Prayers for my Sister

For: Nicki Goodwin
Philadelphia, PA
Organizer: Patti Shetz
of $60,000 goal.
Raised by 396 donors
63% Complete

The Story

Nicki, is my 35 year old little sister, stylist, therapist, personal comedian and best friend...not to mention wife and mother of the most beautiful 18 month old little boy you ever laid eyes on.  Two weeks ago we discovered her newest title will be "Cancer Fighter".  She was diagnosed with stage 4 Spindle Cell Carcinoma which is a rare form of soft tissue cancer.  Unfortunalty, rare means little is known about this cancer and more importantly how to treat it.  She is about to begin a long journey with the final destination being recovery.  She will be unable to work during her year long treatment so I'm on a mission to make her ride as comfortable as possible.  Please keep Nicki in your prayers.

Fundraiser Updates

Posted on October 1, 2015 by Patti Shetz
First and foremost, I need to start by saying "thank you." Thank you for the contributions, thank you for the prayers, thank you for the meditations, thank you for the positive energy, for the healing light, your words of support, for your listening ears and for your love. Our family is overcome with gratitude and quite frankly speechless, wait a second... Ahhh, well played.
At the peril of sounding horribly cliché (re-reading that made me realize there's nothing more cliché than that sentence), edit: at the risk of sounding like one of Jamie's Pinterest boards, just because we can see the light at the end of the tunnel only means... we're still in the damn tunnel! Seriously, we get it. Life is hard and I'm pretty sure there's not one more lesson we need to learn. I keep waiting for Meredith Baxter Bernie to hand me lines for a lifetime movie sobfest. Don't worry, I won't make you wait until the end to find out Nicki's latest scans came back clear. Yay! This gave us the thumbs up to move forward with the reconstruction of the reconstruction. Most of you know, our time in Chicago ended in yet another less than successful attempt to fill in the missing pieces. As a sidenote, I would like to state that we have nothing but love and admiration for the talented team in Chicago. It is only through their guidance that we find ourselves in the care of Dr Fredrick Menick and his amazing staff. There's no question he's the only man that can give me my sister back. And there's just something about this guy that you can't help but love. For example, coming out of a 12 hour surgery wearing an awesome country western belt buckle and cowboy boots, how can you not love that. Most importantly he puts my sister at ease and that's worth finding a scorpion in my sneaker...guys listen that was really traumatizing and I haven't slept in days. Do not ever come here if you don't have to, man.
On September 24, Nick made it through another microvascular surgery. I'm not exaggerating when I say that every inch of Nick's body has been repurposed at this point. Her right forearm is now covering where her nose used to be. Her left forearm is where her lip used to be. The skin from her cheeks was stretched for skintone matching and now her forhead is being expanded for the outer lining of her nose. I'm sure none of that made sense. I'm looking at it and I'm still trying to figure it out. Thank you all for being patient with us and I know so many of you would love to see Nicki. The truth is she's been in hiding for close to two years now and we are all hoping and praying that very soon she will feel comfortable enough to reintroduce herself. In the meantime, I'm asking all of you to please be mindful when you see someone that looks different, please do not stare at the same time, please do not look away. And when you find yourself being judgmental please take a minute to think of my sister and feel free to be inspired. On behalf of my sister, Nicki and our family, we thank you for your undying support and love.Nick will undergo multiple surgeries over the next several months, which requires an extended stay in Arizona. Your kind generosity has helped Nicki in ways you cannot imagine. We're hoping to raise more money to help facilitate what will hopefully, bring Nick closer to the light at the end of the tunnel. With love, Patti

Posted on February 28, 2015 by Patti Shetz

The month of March will mark 2 years since my life changed forever. I'm proud to say I remain "C" free. I survived stage IV cancer! I remind myself of that almost everyday as I continue down this painstakingly slow path of reconstructive surgeries. As I do my best to move forward, I'm still adjusting to my new normal, which consists of wearing a surgical mask 24/7. It took me over a year just to look at my face in the mirror again. Thank God, my 3 year-old son Bryce, is completely oblivious to his mommy's appearance. He is the happiest carefree kid I've ever met!
I'm currently recovering from yet another surgery to help improve my skin's elasticity. I'm hoping and praying I'll be done with this process in about a year. In the meantime, I'm trying my best to count my blessings, learning how to live in the moment, and realizing that stupid selfies aren't everything!
thank you all so much for the continued prayers.

