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 hornfamilyfund@gmail.com. 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 caitlinmhorn@gmail.com 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 hornfamilyfund@gmail.com. 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 horn.meghan@gmail.com. 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 (caitlinmhorn@gmail.com) or Meghan Horn at 415.225.0975 (horn.meghan@gmail.com) 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
516.444.4444
(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
516.889.1300
(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 6th...so 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

Crossroads

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...

...is 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...

Sunday, July 7, 2013

Plateau??

Let me start by saying sorry that it took so long for an update...  It has been an incredibly busy month.  I want to first celebrate the good news in our lives. Jason was awarded his orthodontic certificate a few weeks ago when he graduated from his residency.  He still has a couple hoops to jump through before he is truly finished with school though.  Remember that written Boards test that was scheduled for April?  Well, that's now set for July 13, and he has to finish a couple of other loose ends, and then he will have a tremendous weight lifted off of his shoulders, and we can bask in the fact that we made it through his residency. We are so very grateful to the director of his program, as he has allowed Jason to balance the end of his residency with all the other happenings that we're dealing with during this battle.

My body has tolerated the Taxol very well over the last several weeks in comparison to the last drugs I was given.  I have the occasional body aches and pains, some grogginess, extreme fatigue, and my new personal favorite: hot flashes.  But, there are no stomach issues, so I'm not having to deal with any more nausea or lack of appetite, which is a huge relief.

My new schedule is to see my oncologist once every three weeks while on the Taxol, so I'm not getting feedback on how the meds are working each week when I go in for a treatment.  The last time I saw her though was last Tuesday, and the report was a bit upsetting.  When I told her that I had been having some pain in my left breast again, she went to examine it, and when measuring the tumor, she said that she was again disappointed with the lack of progress made by the Taxol in the past two weeks since she had last examined it.  Three weeks ago, on June 19th, when she last measured the tumor, it measured at 4.5cm x 5.5cm, and last week on July 2nd, it measured at 5cm x 5.5cm.  I could first freak out and interpret that as a growth, but I'm not.  You have to remember that this is measured with a measuring tape, so lots of room for human error.  Instead, I am looking at this as yet another plateau like the one we had back at the beginning of May.  The doctor was disappointed and concerned that there wasn't more shrinkage, so she said that she wants us to get in and see the breast surgeon before we see her again in two weeks to get another opinion as to how these tumors are responding to the chemotherapy, and whether or not we should stay the course or stop and go straight to surgery.  So as of now, we have an appointment set to see the breast surgeon on July 16th, and then we'll be back to see her the next day, on the 17th.

When leaving her office, my heart sank a bit.  I'm really trying hard to not allow the fear to settle in, and to remain positive, but it can be hard at times.  I remember my doctor's words about how a good response to the chemo makes for a better prognosis...  so the fear is definitely there.  It's just so hard to sit and let the days go by just waiting, and having no control over any of this.

I go tomorrow for my treatment this week, so I am gladly welcoming the intake of medicine, and praying that the meds continue to shrink the tumor.  We won't have any news to report until the 17th after we've seen both doctors, and they've had the chance to discuss everything.

Please continue to pray for us, and continue to send all that great healing energy my way.

Tuesday, June 4, 2013

Phase 2 Begins...

Let me first start by saying that the tumors are shrinking - Hallelujah!  No official scans yet (those won't come until I am finished with all of my chemo, so sometime in August or September most likely), but with a crude measurement, one can certainly feel them breaking up and getting smaller.  In the words of my oncologist: "I am so thrilled!"  I know now that because there is this favorable response to the chemo, my prognosis is looking better and better, which needless to say, allows me to breathe a bit easier.

