Monday, March 25, 2013


Thank you to everyone who has donated to my special-needs trust. My heart swells.

It occurs to me daily that I am almost entirely surviving on the kindness of strangers.

I think of old wildlife documentary footage showing altruism in social animals like elephants, taking care of their sick & old because they still offer some kind of benefit to elephant society. I feel like a sick elephant sometimes.

Since the show started I've been getting heaps (hundreds) of emails and messages from all walks of life, sharing personal stories in matched intimate detail to what I share on the show. It's humbling, heartwarming, and surprisingly-- emotionally exhausting. I've read each one but haven't even begun to crack the surface of responding to them. When someone takes the time to tell you their life's story, one feels the need to respond with the appropriate intimacy, which takes time and consideration. So apologies if it takes awhile to get a response from me. I'm going through chemo. Sometimes my friends & family don't even hear from me for a few days!

Thanks again to everyone who has reached out thus far-- I love reading every message & they definitely make my day!


76 comments:

Aunt B said...

Well said, Sweetie.

stacee marie said...

I was one of those emails! Hope youre doing okay today!!!! (random LA girl)

alex :) said...

This is so touching. Thank YOU for sharing your story and allowing us to watch share and experience it with you, whether it be raw and intimate or fun and inspiring. :)

Christina said...

♥ cyber hug! (Don't worry, I'm not radioactive yet, so its still safe for me to give people hugs ;)

Anonymous said...

Kaylin,
I thank God for allowing me to meet you via MTV, my 16 year old daughter and I have been following the show as quality time with one another. Your story has humbled me so very much. I pray that this may be your last battle with the Big C. I know that you will overcome it, and grow to be an old lady someday and look back at this part of your life as the time where you gave so many people so much inspiration. You have to kick it's booty sweetness, I'm rooting for you and look forward to your gorgeous smile weekly. Be strong and know there is a God who loves you and will also heal you! Judy

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Janell said...

I can't believe I am seeing your face on this television show.

Anonymous said...

my teenager and I watch the show together. recorded for the next day. bless you Kaylin. thought of you when I watched the movie Intouchables (not untouchables). only one person in the guys life seemed to treat him as a human first. I thought I need someone who sees a human before the illness. I see u :)

Larkin said...

I'm your age and went through the exact same thing you are going through less than 1 year ago. Thank god I am not the only one who feels that way with responding to emails. I struggled and still struggle with trying to find the right words for responding to such intimate stories and yet chemo brain and fatigue make it so incredibly hard to just sit down and get started. From the little bit I've seen of your story, we have pretty parallel lives and attitudes. You seem like an incredible girl with an undeniable strength and spirit. Sending you all the love, light, and healing energies. Hugs.
From,
A fellow Cancer Slayer :-)
www.facebook.com/lionesslarkin

Katie said...

A brave soul to be tackling the email battle! ;) I have been ill for many years (though no longer indepentantly able to live for only the past 5) & I gave up on emails for the most part cuz it became too exhaustive. I keep a caringbridge & just recently joined twitter, but I do a lot of texting to stay in contact! So while I know the simple act of an email may seem "simple" compared to everything you are enduring, I get it ;) Its very mentally taxing. I appreciate you keeping us all updated through this site. :)

Have been thinking of NYC & how my cousin (who lived in the city for 5 yrs, now the burbs) was telling me about how different things like grocery shopping ate there & though u prolly have a system figured out, I just wanted to let you know of a program I had seen that is run in the city - they provide meals to those wirh serious illnesses who arent always able to make it out or even able to just make the meal itself, and they di it free of charge on an as needed basis. The group is called Gods Love, We Deliver. I dont have a number for them but it can prolly be easily found in your area if you ever find yourself in need of their services. :) Hope that you find a few good days, as I imagine its very day to day. (Had a friend with lung cancer whose chemo treatment was so predictable that she could literally say "having chemo on this day, these days I'll be ill, ANC will be back up again by this day" and it held true every round, byt she told me that most patients arent so "scheduled"). Keep up the good attitude & good fight girl! Enjoying watching your show, loving that its in NYC, amazing city for an awesome chick :)

Katie said...

