Aid in Shawn's Fight Against Cancer

$24,363 of $250,000 goal

Raised by 385 people in 35 months
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Intimal Sarcoma of the Pulmonary Artery and Lungs.

February 29th, Leap Day, I was informed I had been diagnosed with this specific Sarcoma or form of Cancer. I made a post to Facebook announcing my release from the hospital the following day, but that was only 1/2 the story. Maybe 10%. I didn't want to write a big long thing and be like "HEY! GUESS WHAT EVERYBODY!?" because I wanted time to speak to those closest to me and have those person to person conversations. In the last couple hours this evening, some very zealous and supportive family members have begun tagging me in Sarcoma and Cancer related posts asking for prayers.  As strange as it is to ask for funding or "crowdfunding," we realize that there will be a variety of unforeseen costs as we tackle this beast.  We realize that insurance companies are not always there to aid in their members' best interests.  I do feel like the "target goal" is leaning on the high side, however, we do feel that there is no reasonable cap or ceiling, to how much can be given to research once I win this fight.  A little bit about my story...

My surgeon discovered it during my open heart / open lung surgery (Pulmonary Thromboendarterectomy) to remove the blood clots in my lungs which had grown over the weeks that I had been hospitalized regardless that I was on high dose blood thinners which should have kept them at bay if not begun to shrink them. The clots had become so profound that I was no longer getting blood flow to my left lung and had we not done the surgery, they informed my family that I would probably be dead by this weekend, merely two weeks after discovering the problem.  My surgeon also informed me prior to the surgery, there was a "5% risk to life."  Never having been in a situation to relate, this was terrifying alone.  However, when they opened me up and began to go to work, they found a much nastier surprise inside, hidden amongst the clots.

Intimal Sarcoma is a rare, RARE cancer with from what I understand, less than one hundred and thirty reported cases of it, EVER. It's difficult to diagnose because of its malicious, sly nature to hide inside the blood clots so it doesn't come up on any CT scans or MRI's or the like. The deviousness of it is the cancer doesn't seem to kill people quickly, it's the fact that it's location creates the blood clots and then suddenly prevents you from breathing. As such, it's said that this cancer is most often found during autopsy. Having read some case notes from instances of this cancer from around the world, I found a prognosis for a woman in her late 40's who was given a prognosis of 12-18 months. I was informed at Westchester Medical that while there is no chance at surgical removal, there is a chance to put it into remission through IV Chemotherapy.

I am told that it is "late stage" and "advanced" and "malignant." Regardless, I feel surgical site pain. I do not feel like a cancer patient.  My breathing is not impeded, my stamina is complimented by family members.  There's room to fight, room to hold our ground.  We are fighting it. Yesterday I e-mailed one of the Top 3 Sarcoma specialists in the world, Dr. Robert Maki of Mount Sinai Hospital in New York City. My family and I have been in contact with his office since Tuesday when I was referred to him through a family friend. He's currently doing some clinical trials related to rare sarcoma's and I may be apart of those. Currently we're waiting for the last of my records to arrive at his office Monday from Westchester Medical Center.

I couldn't believe it. 130 cases reported ever. SEVEN BILLION people on the Earth.  Not even that but how many of those 130 are of how many generations? So not just 7 billion but many more.  There's no words to explain how it feels to learn such things. No words. It's terrifying, enraging, curious, and did I say terrifying? You want to be strong for your family members as they break down around you. You want to be held close by the friends you love yet haven't seen in years. You don't want them to be scared meanwhile every tear they shed you shed with them. It's the scariest thing ever to think that 3 months earlier, you're biggest medical concern was being allergic to your girlfriends cats and dog.

It's all been pretty mindblowing and I think I've cried all the self-pitying tears I can cry and all the happy tears I could shed from the outpouring of support from those who knew before I even did (I was kept in the dark post-surgery to give my heart time to heal.) All the prayers and well wishes and votes of confidence that I will beat this have been truly amazing. I have SO MANY people to thank it's impossible to list them all here. There's still so many people I want to have hearts to hearts with and visit with if possible though I may start chemo or some other treatment by the middle of next week.