I had my first dose of the Taxol last Friday, and it was a very interesting experience.  Apparently, about 25% of patients can have an allergic reaction, to where they have trouble breathing, and the throat can close, etc...  The doctor and the nurses told me that in order to prevent any allergic reactions, they will first load me up with a steroid, and then heavy doses of antihistamines before administering the drug.  And then they will monitor me very closely during that first infusion.  So, after hearing that, I was on pins and needles before going in, not knowing if I was going to fall into that 25% category or not.  After the third pre-med, I was very out of it, which was probably a good thing looking back.  Even though I was still awake, I was way less anxious about the medication that was about to be given.  And then once I was halfway through the bag of Taxol, I knew I was going to be fine.

The side effects from this drug are very different from the other two drugs I was given.  So far, I have been very fortunate not to have any of the stomach issues that I've had for the past two months.  I've been able to maintain my appetite and eat everything, with no aversions.  I have had, however, some mild aches and pains in my muscles, and I am extremely tired all the time.  I don't expect either of those two things to dissipate any time soon though.  In addition, I feel like I'm in a slight 'fog' that isn't lifting, which is frustrating, but I'm hoping that will come to an end quickly.  After taking it all in, I'd still rather deal with these issues than the nausea any day.  Oh, and I almost forgot - there is also a chance to develop some neuropathy with this med (with it not resolving until about 6 months post treatment), but I'm praying that I am one of the lucky ones that isn't affected by that.

We just found out tonight that I will be getting the weekly dosing of this new drug, which also makes me happy.  Even though it will be a slightly longer regimen (12 weeks total), it will be less neurotoxic, hopefully keeping the neuropathy at bay.  My next round is set for this Thursday, June 6th.  Now we know what to expect for the next 3 months, and that this will put my surgery into September.  But for now, we're trucking along, one week at a time.

Thank you again for the constant support and words of encouragement.  It's very hard to keep my fears from getting the best of me, but I can feel that part of my strength comes from all of your love pouring in.

Tuesday, May 21, 2013

Round 4

Well, I did it...  I finished all four rounds of the first two medications, called A/C for short.  Now I'm on track to continue with treatment, starting a new medication (Taxol) next Friday the 31st.  I will most likely be getting Taxol once a week for the 12-week duration, but there is a chance that I may be getting a larger dose once every two weeks - it depends on the "latest research" that will be coming out at a conference next week.

Last Tuesday, we went to see a breast surgeon, and she happily reported that my axillary lymph nodes were much smaller, and barely palpable.  The size of the tumor in the breast, however, was relatively the same, but it had changed in consistency.  She felt very confident that the chemotherapy was working well - that's all I needed to hear to breathe just a little bit easier.  Two days later, we went back to see my oncologist, and she also felt the same changes that the surgeon had.  She gave me a full dose of chemo, and said that I'll be starting on the next set of meds in two weeks, continuing this treatment before we move to surgery in the fall.

This last round was a bit tougher than the last two, leaving me in bed for a couple of days (hence, the reason for the tardiness on this update).  But, I am slowly gaining more strength each day now.  One thing I've learned is that no two rounds have been the same for me.  But, feeling the tumor just 5 days after my last treatment, I can definitely feel a change in its size and shape.  It feels smaller to me, but just like the last time I was examined, I'm waiting to hear the professionals tell me that the tumor has indeed gotten smaller.

For now, I am truly relieved that I am able to continue with the chemo, knowing that these medications are working, and making a noticeable difference in the size of the tumors.  Knowing that, I'm choosing to believe that it's also working on the internal mammary nodes, for which there is no surgery to remove the cancer cells that were found there, only radiation therapy after my surgery.  The next set of scans will be taken after I've completed all of the chemo medications, and then we'll know for sure if anything has been left behind.  Until then, please keep praying and visualizing that this disease continues to melt away.

Monday, May 6, 2013

The Power of Love...


