Stacey Kessler

First post: May 25, 2016 Latest post: May 25, 2018
We are not exactly sure when Stacey's journey with Brain Cancer truly began or what caused it as there is very little know about this dreaded disease.  She was however diagnosed with Brain Cancer after having a Abson Seizure at our club pool on Mothers Day, May 8th, 2016.  After the initial shock wore off and we were picked up off the floor by our friends, family and faith (F3) (Special thanks to Mace Hall and Beth Jordan), we decided that this was our new life and we were going to fight it with every resource we had and we were going to beat this disease while praising His name.........and we were going to do all of this in fine Kessler Fashion.....by having a lot of fun along the way! We truly believe that God has chosen our family for this path and we are asking Him everyday what His plan is for us.  We have given our fear up to God and have had immense peace thru the comfort that only His strength can provide.  This God-given peace and courage enables us to take on this disease with fervor that is empowered by our God-Given intellect, the best doctors in the world (both of the Western World and the Far East), our courage to challenge our care givers, but mostly by the love an support of our faith, family and friends.  If you just want the Cliff Notes of our journey, know this.....we have incredible peace about this new life that we are living, we are excited about the days to come, and encouraged by the fact that we feel like we will be part of the cure.  Our spirits are very high, our faith is incredibly strong and the love of our fiends and family make us speechless.  We have not shed a single tear Stacey's diagnosis and neither should you.  We are ready for whatever God has in store for us and we treat every day and every moment as a true blessing.   We are definitely looking at life thru a different lens that has been an incredible blessing for us and one that I wish that we could pass on to our friends and family without you having to go thru a diagnosis like this.  In short, we are truly blessed and we are so thankful for each and every one of you.  Thank you for willingly going along with us on this journey and encouraging us through your cards, letters, emails, texts, dinner, your offers to take our kids on trips or do something fun for the afternoon, your willingness to give us your home when we needed it, your dinners, flowers, balloons, etc......but most of all, thank you for being such incredible friends.  We truly couldn't have done this without all your love and support and we greatly appreciate it!God is Great!!! My "Sweetie" is an Angel!!!With our amazing God, our great physicians,  and the love of our friends and family, we will beat this and will praise His name!!!....Onward we go!!!Kess************************************************************************************************************************************************************************************************Now, if you want the Tollstoy, War and Peace version, the below is a series of texts that I sent to our family that should give you the details of our journey.  Log updated: July 8th, 2016:Dear Family, As most of you know, we want to treat Stacey's Brain Cancer as aggressive as possible.  She is young and very strong and this gives us confidence in beating it now.If you haven't gone to Stacey's caring bridge page and read her last post, you should do so, she's an amazing woman. Here is the link:http://www.caringbridge.org/visit/staceykesslerShe reads all of her posts so if you'd like to write her a nice note on caring bridge, she will get it.The past 8 weeks and 5 days have been a little crazy and I wanted to give you a full update.  Here is a detailed synopsis of our journey from diagnosis to today.May 8th - Stacey had an Abson Seizure on Mothers Day at our club pool and was taken to the ER by me....whom at the time she called her "over reacting husband".  Later that afternoon at Piedmont Hospital, she was diagnosed with a ping pong ball size tumor in her right front temporal and pediatral lobe of her brain that afternoon.May 10th Checked out of Piedmont Hospital and started researching and having phone Interviews with the best Neuro Surgeons in the world. May 18th - Drove to Duke and met with Dr Allan Friedman (featured on 60 minutes several times) and decide he would be our Neurosurgeon.May 25th - 57 staples in her head later, Stacey had a masterful "Gross Total Resection" of the tumor by Dr Friedman.May 26th - Checked out of Duke Cancer HospitalMay 26th - June 1st:  We were asked to stay in the Durham area for precautionary safety reasons.  