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.
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