"The block of granite which is an obstacle in the pathway of the weak, becomes a stepping-stone in the pathway of the strong." {Thomas Carlyle}

"The power of love to change bodies is legendary, built into folklore, common sense, and everyday experience. Love moves the flesh, it pushes matter around." {Larry Dossey}

Words can not express how humbled and grateful we are for all of your help with the fundraiser over the past few weeks.  We exceeded our goal last night, and Jason and I have been in tears many times reading through all the messages and words of encouragement.  It is absolutely incredible!  Thanks to all of you, we'll be using the funds to continue our health insurance coverage through COBRA, which will be in effect when our insurance ends after Jason graduates at the end of June.  We are so blessed to have the love from all of you (family, friends and strangers alike) carrying us through these times.

We also found out some great news today, as well...  We can stay in our apartment after graduation for the duration of this journey!!  The magnitude of the weight of this has been completely lifted, giving us a glimpse of peace when we need it most.  We are so grateful for this answered prayer!!

We did it!



Thanks to each and every one of you, our 157 amazing supporters, we not only met but far exceeded our fundraising goal of $15,000!

We cannot even begin to tell you how much the success of this fundraiser means to Jason, Sarah and Lena. They are increasingly uplifted by the love, compassion and words of support sent their way. Each time I talk to Jason and Sarah they repeatedly mention how in awe they are of the overwhelming response that this has generated. In what all too often seems like a sad and scary world every time we turn on the news these days, this fundraiser has provided us with intangible hope and reminded us that there are truly amazing individuals out there who are demonstrating just what it means to love strong and make a difference in the lives of others.


Lastly, while our fundraiser may have concluded, Sarah's fight is unfortunately far from over. We would love to continue to have each of our in our corner and encourage you to accompany us on the rest of this journey through this blog.

Thank you, thank you, thank you. Nicely done, Team Sarah!

Caitlin (on behalf of the Horn and Halperin families)

Friday, May 3, 2013

Round 3

Ergggg... Let's see...
So we went in yesterday for our third round of chemo.  We always go for a finger stick first to see how my blood count is looking, then we see my Oncologist for an evaluation before the infusion of the drugs.  She first shared the good news that my WBC count was looking very good, and that she was going to give me the full dose of meds.  We still don't know if that case of neutropenia last month was due to the chemo itself, or the fact that I was hit by that nasty virus at the same time, and the combination of the two was just too much for my body to fight off on its own.  We'll never know, but I'm going to choose to believe that it had more to do with the virus.

She then gave me an exam, did some measurements, and she saw that the tumor has not shrunk since the last dose of meds two weeks ago like she was expecting.  When we went in two weeks ago for Round 2, she measured the tumor at 5.5cm x 6cm, which the initial measurement, just days after the first round, measured the tumor at 7cm x 8cm.  So there was a significant shrinkage just after that first dose of meds.  The doc stated that she was surprised to see no difference in the past two weeks.  She also measured the axillary lymph node, which was still measuring at 1.5cm - again, she was hoping to see that number smaller as well.   But she told us not to panic, and that she was going to give me the meds at 100%, so we will see what happens over the next two weeks.  In the meantime, we pray, pray, pray. 
She said that there will be either of three scenarios to happen:
1) If the tumor shows shrinkage, then we will stay on the course we are on.  One more dose of the A/C meds in two weeks, and then I will start on the Taxol once a week for 12 weeks, then surgery, then radiation, reconstruction, etc...
2) If there's no progress with the meds, she may decide to go straight to the Taxol and see if there is any efficacy on the tumors.
3) Again, if there is no shrinkage, and she doesn't choose the Taxol, then I will go straight to surgery, having a bilateral mastectomy.  She wants this out.

So, there's that.  There was a point when the double mastectomy seemed so far away, and I had not given much thought to it yet as I am still figuring out how this whole chemo thing works.  I recently read a book that was given to me about another women's journey though breast cancer, and it went into great detail about the surgeries, both the mastectomy and all of the reconstruction processes, which only made my anxiety grow, as anyone's would.  So now I am educating myself more about the surgical procedures, recovery, etc.  I know myself well enough that I have made a decision about the surgery - this disease needs to come out!  But I am also terrible with pain.  I'm pretty much a big baby.  And I fear that to get through the recovery period as 'comfortable as possible,' that I will be on many pain pills to help with the relief.  My fear mainly resides in the possibility of me being emotionally vacant for Lena while I'm trying to recover, which makes my heart hurt.  I've never had any major surgery, so it's all so very scary and new to me, but if this course is chosen sooner than later, then I will certainly accept the challenge as gracefully as I can.

