In 2006, when she was twelve years old and living in France with her family, Esther started to find herself unable to keep up with her well-traveled family of seven. In retrospect, Esther had noted several weeks of chest pain, cough, and difficulty breathing, particularly upon physical activity. She went to the Hôpital de la Timone in Marseille, France, where she was originally thought to have pneumonia. Then, surprisingly her chest X-ray showed fluid and nodules in both lungs.
Esther was immediately admitted to the hospital and after extensive procedures she was diagnosed with metastatic papillary thyroid cancer, the most common type of thyroid cancer in children. That November Esther underwent surgery to remove the thyroid gland and numerous lymph nodes in her neck. After her surgery, she struggled with serious complications which required her to permanently take thyroid hormone, calcium, and vitamin D supplementation. As part of her cancer therapy, Esther received also two doses of radiation therapy.
*****
I first met Esther and her family in August 2007 at Boston Children’s Hospital as they hoped to find assistance in finding a remission and cure. In general, the long-term prognosis of pediatric thyroid cancer is quite good with up to a 90 percent survival rate at twenty years. But Esther’s case was different; she presented with more extensive disease. Her cancer had spread throughout her body and had resided in the lymph nodes in her neck and lungs. A team was assembled, including a thyroidologist, (doctor who specializes in thyroid cancer), pulmonologist (doctor who specializes in lungs), endocrine nurse (nurse who assists in hormonal disorders), and social worker (specialist who helps with financial and emotional hardships and adjustments), to assess Esther’s medical status.
Typically, patients with thyroid cancer require visits to the hospital every six to twelve months, but Esther needed to be seen much more regularly. Our first approach was to administer high doses of radioactive iodine (radiation) to target the disease in her lymph nodes and lungs. Not only did this require an extremely restrictive diet, but it also necessitated further isolation from friends and family. Although Esther began to respond to therapy, both she and her family began to experience many additional challenges associated with her treatment. Esther was no longer able to attend school regularly due to the number of doctors’ appointments. The amount of medications she was required to take on a daily basis grew dramatically, and the stress on her body resulted in daily headaches, nausea, and further weight loss.
I was cautiously optimistic about Esther’s response to therapy until June of 2008 when she began to take a turn for the worse. She was no longer able to breathe on her own without the assistance of oxygen, and her weight loss was quite striking. Esther very much resisted the idea of having a tube placed in her stomach to help with nutrition and medication delivery, but after an extensive discussion about fashion forward ways to hide the G-tube, we finally agreed to have it surgically placed. Then, in October 2008, Esther arrived in the ICU with a major setback after experiencing two episodes of bleeding from her lungs. Esther did not tolerate the sedation, and moving forward, she was quite adamant about mind-altering medications.
After her admission to the ICU, I had an extensive discussion with Esther and her family in regards to the next steps of her care. We decided to consult with the Dana Farber Cancer Institute and pursue a new, experimental therapy. Although it would not be curative, it could potentially provide more quality time for Esther. The risks and benefits were reviewed with both Esther and her family, and although the decision was difficult (further bleeding into her lungs was a potential outcome), Esther was willing to trial this new therapy. During this transition, she required additional nursing support at home and was no longer able to sleep in her own room. The family transitioned their dining room into Esther’s room as she could no longer walk up and down the stairs.
Over the following eighteen months, Esther fought valiantly and was transitioned between two different experimental therapies. During this time, her oldest sister became an outstanding caregiver and spent a lot of time transporting her to and from the hospital. Esther developed many side effects, including hair loss, fluid overload, rashes, nausea, and headaches, but despite these, she was always positive. Over the summer of 2010, Esther developed kidney failure. Throughout all of her medical experiences, Esther was greatly involved in her medical decision making.
I felt blessed to be present on a warm summer night in August of 2010 when Esther peacefully passed away in the presence of her family due to complications related to her thyroid cancer.
*****
I was asked to contribute a small portion of this text to the dedication of Esther Earl. The medical piece, although a painful reminder of a beautiful life lost, is a part of my livelihood as a physician. I had the great fortune of meeting and caring for Esther and her family. I also faced the difficult task and associated challenges of explaining her long-term prognosis, which was accompanied by great anxiety, shock, and unexpected disappointment.
But the life lessons that Esther taught me and the ability to have been present for this life-changing experience with Esther and her family are truly a gift. To summarize my thoughts and feelings for Esther in just a few words is nearly impossible. Upon meeting Esther, I knew instantaneously that she was a star. She lit up the room with her smile, and she had an ever-present aura that immediately warmed the room. Her sense of humor was dry but endearing, and her laughter illuminated the darkest of days.
Early in our relationship, Esther stood out as a quirky and highly intelligent caffeine-drinking teenager who was wise beyond her years. She always listened quietly but attentively to our discussions, and her questions were not only smart but also medically astute. Even when she was thirteen, Esther was able to respectfully challenge medical decision making and provide thought-provoking inquiries. As our relationship grew and she began to trust me, we developed a bond that was simultaneously jovial and deep with honesty and integrity. Esther was never willing to accept failure, yet she accepted her destiny and was able to express herself clearly and emote with such wisdom and confidence. As her disease progressed, she fought with such poise and dignity.
Esther allowed each and every person to feel unique and special through her blogs and formed lifelong relationships among strangers that would grow over time. Her love of literature, friendship, art, and the overall creative process allowed for her circle of friends to grow stronger, and it continues today. Esther developed her own support structure, one that allowed her family and friends to garner strength in the setting of her own illness.
One has to be incredibly resilient in order to achieve such a success in a disease process that afflicts so few. There is not a day that goes by in life that I do not think of her. Her contribution to my work has allowed me to strengthen my own dedication to my career and personal development. There is not a talk or lecture that I will ever give in which she will fail to be mentioned. Despite her short time with us, her longevity and legacy will forever be present in many different media. For me, I will always know where to find her—in my heart.
One of Esther’s favorite pastimes was to create a work of art and then give it away. These treasures might include something handmade, or hand picked, such as a bouquet of daises, or sewn, or painted, or collected, like a cup full of seashells. Her offerings were always accompanied with a note or longer letter: the true intention of her giving, her real gift. Though the flowers may have withered and though the artwork has begun to yellow, her cherished letters of love endure.
—ESTHER’S PARENTS
Untitled, 2009
Wayne & Lori Earl . . .
It’s your anniversary! Do you guys know what that means?!? You’ve been together/married 23 (or was it 24?) years! Cool.
Well, I’m sorry that we can’t do anything more special or romantic for your birthday. Seriously . . . who wants to have a lame anniversary? Well, it shouldn’t matter if you love each other :)
Parents, I love you two. So much. I am so lucky to have such amazing people raising me. Because . . . really, I wouldn’t be who I am today if not for the love and care of you two. Please realize that you are amazing. I thank God that He blessed us with such loving people.
Cancer is hard. I wouldn’t have made it this far if it weren’t for my family. Thank you, very much for being here for me. It makes it seem less hard.
I know I sound pretty sappy, but I can’t write in pen how much you two are to me. Just know that I love you, and I wouldn’t trade our poor, houseless family full of love for the world.
Please, guys, have a fun day, despite the fact that nothing cool is planned. We love you and wish you the best anniversary ever.
Love you lots,
Your Estee
Dahling, it may be French Mom’s Day,
But WE’RE CELEBRATIN’ IT!
Mommy,
I love you. There’s no other way to put it. You are an amazing woman, did you know that, Mom? I find that us kids are the most lucky kids: we have “no” money—to replace it we have love from two wonderful parents, we don’t have a house—but with you, I think we’re always at home . . . with you, the guardian angel God sent to love us (:D), I think we don’t have to worry.
Mom, I know that I’m just a child, but can I just say that going through cancer has helped me grow. Sometimes, when I ponder just why it had to be me, I get some “answers”? Like, before La Timone, I was not really close to God. I didn’t wanna deal with Him. I liked enjoying the material things that don’t matter . . . But one day I realized, without God, nothing matters. So, I asked Him into my heart. Look, I don’t understand anything, basically, about God except He loves me, He made me, without Him I’m lost. I wouldn’t have realized any of this without you, Dad and Abby telling me to read the bible and reading it to me, too. Thank you.
Another thing I realize is that your friendship is so very important to me, and I wouldn’t have such a close one with you had it not been for all this. And if I had the choice of going back in time, somehow, and preventing the cancer, I wouldn’t, since it would change so many things.
I just wanted you to know that maybe I don’t really care that I have cancer. It’s a part of me at the moment, and I find I’m quite fortunate. What I mean is that thyroid cancer is treatable with radiation, and I’m barely affected by that! I feel differently about chemotherapy. I mean . . . that’s tons of poison, killing good stuff too. I hope they find a good cure for cancer soon, cause well, if I hadn’t gotten sick, I wouldn’t have thought twice about all the patients that suffer from it . . . I would have “ohh . . . too bad” sympathy, instead of earnest sympathy. Sometimes I just feel the urge to scream and have a fit because doctors can’t find a cure for this disease . . . oh, it’s painful.
(Wow! I just realized it seems a bit like I’m talking to my diary, not to you. Oh well!!!)
I just thought you should know that I accept the fact that I had thyroid cancer. It’s fine and I’m NOT in denial or anything, I just know everything’s okay with God and a protecting, loving, caring family helping me through it.
Okay, so, sorry to change the mood but it’s your . . . what is it? . . . 18th Mother’s Day Day!!
P.S. I’m better at writing on paper than talking. Seriously. Even to Angie. Oh, that reminds me . . . you know that even though I can’t open up to [you] as much as I can with her, you do realize that I appreciate your friendship more than a lot of things? Cause I do. And Mom? Babe, I love you, and there’s no other way to put it.
PS. tell Dad I say thanks . . . without him I wouldn’t be here . . . literally!
Happy Mommy’s Day!
Ich liebe dich.
Je t’aime.
+ and some hundred or 10 other languages
Your’s Forever,
And ever,
And ever,
And ever,
And Infinity,
<3 Estee <3
Mother and daughter,
PLYMOUTH, MASSACHUSETTS, 2003
Beach Boardwalk,
SANTA CRUZ, CALIFORNIA, 2004
Life is going ok right now.
Really, it is.
Mom & Dad had their anniversary on June 2—but they had their anniversary dinner in town on the first. I wrote them a card and left it by their door during the night. They said they “loved” it.
Then at about 11 PM—June 2—, me and Angie decided to do something for Mother’s Day—June 3. (the rents were in bed—asleep) We used white paper & cut out “HAPPY MOTHER’S DAY!!!”—2 letters per each page. We set them on the dining room table, with a card I wrote Mom (long one!) & a little note Ang wrote. We decided it looked too plain, so we went out the gate and got lots of flowers (some from peoples’ yards . . . :D). It was soo fun cause it was about 12:30! And we were ditzy & blonde. Funerooo.
You know, I have a really great attitude about all this cancer thing. I smile, laugh and joke about it. I only have meltdowns like, once every month. And . . . I normally only have them in my room—away from people. Angie’s never even see me cry about it but it really is hard. It’s not like anyone’s here to comfort me now. We’re stressed. We’re going to another country tomorrow . . . continent, actually.
What am I supposed to say when people say like, “Toughen up, you’ve only been through surgery,” just as Angie just did. It’s just . . . surgery doesn’t seem the problem. It was like, 6 months ago. Surgery is gone and done. But I still have cancer in my body. I’M the one that God didn’t heal. I’m not mad at him, though. He has reasons for everything. But . . . I just want someone to ask how I really feel. I still hurt inside, no matter how happy I am on the outside.
Sorry that I seem so depressed when I talk to you. It’s just . . . you’re the only ‘person’ besides God that I can talk to. I’m so glad God loves and cares for me. It makes me feel really safe . . . REALLY. Sigh. I’ve gotta go clean now.
<3 Later xoxo
Evangeline, Abraham, and Esther,
La Grand-Place,
BRUSSELS, BELGIUM, 2007
It’s now June 22 and we’re in the states! Lots to tell . . .
So, I woke up Thursday (21) at 6:40ish, though I wasn’t that tired since I’d fallen asleep before 11. Anyway, we went on the 8 o’clock bus to Aix, got on the navette to Marseille airport, and were there soon enough. Then we got ready to go to the first plane to Munich. So I was pulling two little suitcase carry-ons, carrying a little duffel bag, and my mickey. So I was getting really tired from all that pulling, and everything was getting heavier, and heavier, so I stopped and said, “Mom, I can’t carry all these bags!” of course whining a bit (emotions, sleep deprivation). So Mom says “Daddy, can you pull one of these?” and he comes over and goes, “Oh ESTHER! Don’t do this stupid whining thing!” and it hurt. I got this stomach-clenching thing I’ve been getting lately—when mad, or jealous. And I got sad and angry, and Dad came to get the bag, all angry and flustered. As he grabbed the bag, I pulled away with my now “only” 3 bags, and said “Stop it, Dad!”—my voice cracking.
I went to the check in/waiting/BK room, and then walked to the bathroom (without the bags, duh). I went pee, and cried for . . . 2 (?) minutes, then sprayed water on my face and as soon as I had gained my composure enough, Angie came in.
“Are you ok?”
I walked past her, going out the door. Taking my anger out on her, I guess. “I’m fine.”
