through a chest catheter procedure last night, and she is recovering in the Intensive Care Unit. The doctors removed another liter of fluid and put in a permanent tube during the hour procedure, and within a few hours she was able to go down from 5 liters of oxygen to 3 liters—so her lungs definitely have more room to work with the fluid gone.

The CT scan they did a few days ago showed something suspicious in the right shoulder—once she is a few days out in recovery they will do an MRI to see if the cancer has spread to her bone.

She is on frequent pain meds right now, but is stable and lucid and once she can go off the IV pain medication and they teach us how to use the fluid pump on the chest tube we should be able to go home in a few days. Right now they are draining off the fluids again, trying to get out some air trapped in the lung cavity.

Last night Esther said how thankful she is to have doctors who don’t just do their job, but really care about her. Our team at Dana Farber’s Jimmy Fund and Children’s Hospital is the best of the best! We are grateful. Thanks for caring, and we’ll keep you updated.

Lori

 

 

Sunday, May 9, 2010 11:52 AM, EDT

Esther is still in ICU, struggling with getting a handle on her pain and her breathing. Obviously taking out the fluid has improved her ability to use her lungs, since her settings went down to 3 liters of oxygen. Her right lung is not fully re-inflating, however, so we’ve gone up on her bi-pap settings, and she has been staying on her bi-pap rather than a nasal tube all but 2 hours or so a day.

She’s been running a low-grade fever, so today they are going to start her on 48 hours of antibiotic while they wait for the cultures to indicate whether there is any infection. Switching her from morphine to another pain med over the last 24 hours brought on a migraine last night—so they’re bringing in the pain team to help find the best medicines for her.

So . . . Things aren’t dramatically worse, but they also aren’t improving much. It’s hard not to fear the future as I contemplate bed-ridden days of pain and increased interventions for my 15 year-old. Perhaps with new chemo we’ll have months of better days . . . Not knowing is hard. Seeing Esther struggle with anxiety and pain is harder. We hope for reprieve, and pray for acceptance.

Isn’t it sad that so often it takes facing death to appreciate life and each other fully? I hope you are making a difference for someone today . . .

Lori

Chillin’ with Graham,
QUINCY, MASSACHUSETTS, 2010

 

 

Saturday, May 15, 2010 11:52 AM, EDT

Wow! The power of the internet, twitter, and especially nerdfighters! Once John Green got the word out that Esther was sick and needed encouraging, the awesomeness coming her way has been an amazing thing to see. As her parents, we thank you for brightening her days with your messages.

On Wednesday Esther moved from ICU to the oncology floor, and into the most amazing room they have! It’s like a hotel suite, with 2 tvs, a couch, a queen size hospital bed, and our own microwave and fridge. Even better, it looks like we’re on track for her to come home by about Tuesday of this next week.

Her prognosis hasn’t changed, and her cancer is pretty advanced. We have hope, though, that if this new experimental chemo she started kicks in, it could halt the cancer for a while and give us some time. She’ll be coming home to an electric bed that moves up and down (Abe has already been experimenting on it!), and with all the pain meds, and breathing apparatus that she needs to be as comfortable as possible.

Thank you for all your notes. Esther has been reading everyone of them . . .

Lori

Esther and Pancake in her bedroom,
QUINCY, MASSACHUSETTS, 2010

 

 

Friday, May 21, 2010 8:26 PM, EDT

Esther came home from the hospital on Tuesday, and is settling into her newly designed downstairs room (the dining room converted to better things!). We have good care daily from the Brockton Visiting Nurses who come in for an hour or so to check on vitals, do labs, and drain her chest catheter. Some days are good, some just okay. This afternoon Esther sat for a while on our porch, and earlier she watched 2 episodes of Doctor Who with her brother Graham (Abe is too little for the doctor . . . ).

She says thanks for all the great messages and internet love and hugs . . . They really make her happy.

Lori (mom)

 

 

Thursday, June 3, 2010 7:49 PM, EDT

Esther is doing okay. She has been more tired lately, and more nauseous—probably the new chemo she’s been on. They are giving her a one-week break this week, so hopefully that will help. She is comfortably moved in to her downstairs bedroom, and it’s wonderful since people can pop in and out, and her brothers can check on her. It’s a close walk to play WII with them, or join us in the kitchen or the porch for a bit.

She is excitedly planning a Make-a-Wish “reverse” trip right now, where they are flying out several of her close friends to visit her at a hotel in Boston. That will be over the 4th of July weekend, and since we get to be there, we are excited about it too!