So there was one more thing discussed yesterday.  There is a possibility that I may need to have my ovaries taken out.  Apparently, there is an increased risk of ovarian cancer later with women who have breast cancer.  Jason asked if it was something that needed to happen while I was already under anesthesia for the mastectomies, and as they were discussing that, the doctor saw the panic on my face.  I heard my heart break.  I don't know if this is just a womanly/maternal thing happening here (most likely), but I am so not ready to give up the chance of growing our family naturally.  I keep going back to the fact that this whole thing started at the beginning of the year with the elation of being pregnant again.  Then after the miscarriage, I gathered strength knowing that we would be able to try again.  But when that was taken away after the cancer diagnosis, all of those thoughts got pushed away somewhere, knowing that I was fighting for MY life number one, and that I would have to do my grieving later.  Well, now it's back.  The doctor said that it wasn't something that we needed to do right away, but it was something that we need to give serious thought to.  So here we go again, diving into the world of research and percentages.  I know that the chemo has a chance to make me infertile, but that there is also a chance that we would be able to conceive.  It is in God's hands now.  No decisions have been made regarding the removal of my ovaries, as this is all so fresh, but for now, I am just hoping for the chance to get through everything cancer-free, and then for the possibility to have a little sister or brother for Lena.  But if we try and it's not happening, then they can take my ovaries, I don't care after that.  I just want the chance to try.  We can grow our family in other ways.  I am trying to stay mindful that we do have such an amazing little girl, and we are so very blessed to have her.  There are so many people who struggle with having a family, and I think about them often during this, trying to keep my perspective in place.  But at the same time, so much has been thrown at us in such a short amount of time, that I am just trying to process it all still, and I'm allowing myself to feel all of the emotions that I need to.

So far, I'm physically feeling ok after chemo yesterday.  I'm exhausted, but the nausea is staying away for now thanks to the wonderful meds they give me for days 1-3 post treatment.  Lena, however, has come down with something today.  She's been lethargic and has had a fever of 102.8 since this afternoon, despite the fact that I've been giving her Ibuprofen and Tylenol intermittently since noon.  Still no break in the fever yet though.  I called the doctor, and we are going to take her in in the morning, so hopefully we'll get some answers, but I still fear that this is viral, and all we can do is wait it out.  My other fear is that I've already been exposed to whatever it is that she has, and I am praying that I'm able to evade it this time. 

It's been a tough two days, but this too shall pass.  I want to thank all of you out there for your continued support - it means the world to not only Jason and I, but to both of our entire families as well!  Your contributions to the fundraiser have been absolutely amazing, and we are all blown away.

Thursday, April 18, 2013

Round 2


We are so uplifted by all of your support! Thank you so much to our family for setting up the fundraiser, and our heartfelt thanks to everyone for your incredibly generous donations, emails, texts, carepackages, stories, phone calls, advice and prayers. It is really awesome and touching and really fills us with a ton of love in this time when we need it most. So thank you from the bottom of our hearts!

We enjoyed the week off from treatment last week as Sarah's health continued to improve. I was able to delay my written board exam until June (amazing) and we had an emotional, but positive family hair buzzing experience, and as soon as Lena saw Mommy's new 'do, she asked if she could get her hair cut too. I practically almost had the clippers to her toddler curls before Mommy shut that down.  My lady looks so good with this pixie cut! And, as her assistant barber, I feel like I should get some of the credit. The last time I shaved someone else's head, besides my own, I put a nice size clipper cut out on the side of R Horn's head. I kept reminding Sarah how courageous she was to let me help her cut her hair.

