Wednesday, January 8, 2014

Upcoming Events Honoring Sarah

Dear Family and Friends,

Below please find information on a few upcoming events where Sarah will be honored. If you have information on an additional event, please feel free to email me the details at and I will add it to this post.

Thank you and God bless,

Pilates Mat / HIT Class
On Sarah's birthday, Sunday, January 19th, Marisa Morgan (friend of Jason and Sarah's from Riverdale, NY) will host a pilates mat / HIT class at Riverdale Presbyterian Church from 2:00-4:00pm. Registration for the class is $20, and all funds raised will be put towards the set of stones in Central Park that Jason plans to purchase for Lena with a special message from Sarah engraved on them. 

The session will be pilates mat mixed with blocks of tabatas (4 minute interval trainings). It will be an hour long session, but the venue is booked for two hours in the event two sessions are needed due to a high number of registrants. Please bring a mat as well as a set of light weights, if you have them.

Riverdale Presbyterian Church
4765 Henry Hudson Parkway W
New York, NY 10471

To register for the session, please follow these steps:
  1. Visit this link via PayPal.
  2. Enter "" in the "To" line.
  3. Enter your email address in the "From" line.
  4. And follow the prompts to send a donation for $20.00 (or more, if you wish to do so). The last screen will allow you to include a subject, or memo, for the donation. Please put "Pilates Registrant" in this box. 
Key to Keys
On April 5th, Julie Cole Lanahan (breast cancer survivor and friend of Caitlin Horn) will bike with several other men and women from the Ulman Cancer Fund for Young Adults from Key Highway in Baltimore, Maryland to Key West, Florida. The UCF provides support, education and resources to young adults affected by cancer, their families and friends. The group will stop in multiple cities along the east coast to visit with and provide cancer care bags to other cancer patients. Julie has dedicated her ride in this year's event to Sarah. 

Read more about Julie's story, the event and her fundraising efforts here.

San Francisco RNR Half Marathon
On April 6th, Dave Halperin (Sarah's brother) will race in the San Francisco Rock-n-Roll Half Marathon in honor of his sister Sarah. In addition to running the race, Dave is raising funds for the National Breast Cancer Foundation. 

Read more about Dave's race and the National Breast Cancer Foundation here.

Monday, December 30, 2013

Central Park Stones for Lena

Dear Family and Friends,

The Horn and Halperin families are raising funds for a special gift for Lena. Jason plans to purchase a set of stones in Central Park engraved with a special message from Sarah to Lena. This way, Lena always has a special place to visit in the beautiful city where her Mommy and Daddy first met as well as where they brought her into this world!

If you would like to contribute to this gift, please feel free to do so using one of two available options:

Online Giving:
Donations may be sent via PayPal to Please list "Central Park Stones for Lena" in the subject line.

Mailing a Check:
If you prefer to send a hard copy check, please contact me directly at for the Horn's preferred mailing address.

With sincere appreciation,
Caitlin Horn

Tuesday, December 24, 2013

A Celebration of Sarah

A Memorial Service and Celebration of Sarah's life will be held on Saturday, December 28th. 

Memorial Service - 12:30pm:
Vanella's Funeral Chapel, Inc.
Oceanside Chapel
2860 Long Beach Road
Oceanside, NY 11572

Celebration of Sarah's Life - immediately following:
The Lutwin Home
115 West Olive Street
Long Beach, NY 11561
Street parking is available on West Olive Street and surrounding streets.

Depending on timing the day of, either before or following the Celebration of Sarah's life, all family and friends are welcome to join in a ceremonial walk to the nearby ocean. We will announce the sequence of events for this at the chapel at the end of the Memorial Service.
*Please dress warmly! If you are interested in joining Jason in paddling out into the ocean, please bring a wetsuit and surfboard (or reach out to us if you need one or both provided for you).

Donations may be sent via PayPal to Donations received will be used to purchase a set of stones in Central Park engraved with Sarah's name and a message from Sarah to Lena. 

We are also working on a project of a book of letters for Lena. If you would like to write a letter to Lena sharing your favorite memories, stories and photos of Sarah, please email them to Meghan Horn at Meghan will collect all of the letters and photos and compile them into a hardcover book to give to Lena.

Please feel free to call or email Caitlin Horn at 843.566.2228 ( or Meghan Horn at 415.225.0975 ( with any questions. 