Just know, there's a fight going on. I won't be available to hit up the latest bar. I won't be marching with Iona College for St. Patrick's Day, though I've always wanted to. I'm gonna be a bit of a homebody or I'll be an inpatient again for sometime I don't know how long. We're gonna get this into remission. I thought the worst was over when I got out of that surgery. I was convinced of it. Now I'm ready to do it 20 more times if that's what it takes. Please, keep me in your prayers, your thoughts, your well wishes. Light a candle if that's your thing or raise a glass to my health if that's what you prefer, and if possible, donate to our fund to aid in the fight against this horrifible affliction. 

Love, peace, good health and blessings to you all!
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Hey everyone, Shawns sister Rachel again. I deleted my last post because I wasn't sure what Shawn would like to be said. I'm flying back to NY this morning and Shawn will be getting an ambulance home. When he leaves the hospital he's going to be on hospice. The hospital gave us no choice they've done as many treatments/surgeries they could. Too many surgeries and scans to count. Shawns been having nightmares lately which cause him to stand up sometimes and last night he tried ripping wires off (I think he succeeded at some). My family and I lose a LOT of sleep so don't take it seriously if we don't answer. Shawn is in and out of it so holding his phone or reading/answering people is difficult. He has 2 chest tubes now draining fluid and besides that he has a constant cough. He has an iv and on high oxygen (which makes it difficult for him to talk too much). His resting heart rate is always high because there are tumors growing close to the heart and around his lungs. Sarcoma cancer causes blood clots so this is very serious and Shawns been fighting for atleast 17months now. It's a very difficult thing to explain and we really don't have the words to tell people. We love the supporting comments and calls but shawn does need rest and he doesn't look like himself.. I would love If everyone could be understanding that we need family to be with him more than anything although if he has a good day (or moment) we will be sure to have close friends come by. It's just a lot. Please please PLEASE ask first, we are all very exhausted and my parents are...well parents. It is rude to just stop by I understand you all car. Be understanding. I do understand people are flying/driving in from all over... It's impossible for Shawn to respond to everyone he is in and out of it. Just know he does care. We try our best to send him any messages he doesn't recieve. I have nothing else to say, this is a difficult time for me family and I do understand all of his best friends from college, highschool, aquaintances, etc. Care... but please let us figure out our next step. We will update/respond as much as we physically mentally can. ❤❤
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Hi everyone, this update is from his younger sister rachel. I would just like to thank you all for the support and keeping my family in your thoughts & prayers. This sarcoma cancer hasn't gotten easier for any of us. The drs. Don't always know what to do/say and neither do we. I know some of you have been trying to reach out and would like to know what's going on.. It's not always the best time to give updates. My parents have been working and going back n forth to long island Jewish medical center. Shawn has been in ICU for 3days and then 6days now in a "regular" room. If my parents aren't sleeping in the hospital they are at a hotel within 5 miles of the hospital. They don't always have phone service their or they are just extremely tired. If anyone has had a family member with cancer they know it will make everyone restless and running on coffee. Shawn is on oxygen and the tumors aren't getting any smaller. A few weeks ago while I was home Shawn got pneumonia (they think), he fought through it and got to go home. They weren't exactly sure because he has fluid in his lungs which makes it hard for them to do any scans. He now has a chest tube for the rest of his life, it helps drain the fluid that continues to build up. ...sarcoma cancer also creates blood clots and sometimes blood clots start in your legs, well Shawns legs were swollen the last time I was home and they've gotten worse from what I hear. (Oh yah, I'm living in myrtle beach) it's difficult for me to give answers when I'm trying to get an immediate last minute flight tomorow. He is also on high oxygen and if you've seen him in the past few months he sleeps sitting up, if he even can sleep. He also has been coughing up blood for months now. I'm forever grateful to everyone who keeps showing their love and support. All of your donations have helped Shawn with his treatments and all the driving to different hospitals. He's been to 5 hospitals over the past 17 or so months. (Northern dutchess, vassar, mt.sinai, Westchester medical, long island Jewish medical center) I say 17 months because it took them around 2 months and 2 hospitals with teams of drs. To figure out what Shawn had (including an awkward isolation room where they thought he could be contagious, mind you I had to wear a hazmat suit to spend time with my brother) . When you don't get the answers you want it's gut wrenching, heartbreaking, exhausting, no way to describe it. My parents have been searching everywhere for answers and treatments. Anyways Shawn isn't always able to write or answer, it takes a lot of energy. He needs any rest he can get but that doesn't mean he doesn't care. Your messages might be read and if not I do pass on the message. Like I said it's difficult to come up with responses. Anyways thank you for being there for all of us and mainly shawn. Let's just say out of everyone I've ever met Shawn has more adventure stories than someone who's in their 80s! Since Shawns cancer was found I also realized he has friends/family that travel from all over the U.S. just to spend 1 day with him wether it's in the hospital or just playing video games relaxing. No matter what happens tell Shawn a joke and bring some light into his life, that's what I try to do ❤
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Hey guys, good news! You may have seen the last update in which I'd made note of the 1.46 liters of excess fluid from my chest. Let's discuss the after effects! Coughing fits? Minimal. Spitting up blood? Pretty much DONE. Not happening, If I'm hocking up and spitting anything it's pretty much just phlegm, sorry if that's a tad gross but hey, medical stuff can be "gross" if you're not used to it I guess. I slept lying down! Sorta, slight incline and not on my back but on my side left side where there's much less pain than the right. Stamina? I would be winded walking down the hall in my home. Not only have I been doing laps on the Oncology Care Unit floor here in Vassar, I'm
DANCING. I been doing jigs, practicing salsa steps, I just dd a little hustle dance with my grandmother!