Posted on December 3, 2014 by Patti Shetz
Posted by Jamie Shetz

Since March 25, 2013 life has changed. Although one thing that has remained the same is Nicki's strength, determination, and feistiness. But, she won't want to hear any of that because she will undoubtedly say,"I have no other choice." Despite all of the surgeries and pain associated with them, she is the most dedicated Mom I have ever known. Being her twin sister, I am in awe of the way she has dealt with all of this. I use to look at her as my equal but not anymore. She is a force of nature and someone to be reckoned with. I suppose you never know what someone is capable of or even who they really are until push comes to shove. 
Since the last update, we have decided to change doctors and Nicki will be under the care of a reconstructive surgeon in Tucson, Arizona. Although, the doctors did express that she is a challenging case we feel very secure and optimistic with her team of surgeons. On September 19th, a 12 hour surgery was completed in order to build a foundation for the reconstruction. The next surgery will be a 10 hour surgery on December 9th. Again, this surgery will be focused on building a foundation and increasing the elasticity of her facial skin by inserting expanders. So how many more surgeries after this and when is the next one? Her next surgery is expected in the spring and at this point the doctors have said that her surgeries will hopefully be done in a year. 
The most important thing to take away from this update is that Nicki is C free! I refuse to give power to actual name so I just say "C." In other news, Bryce turned 3 in October. He won't stop moving for a minute, is not phased by any of this, and is a happy little munchkin. Please keep up the prayers and positive energy you have all been sending Nicki's way. As Nicki and I say, we are "Locked and Loaded," for this next surgery! 

Posted on August 1, 2014 by Patti Shetz

What a year.  If there was an award for challenging the limits of the human body, it’s probably safe to say Nick takes home the gold.  It’s really just unimaginable what Nick has been through in such a short amount of time.  It’s funny how I feel like the year flew by and Nick feels like each day is a year.  Everyday is just an obstacle to getting her life back.   I know she just wishes to wake up a year from now with everything in its proper place and in working order. I know that we all want the same.  For the record, these are just my words.  Nick would never admit she struggles.  The simple things we do everyday without even a thought have become the most challenging.  I’ve been guilty of feeling self conscious about not wearing makeup or when I’m having a bad hair day or when my socks don’t match or I’ve realized too late, I’m wearing plaid with stripes…you know, you all have your thing.   Sometimes your thing makes you feel like a rock star and sometimes it can make you feel like a troglodyte. (Bucket list: use troglodyte in a sentence, check) What if you woke up and your thing was gone?  Just gone. No warning, No time to adjust, no instruction on how to adjust and no idea when you’ll ever feel comfortable just going to Target. Stupid, boring Target!  The mundane things we do everyday seem like a dream right about now.  Nick is introducing herself to the world again at her own pace.  Everyday gets better, but I’m guessing not easier.  Again, she’ll never tell you that. 

Nick’s last surgery in Chicago was a mere 12 hours and the surgeons seemed happy with the results.  Happy means the blood supply was strong enough to support the tissue transfer and the foundation survived, which was not the case last time.  The next surgery is the longest and most complicated surgery Nick will have to date (an estimated 16 hours). It will be another micro vascular surgery to transfer more tissue and muscle from her back to use as the inner lining of the nose. These first two surgeries unfortunately just aren’t designed for ascetics, but essential to the structuring and refining phase.  The surgery date remains in the works, but presumably the last week of August we’ll be heading back to Chicago. I promise to keep you all informed on Nick’s status.  PS.  Even without her “thing” my sis has always been and will always be my Rock star. 

Thank you for keeping my sister in your prayers.   ­­­­­

Posted on March 11, 2014 by Patti Shetz

On March 25, 2013, life threw us a curve ball.  Not just any curve ball either, this one was like, filled with rocks, wrapped in barbwire, and I’m pretty sure I remember it spitting fireballs at us.  Well, turns out team Nicki is surprisingly good at ducking and dodging.  Now that I cleverly disguised avoidance as our family’s greatest skill set let me bring you all up to speed on Nicki’s journey.

As of December 12, Nicki completed her final round of chemotherapy.  It was an emotional 16 weeks, to say the least.  Not all bad.  Thanks to the ladies at Joan Karnell Cancer Center we had more than one episode of inappropriate and uncontrollable laughter.  Jeremy had the home care down to a science, and I’m pretty sure He has earned at least his nursing degree. I did find it concerning when he turned and shouted "scalpel" but luckily I had one.  What can I say, we just work well together.

Nick got through her final week of chemo like a superhero.  She busted out of there and had more energy than anyone expected.  She baked 5000 cookies on her first day of freedom and even ventured outside of the house for the first time to pick up some stocking stuffers.  I think we were all so happy she seemed to be having a few good days we forgot to say "Hey, you have no immune system right now, let's just sit in a bubble and watch a movie."  It must have caught up with her because a few days later she was back in the hospital for 2 blood transfusions.  Determined to be home for Christmas she miraculously persuaded her blood count to reach a safe level and was back home to celebrate Christmas.  Side note: literally giving her blood a pep talk. “Come on little guys. I know you can do it!” and so, on.