Ps - lovin' the elephant pic, adorable! :)

Erin Orchid said...

Hope this message finds you well today! I, of course, was one of the many emails you have read, and in my own chemo haze of a brain didn't even consider the copious emails you would have to sift through after the show aired.
No worries about a response to mine. I know how taxing forming thoughts can be during this time, rest your brain, body, and write back only if you want. Just know your story is an inspiration to me. Thanks for telling it...
4 AC dose dense/ 9 weekly Taxane cycles done, starting 12 weeks of CMF on Friday. Hang in there :)

Aly Johnson said...

Hi there. My friends all swear that you are my doppelgänger . I just had to see for myself. Well , my opinion is we may be twinkies. I too am going through chemo. Cytoxan,5fu, and methotrexate . Blarf! Anyways, just wanted to send you some encouraging vibes & to tell you I'm honored to be compared to a girl like you!
I'm trying to journal everyday in hopes of writing a book to chronicle my " adventures".
Hope you have a lovely day!
Sending XoXo all the way from Alabama!!

Ilse Torres said...

You are truly inspiring and a brave warrior. Cyber hug! I wish you the very best and you WILL get better

Kevin Lankes said...

I think you should win an award for the most adorable cancer imagery ever.

Jacqueline Sherwood said...

Hi Kaylin! My name is Jacqueline, and I recently sent you an email. While I hope we get the opportunity to talk, I completely understand how difficult it must be to answer every single email you receive. Keep fighting and never forget how strong and beautiful you are. You are such an inspiration, and you have SO many people rooting for you. You CAN kick Cancers ass once again - I know it. :)
Much love,
Jacqueline

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Mike Neuroth said...

Dear Kaylin,what can I say?You're so punk,you're so rock-n-roll,you're are so strong,you're so creative,you're so real,you're so original,you're so inspirational,you're so kick-ass,you're so beautiful.....you are so much more than your disease!!!You are the definition of style and grace.I wish you all the best. Love,Mike

Katie said...

Hey K!

Just stopping in to wish you a Happy Easter :) Hope today is treating you well! :)

Katie

Three in One Million said...

Hi there,

I stumbled across your blog on twitter. My fiancé is currently undergoing treatment for Ewing's sarcoma as well. While I wouldn't wish this experience upon my worst enemy, I am thankful for everything it has taught is. My thoughts and well wishes are with you.

www.threeinonemillion.blogspot.ca

Mark Boucher said...

Thanks For the information about cancer.It gives lot information about cancer

keep_dreaming said...

Hi kaylin(: I emailed you not too long ago but i was not sure if you got it or not. I just wanted to say your such an inspiration for everyone one, whether its for those with cancer or that no matter how hard life is a person a make it through. I love reading your story and do get better soon<3

kerri said...

you are already giving so much of yourself through the blog and show. i hope you dont feel pressure to write back to us. my email to you was that of thanks. thank you for sharing your story and spreading awareness for all of us.
take care of yourself and know we are standing behind you.
<3 Kai's mom (Kai 9/5/10-11/27/13 -brain tumor)

Harmony Grace Long said...

Kaylin,
I heard your story on MTV's World Of Jenks. I'm rooting for you, and I know that you can kick cancer's booty. You can make it through this.
Love always,
Harmony

Anonymous said...

Big hugs, prayers, and love! Everyone is rooting for you!

Anonymous said...

Kaylin,
We don't know each other but I want to tell you how amazing and strong you are. I would never be able to handle half of the things you've battled. You've got love and prayers coming your way from Arkansas. (My Frenchie, June, and Boston Terrier, Jackson, send love as well.)
Be strong girl. Fuck cancer.

Anonymous said...

You are so gorgeous!!! Stay strong and have faith. I am praying for you. Love from Brazil!

Katie said...