Esther had a wonderful time with Grandma and Grandpa this past week, visiting from South Dakota. We managed one special dinner out at a favorite restaurant—but mostly just hung out in her room.

Also, big sis Abby recently arrived home from Germany, which is a great encouragement to everyone! We’ll update again soon.

Lori

June 5, 2010

It’s the Adivan. It’s the bloody Adivan and I know it but I’m still feeling emotional and . . . well . . . shitty—Annette said when you take Adivan, you lose your inhibitions—the emotions you already have are just amplified.

So basically: I’m sad. I’m incredibly lonely. I’ve no one to talk to except Lindsay, who I feel doesn’t deserve this Adivan-shitty-mess talk (plus she’s busy right now) or like Mom/Dad. Kind of sad.

What do I say to Angie? She’s over there. On the futon. I could ask her about her “bf” Bill. Or her friends. Or booze or weed. Or angst. There are things she’ll talk about with me. I could ask what she thinks about. If she ever wonders when I’ll die. Because, let’s face it, we just picked out my spot in the cemetery. Very literally. Nice spot, nonetheless.

“I think that’s why I go out all the time. Because I don’t like to think.”—Angie. Yeah, okay. Angie and I are two extremely different people—

Oh dear goodness I haven’t hugged anyone for a hug in a long time. I feel sad. And a little angry. At what, I don’t know. I miss Angie. I want people to ask if I’m ok; if I’m scared; if I’m unsure what the hell I’m feeling.

My cancer? suspected to be in my shoulder.

adivan

is quite a little

asshole.

excuse moi francais

although . . ..

it helps

me sleep

and it isn’t

taken until

the nighttime.

Wednesday, June 9, 2010 1:28 PM, EDT

A quick note: we are soon off to the hospital as Esther continues to have ups and downs. Last night, Oma and Opa (Lori’s folks), Abby, and mom and dad were together for big sister Angie’s high school graduation (yeah Angie!). It was a gorgeous evening here in Quincy and Esther was simply “radiant” (as Charlotte said to Wilbur). Now, today, she’s having trouble breathing so mom and daughter are leaving soon via ambulance. I’ll meet them there.

Just last Friday evening Esther strolled (or rather was pushed by Angie in a wheelchair) around a local cemetery where she picked out her spot. Am I saying this? What parent helps their child choose a plot? This is not what we want. The joy and sadness of watching two sisters roll the grounds and simply be together was surreal. I cannot explain why hope sustains us even in the presence of innocence undone. Very few people in our culture talk about death and dying or if they do it’s “embrace the light/suffering” or “fear not, heaven will reunite us with loved ones.” I do not worry about death, at all, though I do not welcome Esther’s dying. I do not care about joyous celebrations there, I want to give her away in marriage here!

Heaven is Esther doing cartwheels again, her cloud of fire-white, brittle hair shining, waving at waiting earth.

—Esther’s dad

 

 

Thursday, June 10, 2010 10:57 AM, CDT

A BETTER DAY

I’m sitting beside Esther now. After a frightening yesterday, she’s waking up, the fog of last night’s morphine finally lifting. She finds it best to rest leaning back like a seasoned sun worshipper. No tan though, as her skin’s a porcelain white. She’s more than a beautiful young lady and a mature version of that wild hair, now chemo ravaged and of uncertain color, has returned.

Once she’s able, our goal is to get her back home to her cats, around her family and visiting friends and in her own room. Besides, she’s behind on three Doctor Who episodes and Graham simply won’t watch one without her! Her Make-A-Wish is scheduled to come true in three short weeks and she is more than a little excited about that. Then follows her 16th never-been-kissed birthday party (and, no we are not looking to change that status). Esther has always been my muse and tolerates what I write here (from “oh, dad” to “that’s good”) but it’s your guestbook entries that really touch her and give her hope. She sends her love.

—Esther’s dad

 

 

Saturday, June 12, 2010 10:39 PM, CDT

Just a forewarning: my entries are much less poetic and reflective than my dad’s. lol ;D

I woke up this morning around 8 am, having slept the night pretty soundly (I mean, hey, I was only woken up by my dad’s snoring a few times). At some point- 9, was it?- I started getting a headache, so one of my favorite nurses gave me a massage and I fell back asleep. Nothing much there!