Lastly, we encourage our family and friends traveling from out of town to post comments below regarding flight information and offer carpooling options to one another where they may be available. 

Nearby lodging options:

Long Beach Hotel
405 East Broadway
Long Beach, NY 11561
(This hotel is four blocks from the Lutwin home. We have secured a group rate of $119.00 per night - please mention the "Horn" weekend rate when calling the front desk).

Allegria Hotel
80 West Broadway
Long Beach, NY 11561
(This hotel is on the ocean and is where the Horn and Halperin families are staying. If you call the front desk and ask for the bereavement rate, it is $135.00 per night.)

With love,
The Horn & Halperin Families

Sunday, December 8, 2013

No Place Like Home

Hi family and friends..a lot has happened since our last post on October much that blogging was not made a priority. Where to begin...radiation ended and with it came a serious skin burn that took many weeks to heal. We soon realized that this was likely the better situation of all of our soon to be concerns.

Back in the second half of October we went research crazy, reaching out to anyone and everyone that had a connection in the oncology world. We encountered a few oncologists that weren't interested in communicating from a distance and a few that were amazingly willing to provide input. So grateful for the latter. Many fingers pointed to a certain oncologist at MD Anderson in Houston with the most experience in this type of rare breast cancer. So we transferred all of our records and got on a plane and flew there on halloween. We were sad to miss Lena's trick or treat adventure...she was an octopus...again. It was good to get away to Houston and we joked that this is what it took to get a weekend away for Mommy and Daddy. We had a great visit there, really loved the oncologist, who was incredibly thorough and down to earth. She had us stay additional days for additional imaging - a move that seemed way more appropriate and aggressive than the wait and see image approach that Sloan Kettering had. Sloan Kettering's approach was to wait 10+ weeks before imaging. Here we were in Texas getting a jump on it. With the imaging came all the anxiety of each of the prior imaging tests...We decided to head to the coast and check out Galveston for the day before our appointment to hear the results. We had images of Orange Beach, Alabama and carribean clear blue water and sugar sands. But not so much. Drove out to the point and watched the tankers roll in. We looked for surfers doing some tanker surfing but found out the best place for that was 20 minutes up the bay. We had an epic round of mini golf, complete with life size dinosaurs. Sarah took me down with 3 holes in 1. My hole in 1 was on the last hole...the one where they take the ball back, where everyone gets a hole in 1. It was a great round of mini golf and that and the 3D movie we went to see was the last time we were up and about, out having fun. That was one month ago. So back to Houston and the anxiety of the results of the Houston imaging: bonescan was normal, brain MRI was normal, but the CT scan to chest revealed some deep chest lymph nodes that looked big and 'worrisome'. The doc wanted to biopsy the site so we made a return appointment for a week later and the plan was to go home and take care of things at home with our little one and then return for the biopsy. The doc laid out a few systemic treatment options including a clinical trial down in Texas. We returned on Tuesday night, the 5th of November. On Wednesday I went to work and as I was driving home Sarah's Dad called me and said that Sarah was having some extreme pain and he thought that maybe I'd need to take her into urgent care. As I finally pulled up to the apartment building Sarah's Dad called again and said that she was having trouble breathing deeply and the ambulance was on it's way. The FDNY was able to drive us to Sloan Kettering. We had no idea we wouldn't be out of the hospital for 24 days. A scan and an MRI of the spine revealed that the cancer had in fact spread to a few sites on the spine, and to the head of the left humerus, the sternum and the right fifth rib. Two days into our stay and the reality that Sarah had stage IV breast cancer had been thrown our way. Before we could even process it all we found ourselves down in the radiation bay at the hospital awaiting whether Sarah would undergo immediate radiation or if the pressure on her spinal chord could be relieved by surgery. The concensus was in and surgery was planned for Monday, November 11. That Sunday Lena came down to the hospital for her first visit with Mommy and Daddy. We had been away for five days in Texas, been back for less than one day only to be whisked away again to the hospital. It is difficult to even understand how little Lena must feel about all this. Thankfully her grandparents have been extremely constant in her life since last March especially and have always been there when we needed them most. Not only that, but so many family and friends have rallied to drop everything and fly into town to assist. The support has been amazing.