Hey Kaylin, just stopping in to say hi. :) Its been a bit since you've updated & Im hoping that has more to do with lack of things to blog about rather than you feeling too icky or drained to write. I have an online journal myself that I write about life & medical crap, so I know it can get overwhelming when ya dont feel well. Sending ya some love from MI & hoping that you will be able to get out & enjoy a warm spring day soon :) Have those even started in NY yet? We're still under the guise of a wintery spring here in MI. Maybe it will get warm soon & I too will be able to enjoy a warm day. Taking it one day at a time here since surgery last week & wishing you the same! :)

Praying for ya, stay strong! :)
Katie

Anonymous said...

Aaaah your old house, your mom and rhoni. :) and you still walk the same minus on your tippy toes. ;) lol so weird seeing you on there but you are a fucking rockstar. hope you are doing ok and kicking some ass. I am going to have to hunt through old GS pics now. We're all thinking of you and sending you our love. <3
Sionnan

Leslie Hall said...

Kaylin,

Greetings from Michigan. You are an inspiration. You have taught me to not sweat the little things that life throws my way. You are a poster child for strength, beauty and grace under fire. I will be praying for you... for health, happiness, success and the courage to keep on fighting. Looking forward to the news that you are cancer free, and that your designs are a household name. <3

Sara Patterson said...

Hi Kaylin
I wanted to let you know my heart goes out to you!! You are an inspiration to me. My brother showed me your parts on television which as inspired me to create my own blog this week. You see, I've had struggles with extremely large ovarian cyst since I was 18 years old, one time it was 15lbs. Not only that but I have been wheelchair bound my whole life do to having Cerebral Palsy. My brother always tells me I am a normal 27 year old who kicks butt!!! He thought I could find you relatable to me, but I have to say I think you kick more butt then I do!!! Stay strong!!! You have people here for you!!

Anonymous said...

hey girlfriend.. I had some neurological testing done today for unexplained pain in my foot ( pain in my ass too lol). It sucked, but thinking about your amazing attitude got me through it. Thanks. Thinking about you, much love from a fellow twenty something!

Anonymous said...

You are an amazing individual! Beautiful inside and out! I would love to cross paths in life! Thank you so very much for sharing your story! My thoughts and prayers are with you! God bless you!

Rachel Fisher said...

You are an amazing woman. Being a young cancer survivor I am praying my bum off for you! You are strong and beautiful. A role model for sure

Nick P. said...

I just read on Facebook that your cancer returned. F*ck cancer! You're awesome and I love your attitude and humor.

mikells43 said...

hang in their girlie! youll do just fine! my prayers go out to you, your in one of the best cities in the united states so you should be receiving the best oncology care out there. like i said hang in there im pulling for you!

Cheryl said...

Ohh sweetheart I am so sorry that fucking cancer has returned, damn it. If anyone can get thru it, you can. Keep your head up and know there are many folks thinking about you!

missalrac said...

you are a pillar of strength.

MaryMcRN said...

Kaylin,
Just want you to know that we are praying for you in Montana. You are such a beautiful soul and have touched my life.

Katelyn said...

Hey Kaylin!
Wishing better days come very soon for you. So many people are standing behind you and rooting for you. Stay strong and then get back to work so I can buy some of your fashion on etsy!
Katelyn

Anonymous said...

"To laugh often & much, to win the respect of intelligent people and the affection of children...to appreciate beauty, to find the best in others, to leave the world a bit better...to know even one life has breathed easier because u have lived. This is to have succeeded!" Emerson...Hugs from Brush, Colorado

Karen said...

Sending you light and love...hang in there!

Anonymous said...

If anyone has the strength to beat this, its you!

Anonymous said...

You Inspire me.

Amber Carlson said...

Hi, Kaylin. You don't know me. I'm just a random viewer of the show. I read on FacePlace that the cancer returned. I have spent the last couple hours reading your blog. I'm really impressed by... well... you! Enough said. Sending many prayers and cyber {{{hugs}}}. - Amber from "The O.C." - Orange County, CA.