We had a smooth round two of treatment yesterday. As per Dr's orders, the meds were dose reduced by 20% to minimize the chance of the same severe neutropenia after the first dose. Besides feeling really tired, with some mild yuckiness, Sarah's been doing relatively well since yesterday.

Again, we are in awe of all of your support coming in, and feel so grateful to have you in our lives.

Monday, April 15, 2013

GiveForward Fundraiser

We have launched a 21-day fundraiser on GiveForward.com to help alleviate the burden of costs associated with Sarah's fight. In less than 24 hours, friends and family from all over the world have rallied behind us and donated from their hearts. We are so very grateful. 

There is truly no such thing as a donation too small. Each and every gesture adds up and is so very appreciated. To access the fundraiser, please click here

With love,
Caitlin

Friday, April 12, 2013

A Few Thoughts

Well, I am certainly grateful to have some extra time off between treatments to allow for more recovery time.  While I'm feeling well overall, I still have a lingering cough that I will be so happy to see go one day (hopefully soon!).

Lena had her first week of preschool this week, and she did fantastic!  She will be going twice a week for now, and she's having a blast.  My Dad went to pick her up today, and her teacher told him that she didn't want to leave, so I take that as nothing but a good sign, and again, I'm so very grateful that she is adjusting well to all of these changes.

I also wanted to get on here and share a few thoughts that have been on my mind...  I feel a bit angry and betrayed almost by the healthcare system for not making me more aware of the fact that I should have been more vigilant about getting any and all bumps checked out immediately over the years.  That would have made early-detection possible for me.  Instead, I am thanking God for my miscarriage, because without it, I would not have made that second mammogram appointment, and the cancer would have been found later - most likely spread elsewhere, and I would have been much worse off.  Not to mention, that I would be going through treatment while carrying a child.  I can not even image the horror of that road, but I know it happens.

So my point is this, if you have fibrocystic breasts, please be hyper-aware.  Get any lumps checked immediately.  It's better that your doctor think you're a crazy hypochondriac than being diagnosed with a late stage cancer.  Since sharing this blog with you all, three people have already told me about having the same fibrous breasts, and that they were going to make appointments soon, if they had not already done so.  So, for that, I am so happy that our story has helped.

Thursday, April 11, 2013

Week Off

Went in today and Doc decided to put off treatment for one week. So round 2 is set for next Wednesday. Sarah is relieved having had such a tough first round and having just been released from the hospital. A week off to get stronger...we'll take it.

We are totally uplifted by all the love and support coming in...thank you all! It is such an incredible feeling to hear from everyone. Your stories, words and support are powerful and we are grateful for all of it. Thank you.

Jason, Sarah and Lena

Tuesday, April 9, 2013

Healing


Family and friends,

Thank you for checking in. We're grateful for the idea to start this blog as a way for everyone to stay updated and connected.  We'd like to start by first sharing with you our story.  

It all started sometime back in early fall when Sarah found a small lump in her left breast. She always had a history of fibrocystic breasts – for many years small lumps would come and go with monthly cycles – so finding a lump was a common occurrence that would usually disappear within a few weeks or a few months.  In 2006 she found a lump, which then led to a mammogram and ultrasound.  There was no biopsy needed, as it was found to be a cyst.  The history of the fibrocystic condition lead to her guard being way down and so back to last fall 2012, she noticed the lump and knew that her yearly exam was coming up and had an appointment in early January. She brought the lump to the Dr’s attention, and a referral for a mammogram was given. The next available appointment was made for February 4th.

Meanwhile, life kept going on, and on January 12th, we took a little test and were ecstatic to find out that we were expecting baby number two.  With that exciting news, Sarah cancelled the mammogram appointment, knowing she was pregnant and not wanting to expose the baby to any radiation.  Sadly, on February 21st, it was confirmed that we had lost the baby.  It was very tough on us, but we stayed strong, knowing that this happens all the time, and that once her body was fully recovered, we would try again soon.   