A big surgery and recovery and three more weeks in the hospital found us on the 7th floor hospital conference room with 14 family members from all over the country having a huge Thanksgiving feast. The next morning revealed results of another CT scan and this revealed presence of small bits of the disease in the bilateral lungs and liver. The news just continued to pile us deeper and deeper under. The tentative plan was to return early the next week and start chemotherapy. We got out of the hospital that day and had an awesome weekend with the Horn clan...gathered all the nieces and nephews together for the first time since they were just a few months old. They all rented a big brownstone in Harlem from a famous photographer who happened to be the sole photog for the Christo Running Fence project out in Sonoma County back in the '70s. It was an unreal weekend of celebration, feasting and toddler antics. The weekend passed, the family flew home and a regularly scheduled oncology visit found us back in urgent care. We were back in the hospital and an MRI revealed further compression of the spinal chord at a different vertebra. After much deliberation, the neuro-surgeon and oncologist came to the conclusion that they had to do another surgery to relieve the pressure on the chord and that if we didn't, there would be risk of paralysis. So the new plan was to operate again, then expedite radiation to the spine and a week after that, get Sarah back on chemotherapy. The ideal rules of waiting for 4 weeks post-surgery to radiate were out the window as this cancer was proving to be resistant to traditional therapy and is spreading.

The second surgery was a longer one and plastics was called in to spend a few hours closing up the surgical wound. Sarah was up and about walking a bit just the day after surgery and is recovering well. She is a serious warrior, taking a beating and battling on every day...always smiling big.

The long-term goal once the chemo stabilizes everything is to likely try to get to MD Anderson for a specific clinical trial that appears promising. Time to heal fast, continue the battle and get home as quickly as possible to be with our little Lena. We miss her terribly. She is with family and friends often and is having a great time, but being away from her is so tough. Lord please her our prayers; keep us on plan, make each step more and more successful, get this under control and make it disappear.

Sunday, October 6, 2013


I first want to say that I have been in a very tough place emotionally these past few weeks, and I apologize for being MIA lately to all of you that have been calling and emailing.  I truly appreciate all of you for checking in, but it's been very difficult for me to talk about everything that's been going on lately, not to mention the constant running around to appointment after appointment, which has been exacerbating my fatigue.  I guess the best place for me to start is to pick up where I left off last...

I began my radiation treatment just after Labor Day weekend.  It was decided that I will receive 6 weeks of treatment - 30 days total.  As of now, I am nearing the end of my treatment, as tomorrow will be my 24th day.  I was eligible for the clinical trial using the PARP inhibitor, so I'm also taking those meds twice a day while receiving radiation concurrently.  The way that the PARP inhibitor works is that it prevents the DNA of the cell from repairing itself after it is destroyed from the radiation. Both of these tools work together to help keep the cancer cells from growing.  The PARP clinical trial required three punch biopsies of the chest wall over three consecutive days at the start of my radiation treatment.  Two of the three were perfect, while one of them became really aggravated and infected, and it still has not healed completely.  Just one more bonus in this ridiculously long roller coaster of an experience.  So far, the side effects from the drugs have been very minimal, but I am now experiencing more of the effects from the radiation itself: the exhaustion from traveling down to multiple appointments everyday, as well as the cumulative effects from radiation, which has left my skin very red, itchy and burning.  My body is working overtime to repair the damage done to all the healthy cells, which is also contributing to my fatigue.  I was under the impression that I would be back to my self energy-wise a couple of weeks after radiation is over, but I was told to expect that it will take about 2-3 months.  My oncologist explained that the effects of radiation that I receive today won't be felt for another two weeks, which is why this has such a cumulative effect.  So at least the expectations have now been realistically set.  Expect the worst, and if it's not so bad, we're pleasantly surprised, right??

Now onto what's to come next.  I met with my oncologist last week for the first time since mid-July, just before surgery.  Based on what I was told in the days leading up to my surgery (that radiation would be the next step, followed by more chemotherapy), I went into the meeting ready to hear the next part of our plan for attacking this piece of sh*t disease.  So when I asked my oncologist what her plan was regarding the chemotherapy to come, she said, "At this time, you don't qualify for any other clinical trials...  I'm leaning toward not giving you more chemo since the tumors didn't really respond the first time, and I don't want to risk the toxicity to your body..."  I then told her how I actually would like to do more chemo since I feel that we have very little to throw at this.  She said that she could be on board with this, and told me about the two chemo agents that she would lean toward using.  She also told us that we need to put some serious thought into it because, if we're in a situation where I truly need it down the road because of a recurrence, and a clinical trial would be my best option, then I would be excluded from many of those trials because I had already had these chemo agents in my system.  So we're at a crossroads as to where to go next, and we are in need of some major medical advice from the best of the best.  I feel scared that my doctor just doesn't know what to do with me.