Terrie Cichon said...

Hi Kaylin, You are such an inspiration to the world. A truly strong and proud woman. I am so sorry to hear that cancer has returned - please stay strong and fight this. You WILL beat it again! We are all praying for you.

Anonymous said...

I just found out through Jenks via Facebook about the return of your cancer...I'm so sad you've been going through this! I love you on the show..you're beautiful and have a beautiful spirit. I was so excited seeing you happy in NY with your shows! Thinking of you and sending lots of positive your way..you've got this!

Alex DC said...

Hi,
Never knew about Jenks until this year. My mom and I have fallen to care for you. My grandmotherhas survive three rounds of breast cancer. So my mom and I can relate to what your going through to a degree. I wanted to let you know that you are a strong, sexy, beautiful, gorgeous, and magnificent woman. You have everyone supporting you with love. Praying to all the gods out in the universes for you.

Kisses and hug
Alexandra C

Jkarlsson said...

Just know that you are an AWESOME person and have so much going for you. You are such an inspiration to me. No matter what life gives you, you still move on. Chin up girl!! Prayer goes along way ;)

beautysmalls said...

i hope that you are doing well!!! i think you are one of the most brave people i have ever seen!! and you are very talented as well!!!

my friends little sister watches you weekly as she goes through her cancer battle and I guarantee you give people light

love you kaylin

Alicia said...

I am so pissed off to see that you are going through this AGAIN! Or Still. I don't even know what to say. I have been reading and rereading your blog...and watching my 12 year old go through her 4th battle with her cancer! It makes no sense to me and I am so angry somedays...I can't even see straight. BUT...I do believe in miracles. I have seen them. I have one sitting beside me right now. I believe in prayer and I will keep you in my prayers.

Love to you.

Bianca said...

Kaylin, I just made a donation and am sorry I could not donate as much as I would like to. Being a student and working part time as a nanny does not help. I know it isn't much, especially in NYC, but I thought no amount is too small if everyone donates. Be strong, get strong, stay strong.
"Cancer can take away all of my physical abilities. It cannot touch my mind, it cannot touch my heart, and it cannot touch my soul." Jim Valvano

Anonymous said...

You are such a beautiful and amazing individual. Hold your head high- there are so many people behind you. Stay strong!

Paul Blais said...

Thanks for sharing your story. I am relatively new to team cancer (http://paulblais.blogspot.com/2013/02/the-next-thing.html) and it stinks! I get what you mean about being overwhelmed at the generaosity of others. I think we would be bankrupt if not for the kind support of others.

CoastWithMe said...

Just found your blog through another blogger and I just wanted to say I commend you for your strength, bravery, and openness. Thank you for sharing your story. I'm sure you have touched many like myself. Let us all know if there is anything we could do to help...we are here for you through this journey. Sending big virtual hugs your way girl:)!

april perez said...

hi kaylin, ive been following you awhile now, my brother was diagnosed with ewings sarcoma at age 19, you remind me a lot of him.. so determined. keep your head up sweetheart. aprilperez29@yahoo.com please if you can email me id like to talk to you

Icca said...

As someone with a chronic incurable disease, who goes through my own chemotherapy, I find comfort in your story.

Do you have any tattoos signifying your struggle/strength from cancer? I've been thinking about getting one for awhile, as a reminder to keep pushing through the roughest days.

Diana Young said...

As you describe yourself as a professional cancer patient, I describe myself as a professional caregiver. My brother had liver cancer and passed away at the age 29, and my mother is a two time breast cancer survivor. Even on your dark days, your attitude is inspiring. I can't even imagine what you are going through. I wish you nothing but the best and I will be keeping up with you via blog. Thinking about you daily as you go on this journey. Allow the words of strangers help get you through the day. -no need to reply, focus on yourself-

Lisa Dolyak said...