I walked about 2 feet and then went back in the bathroom, trying not to cry. I burst out in tears, and Angie hugged me, for a long time.
It was really comforting. Really. I’m so glad I walked back in there. I said a bit of what had been on my mind lately. Such as the fact that I feel so alone. And this whole thing is so hard. Cause, it really is. I can’t . . . well. She is an amazing friend and sister.
Love, intensity, value, passion, rejection, hope, care, failure, joy. What life throws at us never makes sense. Thinks we’re at life’s dispense. How long we wait for life to change us. How long we should try to change ourselves. The weight of death, the weight of fear. The burden of stress, the pain is here. Never to know, never to guess, never to know, how much mess. Do not show care, do not have love, do not feel joy, or you may change.
The weight of death, the weight of fear, the burden of stress, pain is here.
Never to know, never to guess.
Never to know, how much mess
Do not show care,
do not feel joy,
do not have love,
life’s not a toy
and yet we feel,
we have,
we show,
who knows . . .
I do not know.
I do not know.
(2007) September 9
Wayne, Papa, padre, papi, daddy . . .
Daddy. . .
Happy 48th!
You’re almost 50, almost an old guy! Wrong choice of words, I mean a MATURE guy.:) Duh.
I just wanted to let you know, Dad, how dear you are to me. You’ve watched over me and loved me through everything that has happened. Like while I was in the hospital bed—my hair, a wild mane, my face, white as the sheeting covering me, tubes in my nose, arms, sides . . . neck at one point! Not to mention my legs were as hairy as yours! :/But throughout this whole episode, you held my hand and prayed and cared for me. And loved me. And this is all I need to know you are the most amazing dad. Who knows, maybe someday this picture of me, sick, tube filled and peeing in a bed pan, will come back one day. But if it does, I know you’ll be there, helping me understand it’s all worked out in God’s eyes; helping me know God loves me even more than you and Mom and everyone put together, times infinity. And Dad? A couple more things . . . without you, I would be a poor, sick, hopeless, girl, but instead I’m just a sick girl. But I’m only sick in my body for the time God wants me on earth, once I get to heaven I’ll understand my time on earth was a piece of my time—not even. And that the second God’s ready for me to party with him, all the sickness goes away. So that’s what gives me hope. Daddy . . . I want to say that I know how much going to work in Switzerland meant to you, how much you were ready and excited and willing to go, and I’m quite sorry that I messed up your plans—but thank you for giving it up for me and everything I need here, in Boston showing me you wouldn’t give a second thought about going after the doctors told you what I’d need means so much to me. Just . . . thank you, Daddy, thank you. So much. For everything.
On that note, I’ll switch to a different subject.
Happy Birthday!
I hope you have a fantastic birthday, Daddy. I love you too much to express.
xxoxoxoxoxoxoxoxoxoxoo
Your daughter,
Esther Earl
Father and daughter,
BOSTON, 2009
September 17, 2007 (Monday at 12:11PM)
You know, I think for a while there my entries were happy ones, the ones where I was like, “yes, life isn’t so bad, ladida.” And the times when I thought that after all I’d gone through, life was A-okay. Well, life is, I guess, not that bad, but I feel worse than ever. I feel tired, lazy, helpless . . . I don’t know. Today I’m feeling sick—my head hurts, my tummy aches, I feel flushed, but I took my temperature and it’s a normal 98.0. So yeah yesterday was Daddy’s birthday and it was good. On Friday I had started making a cross-stitch of a duck, and (in church!) on Sunday I finished. It had a yellow duck with a blue ribbon on his neck and it sayyyed [sic] . . . “I’m ducky for you, DAD!” or so. I had sorta followed a little duck pattern, so mmhmm. Dad kinda liked it. We also gave him a napkin holder (*snicker*) and a back scratcher (*choke*) and I gave him a letter that I cried while writing (*aww* ;))
Ahh yes, here comes mister serious for a visit—and look he brought Mr. Sober and Mrs. Pleasefeelsorryforme! Wow, what a party. :’\
A while ago, I think on Wednesday the 12th . . . Mom and Dad went to the doctors. They came home with some news! Yeah.—The “!” just exaggerates how upset I am. >: (Quoth Mom (as I can remember) who quoth the doctor. Quoth, “We found more cancer than we suspected in your lungs. Our plan is to do a large dose of radiotherapy in January, to give Esther’s lungs time to re-fix themselves.” Unquoth. Of course that was a ginormously brief summary, it was way more hesitant, emotional, longer, more detailed, but yeah. I didn’t cry until the ’rents left the room after telling me. Me and Angie (I told her it all) hugged and cried. :\ Anyway, what it means is the cancer is more advanced than they thought—more spread. Oh yes, I also have a teensy kidney stone. 
Doctor Jessica Smith said it will most likely dissolve and I’ll “urinate it out, without noticing . . . may experience little or no discomfort . . .” but I’m really worried for it.
All yesterday I read some of Exodus . . . it was interesting. I read of Moses and God seems so stern. I didn’t know he was so strict! Like with the pharaoh . . . why did he cause him so much pain?? Couldn’t He (God) have used Moses to open pharaoh’s heart?
Hey . . . tru? I don’t want to grow up. It’s so hard. Abe’s so oblivious to the pain we experience once we understand more . . . He’s so lucky! Do you know that—I’ve been noticing this for a bit, but—people/adults talk, and I now find their discussions interesting. But they talk like . . . well, here’s an example . . . “So I talked to Bob today, and he said Aunt Ronda has cancer now. Yes, terrible.” “Joy said Opa’s cancer has spread!” “Esther, did you know Keri’s mom’s dad has cancer now, too?” and cancer pops up in so many conversations and the ’rents talk so openly about “he died of this cancer, and her of that . . . ” that I feel so sad, like I’m gonna die! Oh, didn’t I tell you? Before, when I had NORMAL THYROID CANCER, I fell into the 99.6% >—(around there) of kids who cure fine. And OK I fall into the 0.4% of kids who cure, and then it comes back again sometimes and they die, or they die right away, or they are as Mom put it, “you fall into the ’unsure category.’” Fun, eh? So I could die. Scary . . . But I feel so peaceful. I truthfully think a lot of the time it’s worse for the friend or family member who doesn’t have cancer, and isn’t used to having a different person with sickness and weakness, or when they die . . . But oh it’s just difficult being so different. I don’t mind as much as I used to, but if it hadn’t spread, I might’ve been cured now . . . so it’s getting to me a bit again. Other than that were all fine! : D tired—g’night.
xoxo <3 Esther Earl
Bubble Girl,
MEDWAY, MASSACHUSETTS, 2009
Hi : ) sorry about being such an emo-sounding person, it’s just I’m always quite depressed at night, and also you’re the only person . . . thing? . . . I can release my sadness to.
Doctor Smith e-mailed Mum and Dad today, telling us she’s scheduling an MRI, a date with her, I THINK with the physical therapist and also someone else. I looked up MRIs on Google Images and it looks like the picture as I can draw it on the next page. I’m nervous for it not only because I have to go through some claustrophobic thing, but because there’s a chance it could have spread. And it’s already so, so hard. Today I said to Mom, “What would happen if I have cancer in my spine?” And as she talked about how serious that would be, and how if it spread *pause* it would first go to leukemia . . . it hit me that I have cancer.
CANCER! The kind of sickness that people die of—often! It’s not like I dwell on it that much—but I sure don’t like the fact that I do have cancer. And I might die. It’s more serious of an illness I never thought I could have—not even during surgery. I mean right before surgery funny enough I didn’t feel too sad. I was just thinking of when I went into surgery—to switch subjects. And right before I did, Opa prayed and prayed, and Mom and Dad did too, but I remember feeling so full of peace. I remember that I talked/prayed to God while I lay on my surgery bed thing, unable to move because the shunt in my side hurt. And I remember telling God that whatever happens, happens. I remember telling myself “He’s in control.” I remember that I didn’t even feel nervous going in—just a little sad about maybe (if things went wrong) never seeing my family again. Ha, I just had a sobbing attack. I was just thinking how I don’t know if I’ll live. I’m so scared. God means so much to me, but I wish He could heal me. Is that vain? selfish? stupid? That I want to be better is, I think, any sick child’s wish. You know how God especially loves children? I’m a child—right? Well, I just want him to lift me up and hug me, like in all those pictures of Jesus and the children . . . Is that too much to ask for? Maybe so, I don’t know. I’m off reading Esther in the Bible—there’s one verse that I’m especially looking for.
GOODNIGHT! <3 Esther
Esther 8:3 “If I have found favor with you, O king, and if it pleases your majesty—grant me my life—this is my petition.”
things I’m thankful for:
- my cats!
- my family!
- oxygen machines
- air conditioner
- weight
- God
- our house
The CaringBridge site for Esther began after she had come precariously close to leaving us during an extended stay at the hospital in October 2008. As she lay unconscious over several days, many people became aware of the seriousness of her illness for the first time. Since her diagnosis, we had communicated updates with family and friends through e-mail and phone calls, but suddenly there were far too many new sympathizers! Lori looked around and decided that CaringBridge would be the perfect vehicle for getting the news out about her condition more efficiently. On November 1, 2008, Esther’s father wrote the first Guestbook entry:
Dearest Estee Star,
I love you loads and loads and you are on my mind even for those moments when I’m not by your side!
Always and Forever,
Daddy
Esther’s CaringBridge continues to remain active and people are still writing encouraging notes to her and to our family. As of November 1, 2013—five years since opening the site—there have been over 84,000 visits.
At Children’s Hospital,
BOSTON, MASSACHUSETTS, 2009
Saturday, November 1, 2008 12:30 PM, EDT
The last week has seen some good improvement in Esther’s energy level and appetite. She ate servings of Mom’s stuffed grape leaves, and last night enjoyed African curry! Talk has been of sending her home next week to spend some time at home, once the logistics of getting her back and forth for hospital visits at her high oxygen settings is worked out. We’d love to have her home, and she is so anxious to see her kitties, Pancake and Blueberry.
Monday, November 3, 2008 11:28 PM, CST
Okay, so this is the journal on this site! Apparently it’s where we’ll be updating the main things that go on with me (Esther). Most of the time mom (also known as Lori) will be updating it, but I want to say hi sometimes too. :) Even if I don’t always respond or write stuff, I’d just like to say that I love all the messages and cards and thoughts and prayers and all the people that think about me, and us. I’m so thankful for everything. Thank you all so much.:) So just to say really quickly that I feel good, and going home tomorrow is being talked seriously about! Yes:D
-Esther
Me and Blueberry,
FALL, 2008
Tuesday, November 4, 2008 10:18 PM, CST
On this election day, as you await the results with either joy or fortitude, here’s something to REALLY celebrate!!! Esther Earl is home tonight from the hospital! In sharing with a fellow teacher today, I stopped in mid-telling to exclaim—“This is what happiness feels like!”
While Esther’s diagnosis is unchanged, and her oxygen settings are very high (5 liters), the doctors felt she was stable enough to come home as long as she is able. We are thrilled, and she savored the freedom of leaving Children’s Hospital after 32 days of incarceration! Her kitties, brothers and sisters welcomed her home, and we plan to enjoy each moment God may give us with Esther, whether that is a few months or years. Rejoice with us!
Thursday, November 6, 2008 5:40 AM, EST
Early Thursday morning, and Esther has been holding her own here at home! A few panic moments here and there, like the fuse blowing 4 times in a row in her room due to all the machines going at once—some adjusting of what’s plugged where, and so far so good! (We’re also getting the landlord over to see if he can update the electricity upstairs in this old house!) Then, Esther woke me at 4:30 this morning because her oxygen count was really low—we checked it out, and her biPAP was going, but the oxygen wasn’t connected. Oops!
Esther’s visiting nurse yesterday said her numbers look good. We got to practice French with her, since she is from Haiti. Thanks to all of you for your encouragement: spiritual, emotional, and financial. Happy Thursday!
Saturday, November 8, 2008 3:51 PM, EST
Saturday—We’re getting used to our “new” routine, making sure Esther has her medications at the right time, making sure everything is hooked in and turned on! She had a LONG hot shower yesterday, and feels like a new woman. Amazing how we can appreciate small things as luxuries, when we’ve gone without them . . .
Some have asked what Esther enjoys. She likes reading Archie and Garfield comics, and teen & fashion magazines. She plays computer games on her Mac, and has a few favorite TV shows like “What Not to Wear,” “Jon & Kate + 8,” and “Grey’s Anatomy.” She loves painting her nails (latest models were white, sporting dots like dice!). We never know what new activity will catch her fancy—in the hospital she did 8–10 huge puzzles. We’re just so happy to see her enjoying life!
Sunday, November 9, 2008 1:29 PM, EST
Thought you’d enjoy Esther’s thoughts on what makes a good nurse:
• They can get blood out of your veins on the first try.
• They don’t wake you up in the morning.
• They know how to put on and take off duoderm without taking off your skin too.
• They don’t talk to me as if I’m a baby.
• They don’t wake me up when I’m sleeping.
• They’re patient even when I’m grumpy.
• They listen to my requests with respect.
• They don’t wake me up!