Last week, I was told by a surgeon there would be no point in draining the fluid. I was told any surgical or invasive procedures would be pointless and life-threatening. I can't even begin to tell you how ECSTATIC I am, that we did this "thoracentesis" procedure. I thought we were running out of options to improve any sort of quality of life. I thought chemo would be the ONLY option that would at least extend my time here. Sometimes, it's worth the risk! Sure, could've collapsed a lung again during that procedure, What's new though right? Worth it!

Anyways, just wanted to share the good news here with you all!

Have a good day, make it a good day for someone else, and Happy Father's Day for all you wonderful father's! Can't wait to see mine, fortunately I'd gotten his gift weeks ago!
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Been a busy couple days at Vassar, can't count on 2 hands all the doctor's I've sat with it feels like! They've been wonderful though. Just a few minutes ago I left a procedure called a "thoracentesis" in which they drained excess fluid from my chest. Little bit more than 1.4 liters was removed! I think I'm breathing better too so... WIN!
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Read a Previous Update
Robert Collik
35 months ago
8
8

Hi Shawn, I read about your cancer on Jackie V's FB post. While you dont know me, Jackie considers me her second dad. I was touched by your story and I feel your pain. You see in August of 2014 I was diagnosed with pancreatic cancer and told I had just months to live. The doctors all looked at me those "sad eyes". I'm sure you know the look. So now its 19 months and I'm here and doing just fine. My cancer is almost gone and the doctors all shake their heads and call me a miracle man. I'm not going to tell you it was easy... it wasnt! The treatments and various procedures along the way were often awful. Side effects were no bargain either. If I could do it so can you! Dont make yourself crazy and dont waste time worrying. Just do what you have to do. Some say be positive. I dont know if that always works either. Just be! I have every confidence that 20 months you'll be sending some newly diagnosed cancer patient a similar note as this (paying forward). I hope to hear great things from you in future and I'm sure I will. Bob

+ Read More
Mary Harris
20 months ago

Hi Shawn: Our love and prayers are with you. Hold on to your faith and be strong. We love you! Becky and Grandpa!

+ Read More
Rio
1 month ago

To Shawn and his immediate family. I too saw your post on Jackie Zuks Facebook post and wanted to know if you or your immediate family can contact me through Facebook. I am a master healer who started as a student and I was taught how to heal people that have all different kinds of problems such as cancers, tumors, disease, heart disease, prostate and much more. I offer this healing technique to you for free and for everyone fighting cancer. Inbox me with compassion and harmonious

+ Read More
Kristin Freeman
19 months ago

Sending lots of prayers your way

+ Read More
Patricia Sabini
19 months ago

Praying for all of you

+ Read More
Mary Harris
25 months ago

Hi Shawn: It was great getting to talk to you a few minutes. Will be praying for everything to go smooth for your week off and then the next treatment period. Grandpa Wayne sends his love.