At noon, my two sisters and brother Graham were standing over me, shaking me slightly and (what sounded like) screaming at me to wake up. I was completely confused as to what was going on, but they handed over a large box with a pet logo on it and set it on my lap. By this point I was gaining consciousness enough to think they were giving me some sort of cat-shaped cake, but, no! Upon opening the box a BLACK CAT JUMPED OUT. Hello, Pancake!

Yep! Apparently, my fam and one of the really nice ladies that works here at Children’s worked together to get my cat, Pancake, snuck into my hospital room! He’s currently purring happily on my legs and it feels so nice to have my kitty with me, even be it in the hospital.

So, although I’m stuck in the hospital for now, I’m happy. I like the room I’m in (it’s the same, huge one I was in last time. score~), I have my kitty, I’m feeling good, and I spent the entire day playing games with my sisters, Abby and Evangeline, and older-younger bro, Graham. My cat visiting being the biggest news as of late is quite a nice thing to say. Hope you’re feeling well this nice evening, and remember to give your pet a hug.

Don’t forget to be awesome -love, Esther

Pancake and Blueberry,
QUINCY, MASSACHUSETTS, 2009

 

 

Saturday, June 19, 2010 11:28 AM, EDT

Seems like Grand Central Station around our house these days! Several friends have stopped by for visits, grandparents have come and gone, wonderful meals get delivered three days a week, the visiting nurse is in at least three times a week, and then there are sisters, brothers and their friends . . . ! Abraham came home with 3 friends from school on Thursday, and they entertained Esther with their 6-year-old rendition of “Shake your booty . . . ” It was hilarious!

We do pace the days for Esther, as her breathing issues have continued. Oxygen is up to 7 liters, but the new PICC I.V line allows continuous meds that help keep her comfortable.

Most of the excitement around our house is the upcoming Make-a-Wish event. Our family and 6 special friends of Esther’s will be staying at a hotel in Boston from July 1-5. Activities include a harbor luncheon cruise, a celebrity visitor(!), a Harry Potter movie marathon, a concert, games, food, fireworks from 7 floors above the Charles River, and more! Esther is EXTREMELY excited . . . ! Watch for photos and info after the fact.

With several eloquent writers in the family, my role tends to be the pragmatic one . . . From our house to yours,

Lori

Boat Cruise!
BOSTON HARBOR, MASSACHUSETTS, 2010

 

 

Monday, June 28, 2010 11:16 AM

Wooh Hooh! Make-a-Wish event is this weekend, and gets started early with the arrival of two of Esther’s friends on Wednesday. Thursday we go to the hotel in Boston, and the other 4 friends arrive. It will be a busy, busy week for Esther, who is normally overstimulated by an hour or two with a visitor (like the recent visit with her cousins Victoria and Alex!), or the exciting weekly visit to the Jimmy Fund Clinic!!! And of course we have lots to do, what with getting a hospital bed and oxygen tanks delivered to the hotel, airport pickups, house cleaning, packing about 1000 things for Esther, and our own bags with swimming suits and party gear . . .

Pray and hope for health and strength and joy and awesome memory-making to last a lifetime . . .

Lori

 

 

MAKE-A-WISH WEEKEND

by Lori and Wayne Earl

A few days before the Wish weekend began, a bulky package arrived and everyone got their first view of the deep lime green bracelets which would become synonymous with hope and with Esther. (In fact, from that moment on, this color would be referred to by her friends and family as “Esther Green.”) On the bracelets were etched five simple words: THIS STAR WON’T GO OUT. Included in the packet was a note:

Dear Esther and the Earl Family,
The enclosed were created by the world design team of Alexa Lowey and Melissa Mandia. We hope you enjoy them. Approx 80 people are already wearing them and we will be ordering more shortly - the demand by those who know or who have met Esther has been huge. Remember “This Star Won’t Go Out!”

Alexa later explained that she and Melissa had been considering different phrases when this phrase suddenly “just came” to her.