Most of the staff at Children’s Hospital were wonderful, and we appreciate all they’ve done for us. The few who were challenging gave us opportunity to grow! So thanks to them, too!
Tuesday, November 11, 2008 11:25 AM, CST
MAKE A WISH
Esther had a great day Monday! It started off with our first appointment at The Jimmy Fund cancer clinic in Boston which was a positive experience as our primary caretakers there are a joyful duo, perfectly suited for Esther. All told, she was off the Bi-pap machine for 16 hours, drew some cool pictures for friends, ate some Chinese food, texted big sister Abby and visited long and well with the dog, sundry cats, mom, dad, Abe and Angie.
Last week the Make a Wish people stopped by but couldn’t get any ideas from our Star. She simply does not wish for anything—except to be well of course. Recently she dreamt that she was in France walking briskly along with her sister when suddenly she noticed she didn’t have her oxygen tank! She began to panic when she happily realized that she no longer needed one! That’s the stuff of wishes . . .
What do you wish for when you already have all you want and need? She said she’d like another cat but we told her she’d have to trade one in first! (Had we the room, she’d have many and varied members of the animal kingdom.) She mentioned she’d like to visit India because she loves the color and cuisine there, but she can’t travel. She’d like to swim again . . . There isn’t anyone she’d like to meet, nothing she longs to have. Her ideas are always about what she’d like to give and not get. Any ideas for such a hard case?
Esther’s room,
QUINCY, MASSACHUSETTS, 2009
Wednesday, November 12, 2008 7:26 PM, CST
Hi there.:) Quick update to let you know I’m doing good! I had a hospital appointment in Children’s on Monday, and that went really well, even waking up at 8am was . . . okay. Hahaha. And Tuesday some friends came and visited for a while, which was wicked fun. We took a lot of pictures and played Scene-It, and hung out.:) Then Wednesday and today I’ve just spent time with the family, watched tv, played games and stuff. So yeah, things are going good, I’ve been feeling alright. I love reading all the messages and cards people send! Also wanted to post a link to a site (it’s called Flickr) with many more pictures of me and the family. Go here to see them!
Love Esther
Friday, November 21, 2008 6:07 PM, EST
Esther had her second visit to the Jimmy Fund Clinic yesterday. It was a four hour, big excursion for her, since she doesn’t leave the house except for those visits. Getting down the stairs, out to the van, into the hospital, blood work, check up, and back home, all in about 30 degree weather . . . whew! She does have constant throat discomfort and they said her recent, and intense stomach pains are probably due to the acidity of the chemo drug she’s been taking. Unfortunately, for the first time her red blood cell count is now down—undoubtedly why she’s been more fatigued than usual. So next Wednesday morning we’ll be going in at 8 am for her first 2-3 hour blood transfusion. Some have wondered whether Estee is in remission; no, that would mean that she was cancer free. She is unlikely to ever experience a remission and it is hoped that the present chemotherapy will stop further tumor growth and possibly even destroy cancer cells. But that’s a best case scenario and her medical team(s) really doesn’t know if she’ll live sixty days or sixty years. They have been clear that it will take a miracle for her to see adulthood. We’ve talked about it, about dying, her odds and she’s aware of what we are writing here. Dad reminded her about 2am yesterday that to be absent from the body is to be present with the Lord. For a young woman who wants nothing more than to be present with her Lord, that’s not a bad deal. Of course, she, and we, prefer she stick around to bless her great-grandchildren! Our family is really looking forward to Thanksgiving. We’ve decided to fix just a tiny turkey breast so that we can focus on the fixin’s that we really love! Roasted veggies, lots of mashed potatoes (this is the one thing Esther’s craving!), olives and other condiments, and pumpkin muffins and pumpkin pie. We hope all of you consider God’s blessings along with us this holiday season.
Thursday, November 27, 2008 12:11 AM, CST
Dear Friends,
It is now Thanksgiving, a day to gather with friends and family and together express gratefulness and appreciation for our many blessings. Today also marks exactly two years since we first heard the words, “Esther has cancer.” We’ve been thankful for each day we’ve had and especially encouraged by Esther’s recent blood transfusion which pushed her numbers from 23 to 38! Also, after two full days of antibiotics, she has begun healing from an infection and is now feeling much better. You can see Esther sharing various thoughts in her own quirky way by clicking the link to youtube here on this site.
We also answered the door today to learn that a friend had submitted our names to a local radio station and we’d been chosen to receive a full Thanksgiving meal! So, we will be cooking an entire turkey after all!
Monday, December 1, 2008 6:30 PM, EST
I’m glad so many are interested in our Esther. The many notes and expressions of caring encourage us all. Wayne and I think of each of you, even if we don’t respond with individual emails back!
Thanksgiving was emotional for me. It was supreme happiness to be together as a family, and to share lists around the laden table of what we’re thankful for. But I’m often overwhelmed by grief that Esther is so much worse than a year ago, even. Last year we went to the Quincy Christmas parade and to a Christmas farm to cut a tree for the season. This year Esther’s only outings are likely to be doctor visits, although we’re hoping to get her to Angie’s Holiday Concert at North Quincy High School. We should be able to take her in a wheel chair, with oxygen in tow . . .
The reports from her blood work today are good, with red blood cell counts staying up this time. She has a continued infection near her g-tube site, and hasn’t been able to eat much because the rash on her face is now internal as well, and it causes too much discomfort to swallow more than necessary. We may have to take her in to the Clinic tomorrow to check things out and see what medication they can prescribe for these side effects. Lately she’s been enjoying her new journal, and we’ve caught glimpses of drawings of her cats in her sketch book.
We are consciously thankful each day.
Selfie,
BOSTON, 2008
Accio Pooh!
QUINCY, MASSACHUSETTS, 2008
This is my new journal.
Right now I’m sitting here watching Jon & Kate Plus 8, which, by the way, is my favorite show. At the moment the Gosselin’s and all their 8 kids are going on the Oprah show to talk about all their problems.
I read their book, Multiple Blessings, about a week ago. It’s mainly by Kate and her good friend Beth Carson, and it’s about being pregnant with sextuplets, and going through all the financial and emotional and physical difficulties. The book is full of stories of their faith, and many times when they basically gave up, but God came through! Those stories inspire me and made me remember it’s God who’s getting me through all MY difficulties.
What are my difficulties? Hmm. First of all, and definitely most difficult, I have cancer, and I’m sick. Second, our money and income stuff is slightly in shambles; though it may not be, I never really hear about our money stuff. Third, I guess there’s not that much of a third, just that I’m getting older, I guess. So, let’s talk about that wonderful cancer topic again . . .
Ah, I’m not sure exactly where to start. I’ll start with the whole friggen story! Yeah, that’s a great place to begin.
Let’s see, when I was twelve, actually no I was eleven, we were living in Plymouth, MA, duh. So then Mom & Dad decided it’d be just grand to move to France. We moved sometime toward winter, was it November?, to a town called Albertville in the Alps of France. That was an . . . experience. Maybe you’ll hear about o’l [sic] Albertville another time. After—wait, no. While living in Albertville my all-French 5th grade class went to a pool for Gym and we had to swim—I remember feeling so out of breath while having to swim four laps without stopping. Also, we had to run laps around our school yard, and I thought it was weird that I had cramps on my rib cage, but I thought I was just out of shape.
Also in Albertville me and Angie began walking on walks around town, basically at least every other day. We continued doing that all the way until we moved to a new town in France called Aix-en-Provence.
One time, somewhere between the summer and fall, we went on a long walk to a park site sort of nearby. We brought the keys from our apartment and were just getting ready to go inside our apartment again when we couldn’t find the keys. Suddenly I remembered leaving them on the grass and Angie and I walked part way back. Angie told me to go the rest of the way by myself. I got the keys and went back home.
My side hurt and I was extremely out of breath. I caught my breath in an half hour or so.
That whole losing-my-breath, coughing, pain-in-my-side thing started maybe in September or October. I thought the pain was regular old exercise pain or period pain. I also thought I was out of breath because I exercised too much.
While we lived in France, Abby was going to boarding school in Germany that was English speaking. Me, Mom and Angie went to visit her for two or so days.
When we got back, Dad figured any cold or trick-to-get-out-of-school that was causing my cough would be gone. When it wasn’t, Dad said, “Let’s get an X-ray.” So we did just that, and the X-ray showed loads of fluid in my lungs. The doctor said to go to the hospital. >:,S
We went to the hospital, and I think it was the next morning, they sent me into surgery for a tube in my side that would drain out the liquid.
Going in was definitely scary. I just laid on the bed and prayed so hard, asking God to just take care of me. A very nice surgeon lady held my hand while they shot sleeping medicine in.
Kandern, Germany,
JUNE, 2007
After surgery, I slept for the next day or two, in and out of consciousness. The tube itself was like a quarter of an inch, and was in my left rib, going through to the lining of my lung (not my actual lung, ha!). It drained a load of liquid.
A few days later, in the hospital still, they had tested and poked me, trying to figure out why I had liquid. They thought it was TB or pneumonia, or something like that. However, on Thanksgiving, the doctors came in and said I had cancer. **crap**
I’m not sure when it was, but a little bit later I had a lump in my neck removed, along with my thyroid and one (or two, or three?) para-thyroid.
A few days later, I was moved to La Timone, Marseille’s Children’s Hospital. They were more experienced with cancer in children, however thyroid cancer in children is especially rare, so they weren’t that experienced.
I had a dose of radio-iodine treatment, which was a pill that didn’t have many side effects. About a month or so later (maybe 2 months?) I had another dose, and a while later another.
They planned to do another dose when we got back from America, where we were going for two months? But it turned out we ended up staying in America for forever.
So coming to Children’s Hospital was a lot different than La Timone because they seemed to know what they were doing more. I had a dose of radio-iodine therapy, much larger, and worked on feeling good.
Then, 2 months ago, just a week or so away from another radio-iodine dose, I felt a large rumbling in my lower left/middle lung, and figured it was another wheeze. I was on the toilet peeing, so I breathed in and out and it rumbled a lot. I coughed, expecting mucus, and instead saw blood.
You don’t know what it felt like to look in my tissue and see blood. My heart thudded so fast, my stomach sunk and I got light-headed. I yelled for Mom, but I was so worried my voice cracked. She heard and Mom and Dad came running up. After coughing some more into a bowl, Dad took me to emergency. By then I was feeling fine, still unnerved, but fine. My oxygen was cranked up from 2 to 4, but I was fine, fine. I was checked in and they said I bled mainly because being off my thyroxin (in preparation for radio-iodine) my lung tumors had become über active.
A few days later I had my radio-iodine dose. I was fine for the first day. Second day I was headachey. Third day I was on a new air machine, “BiPAP,” and on morphine. I only remember sleeping, Mom came in and woke me and said Abby and Angie were there, so I drowsily hung out for a few minutes with them. Mom and Dad stayed in my room, sometimes switching and going out for a while because of my high radiation levels.
Apparently everyone highly, highly thought I was going to die. That’s why, despite such high levels of radiation, Mom and Dad spent so much time in my room, and Abby and Angie came to see me. But I didn’t know I was close to dying, I just figured because this dose of radiation was so much higher I was feeling quite sick.
Fortunately, praise God, I made it through! It wasn’t until like a week later, in the ICU where I was staying, that Mom told me about the dying thing. Hearing that made me think more about dying, death, heaven, hell. I’d always thought I knew how scary death was.
I thought you died, and then went to where you were supposed to go, but I didn’t think too hard about it. Now, being at a point in my life where doctors say I’ll live 6 days, or 6 months, or 6 years, or 60 years, they don’t know, I’ve had more time to say, if I died tomorrow, what would happen?
Even having all this time to think, I don’t think my views of death have changed too much. I guess now I figure you die, and then you have a sense of looking at your body from above, as Dad has said when we’ve talked about it. And then maybe you meet someone who takes you to where you go. Or maybe you’re already there, I don’t know. I wonder if anyone on earth’s idea of death is spot-on.
Since I’m sick, obviously, and in a way that really keeps me room bound most of the time, I don’t see many people. Part of that is that I don’t want to, so we ask people not to visit. I mean, who wants people they barely know to come into their house and be like, “How are you?”? That’s just weird stuff that has happened to me before. Haha :\
But I also feel like I’m cut off the world. One day a week ago or so, my best friend Alexa and my good friend Melissa who I met through North Carolina, came to visit for 3 hours. It was pretty awkward at first, but after a while it was so fun!
So I would like to have some form of human contact in my life, but the want for social stuff comes and goes spontaneously (if that’s how you spell it . . . ). Maybe one day we’ll figure this out.
. . .
Okay, so this is slightly embarrassing, but when I’m bored, (aka every second of every friggen hour) sometimes I film myself doing something on the computer and post it to . . . YOUTUBE!! How lame am I? Oh man, so lame. But so far I have an intro video, titled, what else?, “Intro to YouTube,” a “favorites” video where I show my favorite things, and now “That’s so Funny” where I talk about those annoying people who say “that’s so funny” all the time. Even when it’s not.
When Mom and Dad bought this journal for me (which I titled Daisy, though that may change), they also bought a sketch book where I’ve been drawing some stuff. Recently I drew an eye, eyebrow, nose and lips on a page. It’s supposed to look like half of her face, not many detailing on the nose and rest of face. I must say I’m really proud of the eye. I was thinking when I can’t think of what to write and the mood strikes, I’ll try to redraw it here.