+ Read More
Bridgette Danielle
26 months ago

Whenever you're up to it, you're more than welcome to come visit Boston! I'm sure Dave could make some time and I should have my spare bedroom set *hopefully* in during vacation! Glad to see the positives in your update :)

+ Read More
Mary Harris
26 months ago

Hi Shawn: Why are you in the hospital again? Wayne talked to Wayne Jr. a couple of nights ago and he did not mention you being back in the hospital. Sorry to hear this. Wayne and I have not gotten up there yet, as I have been having some medical problems and he has not been feeling well. When would be a good time to call you and talk a few minutes? I can contact you through Facebook. Take care and know we are praying for you and love you.

+ Read More
Mary Harris
31 months ago

Hi Shawn: Am glad you are through with the chemo. Pray the rad.will go well. Wayne and I are going to try to get up your way in August if not before. Am looking forward to meetin you. You are in my prayers daily. Love you! Becky and Wayne.

+ Read More

$24,363 of $250,000 goal

Raised by 385 people in 35 months
No Longer Accepting Donations
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Created March 5, 2016
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PA
$100
Page Park Associates
18 months ago
1
1

Our sincere condolences to your family, so very sorry for your loss.

CR
$100
Clare Rubin
18 months ago
2
2

I am so sorry for your loss.

TF
$100
The Steyer Family
19 months ago
1
1

Our heartfelt sympathy to you all.

$25
Anonymous
19 months ago
$25
Anonymous
19 months ago
$50
Gabrielle Baker
19 months ago
1
1

our prayers are with you!!!

Robert Collik
35 months ago
8
8

Hi Shawn, I read about your cancer on Jackie V's FB post. While you dont know me, Jackie considers me her second dad. I was touched by your story and I feel your pain. You see in August of 2014 I was diagnosed with pancreatic cancer and told I had just months to live. The doctors all looked at me those "sad eyes". I'm sure you know the look. So now its 19 months and I'm here and doing just fine. My cancer is almost gone and the doctors all shake their heads and call me a miracle man. I'm not going to tell you it was easy... it wasnt! The treatments and various procedures along the way were often awful. Side effects were no bargain either. If I could do it so can you! Dont make yourself crazy and dont waste time worrying. Just do what you have to do. Some say be positive. I dont know if that always works either. Just be! I have every confidence that 20 months you'll be sending some newly diagnosed cancer patient a similar note as this (paying forward). I hope to hear great things from you in future and I'm sure I will. Bob

+ Read More
Mary Harris
20 months ago

Hi Shawn: Our love and prayers are with you. Hold on to your faith and be strong. We love you! Becky and Grandpa!

+ Read More
Rio
1 month ago

To Shawn and his immediate family. I too saw your post on Jackie Zuks Facebook post and wanted to know if you or your immediate family can contact me through Facebook. I am a master healer who started as a student and I was taught how to heal people that have all different kinds of problems such as cancers, tumors, disease, heart disease, prostate and much more. I offer this healing technique to you for free and for everyone fighting cancer. Inbox me with compassion and harmonious

+ Read More
Kristin Freeman
19 months ago

Sending lots of prayers your way

+ Read More
Patricia Sabini
19 months ago

Praying for all of you

+ Read More
Mary Harris
25 months ago

Hi Shawn: It was great getting to talk to you a few minutes. Will be praying for everything to go smooth for your week off and then the next treatment period. Grandpa Wayne sends his love.

+ Read More
Bridgette Danielle
26 months ago

Whenever you're up to it, you're more than welcome to come visit Boston! I'm sure Dave could make some time and I should have my spare bedroom set *hopefully* in during vacation! Glad to see the positives in your update :)

+ Read More
Mary Harris
26 months ago

Hi Shawn: Why are you in the hospital again? Wayne talked to Wayne Jr. a couple of nights ago and he did not mention you being back in the hospital. Sorry to hear this. Wayne and I have not gotten up there yet, as I have been having some medical problems and he has not been feeling well. When would be a good time to call you and talk a few minutes? I can contact you through Facebook. Take care and know we are praying for you and love you.

+ Read More
Mary Harris
31 months ago

Hi Shawn: Am glad you are through with the chemo. Pray the rad.will go well. Wayne and I are going to try to get up your way in August if not before. Am looking forward to meetin you. You are in my prayers daily. Love you! Becky and Wayne.

+ Read More
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