I'm waiting... still waiting to let you guys know a definitive diagnosis. It will be soon. Currently applying for Medicaid in hopes that I can get into Sloan Kettering. It's been 3 months now that I've been experiencing symptoms, which have gotten progressively worse, to the point that I find it hard to walk, eat, sleep, breathe. If I had insurance I'd probably already be in treatment right now, a sad thought. I'm in a lot of pain, but the Public Health Hospitals here in NY (even the oncologists!) are not allowed to give an opiate-tolerant patient proper relief. For a tumor the size of a small cantaloupe, they're only allowed to give me 5mg oxycodone. That's one step above giving me a rag to clench my teeth on, so I'd say Bellevue has made considerable strides these past 100 years.
I've been listening to the This American Life archive recently and comedian Tig Notaro totally hit the nail on the head for me, what I've been feeling, a weakened but still bitingly sarcastic "great, now what." She's funny. Listen to it.
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28 comments:
hi kaylin,
i am so sorry to hear this, and i am so frustrated for you that the hospital is treating you so poorly. it's unacceptable. you deserve competent, ethical care, and i will keep my fingers crossed that insurance for sloan kettering comes through soon.
i live in new york and would love to support you in person if you ever need anything. young adults with cancer need to stick together.
keep blogging and kicking it.
jackie
Would you consider opening a Paypal account or similar so people can give you something to help with medical (and life) costs?
Jeremy
there is nothing i can say. life is ridiculously unfair. you are a hero of mine. mostly i want to know what made all this happen. cause. like, did you live in one of Those Places contaminated with x, y, z …
i always want someone to blame.
you are 10,000 times stronger than i am. this i know.
no pain.
Sending love, and lots of lots of light.
- B.
aaaww sh*t?
I'm with Jeremy...there should be a way to donate to you... because you are so aaawwsome. You should be your own church. What can we call it... "Our Lady of the Sacred Cross My Heart and Hope Not To Die, Calvery Can't Come Soon Enough, Give Me Some Good News Gospel Church of Everlasting Freedom From Pain and Suffering"
Amen Sister, Spread the Word and pass the plate!
sending love and prayers your way,
Aunt Les
oh man, I really hope you can get seen at sloan-kettering right away. You have done so much to get on with your life and go for your dreams in fashion. That all is so badass. And I am so glad you advocated for yourself because you knew something was up awhile back with the symptoms you were experiencing. Universe bless you with a long healthy life!
big hugs to get through this bullshit,
Emby
I’m so very, very sorry to hear this news. I hope you can soon find/be given some stronger stuff to help with the pain, and that your application goes through quickly and lets you get some good care. Please know we’re all here to read, share and support. Catherine
Kaylin is in Bellevue Hospital at this writing. She may be having surgery soon. Please send prayers her way. I don't know when she'll be able to blog again. On her behalf, Thanks for your support, everyone!
From her aunt Lesley
To Kaylin's aunt Leslie: Is it possible to get cards and gifts to Kaylin by sending them to you? Are you in New York where she is?
Kaylin's aunts are on the west coast. Her mom flew back this morning to be with Kaylin. We will check with her about where cards can be sent. Thanks for asking. Aunt Benny
Can't stop thinking about you kaylin, I so hope things start looking up for you, though it never feels it at the time fighting is always worth it when you come through the other side....it's bloody shit at the time though
Only found your blog a few days ago and I'm gripped by it and all the struggles you've had to endure, ive cried and laughed through your story - you've touched me and made me realise how quickly things can change for anybody
Thinking of you from the other side of the world, I hope you catch a break
Holding you in the light, stranger.
I'm so sad to hear this, I've followed your journey for years and I'm sending love. Please update us all soon Aunt B and Aunt Lesley!
Update:
Kaylin was admitted to Sloan-Kettering today and has started chemo. She will be there for the next week.
Thanks for all the prayers and support. Hopefully Kaylin will tell you all about it when she is feeling better.
Aunt Les
Thanks a lot Lesley! Thinking of you kaylin, good luck to you and your family in this rough time
That's quite a storm hitting the East Coast. I hope all of you back there are safe. Thank our lucky stars that Kaylin is safely ensconced at Sloan-Kettering for the week.