Ugh. Ugh, ugh, ugh.
Do you know what happened the day before yesterday? I had a migraine. Then yesterday I went to the hospital, where, by the way, Annette my nurse said, “Whose blood was drawn here? Your numbers look amazing!” :) After getting home I was so completely exhausted. Then later a migraine popped up. I took a 4 hour nap and then was up for a while when, another migraine popped up. Joy. I don’t know what’s causing them . . . tiredness? Chemo? Stress? Tumors? Ahrgh.
So, I’m embarrassed to say this mainly because I know one day Dad and Mom will be reading it, but too bad. You know how my life is full of problems teens shouldn’t have to deal with? AKA cancer? Well, when I get to do “normal” things, like watch a movie with my sisters, get out of the house, or just get downstairs, I tend to feel better. Tired, but good.
And lately, I’ve been thinking about boys, uh-oh. It was weird, cause I had this dream where I kissed a boy (I don’t know who), and then kissed him again, and that’s why I have been thinking about boys. So yeah, lately I’ve really, really thought that if and when I die, I’d like to have one more normal teen thing, which is kissing a boy. =) And I feel stupid thinking that because in the midst of wanting to spend more time with my family and becoming closer to God, there’s this huge want for a first kiss. So hit your knee and call me Sally I friggen want a kiss. It’s something normal I may never have, another thing I’ll miss out on. Sigh.
I can’t think of what else to write. I’m afraid to write random thoughts cause this book is gorgeous and I don’t want to ruin it..! :D
Oh! CHRISTMAS! SO EXCITED FOR IT! I’ve kind of thought of what I’d like. S’quite a bit of stuff, shall I include it? Yeah? Okay. ;)
List: 1. Matt and Kim CD (self titled)
Phantom Planet CD 2. Makeup 3. SOCKS!
4. Matt and Kim Grand CD (not out til January . . . )
5. gift cards/money =)
6. Regina Spektor CD
Sunday, December 7, 2008 8:07 AM, EST -Lori
It’s early Sunday morning, and a light snow is falling! Our first this season. The boys couldn’t sleep in, of course, and are already out playing in the backyard, with my frequent “Shhh!” so they won’t wake up the neighborhood! I’m on Craigslist trying to find a futon since Abby will be with us over the Christmas vacation.
Esther had a good visit at the Jimmy Fund Clinic Thursday. Her nurse practitioner came back in with an excited, “Whose blood is this? It’s perfect!” We’re so glad her body is showing good signs of underlying strength. She came home with two new antibiotics for blood in her urine, and a lymphnode in her neck that seems infected—better than it being another tumor, though! Also she has a medication to take every eight hours that will coat her esophagus. Last night she was already able to eat more than she has in a week or two, since the pain had gone down a lot. Last night Wayne was plotting out all of her meds on an hourly chart—complicated, since some require an empty stomach, some you can’t eat after for 2 hours, others must be taken alone . . . it requires a degree to figure it out!
Later today Wayne is going to pick up a cut tree—no tree farm this year. Then we’ll bring Esther downstairs to decorate tonight. A fire in our beautiful old brick fireplace, and some freshly-baked pumpkin muffins with cider are on the agenda!
Daily Booth photo,
QUINCY, MASSACHUSETTS, 2008
You know what’s kind of weird?
Every night, almost, while I’m going to bed, I talk kind of to myself and kind of to God (my form of prayer, I suppose). And while I’m talking to God, it’s no doubt I talk of my pains and also of cancer. That is not the weird part. The odd part is that I usually end up having tears roll down my cheeks, but I’m not sure why since daily I’m not (too) sad about cancer. Maybe it lets off some of my emotions that normal* people direct in everyday social situations . . . I have no idea.
So to change the subject, lately I’ve been thinking about my identity. Why, you ask? (Maybe you’re not asking, but you’re my journal, so you’re gonna ask!) Well I drew this very not-so-good self-portrait of myself the other day, and Abe saw it. He was like, “You drew that? Without any picture?” and was slightly in awe, which was cool that at least Abe was . . . in awe. And then he said, “but where’s your nose thing?” pointing to my nasal cannula. To me it seemed more insightful than something that bothered me. However Mom heard, and Dad too, and later Dad said Mom cried.
It is kind of sad I guess, to see my energetically, enthusiastic 5-year-old brother not remember the days when he was 2/3, and I would take him to play on the bars in Albertville, or he would watch me do flips all around the bar. But I kind of think of Abe as not remembering, but everyone else as. But now I’m realizing that it has been over 2 years, and memories began to fade, and are replaced with making a “HUGE” trip out to dinner, or something. I hope not all the memories are bad. :\
Another thing Abraham said which was funny and not sad (woo!), and also quite original, was, while we were decorating the tree, Abe said, “Oh! Just one more!” as he tried to pick up Mom. It was funny funny.
Oh yeah! We decorated our Christmas tree last night! Dad and the boys went to Home Depot and picked a pre-cut one that they brought home and set in the corner of the living room. We then ate dinner, which was stew, and, yes!, I did go downstairs to eat with everyone! Minus Abby though. :P After dinner Angie went to bed and we all decorated the tree. Abe loved the ornaments of him*, and Graham seemed to like hanging the ornaments, “down low so they would fall on the tree skirt not break” he said.
So that was loads of fun! I wish Angie had stayed upstairs long enough. However she has a “life.” Two nights ago she “slept” over (aka stayed awake over) her friend Michelle’s house. Apparently she was tired last night, go figure.
I think that because I have cancer, I spend a lot of time with the ‘rents. And because of that I think I get along best out of us sisters, because of it, with the parents. Abby does, I guess get along with them but doesn’t always respect them. I think Angie respects them even less, just by the way she treats them, but maybe not. I’ve never asked her . . . But anyway, the way she treats them gets on my nerves lately, and because of it sometimes I don’t say that much to her, and then my head says, “don’t do that Esther.” So I’m nice to her again. But by that time she’s gone back under “her life” rock, which she would do anyway if I were nice or mean. I’m usually always nice though. I think I just completely contradicted myself there, hah.
*Normal?! What the heck is normal? Healthy is, I guess, my definition of it. Apparently.
* ego maniac! Nahhh :D
December 11 / December 12, 2008
It’s 2 in the morn’!
Wow, today was one of the most eventful days in a while, for me. It started at 9:30 am, I woke up feeling nauseous, so I called Dad and he came up to my room and gave me my nausea helping pill. Then I got myself all pretty, got ready, and me and Dad left for Jimmy Fund at 10:30am-ish. We got there at around . . . 11:30. I got my blood drawn, got new high scores on the Webkinz games site (GEEK!) and peed in a cup. When they drew my blood they missed friggen vein and had to do the other freaking arm.
(You know, at one point I would have screamed and cried if they tried to take my blood; a bit later than that I would tear up and have to take large breaths; little bit later if you tried I would get watery eyed when it went in; and now when they do it, I take a long breath in, I don’t know why, and they do it. It really just pinches.)
What did annoy me about this time—other than missing the “freaking arm”—was that one of the nurses was like “does that hurt?” as she’s moving the needle around in my vein. I did my best duh/confused face and she kept asking. I know it’s her job, but of course it hurt! Afterward, with my Band-Aids all on and blood drawn, she’s like, “does it hurt” pointing to the Band-Aids. I said no.
It’s insane how little things that are meant by no means to be personal, or even close to what I’m currently worrying about can make me angry, or sad, or lonely, or happy. Like, well, I can’t think of any examples right now. Oh well, if I do I’ll include it in here.
Oh yeah, I was talking about my day. So after I did all that I weighed (88.2 POUNDS!!) and got my temperature and blood pressure. And whenever they do blood pressure, they wrap the wrap part around your upper arm and you (me . . . ) straighten my arm and it tightens so hard—so hard, in fact, that I get cuts from it. Not bleeding ones, just under my skin. Then the blood pressure is unwrapped, and mine’s been good. Which is good, cause for this new experimental drug, high bp is common, so they’re watching mine.
After vitals, Annette came in and we went over my pains from toe to head. Lower body’s fine, arms are okay, my g-tube is still acting odd, it’s slightly infected. My throat/neck still has that weird lump thing going on. I’m not sure what it is, neither are they. My head has a new pain, I don’t know how to describe it well . . . Hm, the back left, near my ear, and down toward my neck, too, I get this come-and-go pulsing kind of pain. It comes when I change positions, and it’s like, “no pain, RUSH OF PAIN, no pain.” It’s rather odd and it was yesterday and day before, more annoying than painful, however now it’s been hurting more. Yeah.
So after we went over that we chatted a little, I saw Dr. G! He’s funny. He definitely is a cheery person that makes you feel better just by seeing him. Plus he treats kids and adults the same—same tone. No talking to me like I’m 5 years old, which is quite enjoyable. After that, we, would you believe it, got in our car! Then me and Dad decided to go to OLIVE GARDEN! So I ***walked*** from the car, into the restaurant, down past many seats, to our seat. That is a load of walking my friend! Like no joke. We ate their delicious chocolate cake and their wicked good salad! And we just talked about whatever, nothing deep! It was nice hanging out with Dad. He’s a pretty cool guy—for a dad. ;D
Then we walked to the car—in the rain!—and got home, and then I walked up the stairs to my bed and sat down. And now, after hours, here I sit.
So, I was thinking, if I were to describe my family now, as they are now, what would I say? And what would I do to draw them? In a silly way, I thought I’d give it a shot.
Nevermind. That was an awful idea. But I do have a good one! Ready?!
Those are (only some of) my fantastic, fabulous assortments of goodies! Smiley goodies, that is. Doncha love ’em? My fave is <;) 
which looks different than the last every time I do it! Although I can’t remember ever actually doing that smiley . . . heh. Smilies are fun.
Noticed my “Holiday page decor”?
Abby and Elise came home today, and they’ll be here till Sunday, which is 2 days away (it’s Friday). Tomorrow we’re going out to a restaurant called Tia’s, and we’re gonna have LOBSTER! I don’t even like, know if I like lobster, but I’m hoping I do. We were going to go to No Name but Tia’s is better because it’s more fancy schmancy.
Oh, so you know how I was talking about how little things sometimes set off some of my emotions? Yeah, I was talking about that yesterday. Anyway, today Dad was frustrated about something and he snapped at me last night and a few times today. And I realize he’s not “being personal” but I just felt like crying. I don’t ever cry during the day. If I have to I hold it in and plan to cry that night. Sometimes I do or sometimes I don’t. If I don’t, the repressed emotion is added to my emotion pot, and if the emotion pot fills, I break down.
So when Dad was snapping I felt like it’s my fault he’s stressed. And lately I’ve been like, well DUH, it’s my fault my parents are stressed. If it weren’t for me they’d be in France still, or where they want to be. Obviously they don’t say that, but it’s true. When any type of sickness is in your house, there’s of course gonna be added stress and frustration . . . thus it’s my fault.
Another thing that I’ve sensed, but have over-thought, is that Mom and Dad think I’m lazy. They do, but wouldn’t say so because they wouldn’t want to hurt my feelings. I think I’m lethargic and I could do more, but I AM like, limited. I get disoriented if I walk somewhere, and out of breath.
But I could do more and I would do more, but finding the motivation for doing stuff comes in really small amounts. Like really small. :\ If I felt more motivated, I’d probably do more, but I feel like doing stuff is pointless. AGagh.
Well, I’m off to put on my BiPAP and think of life. Joy to the world . . . <:D
Oh, also, what do I draw? My sketch book has been ignored for days! I can’t think of anything. D:< I don’t like “still life,” I think I like more imaginary or fantasy things. Meh.
December 16, (the 14th at 12 am . . .), 2008 Dish on Lobster dish.
Last night, Abby and Elise and Mom and Angie, and I, went out for dinner! We stuffed 2 big oxygen tanks in, and 3 little ones, for a just-in-case pleasant evening. So we drove in the car to the restaurant! We were going to go to Anthony Piers 4 in the most original plan, but that was loads of moolah so we decided on Tia’s. Mom called them and found out they were closed for winter! Ick. So Mom picked the not-too-fancy, not-too-casual Barking Crab. We got there and got our table by the fire1.
Unfortunately, we were also by the door, and every time it opened we’d feel a rush of cold air. Brr! D: Other than that it was comfy. Apparently the bathroom was outside, but only Elise and Angie had to pee, so, haha!
We got a bucket of crab legs for appetizer, onion rings too. The crab legs looked so odd. And we had no idea how to get the meat out of the shell, so we asked, and the lady waitress brought us a huge rock to smash it with!
So you stick the crab leg in the middle of your paper plate and fold over half of it. Then you take your rock and hit the folded over plate, on top of the crab, until you hear a crack. Then you open the plate, take the leg and peel off shell until you see the meat. Then you take your fork/fingers and slide the meat off and eat it! I wasn’t a huge fan of it, but it was okay.
Then I got lobster. A WHOLE lobster. With antennae and legs and everything. They pre-cut it where it needs to be cut, and “all I had to do” was 1. Twist the claws off, there were two! 2. Pull the body backwards so the tail comes off. 3. Stare/laugh/gag at the poop stuff that falls off after unhinging the tail. 4. Peel away the tail shell. 5. Pull the meat off the bone stuff. 6. Dip the meat in butter and eat.