Sarah then rescheduled the mammogram appointment for Friday, March 8th.  A mammogram and ultrasound revealed five masses in the left breast.  The radiologist reviewed the images and noticed that the axillary node was also prominent, so they performed a same day biopsy of both the axillary node and three of the five masses.  Stunned, but hopeful the masses were benign, we waited for what we were told would be a week until the results were back.  Five days later, on Wednesday, March 13th, Sarah and Lena had just gotten to the playground when she got a phone call from her Dr.’s office saying, “You and your husband need to come into the office today.”  Sarah immediately knew what that meant.  She then called Jason at work and he came home.  We went in to the Dr’s office that afternoon, and we were the last patients to be seen that day.  We found ourselves in the same office where, just three weeks before, we were told that we had lost the baby.  Next, the words came, “You guys know why you’re here, I’m sure.  The results of the biopsy came back positive, you have breast cancer, and it looks like you’re going to need a mastectomy.”  After that, we couldn’t tell you what was said.

What happened next was a complete whirlwind of seemingly endless doctors appointments: four surgeons, three oncologists, a reproductive endocrinologist, and tests, tests, tests.  We spent two weeks being as proactive as we could to help establish our team of doctors and the best treatment plan. After a lot of wrangling to get appointments with the right doctors, we were finally able to get into Memorial Sloan-Kettering Cancer Center here in New York City.  The Memorial oncologist was our third oncologist visit, and after meeting with her, we knew we had found the right person. 

Because of the fact that the type of cancer that Sarah has is a rare, aggressive and advanced one (the cancer was already in stage IIIC when we found it), the planned treatment is for five months of chemotherapy first, followed by the mastectomy (possibly bilateral), then possibly more chemotherapy if needed, then radiation, and then reconstruction. It is going to be a very long road.

During this whirlwind search of doctors, we were also thrown another curve ball that needed immediate attention.  We were told that there was a chance that the chemo would knock out Sarah’s ovaries, making us unable to have more children.  We were told that we should look into freezing embryos for post treatment IVF.  This sent us into a very emotional two days of trying to decide whether or not to go forward with having Sarah go through two weeks of taking hormonal drugs to stimulate egg maturation, followed by a surgical procedure of harvesting the eggs.  This would all be done, and then the day after the eggs are harvested, Sarah would start chemotherapy.  We figured that most people, when faced with IVF treatment, have sufficient time to do their research and make an educated and informed decision on how they want to proceed.  We had two days.  Something just wasn’t sitting right in the decision to move forward with the plan to put Sarah’s body through that kind of stress just before the intense stress of chemotherapy.  This was a difficult decision, and we were in an extreme emotional dilemma filled with all the anguish of these difficult days.  In the end, we thought of how extremely lucky we were to have our healthy, happy little girl, as well as the chance that we could still have children after treatment, and the option to adopt in the future, so we decided it wasn’t worth stressing Sarah’s body at such a difficult time.  Yet, at the same time, there was always a little something in the back of our minds that was still questioning whether we would regret this decision in the future if faced with infertility. We told our oncologist about this dilemma, and she immediately said she didn’t feel that we should delay chemo for two weeks for the egg harvesting – those were the words we needed to hear to feel comfortable with our decision, with no future regrets.

So we had our medical team and plan in place, and could begin to breathe… just a little bit.  Days and days of pre-chemo tests included a PET scan that confirmed that there was no distant spread of the cancer, but for some involvement of the internal mammary nodes.  Sarah also had another biopsy of the right breast to rule out the presence of cancer there, and thankfully that came back benign.  Chemotherapy round 1 was set for Thursday March 28th, just two weeks after diagnosis.  Months before, we had bought tickets to one of our favorite live music artists so we were very happy to be able to get out for a night of great music with great friends prior to starting chemotherapy the next day. 