Esther’s Make-A-Wish event was actually two years in the making. She just couldn’t decide what she wanted or needed. The Make-A-Wish counselors plied her with suggestions: Disney World? “With an oxygen tank?!” A trip to meet a celebrity? She couldn’t think of anyone else she wanted to see, or meet. She flirted with the idea of a shopping spree at Sephora, since she loved eye shadow, nail polish and makeup brushes . . . But once she came up with the idea of meeting her Internet friends from Catitude irl (in real life), she was 100% focused. Though it was an unusual request, the folks at Make-A-Wish, helped by local “Friends of Esther,” did a great job at making her dreams come true.

from LINDSAY BALLANTYNE

I often asked Esther about her health, and seeing her regularly on video calls made me sure I knew what to expect. She warned me that she was in a wheelchair most always since she didn’t have much breathing strength, but there was no way to grasp the full scope of her condition until I saw her in person. It was a wake-up call, but also a privilege to help care for her basic needs even for such a short time. I said good-bye to Esther during a marathon recovery sleep session, feeling that was the last time I would see her in person and doubtful she would even remember it.

from KATIE TWYMAN

The weeks leading up to Esther’s Make-A-Wish trip were packed to the brim with planning. We were so excited to see each other, and we wanted to make sure we took advantage of every single second we had in each other’s presence. Hours were spent coming up with the most ridiculous ways to pass time together. We put a lot of them in a list, which contained the following ideas, among many others:

• go to waffle house at 3 a.m. and eat cheesy hash browns and read books aloud

• Speak in British accents at least 40% of the time

• LARPING IN HOTEL 4EVA

• Hugging Abe (& others not as important)

• BAGUETTE DUEL

• generally making Arka uncomfortable

Obviously not all of our ideas made very much sense, and ultimately only a few of the things on the list ended up happening. Once we were finally all gathered in Boston, it didn’t take long for us to realize that what we actually did was not nearly as important as the simple fact that we were doing it together. Hours were spent cuddling, gorging ourselves on candy, and laughing at nonsense. Mostly cuddling. And when I think about the trip, those are the memories that come to mind first. After all, that’s what the trip was for: spending time with people you love and finding little ways to show that you loved them.

For several intensely exuberant, emotion-laden days and nights, seven of Esther’s tight-knit Catitude friends, along with our whole family, stayed at a Marriott hotel on Boston’s Tudor Wharf with views of the USS Constitution from the hotel patio. The first night at the hotel, the revelers enjoyed a catered dinner and general silliness with one another, a special visit from Esther’s medical social worker, Jenn, and an energetic visit from Prof. Dumbledore himself! (Who brought along Andrew Slack, the co-founder of the Harry Potter Alliance.)

The highlight of the weekend for Esther was the planned visit the following day with her favorite YA author and friend, John Green. That morning, her dad met John Green in the lobby of the hotel to express his gratefulness that John would go to the personal expense of coming to Esther’s weekend. Wayne asked him if he’d ever thought of himself as a kind of Doctor Who. When John looked a bit puzzled, Wayne went on:

“Well, I’ve been watching Doctor Who episodes with Esther and it seems to be a story about an amazing, but lonely alien—with two hearts, by the way—who is full of love for humanity and who goes around the universe doing extraordinary things, one of which is to periodically drop out of the sky in order to choose a surprised and lucky passenger to accompany him on what he calls, his ‘next adventure!’ After promising to turn the would-be passenger’s world upside down, he always gives them the chance to decline. Of course, they choose to join him and by their journey’s end, they are changed and the Doctor is changed, too, always for the better.”

Esther’s father then looked John in the eye and said,

“I think you are the Doctor and Esther is your present passenger. I don’t know why you chose her now, but thank you for inviting her along for the ride. Mostly, though, we know that you love her. That’s the easy-to-understand part.”

A few minutes later they went up to the hotel room where everyone had gathered, waiting for this singular, thrilling moment when John Green himself would enter their world. Just as the door opened—like some old-time gunslinger—John pulled out his video camera and began filming. They spent the entire magical day with him, eating pizza together, playing games and talking, and crying, too. The group played the game Serious Ball, which involved tossing around a foam volleyball covered with questions to which each friend had contributed. When the ball was tossed, the recipient would have to answer the specific question underneath wherever his or her right thumb happened to land. A few of the questions included, “Biggest fear with the future?” “What’s impacted you the most in past five years?” “Your happiest moment and why?” “One goal by end of year?” “What do you care about?” “What would you say to J.K. Rowling if you had chance to meet her?” and “What one thing would you change about self and why?” Later that evening they drank espresso with John in the nearby Italian North End, an event Esther later described with one simple sentence: “We walked into the North End, we got gelato and espresso, and John was fun to just chill with.” Outside the café, John purchased two roses from a vendor, handing one to Esther. The other he gave to fellow Cat, Arka, saying, “Well, he’s the only other guy and I don’t want to discriminate.”