1 But not too close . . . no one wants an oxygen tank explosion. >:]
At the Barking Crab,
BOSTON, MASSACHUSETTS, 2008
Not too hard. Sadly I kind of liked the taste, just not the texture or the I-don’t-know thing about it. Ickay. :/ I ate a little, Abby ate the rest, and I ate loooads of onion rings. They were so good.
Hey, I was thinking, you know how people have things on a list of stuff they’d do before they died if given the chance? I want to do something like that. I don’t know yet. There are some things I’d do if I had no breathing problems:
1) Make a stand in a downtown area with the sign “free hugs” and give a hug to anyone who wanted.
2) Somehow do something for sick children.
3) Taste lots of different foods.
4) Go to India
5) Witness something truly amazing
6) Do more.
But I don’t know. I’d like to do stuff and, just LIVE, because if I do die soon, sitting in my room with the occasional movement will not work. It’s just hard moving around. You know wha’m sayin’? G’nizzle. (night . . .)
Monday, December 15, 2008 5:54 PM, EST
Esther is doing pretty well these days, which makes for a happily anticipated Christmas season! This weekend Abby was home from Gordon College, and a close friend of hers from Black Forest Academy days was visiting from college in Missouri. I took all the girls out to a little seafood place a few miles from us, on the wharf in Boston, since Esther felt up to an outing and said, “I’ve never tasted lobster!” A couple of us had fish, Angie had asparagus, and Esther tried lobster. She didn’t like it . . . but she filled up on onion rings and we had a great evening. She did super with her oxygen tank (I think we took 4 tanks with us, just in case . . .!).
Our Christmas Tree looks wonderful, even though it’s from Lowes and not handpicked by us from the farm. This little house has a brick fireplace, so we’ve been enjoying some warm evenings near the tree. Wishing you all a great week as you wind down (or rev up!) for the holidays!
I had that huge adventure (because apparently I’m an adventurist . . . ) on, um, Saturday, the one with the lobster, and it was fun. It was also extremely exhausting, and that night I slept pretty much without waking. The next day, (yesterday) I woke up at like 5 pm, even though all my lights plus my TV had been going since 2 when Dad started to “wake me up.” BAHA! So yes, I was quite a bit tired. Yesterday was slow and lethargic—Although I DID make a new YouTube video? Excitement
THIS morning I woke up around 6am and felt soo nauseous. That’s happened a few mornings since starting chemo, especially if I forget my nausea pill the night before. Which I did last night.
So yeah . . . wake up at 6 and called Mom’s cell, because I figured she was at home (disorientation . . . ) but of course she was at school, so I called home, feeling so sick. Dad came up and stuck a bowl in front of me as I threw up. That was good timing, since otherwise it’d be up-chuck-bedding.
Can I just say, my esophagus has that “mucicidos” thing going on, which is like a rash inside my esophagus. So I’m taking medicine for it, and thank goodness the pain I had been experiencing in my middle chest area went away. But if I eat meat, or eat something irregular to my diet, I get really bad acid reflux, which burns.
That’s what my throw up was like: it burned my throat and esophagus area, and just flat out hurt. It didn’t stop hurting for like 2ish hours. It really, really was not cool.
After the throw up episode, I couldn’t fall back asleep so I got up. I filmed myself and was gonna post it as a YouTube video but it was lame. I spent an hour or so praying and just plain hanging out with my brother Abe. We drew some pictures together, and I got out of bed (!) to see his new room arrangements (his bed was moved around by Dad). And it was fun spending time with Abe.
Later, at like 9pm, I started getting tired, and then later I couldn’t keep my eyes open. But by the time I was tucked in bed (11? 12?) I got my second wind. So here I am! :D and . . . I think I’m getting tired again.
I’ll write more tomorrow—I’m trying to think of a cool cartoon character that I can make cute cartoons with—just a random person/creature that I like. We’ll see. If I can think of anything, I’ll draw it here. Duh. BYE!
Tuesday, December 16, 2008 11:31 AM, EST
Esther is slowly moving toward a “normal” schedule. She typically sleeps 12 hours a day, from 2am–2pm. We are trying to arrange a more balanced 12am–12pm time table which ain’t easy. Problem is she insists that we be around to tuck her in (which we’re glad to do). We sometimes retire to bed and have her call (by phone) when she’s ready to sleep. There are night time meds and a feeding tube to prepare and lotions to apply and blankets to settle and re-settle. Sometimes a long talk and/or general silliness. I occasionally bark at her though she’s never been unreasonable or demanding. In the daytime, there are still more medications and weekly hospital visits and just hanging out time. Yesterday she was up at 7:30am and had a great day drawing pictures, writing in her journal, watching anything on the HGTV station and perusing old sitcoms (she especially likes Cosby, and a few other shows that I think peculiar . . . ). Today, though, she’ll pay for that good day and struggle to join the daylight. She writes well and with depth (not that I would know . . . ) and draws amazing pictures of cats, people, and sundry other things such as landscape scenes. She recently drew a fabulous cartoon of Graham and Abe diving into a pool (they are taking swimming lessons at the Y). We retrieve any art or prose she tosses out which she discourages and finds bizarre but mom and I are trying to save so many snowflakes . . .
Be sure to check out her mostly unique and often hilarious youtube postings which you can find on the Links section of this site. All our love to you dear reader!
Snowflakes,
MARSEILLE, FRANCE, 2006
Wow, okay so today was the second eventful day in one week! :) It’s crazy!
I woke up at 10:30 am today, and decided to just stay up from then on. But then Dad reminded me that Angie’s Christmas choir concert was later, so I took a nap from around 3 pm–5 pm, when I woke myself up. So, since I fell asleep at around 3:30 am last night, I got a total of around 8–9 hours. Not that great, but alright.
Anyhoo, I got up at 5 and got all dressed and ready (and stressed . . . I get stressed easily . . . ) and by like, 7, we left. I walked into the concert hall/stage and me, Mom, and Abby sat in the front row.
At first I felt like everyone was looking at me, which I’m sure a lot of people were, because let’s be real and completely honest here, a girl with a tube coming out her nose attached to a huge tank attracts some lookers. But only for a few seconds was I self conscious, after that I was like, whatevs. I mainly focused on the singers and tried to forget people may be able to see me. Besides, I can’t stop what people think. They think what they think. :\
dear, Parents . . .
(Merry Christmas!) . . .
I wish I was better at describing my feelings, because there are so many things I would like to say. First of all, sorry if my writing is hard to read: I try, and, like, epic fail, but I think it’s translate-able. : ) Secondly, it feels great to be here, 2 years (plus) since being diagnosed, and many insane thingys later. I mean, not all of them were insanely bad, some were good.; )
Like, remember wheeling me in the wheelchair down Cours Mirabeau road in the Christmas time? There were all those Christmas kiosks, and stands, and all those rides. I remember riding that ride that you sit in and watch a movie of, like Star Wars, and the ride jerks you around like your falling and stuff. Me and Graham went on once, and the second time Abe came, and he was so scared I had to hold him and use my feet to hold myself. Hah, we decided it was a wee bit too scary for him. : D Oh! And do you remember, I won that Winnie the Pooh stuffed animal from that claw/crane/grab machine? I still have it! It’s so cute.
Another memory I have is going to the Wringley [sic] Brothers carnival thing! The elephants and clowns were so cool! Well, the ELEPHANTS were cool, anyway . . . :(
Were there trapeze people too? I feel like there were. The stuff that I can remember was fun! haha . . . oooh! One of my *favorite* memories is my 13th birthday! We (including Keri, duh) went out to a Chinese restaurant and I opened all my presents, except one. So I opened the last one and it was a BAG OF CAT FOOD! (with other cat stuff.) I remember freaking out! Whew, I was so excited. Of course, what followed the news that [I] was getting a cat was the news of “not yet,” which, let me tell you, then followed with the longest week ever. But then I got not one but TWO cats, which was amazing. The night we brought them home, Pancake and Blueberry slept in between me and Angie. AWW.
I love the memory of last Christmas, too! Going Christmas tree hunting, “letting” Graham pick out the tree, Dad “trying” to cut it down. bahaha: D We walked all over looking for the right one! Then we went to that cabin-place with the fire and that, err . . . santa. Oh, and there was cider. OH MY GOSH! Getting my nano last year was real exciting! I watched the video of my reaction today—so funny! I was not expecting it : )
So, I totally know I’m missing out on writing so many more good memories, but oh well. I look forward to getting old and wrinkly and talking about that crazy “Esther–year” . . . Get it? Like “yester-year” but it’s “Esther” instead of “yester”! HAH! 
We’ll make more memories, for sure. Some may even pass up the great ones I mentioned! : D Maybe . . .
SCREEEECH!! . . . sorry, but now I have to change my song and dance from the hip, hop, happenin’ tunes to the slow, blue-y, melodramatic. Not because I’m trying to be mean and make you cry but because I’d like to be slightly sentimental. : )
And I’d also like to share some of my feelings, since I’m not always a talker. If you don’t want to know some of my feelings, um, I don’t know. I’d find that somewhat odd . . . : (heh, heh . . .
Well, you of all people know more than anyone (except myself) what it feels like to hear I may only live a short time. It sucks, man. But I mean, it’s the truth, and the truth is icky. I guess until I had that bleeding, I figured I was getting healthier. I wasn’t feeling any different, but I thought I was. And then the bleeding knocked the sense out of me and I had no idea where I thought my . . . “health scale” was at A-one, I guess. So then I talked a bit to you guys about dying (a bit) and thought I’d be fine. Another bleed . . . Well, who knows. Radiation was taken, and I almost died. Now I’m getting healthy again and the only bad thing left (I’m exaggerating) is death. You know? Maybe I should not have shared that with you. Uhh. Scratch that? Nah, now you know what I was thinking? Yeah. Wow, I’m babbling! Yikes! : O
But rereading what I just wrote, it’s not really all what I think. I mean, I’m confused as to whether or not God’s plans include me dying soon or living till I’m 104. But I do know God has a plan. It’s not like He’s sitting up in Heaven and . . . NOT having a plan! He is in control, but I’m still worried. I take each day, say thank you for it, and then worry,worry,worry. So at one point in time I tried to fix,fix,fix, but then that didn’t work, So now I . . . worry,pray,worry,pray,worry,sleep. Hahaha : P
I do think about dying a lot, but I don’t know. I feel like I’ve finally like, grasped that I’d no longer live on Earth. But I’m working on the actual progress of death and the people missing me part, you know?
Maybe, (or maybe not) you’re interested in hearing “my” heaven? My heaven would be this all green hill-side with a really blue sky, and lots of pink and colorful flowers, that’s completely calm and serene, that I could run and run and run through—without oxygen. It’d just be really nice.
Maybe one day I’ll get to do that : ) I don’t even remember what I thought about anything even a year ago. Maybe you don’t either. Maybe brains just forget what they thought earlier or something.
I do hope that when the day comes, whether in 1, 10, or 100 years, I don’t want you to think of me and feel sad. Even now, while I’m alive, don’t think of me and say, “Poor girl. It’s sad she’s sick.” Not that you do that. Think of me and think of the sunshine, and how I looove animals, and drawing something nice. Like this smiley -> : ) <-AW! I’m such a good smiley artist : ) Speaking of that . . .
That’s not what I was speaking of. I was speaking of how good of a smiley artist I was, and I WAS going to go on to say I have great facial expressions, but now I don’t think I will. : (
Now I’d like to say thanks. Seriously. Serious thanks. Thank you, Mom, for being my mom. When you’re with me, I feel peaceful, and when you take charge I know my needs are met. You put up with more than any woman should—ever. You are my friend, my mom, my inspiration, when I’m sad, your hug reminds me I’m not alone. You make me feel better. When we chill (and also known as hang out), and laugh at that, “I love you more. No I love you more, because I gave you medicine!” commercial or watch HGTV I feel happy! <3 Thank you for watching out for me and telling doctors and pulmonologists to go away! You are so kind, and your genuity (is that a word?) is inspirational. If one day I grow up, I hope to be like you. I completely love you! Thank you, for everything. Dad, thank you for being my dad. You are my favorite person to talk to about odd studies or when I have questions about big stuff. Your laugh is contagious and your jokes sometimes make me laugh along. : ) If I feel restless or slightly confused, your presence gives me back my senses. You are such a good listener and a great friend. I love you for all that you do, thank you.
You two are raising me, (and have so far raised me) very well, and with this whole cancer thing you’ve been amazing. I know without you both I would not feel as good as I can. And even through my struggles you stick with me through everything. I just want you to know you’re not only my “parents” but my rocks. God is the reason I’m surviving, but he’s sure used you in my life wonderfully. I love you. I wish there was a less sappy way to say it, but I do. I just love you. Thank you.
You two are amazing.
What is this, she’s not done?!?! AHHHHHHH!