After receiving a clean CT scan and travel clearance in January, it was high time to hit the road and meet some of the top surgeons in the country to discuss the possibility of reconstruction.   This time we were a little more experienced with the process and armed with questions we didn’t necessarily want the answers to.  We always have a little huddle before we go in, just to remind each other that no matter what they say, it’s just an opinion.  If we don’t like it, we keep moving until we find one we do.  We found that opinion in Chicago.   

She will be in the hands of Dr. Gary Burget ( Starting on April 3 and every 6 to 11 weeks over the next year. The first two months are crucial, so it’s essential we set up a temporary home base in Chicago.   We are hoping to get settled in by April 1st and aim to reunite Nicki with Bryce two weeks after her initial surgery.  Not at all familiar with Chicago, any assistance in finding affordable accommodations suitable to our situation would be welcome.

We are all affected by cancer.  We have all lost someone or know someone who has experienced that heart wrenching and devastating loss.  Sadly, I know now that although my sister's cancer is rare her fight is not. We're all fighting for someone we love, and yet you're taking the time to read and share Nicki's story.  Thank you for helping me fight for my sister.

Posted on November 17, 2013 by Patti Shetz
Yesterday I mentioned and thanked our family and friends who have gone above and beyond anything we could have imagined. After posting the update, I realized I neglected to mention the amazing medical team at The Joan Karnell Cancer Center of Pennsylvania Hospital who have basically become a part of our family, like it or not.  I would call you all out by name, but for now I'll respect your privacy.  Thank you all for making Nick's time in treatment not so horrible, but, maybe we can get a little Starbucks Sumatra Dark Roast Coffee Keurig K-Cup action?  Maybe an omelette station? much?  In all sincerity, Thank you from our entire family.

Posted on November 16, 2013 by Patti Shetz

I have a confession to make to all of Nicki's supporters who have been inquiring about an update on her status.  My standard response, "I just need to find the time," is obviously a sham exposed by my Facebook Status updates about watching Nicki sleep during chemo.  The truth is, I don't want to write it.  Maybe if I don't put it out there, it's not happening, Or, maybe, I can just delete delete delete, rewrite, submit, and we would be in Cape Cod enjoying a clambake, and, yes in my rewrite Nick will eat clams, and I fill out a bikini top something larger than a 6x.  Apparently I have a small percentage of left brain functionality that always shows up late in the game to bring me back to reality.  So, I promise to do my best to bring you all current on Nicki's journey.  Buckle up, it's rough.  As most of you know, the outcome of the 1st surgery on July 31st was devastating.  I was fairly limited in the details mostly because Nicki has decided not to look at her face and I knew she would read the update.  Now with some time behind us she is still processing things and although she still has not seen her face she is completely aware of what's missing.  Let's start with what's not missing.  My sister's spirit, sense of humor, sarcasm, a husband that puts all others to shame, a 2 year old who doesn't even notice his mommy looks different and lastly a team of family and friends that would drop everything for a chance to help.  So, what's missing?  In short, since Nicki's cancer invaded her nasal cavity and surrounding areas it was necessary to remove her nose, a portion of her cheek and her upper lip.  Since the first surgery Nick has endured countless visits to the ER and a few failed attempts at reconstruction due to radiation necrosis.  

Thankfully, Nick's condition has stabilized, and I'm able to report a positive update.  She's half way through chemotherapy and doing well. Recent scans do NOT show any signs of a tumor!!!

A note from Nicki:

I feel like the clouds are finally starting to open up and I can start seeing a glimmer of light. I still have a long road ahead of me involving many reconstructive surgeries, so I'm trying to pace myself by setting mini goals in between. My first goal is to finish chemo successfully. My final treatment is December 12th and believe me that day can't get here soon enough.  You might say I'm a little eager to start living my life again.  Your prayers and support are my inspiration.  I am truly humbled.