Kaylin - if you're reading this, words can't express how sad this made me to read this. I am literally in tears right now as I write this. You have worked so hard and brought laughter and inspiration to so many people throughout your struggle, and I know you will somehow find a way to look at the bright side again. I really wish I could have gotten to know you better in San Francisco, and can only hope that I get the chance to again someday. You are literally one of the most beautiful, talented, clever, and strong-willed people I've ever met. Please let me know if I can send you anything in the hospital to help you through this time. I'd also be happy to help set up a Kickstarter or Paypal account to encourage people to make donations for your medical and/or living costs. Sending all my love and prayers to you, Justin Eppie
Hello Everyone,
This is Kaylin's mom. I really appreciate your concern and willingness to help Kaylin get through this. She was in pretty bad shape by the time recurrent Ewing's Sarcoma was diagnosed. She should be the poster child for the necessity of the Affordable Healthcare Act. Several people worked hard to get Kaylin approved for expedited Medicaid and into Sloan-Kettering. I realize that many of you want to help set up a donation PayPal account for Kaylin, but if assets in her name go over $2,000., it could mean losing her Medicaid and the disruption her treatment plan. If people would feel comfortable donating to the account of a family member, that might be a possibility. Or...any ideas?
Since her last post she's been admitted to the hospital twice (once at Bellevue and currently at Sloan-Kettering), had a chest tube inserted that removed 3 liters of fluid from her lung, and received 3 units of blood for severe anemia. And if that isn't enough, now she's having really bad side effects from her new chemo regimen. So I hope you understand why she hasn't been posting. Again, thanks for all your support.
This just breaks my heart! Lynn, you should setup a paypal account in your name and we can all get it on the media networks, I know just traveling expenses alone add up. I would love to do anything I can do, please let us know and thanks for keeping us updated, I think of Kaylin everyday, let us know anything you need!
Much Love,
Ann Marie
We definitely don't want to do anything to interrupt treatment. Donating to you or one of her aunts would be great. Or we could send store gift cards or pre-paid debit cards to handle expenses as they come up. Please let Kaylin know we are thinking about her.
About donating: Let's get that going!!
Thank you, Lynn, for posting. Many of us would like to donate, but it has been hard to know how to set it up without input from a family member or Kaylin herself.
Now that you're involved, Lynn, here are a couple straightforward ways to do it:
-Set up a paypal account in your name.
-Give us an address (could be PO box) where people can send checks made out to Kaylin. (Would the correct full name be Kaylin Marie Andres?) She can then endorse them over to you, or any trusted person who's around. Or, as Jeremy suggests, people could send store gift cards, prepaid debit cards, money orders, etc.
I doubt that either of these 2 simple ways of funneling money to Kaylin will work for raising funds from people who are not followers of this blog, but they're a start. To people who have been following Kaylin's blog it is perfectly clear that the situations she writes about are for real. We don't need a fancy web site with lots of legitimizing bells and whistles to be convinced. Others will, though.
I don't know how to set up the kind of web site that would convince strangers who have learned about Kaylin through the media that a fund for her is legit, but I'll bet someone who reads this blog does.
Meanwhile, let's set up something simple.
Love to Kaylin.
Theo
Sitting here trying to think of what to say, but there are no words. I am so sorry that you are still going through all of this. Remembering lots of good memories from when we were kids and I will forever be sending prayers and good vibes your way.
Lynn, if there's anything my family can do... we're still here.
Lots of love,
Sionnan
Lynn - this is Nikki. Kaylin and I became friends over a mutually painful situation last year. Please tell her I am thinking about her all the time. And you are right - the ACA is why so many of us are still able to get treatment, including myself. All my love, strength and energy to Kaylin. Please give her a kiss on the forehead for me. We haven't had the chance to meet in person but our emails and phone calls have made me feel very close to her. Sending love to all of you. - Nikki
This is the link to the trailer of MTV's World of Jenks Season 2 episode featuring Kaylin. Last we heard it is supposed to air sometime in the Spring.
http://www.mtv.com/videos/misc/853973/world-of-jenks-season-2-kaylin.jhtml#id=1696844
Hi Lynn/Kaylin, it'sRachel from Oakland. Would really love to be in contact w you. I will be in the NY vicinity in mid december and want to visit kaylin. Until then I will help in any way possible and hopefully sent Kaylin some goodies in the hospital. Please email me at tigerpapertiger@gmail.com
Lots of love
http://www.kaylinsworld.com/
To those who were discussing making a contribution to Kaylin: just noticed that you can contribute directly to her medical needs through a Paypal that's already set up on http://kaylinsworld.com/
I recently learned about you on World of Jenks, I live in the Bay Area and found your story amazing! you're inspiring! I can't believe this stupid thing came bake again. BE STRONG, GOOD LUCK! I love you.
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