Before John left the hotel the following day, he wrote a note to Esther. Written on hotel stationery, he drew an arrow pointing to the printed words on the top of the page which said, “IDEAS WORTH SAVING” and added his own thought, scribbling, “I can’t promise that, actually.” He continued,

Dear Esther:

This was the stationery at the hotel where I spent one of the most important nights of my life. Thank you for the gift of that day, for your generosity, and for your pizza. I feel very lucky to know you—and as far as I have seen, to know you is literally to love you.

What a star shines on our little planet. I pray for a miracle so that I will never have to miss you—but know this: So long as I remember anything, I will remember you and the unprecedented gifts you’ve shared with me.

Love,
John  

Later that day, everyone (except Esther, who was feeling too exhausted to attend) was escorted via limousine to see the movie Eclipse at the IMAX. Then the group collected Esther for a lunch cruise around the Boston Harbor islands. She and her friends ended the day escorted by limousine to a Wizard Rock concert in Quincy, which was staged just for them. Featuring groups Draco and the Malfoys and Justin Finch-Fletchley, the partygoers were in heaven as the bands’ loud voices and electric guitars wailed on with their Harry Potter-related lyrics. The final day was spent together lazily at the hotel. Esther was visited by her endocrinologist, Dr. Smith, who stopped by with her own family in order to celebrate her beautiful young patient. That evening, from the comfort of the sixth floor at Mass Eye and Ear Hospital overlooking the Charles River, everyone sat together at a private event—with more pizza!—and watched the Fourth of July fireworks light up the sky.

It was a time of bonding and healing for those who participated. Esther had an amazing few days and said her favorite part was definitely the people: her family, Catitude, and the daylong visit with John Green. Throughout the extended weekend, multiple laptops within reach, Esther and her friends were piled up on couches, hotel room floors, and scattered on the beds like so many popsicle sticks! As busy as those days were, there was still ample time to sit together and enjoy the quiet.

“Make-A-Wish,”
BOSTON, JULY 2010

Abby Drumm, Arka Pain, John Green, Katie Twyman, Teryn Gray, Madeline Riley, and Esther
OUT FOR ESPRESSO IN BOSTON’S NORTH END

with Evangeline

Lindsay Ballantyne, Esther, Esther’s physician Dr. Jessica Smith, Teryn Gray, Esther’s social worker Jennifer Rein, and Katie Twyman
THE JIMMY FUND CANCER CENTER, BOSTON

Katie Twyman, Arka Pain, Teryn Gray, John Green, Esther, Abraham Earl, Lindsay Ballantyne, Abby Drumm, Madeline Riley

“Puff fight,”
JOHN & ESTHER

July Fourth “Roar” with Teryn

Abraham Earl

Lindsay and Esther

from TERYN GRAY

One of my most favorite memories of Esther is from July 4th, 2010, during the Make-A-Wish trip. We had just finished watching fireworks high above the Charles River and everyone else was riding back to the hotel in another van, but Esther and I had ended up in her family’s car. It was a quiet ride back; the full day’s events had exhausted Esther of the energy she had. After a few minutes of sitting next to each other in silence, Esther reached out, grabbed my hand with both of hers, and pulled it to her lap. She put her head on my shoulder and stroked my hand with her thumb for the entire car ride back. She whispered to me, “I love you. I love you a lot.”

And that was really all I needed to hear for everything else to disappear. Esther made me feel like I was so important, and so loved. And I was so scared to lose her. But she kept on stroking my hand as we both cried quietly.

I’m not sure if it was entirely sadness that caused the tears, but there was so much love. And that’s all that mattered. Despite the fear, despite the sadness, despite the pain, there was love. To me, that’s how Esther was. She was all things human: imperfect, flawed, scared. But to me, what makes her so remarkable is that she was also so, so full of love and so willing and eager to share it.

Catitude continues to be imperfect, flawed, and scared, but we have a lot more love in our midst thanks to Esther. And we love her so much for that. I love her so much for that. I miss you, E.

There were others who didn’t come to Boston but who also loved Esther and wanted to encourage her. Along with members of Catitude, several online celebrities responded with letters for a scrapbook that was created to cheer her up. Wheezy Waiter, Cute with Chris, Lauren Fairweather, Harry and the Potters, Julia Nunes, and others contributed pages, and Catitude’s own Katie Twyman presented a large scrapbook to Esther when they met during the Make-A-Wish. Katie Twyman also wrote an introduction:

Arka Pain, Lindsay Ballantyne, Esther, Teryn Gray,
BOSTON, MASSACHUSETTS, 2010