Posted on August 20, 2013 by Patti Shetz

As many of you already know, Nicki underwent surgery on July 31 to remove the cancer that planted itself on her face. 40 surgical biopsies later the 10 + hour surgery was deemed a success.  This is wonderful news, right?  Why isn't the surgeon smiling?  I've learned to always wait for the “but” before celebrating.  What I heard next left me paralyzed and unable to breathe.  It was discovered during the surgery, the cancer had invaded the entire nasal cavity in addition to the other cheek and full upper lip.  The surgery was far more radical than anyone had anticipated, including Nicki.  My heart was broken for her.  The thought of her waking up to discover what she had just lost was unbearable.  Every scenario that played out in my head was worse than the last.  How will her son react?  How will Jeremy deal?  How will she smell, eat, talk, sneeze...etc.  At this moment I realized, of all the sisters, I’m the one you least want to be with in a crisis situation.  After a group hug, Jeremy was sent in to see her while in recovery.  I’ll never forget the look on his face when he returned to the family lounge.  His eyes were filled with both fire and tears but he was determined not to cry. I’m sure he thought if he did both me and Jamie would have stopped breathing.   Jeremy set up camp in Nicki's room for 9 days before bringing her home to us.   Now the real work begins.  Nicki is still trying to take it all in, as you can imagine.  Sure, she has weak moments here and there but even her cute little surgical mask doesn't hide her attempts to smile.  It’s a long road to recovery and we’ll be taking the scenic route.  The first reconstructive surgery is already scheduled for September 3rd and Chemo will begin shortly after.  How quickly she heals will play a role in scheduling future surgeries.  There isn't a doubt in my mind that we're all witnessing a miracle.  Thank you from the bottom of my heart for all of your thoughts, prayers and words of wisdom.

Posted on August 1, 2013 by Patti Shetz
By Nicki's amazing husband, Jeremy,  who I love more every second.

So it's day after Nicki's surgery and she's in the ICU recovering. She's in a little bit of pain and discomfort but the nurses are doing a great job and keeping her feeling good. We've heard from her surgeon who said they were able to remove all of the known and visible tumors. At this point we're waiting for biopsy results of the outer margins, so it may be a few days before the next update. Although the surgery was more extensive then originally anticipated, they were able to start the reconstruction and get her on the right track, that track being cancer free and living her life as intended. I've never met a more resilient person than Nicki and I am so lucky, so freakin lucky to call her my wife. I'm sitting next to her right now, and there is no place I'd rather be.

A message from Nicki's twin sister Jamie:

There have been so many people who have asked what they can do to help during this journey to which my response is always the same please send positive thoughts or pray. I know it's vague so I have a request that I need as many people to please do in order to help its a very specific request: **We really need good news on this pathology report. Can you please pray and anyone else that you know (kids too) have them pray or if they don't pray, just have them picture the doctor telling Nick and Jeremy that she has clean margins and it came back as being cancer free. Have them HEAR those words "CANCER FREE." THERE IS POWER IN NUMBERS

Posted on July 26, 2013 by Patti Shetz

Since I was diagnosed with cancer 4 months ago my main goal was obviously to get it out of me. As my doctors have explained to me, surgery is usually always the first mode of treatment. If the tumors were on my leg or arm it would have been a no brainer to get me into the operating room as fast as possible. Unfortunately, this cancer has decided to make itself right at home smack dab in the middle of my face. Obviously cancer sucks no matter where it’s located, but when you’re in the prime of your life and suddenly faced with a stage 4 cancer diagnoses and a potentially disfiguring surgery it really sucks!!! Taking this into account, my compassionate team of doctors and I decided to try a round of chemo and radiation first. As you’ve read in previous posts, the treatment was not successful. 

In an effort to figure out the next step, last week I had several biopsies taken and this week we got the results confirming all specimens tested positive for cancer. After hearing the disappointing news, I’ve decided it’s time to move forward with the surgery. Once again, let me just state: CANCER SUCKS!!! I wish I could avoid the operation but at the end of the day it’s about my life, not about my looks. My surgeon believes he can remove the tumors, but due to this rare form of cancer, he admits there’s always a chance of missing a microscopic amount. As worrisome as that is to hear, I choose to believe he will be successful and any small cells remaining will be killed with another round of chemo I’ll probably receive after I’ve healed.   

The big day has been scheduled for Tuesday, July 30th. It will be a 10+ hour operation which will involve the removal and reconstruction of the right side of my nose, upper lip and portion of the right side of my cheek. I’ll probably also loose a few of my teeth just to top things off! 

So now that the next step has been determined, the number 1 question I’ve been getting is “how are you feeling”? My honest answer is I’m terrified! Aside from delivering my baby, I’ve never been hospitalized before much less faced (no pun intended) a surgery this massive it involves staying in the ICU and waking up to a new face. With that said, hopefully I’ll be waking up to a new cancer free face with many, many happy years ahead of me. 

Your support through this crazy time in my life has made a huge difference! I’ve never imagined it was possible to feel such love from so many people. I truly thank all of you for your well wishes and prayers! 

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