Oh no, you have created a daughter with an extremely strong hand that can write useless information for PAGES!! AND PAGES!! Nah, this page and maybe more (I don’t know how much I’m going to write yet, you see.) are just random thoughts I have during the day I’ll jot down. Maybe doodles. Who knows? . . . I can be deep, or not so deep. You’ll see. (just for the record, the following words are MAINLY pointless . . . )
It’s CHRISTMAS! Happy Christmas! Can you believe 3 years ago we had Christmas in . . . where was it? Let’s see, last Christmas was Quincy, before that was France, before that was Germany, before that Plymouth, and on, and on . . . Hey look at the spiffy thing below that “S”!
A= 1959. Wayne Eugene Earl II is born.
B= 1963. Lori Lanei Krake is born.
C= 1984. Wayne and Lori get married.
D= 1989. Abigail Cherisse Earl is born.
E= 1991. Evangeline Danei Earl is born.
F= 1994. Esther Grace Earl is born. <- me!
G= 1996. Graham Kenneth Earl is born.
H= 2003. Abraham Judson Earl is born.
I= 2005. Earls move to Albertville.
J= 2006. move to Aix/Marseille.
J2= 2006. Esther’s diagnosed <-: O
K= 2007. Move to U.S.A.!
L= 2008. LOTS OF STUFF <- zzzz.
If you don’t mind, I think I’ll say something “deep,” also know as “serious.” haha. : )
In Jon and Kate’s book Multiple Blessings, they talk about the hard stuff they’ve gone and still go through, and how they were hopeless many times, and helpless. I think we of all people know what helpless feels like, (think Fuveau, when we had that week of eating only beans?) and I don’t know about you but I’ve lost hope quite a few times. When I lose hope, and feel like there’s nothing I can do, I basically just bawl!
Yep, I bawl. And sob. And talk to God. And while I’m talking to Him I usually stop feeling that way. But sometimes, like today for instance, I felt like I was on the verge of tears and I felt like everything negative was directed toward me. Which it wasn’t, but that’s how I feel when I’m in those “zones.” But I was saying, today I was in those “zones” and I was sad and slightly angry, and finally after praying and taking a breather, I’m feeling better. So it’s good. : )
As I was saying (before the previous page ripped and had to be trimmed), Multiple Blessings talks of the Gosselins’ hardships and ALSO their . . . easyships . . . haha, what I mean is [it] also talks of all that God provides and their faith in Him. The stories of their faith really inspire me, and the last chapter really made me thank God more, and feel less helpless. That last chapter includes 6 things to remember when feeling slightly . . . agitated.
(1.) God is in control. (2.) God is gracious and strong. (3.) God can be trusted. (4.) God is love (5.) God will provide. (6.) Give God the glory and praise!
I think we can understand why these are important. It’s easy, to me at least, to forget it’s God who is controlling it all. I sometimes feel like I want to control, but I know it’s always God. I most definitely know God is strong. If he were weak he would not have been able to hold me when I’m tired, and he does. His graciousness is wonderful, when we get annoyed at him he says “I Forgive You” always. God can always be trusted, and we, or at least I, have found that not trusting God to keep me safe through all this cancer stuff would drive me crazy. He always is trusting. God is love. Just like you say to me “I love you more,” God loves us even more. That’s a lot of love. God will provide, of course we know this is true. Even during the times when we had no money in our account, and not much money coming our way, we’ve had a roof over our head—enough food to keep us from starving, and each other. Even though it’s not everything we ever wanted. He never keeps us from having too little. The last to remember on this list is to give God the glory and the praise. When you found the teaching job at Hanover, Mom, we say thank God. And God is the reason I’m still here. I mean he gives people talents, like Doctors, and they use them. Like Dr. Smith who’s helped me, and stuff. But God should get the glory. You know? Yeah.
Anyway, those are not the only things to remember, but I do agree with Kate And Jon : ) Gosselin that those are very important.
Wow, so this “letter” went from a note, to a letter, and now it’s like my journal! Yikes. I do think I’m done now. : ) For now. No more. I swear. Maybe a word. I’m done. I’m DONE . . .
Merry Christmas!
favorite . . . verse
Isaiah 40:31
“Those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will RUN and not grow weary, they will walk and not grow faint.”
I love you two : )
Love, Esther
It’s been Christmas eve, it’s been Christmas, it’s been many things since I last updated this journal (which at one point I wanted to name Delilah? It now has no name). I actually wish I was writing in this a lot more than I am, but oh well. I suppose I’ll try.
So I don’t really remember what I’ve been doing lately, but I can go back to Monday, December 22. Me and dad went to the Jimmy Fund, and it was just a regular visit. We got this teddy bear from there, which we saved for Abe, for Christmas. That was an alright day.
December 23 was GOING to be the day that Alexa and Melissa came up, but I was wicked tired and didn’t want them to come then. So we re-scheduled and that day (it was Tuesday) was just a sleepy day. Oh and we watched Elf. :D
December 24, Wednesday, was a day we all know . . . CHRISTMAS EVE! Holy crap that was a fun day. I made a new YouTube video while I was wrapping presents, and then I went downstairs (at like 11pm) to chillax with the fam. (Oh, earlier we had watched “Can’t Buy Me Love,” just me and Angie and Abby, which was fun.)
Graham’s presents “were not there” so Graham opened Dad’s two presents. Then Abe wanted to open two, then we figured we all would . . . of course, afterwards Graham just happened to spot his presents under the tree. Anyway, I got Wall-e, the DVD, and a pillow. I forgot to mention we always open one present each year, it’s like tradition. =)
After we opened presents, I went upstairs and fell asleep. Yo dawg I was tiyed. I’m like tawking all coo. ;)
Thursday, December 25 was . . . C-H-R-I-S-T-MA-S!
Christmas was great! I woke up at, what? Ten, eleven, AM. And I went downstairs and Abe was itching to open his presents, and Graham’s presents “oddly” had a rip in them . . . pahaha! So yeah, Dad read the story of Jesus being born, and the Angels were frightening the Shepherds, and the men were wise, and 3. Yeah. It’s really, not sarcastically, a nice, calm story. I’d like to read it again. After reading that story Abe opened the first prez . . . which was his skate shoes! He loved them! Graham got some too, but was not as excited as Abe. Let’s see if I can remember who got what . . .
Abby: Grey’s Anatomy s.1, a drawing of a daisy and a note from me, an anatomy book, other stuff?
Angie: yoga matt, shampoo, others . . .?
Abe: lots of clothes, skate shoes, toys
Graham: same as Abe
Me: Sexy metallic leopard leggings! And a bag full of makeup, another bag with nail polish, drawing stuff, other things?
I’m not the best at remembering things. But me and Abby (with Angie, kind of) painted pictures of me, Abby and Angie. And stuck them all in this frame. I think there were a total of 15 photos? Yeah, well it looked sweet and we gave it to Dad, and sort of Mom, for Christmas. (t)he(y) loved it!
Overall, Christmas was a good day.
Tuesday, December 30, 2008 12:37 PM, EST
Christmas memories made together . . . That’s what will hang with us as we recollect these past weeks in future years. Nothing dramatic, no bells and whistles—just living life. We enjoyed a “quiet” Christmas with our five children. Can you believe that Abe and Graham opened their stockings when they got up at 7:15, then waited until 10 to open gifts, the earliest Esther was willing to agree to?! (So what if a few of the gifts labeled “Graham” had slightly loosened wrappings from hard-to-contain peeking!) And did you know, as Abe informed us during the reading of the Christmas story, that the angels surrounding the shepherds in the fields sang “Jingle Bells!”? Perhaps they did . . . Later, we enjoyed a relatively calm meal of baked ham, mashed potatoes, stuffing, green bean casserole, and Dream Pie for dessert. The next day Uncle Jerry and cousin Michaela arrived from California, which demanded a visit to the Aquarium, a trip (including Esther) to see the Christmas lights at LaSalatte shrine, and a night out at the movies!
A HUGE thank you to the many who blessed us and Esther this Christmas with cards, prayers, and gifts. While you are not named here, you have warmed our hearts and helped to lighten our load. May God abundantly meet your needs as well!
Esther had a long day yesterday at Children’s Hospital and the Jimmy Fund, with full PET and CT scans and blood work. We left home at 7:15 a.m. and returned at 6:00 p.m! On Wednesday Wayne and I go in for a full team conference to hear her status, with any improvements or concerns, especially regarding any changes since she began taking the experimental chemotherapy drug. We are nervous . . . Keep us in prayer, and watch for an update.
Thursday, January 1, 2009 7:17 PM, EST
Wayne and I braved the snow storm yesterday to attend the meeting with Esther’s primary doctor at the Jimmy Fund Clinic at Children’s Hospital yesterday. The short of it is that after reviewing her PET and CT scans from Monday, scans reveal that in the two months since starting the experimental chemo the tumors in Esther’s lungs have reduced slightly. At the least they were hoping to see NO growth—shrinking is even better news (the only thing better, said her doctor, would be a miracle!). So she will continue to take the chemo for now, working to keep side effects contained with various medications as we are doing currently.
They were clear with us that studies have found this chemo to work for an average of 8 months before ceasing to continue helping. When the effectiveness wears off, then they would expect the growth of the tumors to begin again. We compare it to a war in which we’re outnumbered, yet we are gaining in the battle for the moment. We will take the weeks and months reprieve with thankfulness . . . !
Happy New Year, everyone!
Emphasis on one
If one person sits down at their computer one day and types one word, does that affect the future? If that one person didn’t type that one word, would the future’s history be changed? Does their one word even mean anything? Does my one (times a lot) word mean anything? Does that one person’s one word even get read—once? If I wasn’t sitting here writing my words, would my future be different?
No doubt it would. I’m sure I’d get much more accomplished in life if I weren’t so caught up in thinking about these things and then writing them down . . .
I think in total I’ve had somewhere between 10–15 blogs. Maybe that’s not a lot? I don’t know what the number of blogs a person has usually is. I feel like 10–15 blogs is kind of a lot. I mean come on, why would I write so much down and then decide I don’t like my blog, just to start a new one, after deleting the other blog, some months later? Really.
Do my words make sense? Whenever I write something and then reread it, it makes little sense. Maybe I’m just too smart for my own brain. (;
“Too smart for my own brain.”
QUINCY, MASSACHUSETTS, 2009
some content deleted
Oh, my, gosh. Can I tell you about the worst day ever?
It’s pretty bad. Here goes: 2am: I go to sleep.
7am: “Esther wake up I overslept we have to leave now!”
“SHUSH!” “Come on!”
7:20am: We leave. (Me and Mom)
7:50am?: We get to Children’s, and I go with Mom to the room where I’m supposed to have my 1-2 hour lay-flat-on-your-back scan. They ask if I haven’t eaten for 4 hours. We tell them I stopped feeds at 7. “Uh-oh,” they say, and poke my finger for blood to test my gluclose (?). Turns out it was alright, so I go lay down for 1.30 hours of a scan.
Next me and Mom go eat food and I get an IV put in. OOPS, they missed. Then they do it again. They made it, and I lay down for 10 minutes of a CT scan. After that we go to the Jimmy Fund where they need blood. I had already taken out my IV because it hurt, so they poked me. Later Annette comes in and says they need more blood. Shut up. They poke me again and get blood, and my spot where the IV was starts bleeding. It finally stops and Annette talks to us about stuff. We go home, by which time it is now exactly 5pm. BAH.
I forget what day that was but it sure sucked. :\ The next few days my lungs felt bruised from lying flat for so long. Ay yi yi. Now I must part for sleep, because it beckons me.
Farewell.
I’ve gotten more into YouTube these past few days/past week. Not like I’ve posted more videos but I’ve found a few people who are nice, funny, and have not too many subscribers . . . I don’t like when there are over a certain amount of subscribers on someone’s channel because then all of your posts are replaced by others in the next five minutes—not so fun.
Also, I started a blog, yes, blog, where I’ve posted 2 entries thus far. I have one “follower” and 3 people I “follow.” To me I feel as though a blog is like a public diary: you write your thoughts but edit to sound more impressive. Mine are FAR from impressive, but, yeah. I forget what I was saying. Oh well.
. . . let me count the ways.
I like a lot of things. I like books, ones with a meaningful message but with humor, or a comic book. I like movies, mostly classical romances and comedies, but I like those odd artsy ones too. I like music, indie stuff, but I don’t like liking music that other people like. I like food, really only Olive Garden and my mom’s cooking. I like the Internet, and going to my favorite websites twenty times a day. I like coloring books, especially when I use those metallic, shiny crayons. I like animals, I communicate better with them than that “human species.” I like snow, when it’s untouched and all white and I’m inside. I like leaves, the crunchy kind that you can step on and crush into smithereens. I like when the sun is shining on your arm, and you feel it and it’s all warm. I like stuffed animals, smallish ones that fit on my bed but end up under my mattress. I like quiet, where I can sit, and just sit, and do nothing else. I like vases filled with flowers that look effortlessly placed, all spread apart equally. I like a lot of things.
I also love many things. But what I really love, what I really, really, really truly love is definitely easy to say . . .
I love Neverball.
“Jughead, my one true love.”
QUINCY, MASSACHUSETTS, 2009
Game Boy time,
ALBERTVILLE, FRANCE, 2006
Lady of the Beach,
QUINCY, MASSACHUSETTS, 2009
I don’t know a lot of stuff
I wish I was a better person. I try to do good things, but really? I think I do but I don’t. I don’t know. I think I’m one of those people that think about their own problems, even though I wish I could do something resourceful. Now I’m one of those people that think about their own problems and then blog about how they wish they could do something to make a difference. Perfect.