So this meeting led me to do a little reading into the specifics of the cancer we're fighting, which led me into another downward spiral.  After my diagnosis six months ago, I promised myself that I would stay away from the internet when it came to looking at the specifics of my case.  I knew that we had a tough fight ahead, and reading some things online would not help my positive outlook that I so desperately needed to hang onto.  I remember when I first saw that I was staged at IIIC, I focused on that for a while, before I pulled myself together and was ready to move forward emotionally.  The day after meeting with my oncologist last, I pulled out my Mayo Clinic Breast Cancer book and began reading some information about Triple Negative breast cancer.  It basically said that the good news for being TN is that there is a higher chance of the cancer to respond to the chemo (that did not ultimately happen in my case - strike 1).  I then went on to read about metaplastic cancer, and read that there is a lower chance of this type of cancer to have lymph node invasion (again, not in my case - strike 2), and that there is a higher chance of recurrence within the first five years, but that if it did not happen, then the good news is that there is a lower chance of recurrence after that.  I had to stop there, because after reading those points, I was bawling and wanted to rip up the book and break everything in sight.

So those are some of the reasons why I have had such a heavy heart lately.  I can't live like this for the next five years, so I know that ultimately, I need to make a choice and choose to live each day, not in fear of the what-ifs, but with thanksgiving in my heart for everything that I am blessed with.  I know that it will come, but I am just not there yet.   Right now, I am super paranoid about every single little ache and pain that I feel...  my shoulder, my chest, my lower back hurts - Why? What is that?  Is that cancer?!  This is no way to live!  Last Tuesday, I had to get an ultrasound on my left neck lymph node, as it had been swollen for a couple of weeks.  It was mental torture.  It was a complete flashback to the day that I had my mammogram last March, which led to the discovery of the tumors.  The technician did her thing, and then told me to wait on the bed while she showed the films to the doctor.  She could tell me nothing.  I was trying to read her face - nothing.  The technician then came back to do more imaging.  Same as my mammogram...  "Mrs. Horn, we need you to come back for more pictures..."  After the technician left again and I continued to wait, the panic crept in, tears began to fall, and the constant praying ensued.  The radiologist then came in to do more imaging herself, and she asked me if I had a recent cold (no, not really).  After what seemed like FOREVER, she then said that at this time she thinks it's reactive (to my body fighting off germs, colds, viruses, maybe even the infected punch biopsy site, etc...), and that if it does not go down in the next month or so, then my doctor may want to order a biopsy of it.  So all in all, it was good news, but an excruciating experience, nonetheless.  

What's next?  We are first asking my oncologist to present my case at a meeting with her boss in attendance, as well as several other oncologists, where they will discuss the case, and hopefully come to a consensus as to how to proceed.  We are also going outside of Memorial Sloan-Kettering to seek a second opinion.  We are looking to contact some doctors at MD Anderson in Texas, Dana Farber up in Boston, and Stanford as well.  This is MY LIFE on the line here, and no doctor is going to care about it as much as Jason and I do, so we are doing everything that we possibly can to find the doctor that has the experience that we so desperately need with triple negative metaplastic breast cancer so that I can stay here with my husband, and be able to watch my daughter grow into the woman that she is destined to become.

Saturday, August 10, 2013

The Road to Recovery... a long one, I'm finding out.

These past several weeks have been quite a ride, as Jason mentioned in the last post.  I had my first mastectomy just less than two weeks ago, and am slowly healing from that.  I am quickly reminded of my limitations everyday, and that this was a major surgery, but hoping that I turn a corner shortly, allowing me to do more and more.