The first chemo visit was a surreal, but comfortable experience. It just so happened that Sarah acquired a nasty chest cold about this same time. The first few days after chemo were fine, then the cold really hit and along with it some chemo-related nausea, so Sarah spent the week feeling wrecked, with little appetite and a bad cough.  After five days of little improvement, the low-grade fever concerned the oncologist, so this past Friday we went in for a chest x-ray and another blood test. Sarah’s white blood cell count had plummeted, so the combination of severe nuetropenia with a fever lead to a hospital admission that day. Four days later Sarah’s cell counts improved to normal, and she was finally discharged. Despite a cough and some stomach irritation from the IV antibiotics, she is feeling much better - all this just in time for her chemo treatment round 2 coming up this Thursday.

So there it is, as neatly wrapped up as we could make it. Now that things are slowing down a bit for us, we are gradually coming to terms with what we are dealing with.  It still seems very surreal. There have been many setbacks along the way over these past three weeks, but we are trying to keep our focus on all the small victories instead.  For example, when we discovered that our insurance covered care here at Memorial Sloan- Kettering, we were very grateful that we could be in the hands of one of the top cancer centers in the country. We still have many more mountains to climb though, and not just with this terrible disease.  Jason had just signed a contract with an orthodontist in Savannah, GA, so we were getting ready for that move after his graduation in June.  When faced with this though, we felt that it would be best to stay here in NY for the duration of treatment, so now we have a lot more to figure out.  Jason has his written boards test in 9 days; he needs to complete his residency and graduate in less than three months.  After doing the job search for cities outside NYC, we now have to find employment locally, we’ll need to likely find a place to move to after June as we are living in hospital housing that won’t be an option after graduation, we’ve got to figure out insurance coverage after graduation, etc.  So much to figure out, but we’re doing our best to compartmentalize everything and handle one hurdle at a time. 

We have faith that God will help carry us through these tough times.  We know that we will come out of this stronger and forever changed.  We are eternally grateful for all of our family and friends here in NY and beyond who have reached out and helped selflessly to keep us glued together these past few weeks.  If you would like to reach out to us, please do.  Please feel free to call, write, email, text, whatever… it means the world to us to hear from all of you that have become a part of our story through this journey of life thus far.   

Please keep the prayers, positive thoughts and energy coming our way as we work through this treatment.

All of our love,

Sarah, Jason and Lena  


Wednesday, March 27, 2013


Jason, Sarah and Lena are overwhelmed with gratitude at the incredible outpour of love and support they have received thus far! Many of you have asked for ways you can continue to provide ongoing support. Please see below for the various outlets that we have established to help assist the Horns. 

With sincere appreciation,
Caitlin, Jen + Tabby

  • Meals: M-W-F meal delivery is now covered through May 3rd. We have set up a virtual calendar for friends and family members to sign up to provide meals beginning May 5th and onward. Please click here to access the virtual calendar and sign up to contribute a meal.
  • House cleaning: Prudence Wright (Jason and Sarah's friend in New York) is collecting funds for coordinating house cleaning for the Horns. Ideally, Prudence would like to schedule the house cleaner to come once every two weeks. Each visit costs $90. If you would like to contribute a house cleaning (or a portion of one), please email Prudence at prudencepurcell@gmail.com. 
  • Monetary donations: Donations may be sent to hornfamilyfund@gmail.com via PayPal. Please click here to easily, efficiently and securely transfer a donation to Jason, Sarah and Lena. 

Friday, March 22, 2013



Welcome!

We have started this blog so that Jason, Sarah and Lena's many wonderful family members, friends and relatives can stay connected and provide continual support over the course of the next few months. We are working to incorporate a link to a few important resources over the course of the next few days, including, but not limited to: a meal planning/delivery calendar, a calendar for out of town visitors as well as a calendar for signing up to coordinate house cleaning. 

Please continue to check back for updates and ways to provide support.

Lots of love,
Caitlin (sister in law on Jason's side), Jen (Sarah and Jason's friend in NYC) + Tabby (sister in law on Sarah's side)