I also wish I were a bit more creative. I always want to blog, but I can never think of anything interesting to say. I could fill you in on my life story, but I’m sick of it. Maybe one day I’ll be bored enough to type it all out. All out? Ha, I think I think I’m older than I am. Seriously, fourteen years is like nothing, and maybe you’re like, “snap girl, you know nothing about life!” (because don’t we all talk this way?) and maybe I don’t. I don’t really know.
I’m listening to Regina Spektor. I don’t usually like women’s voices, but she has such beautiful songs . . . they’re making me cry. I don’t even know why. I’m not even sad. Maybe I am. I honestly can never decipher my emotions.
Labels: I don’t know, regina spektor, thoughts, tired
Posted by Esther at 8:48 PM 0 comments
The Earl children,
BRAINTREE, MASSACHUSETTS, 2010
I have been in such a bad mood lately. I hate it. I’m mad at my brain for being mad. And I’m mad at my body for being tired. I hate being mad. I hate hating being mad. AGHHHHHHHHHHHHHHHHHH.
I’m getting a haircut tomorrow. It’s going to be short and angleafied. Because that’s a word. And after cutting it I’m dyeing it orange with purple streaks. That’s right.
Sunday, January 25, 2009 11:28 AM, EST
We are now well into 2009 and are grateful for every moment with our Star (Dad’s nickname for Esther). Sadly, because of the chemo, she’s been slowly losing her recently brightly colored, pumpkin-orange hair. Her eyelashes, eyebrows and skin have been affected, too. She’s brave and shrugs it off but we know it can’t be easy to go through this. On a very positive note, Esther did pass 90 pounds this week!! She was 20 pounds less not too long ago so this is fantastic news. In fact, 100 pounds for her size and body type is the ceiling for her. This weight gain is a strategic part of her battle and we’re glad to report she’s winning there. Also, her numbers (I am lumping in a bunch of info here) have been quite good and we were told this week that there is a chance that she may respond to additional, related medical therapies once the present plan runs its course. Good news, indeed!
Her weekly routine includes visits to the cancer clinic in Boston (though we were there twice for her this past week and nearby for a third appointment for Graham). If we let her she would easily sleep 16 hours a day but we try and keep it to 12. We are still struggling to contort her sleep/wake patterns into our daily schedule. She’s never happy being awakened for medicine or whatever. She sleeps with a mask on as her small Bi-pap machine forces air and oxygen into her lungs which works to ease her part in breathing with less discomfort. During the day she breathes via a nasal tube attached to either a portable canister (for going downstairs or out of the house) or to the oxygen machine itself, a permanent fixture in her bedroom.
She loves to eat a spicy Chinese vegetable food dish from a nearby restaurant and asks for it at least twice a week. She likes the chocolate cake from Olive Garden, too, which we sometimes pick up after a trip to the hospital. She enjoys painting her nails strange colors and her little brother Abe likes to have her paint his nails regularly as well (he also demands that she routinely paint his face as some superhero, though not with nail polish! Her artwork on skin or canvas, is always amazing). She adores her cats and would like to have a third or fourth cat running around (ain’t gonna happen: Dad). Her cats sleep on her bed, taking turns sleeping on her tummy! She said she’d love to live somewhere where she could have animals of all types running around to enjoy (for now, she prefers that idea over hanging around people). She is reading bits and pieces in several subject areas, but mostly lives on her computer, writes, paints or watches TV leaving her room every day or two to play board games and visit with us downstairs. She is still the positive, cheerful girl we have always delighted in! In spite of this awful cancer and its cruel side effects, at 14 1/2, and a few months away from beginning high school, there is no stopping Esther from turning into the young, beautiful woman we always dreamed she would become.
Saturday, February 7, 2009 6:51 AM, EST
This week has been a bit tough, with a new type of headache that has kept Esther from sleeping and kept her in quite a bit of pain. The result now is that her schedule is completely upside down—awake through the night, and finally able to sleep through part of the day.
Her doctors are working on medications, and have taken her off her chemo for a few days to see if it is because of the larger dose she’s been taking for the past week or two. So right now we’re living on pain meds . . . trying to keep them in her system constantly so she gets some relief.
Other than that, her numbers are still good. Hopefully just a small thing to get through.
Grandma sent her some toys for her kitties—we’ve laughed and laughed at the “feathers on a fishing pole.” When they manage to catch the pile of feathers, they try to sneak off with their “bird” but of course get pulled up hard when they get to the end of the string we’re holding! Hilarious, as they will do it over and over. Esther also got a package this week with a colorful lap quilt from some friends. She and I have been enjoying the antics on American Idol; Esther has been painting, reading (when her headache is down), and of course “computering”!
Tuesday, February 10, 2009 5:38 PM, CST
The good: Thankfully, we just found out that Esther’s CT and MRI scans from yesterday are normal! Everyone was worried about about the cancer having spread to the brain, etc which would have caused these recent symptoms.
The bad: Though her parents and medical team are overjoyed, she still has the intense headaches. We hope to get a different pain medicine approved and that should help (though so far the insurance co has denied it). She’s miserable and just wants to sleep. Waking up over the last several days hasn’t been any fun as it involves vomiting, nausea and migraines.
Keep praying and hoping!
I feel so useless. And I know it’s late and I’m tired and I’m upset and I should be sleeping but I feel the need to write. This will probably be short. I feel so useless because I don’t know. It would make no difference if I died. What I mean is not that I’m suicidal, I just have not done anything other than get on the computer for the past year. Yeah, I can’t do much else but seriously?! I want to make a difference, to help someone. And I don’t know how. Helping someone would make me feel good, like I did something productive for a change, thus helping myself, too. Maybe one day.
Saturday, February 21, 2009 11:54 PM, EST
Dear Estee’s Friends, Esther is doing pretty well these days! Between working with her medications and wrestling with God in prayer, there has been improvement! Thank you for your part in this. Though her headaches are not all gone, they are manageable for the time being. Also, her sleep patterns are improving and her last few weekly visits to the cancer clinic have revealed excellent progress overall! These things are enough in themselves to be ecstatic about but since we last wrote she’s also been busy with a few other happenings: had a couple days surprise visit from a lifetime friend (yeah, cool Andrew from NY!), went to the mall one afternoon for three yummy, warm pretzels with dad (though she felt kind of conspicuous with non-stop stares in the direction of her ever present oxygen tank), painted Abe’s face twice (both times as a super scary super something), played piano downstairs a few times (we love that), watched American Idol with mom (they love that-go Danny!), entertained big sis Abby once (hard to get Abby away from her beloved chemistry books more than that!), ate a few delicious (ahem) home cooked meals at the table like a regular kid and made a general blessing of herself on a regular basis. Hope that encourages you. From where we sit today, we’re especially grateful for these and many other daily gifts!
Wayne
Sunday, March 15, 2009 10:39 AM, EDT
Dear Friends,
Haven’t been keeping up too well on updates, which is after all, a good thing! No news usually means no new bad news! We find that one of the most difficult things about Esther’s cancer is finding the right balance in approaching life. We often feel like we’re waiting, but we want to feel like we’re LIVING. Finding the way to live life with the right perspective is a big part of what living a Christ-following life is all about, isn’t it?
So, the nitty gritty for those of you interested! Esther’s weekly visits to the Jimmy Fund Clinic (the outpatient branch for pediatric cancer at Dana-Farber/Children’s Hospital Boston) have been positive, with slight improvement in her various blood counts, oxygen functions, and overall health. We’re constantly adjusting medications, as new health concerns come and go. This week it’s an oral medication to get rid of the thrush which started after the steroid treatment to break her week-long migraine a few weeks back. She has also contracted Clostridium difficile (or C-dif), so yesterday we started a new antibiotic for that. Her calcium levels had dropped, so we’re back to taking a calcium supplement. There’s some concern about slight blood count in her urine—waiting to hear how much of a problem that is. As you can see, status quo isn’t really status quo—it’s just calm concern, versus overwhelming.
On the social front, our Esther has been a butterfly! Went to see a movie with Abby and Angie last week, since Abby was home from Gordon College for the week. Also went this past Thursday evening as a whole family to hear Angie’s (wonderful) voice recital at North Quincy High School. And Esther is spending most evenings competing on Game Cube with her brothers—there is nothing Graham and Abe love more than finding out if she’s awake when they get home from school, and ready to play! Someday we’ll update to Wii, but they still love their antique system, and at least used games are cheap so we can keep adding new ones!
Graham turned 13 ten days ago, and I wish you could all have heard his prayer as we gathered around the table for his birthday dinner. We had been watching old family videos, and his heartfelt prayer was for Esther to walk and run like she used to . . . we were all pretty teary eyed!
Thank you for praying—we’ll keep you posted!
Monday, March 30, 2009 10:42 AM, EDT
Keep Scootin’, Esther!
Esther was ‘out and about’ on Saturday; first as a face painter at a special education conference that mom helped to organize and then to high-coffee with mom and sister, Angie. After that, the girls went grocery shopping which was a big deal because, as best we could figure, Esther had not been full blown food shopping for nearly a year! While the others walked, she scooted around driving one of those engine driven carts for a while without incident until she rounded a tight corner and bumped up against a stack of something-or-others. Other than that, not too shabby for someone who has never been to driving school!
Beginning this week, along with her regular visits to check up on her general status, Esther starts twice weekly visits to a physical therapist. She now has at least three separate appointments a week in Boston (two trips total though, thankfully). Also, within the next week or two, her growing medical team (oncology, endocrinology, etc) will meet to confer about the next step. There are some differences of opinion on how to go forward in her treatment so they, and we, need wisdom. The great news is that they have instructed us to think in terms of a “long term” care plan! What this means we are not quite sure, but it sounds pretty good! We’ll take this news as they intended it: great news, indeed.
4pm-ish Tuesday, March 31, 2009
I had this weird dream last night. It was spectacular. You know how I’ve complained about wanting to kiss a boy? Sounds dumb but I want to like someone and someone to like me. Eesh I sound like a 2nd grader. Whatever.
In my dream we were watching tv or something, and this boy I was with kissed my cheek and I got all tingly and it felt amazing. (haha not like I was getting turned on, oh geeze this sounds wrong.) Then he traced my neck and kissed the back of it. Oh my goodness it felt nice. But there were like people watching us, or something, so we went into another room. We played GameCube and watched tv, and I put my lips like near his face or something?? But nothing happened.
Then I woke up and felt sad cause it wasn’t real. But then I was thinking and I was like, who was the guy? hahaha.
I also had this dream about the B-s boys. They came and I hugged Bruce and he lifted me up really high or something? Then I went to hug JT but he just waved his hand. Then I went and waved at Ryan. They were all scowling.
Later I asked them why they seemed so upset, and they said cause it was Graham who was sick. But he wasn’t . . . so odd.
So yeah I thought the kid in the kissing dream might be Ryan? But then I remembered I had a dream about Jake S (cohenism) and he’s awesome so it might be him?
Or just some guy as made up as those kisses.
Oh and I don’t know if I’ve said this before, but I can’t even kiss a boy now because my chemo from my spit could harm him. Kinda makes you sad when something you want can’t even happen.
Hmm. Speaking of wants, the LeakyCon 2009 is happening from May 21-24. IN BOSTON.
Wtheck is this you ask? It happens like once every two years. Harry Potter fans from around the world meet up to hang out and listen to Wrock—hP music—and HANK AND JOHN GREEN ARE GOING TO BE THERE. IN BOSTON. IN BOSTON AT THE LEAKYCON!!!
I want to go awfully bad. SO bad. But tickets cost 195$ a piece, plus 30$ to hang out with the Greens. Plus I don’t know anyone going. But like Mom or Abby and Angie could [go] with me! Sadly we really don’t have money. I could do this for Make-A-Wish . . .
Eek anyway I wish I could go and I wish I could kiss someone and I kinda wish I could make friends with someone going to the magical LC09. Sigh.
Anyway this was an incredibly immature and frivolous entry. Thinking of this more than health.
Oh, on a good note, I made a “pal” on OMGPOP.com/#/balloono (haha), and we make designs out of balloons and kill ourselves with it. Like stop signs, triangles . . . it’s cool and it makes me happy. :)
Okay bye.
Untitled,
APRIL 10, 2010
Wednesday, April 15, 2009 12:55 PM, EDT
Esther’s team of doctors at Children’s, Dana-Farber and Mass General Hospital are very happy with her progress so far! After much discussion and review of her case, their recommendation at this time is to continue with her Sorafenib (a “smart” drug) chemo treatment which she takes twice daily at home, and NOT to treat her at this time with I-131 Radiation. Fortunately her side effects to the chemo have been minimal compared to what some suffer (she has some rash, hair thinning, stomach discomfort). I have to admit I’m happy to hold off on the radiation, since last October is when she had her last treatment and got so sick we were afraid we’d lose her. The doctors are also waiting to see the result of her CT scans/PET scan next week on the 23rd. If they see either continued shrinkage of the tumors in her lungs, or no change for the worse, then we’ll continue with her current treatment schedule.