The surgery went very well, with no complications, but the pathology report that followed brought with it some very disconcerting news.  Remember when we told you about the last scans (MRI and PET) that I had last month just before surgery?  They had shown: (1) necrosis of the main tumor in the left breast with these new smaller tumors surrounding it, and (2) no signs of disease in the left axillary lymph nodes and chest wall (the internal mammary nodes).  Well, pathology after surgery found those tests to be inaccurate.  Upon further evaluation by putting it all under a microscope, the left breast was found to be riddled with cancerous tumors - taking up 90% of the breast.  The main, originating tumor showed no necrosis at all, and the smaller surrounding tumors had grown, despite the fact that I was receiving chemotherapy.  We were first elated weeks ago to hear that the results of the MRI showed the necrosis of that main tumor, when in reality, it all looked the same inside - cancer everywhere.  Also, there were nine lymph nodes removed from under my arm, and of those nine, four nodes contained cancerous cells.  Of those four, one node had the largest number of cancerous cells, and it was that one particular node that showed signs of a small amount of necrosis.  So how did these scans get it so wrong?!  That is my burning question!

I am terrified, and have lost all trust in my body, as well as these diagnostic machines, whose job it is to paint a picture of what is happening inside of me.  What does this mean for my future scans that will be happening to manage my progress?  When I asked my surgeon about how these tests showed such different results than what was actually happening, her response was, "No test is 100% accurate.  The only way we truly have answers is when we go inside and put something under the microscope."  So how realistic is it to do that for the rest of my life?  Not gonna happen.  As far as those internal mammary nodes inside the chest wall, we really have no idea what's going on in there now.  I will, however, visualize that the cancer is gone, and hope and pray that the scans got that one right.

The next step is for me to begin radiation treatment right away.  My oncologist would like me to be in a clinical trial that uses a PARP inhibitor along with the radiation, which has shown very promising results for women with triple negative breast cancer (which is what I have).  At this time, I am not 100% sure that we will qualify for the trial, but I have an appointment with a radiation oncologist this Monday, so we shall see how that all unfolds.  We will also learn how long I will have to go for treatments.  At this time, all I know is that it is everyday, Monday through Friday, for either four or five weeks.  Again, we'll learn more Monday.  I am a little nervous about radiation because I know it does  damage to skin and to underlying muscle (keep in mind, my heart is right there in one of the four areas that they will be targeting).  I can barely lift my arm now from my surgery, and this will be another obstacle in the way of getting my range of motion back, but I am young and determined to heal completely - I just expect it's going to hurt... a lot.

I'm not sure exactly how long of a break I will get between radiation and the next step, but the plan is for more chemotherapy.  Again, at this point, I have no idea what drug my oncologist will choose, or for how long, but it will all come in time.  Right now, I can only focus on the next baby step, which is to get stronger everyday, and then march into my radiation treatments with a brave face.

Sunday, July 28, 2013

Moving Forward

It's been a whirlwind these past few weeks.  July 17th came, and with it, a stressful few days that mirrored the original diagnosis back in March.  The tumor measured significantly larger and the docs, not knowing what the growth was, ordered an immediate MRI and PET scan to try to figure it out.  The best outcome would be that the growth was necrosis of the tumor, meaning that the chemo worked and the death of the tumor was leading to a larger 'growing' mass of dead cells.  After extremely tense waiting, the MRI actually revealed that the large mass was in fact necrotic - a huge reason to celebrate.  However, it also revealed that there were several new smaller masses around the main mass that were consistent with malignancy.  Another tense 24 hours of waiting for the PET scan results also revealed some great news - that there was no peripheral disease, and that the lymph nodes in the chest wall and left axilla that had lit up at the pre-treatment scan were no longer showing signs of the presence of disease.  A big reason to celebrate.  Those new masses in the left breast though were lighting up as cancerous.  The docs quickly decided to stop the remainder of the Taxol chemotherapy, and made plans for surgery, which is happening tomorrow, July 29th.  After a few weeks of healing and pathology tests on the new masses, a new round of chemotherapy will begin as soon as Sarah has recovered from her masectomy.  Radiation will follow.  So a belt and suspenders approach...get it out of here, zap the body with more chemicals to reduce the chance that any lingering cancer cells are left around, then zap it with radiation, too.  A few weeks have gone by, the masses have grown at an alarming rate, causing Sarah a lot of pain, and we're ready to get this cancer out of here.  The other night we raised a glass to Sarah's left boobie, and the toast went a little something like this:
Sarah: Well, boob, you've been really good to me.
Me: You've been good to me, too, and you've been good to Lena, but it's time for you to go.  It's not you, it's what's inside you.

The surgery is tomorrow.  Nerves are tense, but the overwhelming feeling is one of being ready to knock this cancer out of the universe.

Thanks for all the love, support and prayers.  Please keep them coming.  More to follow...