Kaylin you're amazing and I know you'll kick cancer's ass and send it away for good! I just recently had a cancer scare with my best friend, they found a rare ovarian cancer in her but removed the ovary and it didn't spread but that feeling in the pit of my stomach.. I can only imagine what you're feeling and what your friends and family feel. But you're not the kind of girl that wants anyone to feel sorry for her, and I don't feel sorry for you or pity you, I admire you. I admire you for kicking cancer's ass twice and soon to be a third time, and following your dreams! You're going to be an amazing fashion designer and I can't stress enough how awesome I think you are :) Prayers are with you girl!

kevin arens said...

Kaylin I literally fucking love you, your energy and vibe is going to take you far. I would love to have a sit down with you! When are you posting again?

Karan Dhabalia said...

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Also take a look at our summary section video: http://www.youtube.com/watch?v=Fki8NALj2u0

Neha Verma said...

Packers and Movers

Thanks for sharing your story

Smoking and cancer said...

Hope you feel better!

Patrick D said...
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Patrick D said...
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Patrick D said...
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Patrick D said...

Kaylin- I followed your story on World of Jenks. The strength and courage you showed to pursue your dreams despite your health condition was truly inspirational. Most people,including myself, find it a struggle to go after their dreams on a daily basis in good health. You managed to make it look easy all while battling cancer and inspiring millions of people. You are truly a special person and I wish you a speedy recovery. You have already left a bigger mark on this world than most can ever dream of and you should be proud of yourself for that. Thank you again for sharing your story.

Unknown said...

You continue to be an inspiration to me, I first heard about you on the ESARC list and have been following your story for years! I'm almost 4 years into fighting Soft Tissue Ewings Sarcoma/PNET and it's continued secondary affects. Thanks forbdocumenting your story on this blog as well as MTV. It is really hard for people not involved in ones everday life to realize how hard it is to be a young adult dealing with a chronic disease daily.. Keep kicking ass! -Jenn another girl from Sac w/Ewings

Anonymous said...

How are you? Update?

Thinking of you with love.

1mkat1 said...

http://www.upworthy.com/batman-is-here-to-lend-a-hand-to-children-with-cancer

I thought of you and all the good work your story has done! I watched you on World of Jenks and cried most episodes because of your strength and perseverance. Thank you so much for sharing your story! My heart and prayers are with you! <3

Melody Choi said...

Hello, I am a volunteer at the American Cancer Society and I just wanted to share that we are hosting a FREE summer day camp, Camp Summersault, in Long Beach, California from August 5-9, 2013. This camp is for children from ages 5-13 who are survivors or being treated for cancer and their siblings. Activities will include arts & crafts, jewelry making, campfire cooking, challenge course, music, archery, petting zoo, horseback riding, and much, much more. For more information, feel free to contact Rosa Kelson at (562)437-0791, ext 224, and all families are welcome to come partake in these festivities. It will be a lot of fun! :)

Haute Lyme Lady08 said...

Hey Kaylin
I don't have cancer but I just wanted to let you know how much it helped hearing your story. I have late stage Lyme disease and am currently going through my second round of iv antibiotics through a Hickman catheter ( which I heard they use this catheter with cancer). I struggle daily with excruciating body pain that hurts down to my bones. So many people do not understand how just because someone doesn't look sick doesn't mean they're not. Especially when that person is young. Every day I have to put on a fake smile to mask the pain I'm in. I'd say if only they knew , but I wouldn't wish this on anyone. Watching your story on mtv gave me hope that people could take young adults with debilitating illnesses seriously. You're in my prayes and thoughts. God bless you!
Oh and I love that you're a fashion designer! If I hadn't have gotten sick that's what I would have done. You've given me hope that maybe some day I will. If you ever want to talk or if there's anything I can do to help I'm here :)
- Sarah

Anonymous said...

Hey sunshine, after reading your blog I am convinced that you are a beautiful human being, and you deserve to live and shine like no other.. There is a book that's helped a friend of mine on his way to being cancer-free, it's Andreas Moritz's "Cancer is not a disease". From the bottom of my heart I wish you to understand your cancer and get well!

Rory Mcclane said...

How great is our God and nice post.

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