On another note, this week Esther got a Wii video system! Since she just started physical therapy when we go in on Thursdays to the Jimmy Fund, it’s perfect timing! She will be able to do therapy while playing bowling, tennis, golfing, and of course all their old GameCube games which also work on Wii. This purchase was thanks to two very generous people. Thank you, Lee and Freeda! Esther (and the boys, of course!) are very excited!
We also had a big day on Good Friday, when Esther had her g-tube of one year replaced with a PEG (or Mickey) tube. I tell her it looks like a beach ball fastener. Due to Esther’s compromised lungs they did the procedure without any medications—I think with all the chemo and radiation her tube had been through a lot, and it was much stiffer and tougher to pull out than they’d expected. But they managed, although Abby said she’d had no idea Esther had the strength to squeeze her hand so hard!
Easter Sunday we all visited our “old” church together here in Quincy. It was wonderful to have Esther with us for the morning and the church family was happy to see her. Then a vegetarian Mexican Easter dinner with two of Abby’s college friends—it was a day of contentment. Just like Abe loves finding hidden colored eggs and counting them, we celebrate hidden blessings and treasure each one . . .
(written by Lori)
“Dreams are Weird” April 21, 2009
I always have very, very odd dreams. Like, really, they’re usually quite strange indeed. Last night I had a dream where I was chasing this car, it was a red car, and it stopped at a stop sign, so I ran up to it and knocked on the window. It rolled down and this person with big, anime-like eyes stared at me, and then his eyes filled up the whole screen, like a movie sort of, and I was standing in a pool of water. Out of the water these dolphin-like creatures came out and started singing about aliens. Then one of the dolphins walked (??) toward me, and smiled, and then kissed my cheek.
Then I woke up, and my cat, Pancake, was licking my face. That was one of the weirdest dreams I’ve had yet, and I sort of blame it on Doctor Who. That’s all I’ve been watching lately, seriously. I’m on vacation this week, so I have nothing to do. I wake up around 3 in the afternoon, eat some breakfast, talk to people on Skype, and then watch Doctor Who. I’m on the last episode in season 1, finally :O
This afternoon I went to the mall and purchased season 2 and season 3! Stupid series 3 cover gave away something that happened to someone, but I don’t know if I should say, since I hate giving away secrets. But yeah, the series 3 cover made me angry T___T. I also got some pretzels from this store in the mall called Auntie Anne’s, and ZOMG the pretzels are fantastic! They’re kind of sweet, but not in a cinnamonny way, and they have salt, but not in a gross, I-don’t-want-to-ever-eat-sodium-again way, and they’re super soft. Oh man, I want some more now . . .
Anyway. My brain is tired. I did too much homework today. Now I must sleep! Oh, and I posted my video for my failboat channel! You should watch it. :D
Blueberry,
DECEMBER 5, 2008
Monday, May 4, 2009 6:29 AM, EDT
Well, if you only like reading bad news, then quick, close the page! Because we only have good news to share about our Esther today. The PET scans came back saying “little change.” But the CT scans can show smaller differences, and they register continued shrinkage of up to 15% in the size of some of Esther’s multiple lung tumors. Her doctor said that of the possible scenarios, this was the best they were hoping for. Current studies show this new chemo benefitting for up to 24 months, before the cancer outsmarts the smart drug. So we feel a bit like Christian on Pilgrim’s Progress, seeing ahead a distance of smooth, straight road—we’ll take it!
So we are on to the task of LIVING. Esther has started on her Algebra program, and we are working with her school to get an official pass from 8th grade. High School next year has to be figured out—probably online, but maybe a combination. We’ll have to see how the summer goes.
We’ll keep posting here from time to time, as the journey isn’t over, of course. Esther continues to use oxygen 24/7, but her doctors are encouraging her that she might be able to get off of it for periods of time. We have our share of side effects from the many drugs she takes, but they’ve been very manageable so far. We keep working on Esther’s sleep schedule, as she has a hard time falling asleep, then sleeps too late in the day (or is that because she’s a teenager?!). Thank you for praying, caring, and celebrating with us!
Lori (for the gang of us!)
Saturday, May 23, 2009 8:30 AM, CDT
Hello All,
Esther is having a great time this weekend as she continues to attend the LeakyCon conference here in Boston. It began Thursday and continues through Sunday. She has absolutely loved going and meeting in person many of her online friends and heroes such as writer John Green. Big sister Abby has trailed along and has fit right in but only after Estee’s extensive coaching. “It’s Griffendorf, not Huff in Puff!’ (no dad, no. It’s Hufflepuff, not Huffinpuff, and it’s Gryffindor, not Griffendorf. bahaha) Say, “Oh, Ministry of Magic is my favorite.” Abby is probably a closeted nerdfighter anyway if the fun she’s been having is any proof. Angie will help lug the oxygen around today and she’ll fit right in as she at least knows what language to use. Mom and Dad are not quite sure what the appeal is, but Estee is in heaven and that’s alright with us. Check out the www.leakycon.com web site for a better sense of things. Also, Esther’s Facebook has current photos.
In other really good news, after nearly a year of going in to the clinic in Boston once a week, Esther was recently upgraded to bi-weekly visits! Kind of like moving from coach to first class with more leg room and free peanuts.
All for now,
Wayne
At Leaky with Alex Day!
BOSTON, MASSACHUSETTS, 2009
Friday, July 3, 2009 11:11 PM, CDT
Hellooo everyone. This is Esther, and I figured I’d update, and stuff, because it’s been quite a while since that last happened.
Nothing very significant happened in June, which I suppose is both good and boring news. I started a better schedule of home physical therapy (every Monday), and I’m still going to Jimmy Fund every other Thursday. Medicine is the same and the next scans are this Monday, July 6, so we’ll tell you how that goes.
A week or two ago I went to a concert nearby with my sister, Angie, and that was awesome. We danced and I was exhausted the next day, but dude, it was so worth it. I have these two “liquid” oxygen tanks, and they last about 4 hours each, so I take those with me whenever I go out. If we ever go somewhere and I need more than 8 hours of oxygen, there’s also a few big tanks that hold 3 hours worth.
Oh, this past week my mom and dad (or you could say Wayne and Lori) went to an island for a belated anniversary trip. Abby and Angie were in charge of my medicine/keeping Abe and Graham occupied, and I must say they did a brilliant job. We didn’t really do anything major, but we made coffee cake, and stuff. :)
Haha and yesterday, Abe, Graham and I squirted out the contents of an entire shaving cream can and played with it. It may sound boring but it was awesome. Seriously, squeezing a handful of shaving cream is AMAZING.
Hummm I can’t think of anything else to say. OH. This year for school, I’ll be going to freshmen year at Angie’s high school, where she’s a senior. I think I’m doing three days a week, two or three or four classes on the days I go? Yeah, we haven’t figured it out perfectly, but the main idea is that. I’m going to take a photography class, and Angie will actually be in the class with me, so that’s sweet.
Tomorrow being July 4, I’m not sure what we’re doing O_o Probably go see fireworks nearby, or something. haha
I have this huge bag of cards I’ve received, and yesterday while cleaning I read them all, and it was so cool. Thank you guys for all the well wishes, gifts, prayers, thoughts, emails, everything you’ve given us the past three years. Although we tend to forget about replying to most of them (hi, we’re the Earls), they DO mean a lot, and I’m really thankful to have so many people supporting me, and us. Hope you all have a lovely July 4th.
–Esther
With Paul DeGeorge of Harry and the Potters,
BOSTON, MASSACHUSETTS, 2009
Obviously I’m a rather . . . “unique” person. I mean I dislike being with other people besides my family, and even then I only like short visits. It’s not that I don’t LIKE people, or LOVE my family, I just get annoyed with them.
I also do not like sports, thus cutting me out of the “sporty” type of people; I’m not very artsy, I’m not very nerdy, I’m not very cool, I’m not very funny/class-clowny. I’m not very rebellious. I don’t fit in with any group.
Although, lately I’ve been watching a lot of YouTubers, and my favorites are these channels:
fiveawesomegirls—five girls who take turns posting videos on weekdays, their main “topics” are Harry Potter, Wrock (bands based upon Harry Potter), theater and nerdfighteria (more on that below/—> )
hayleyghoover—one of the 5AG, she’s the funniest and makes me laugh :)
italktosnakes—another 5AG, her name’s Kristina and I just like her personality :)
rhymingwithoranges—Jazza—he’s cool, funny, he sings :)
vlogbrothers—two brothers started vlogging and stopped textually communicating for one year. So awesome!!
Okay, so the “vlogbrothers,” John and Hank Green, started calling their viewers nerdfighters, which are basically nerds made of awesome. As I said before I’m not totally nerdy, but I like to think of myself as a nerdfighter because of the nerdy things I love: YouTube, iilwy.com, Harry Potter, Wrock, and . . . um . . . I guess that’s it.
But yeah, to become an official nerdfighter, I have to come up with a verse to a song about the nerdy things I like. :) Better get crackin.
DFTBA don’t forget to be awesome :) 8) :D 8D
50 pages. I haven’t reread them lately, but fifty—50—pages of me writing about pointless stuff is surprisingly not as much as I thought I would have written. 2 months after getting Mr. Diary, I honestly thought I would have it full—all 234ish pages. That be a lot of writing but I thought I’d have done it. Ah well, I’m not complaining, just wish I’d write more. :|
Well, I’ll fill you in on the deets and then—if my hand doesn’t hurt 
I’ll get more “personal”. . .
I’d say about February 1 or so I got one of my migraines during the day and had to rest until it left. Just to be clear, my migraines start with bright lights sticking in my vision. It looks like a camera flashed and the flash just won’t go out of my eyes. After about 10–20 minutes of the lights—or “aura”—I get a headache. Usually an hour, about, later the aura’s gone and I’m just left with a headache for the remainder of the day.
So yeah—Sunday :) , Feb Uno (I think) I got a migraine, and it went away later. Then the next day I got a migraine, took a nap, it went away and then I got a-NOTHer migraine later that day! The following day I had two separate migraines again.
The day after that, Wednesday, I got another migraine but that one had more pain than I’m used to. I think I slept quite a bit, trying to sleep off the migraine. The day after Wednesday was, *gasp* Thursday, which is my weekly doctor visit.
We went in at like 11? or something? And Dad had to go with Graham and Abe over to Children’s while I stayed with Annette. So I told her about the headaches and whatever, and then an “activity lady” came in. We did like collaging (me and her, not Annette LoL) and I started to get a faint headache.
By the time Dad came back, along with the psychiatrist (:D) my head was really hurting pretty bad. So even though Dad wanted to leave, I waited for Annette to give me pain medicine, just oxicodone and tylenol.
That helped, I think. And we left for home. And I slept at home but got another awful headache . . . and slept on and off taking lots of pain medicine. The next day, also known as Friday in some places, was pretty much just as bad, if not worse. I think I slept all day, my head pounding, my neck sore, anything I did made me feel nauseous or worse. I was taking pain medication every 4 hours, a mix of oxicodone and tylenol. The next day was just as bad; I wasn’t eating anything, threw up a little at least 2ce in the morning, and literally anything, except lying completely still, amplified the pain.
I think on Sunday the pharmacy gave me a medicine I had used in the hospital for painful headaches—but only 2 pills—one to take and the other to take 2/3 hours later. Just because they’re so expensive . . . But that medicine made me feel better. I was awake for once and my head almost stopped hurting. I was able to get on the computer a bit, I think.
Monday they told us to come in for scans to make sure nothing serious was causing the pain. So I went in, every sound and movement sending a soft thump of pain to my head. The funny thing was I felt much better that day than I did all week. Still a lot of pain but they made sure I stayed pain-medicine-d up. Which helped.
First I had them stick an IV in me and—oh!—miss! >:[They did it again and wiggled it around until it made it into my vein. Whew. Then I went and had an MRI, which makes so much noise and [I] was slightly panicking. But I did good. First 45 minutes were almost relaxing, the machine made a lot of vibrations and lots of rumbling, second 30 minutes were too long but it wasn’t too bad. I was just happy my headache was almost completely gone. Then I had a 10 minute CT which was fine. Then we went back to Jimmy Fund Clinic . . . and waited.
They came back and said everything looked good, which is great ’cause they were worried about tumors, or bleeding. So thank God! ‘:D ←(sweating person nervous thing) They said the headaches are a mixture, most likely, of sleep deprivation and dehydration so I’m supposed to be going to bed at the same time-ish, every night.
My headaches have definitely been less severe since Tuesday, although they’re in no way gone. I’m stuck literally not moving and when my head feels better my neck starts to hurt. They have me on a steroid for yesterday, today, and two other days, :D, which is funny, but it does seem to be helping.
I’m going in again tomorrow at 12:30, appointment’s at 1:30, and I think I’m meeting to talk with a neurologist and sleep specialists to see if they have any brilliant ideas . . . I’ll fill you in later (with the emotions). I’m too tired for that.
But I am extremely thankful to the doctors and Mom and Dad for their constant help, they’ve been unbelievably patient with me. Also thanks to God, for never making the pain last too long. The pain sucks so bad, but it always goes away.
ex, oh, ex, oh :)
“You Are the Moon,”
QUINCY, MASSACHUSETTS, 2009