During this time, we read about brain cancer voraciously. During this research we discovered there are incredible research hospitals doing innovative things  to treat and ultimately beat cancer using immunitherapy which trains your body's T cells and immune system to fight the cancer.   We believe in the science behind these Immunitherapies  to beat this awful disease. There are 168 current trials for immunitherapy and drugs for patients in the US diagnosed with brain cancer and "Team Stacey" got in full research mode for the last to find one that would work best for her.  Special thanks to my Mom and Cousin Elizabeth for helping with this. June 1 - we were discharged from Duke and m Stacey's tumor tissue was sent to the lab.  Lab results are important in understanding the DNA Molecular Markers if Stacey's tumor which will qualify / did qualify get from immunitherapy trials. Each trial will use the DNA of her tumor is to produce an Immunitherapy that is created for this  DNA and specifically for her immune system.  June 1 - 13 - This was a bit of a waiting period.  During this time, Stacey worked out, we went to our Cousins wedding and danced the night way, we did tons of research, had many calls to Neuro Oncologists, and got some very valuable feedback from brain cancer survivors discussing all possibilities. Special shout out to Beth Jordan, Reed Roberts and Tyler Beem who were immensely helpful as brain cancer survivor advocates. This all gave us a crash course PHD on the science behind the immune system, molecular biology and how certain trials work.June 13th - Received the DNA Molecular Markers for Stacey's tumor:    Her tumors DNA Molecular Markers are unmethylated / IDH1 non mutated / IDH2 non mutated / EGFR elevated positive gain 68% / Tert positive / HLA 2a, 3a, 11a and 24a negative.  Now we know what Stacey qualifies for. Game on!!June 14th - June 17th -  we applied for all of the 6 trials of the 168 that her tumor's DNA markers, health and history qualified her for.  We met with Piedmont, Emory and Duke via phone to discuss these markers and apply for trials that we qualified for.  We then flew to Boston (Dana Farber / Harvard) and Houston (MD Anderson) on Thursday 16th and Friday 17th to meet with Docs who are Immunitheraoy gurus and apply for their trials specific to her tumor's DNA Molecular Markers.   June 20th (Mon) - We were rejected by Piedmomts two trials due to her blood being HLA negative for the trial of ICT-107 and the timing of her treatment forJune 21st (Tues) We have had a Rollercoaster ride this morning!  Stacey got eliminated from two trials this am via phone calls and emails at 830am and 9am from Duke and Harvard.  We felt a little like Tom Brady on Draft day, but just as Brady got down to his last round and got a call from Boston, so did we! At 10am today, we received a call from Harvard at Boston and she was accepted to an incredible trial (Nivolimab) which is a checkpoint inhibitor (which we both believe in the science behind it) with our favorite Doc, Dr David Reardon (Dana Farber / Harvard).  Dr Reardon is the Immunitherapy guru we mentioned earlier and is just an amazing person and physician. However, this trial came with an immense hurdle as all tests needed to be done today at Harvard today (and it was already 10am), her first injection had to be done at Harvard/Fana Farber tomorrow and Radiation had to commence at Harvard/Dana Farber by next Wednesday .  So thanks to our nanny Olympias help and the help of Mace Hall (who dropped all she was going to help us get out the door), The Sudlow family (who took Aly Grace to the beach), and the Jones family (who took Kate Elise with them to the beach on a moments notice),  we scrambled:  booked tickets, scheduled MRI/ CT Scan/Bloodwork for tonight and showered and packed in an hour and caught an uber to the airport and caught the 148pm flight to Boston. Whew!!!!  I mean Whew! That night was spent getting bloodwork done, processing MRIs and all the other poking and proding to ensure that Stacey was a candidate for the trial.June 22nd (Wed) Everything was processed and Stacey was officially admitted to the trial for Nivolumab and received here first infusion from 3:00pm to 5:00pm.  I always knew that a Kessler would be admitted to Harvard, I guess all this private school tuition finally paid off ; ).  Also of note, Wit Hall is raising capital to produce a new movie staring Stacey called "Legally Redhead", reach out to Wit if you have interest. ; ). We spent that night celebrating by walking from our hotel at The Fairmont near Boston Commons to Legal Harborside where we shared a celebratory glass of wine and had dinner.  It was such a pleasant evening and we walked back to the hotel which was about 2.5 miles. We had a terrific night!June 23rd:  More doctors visits to ensure that Stacey was not having any side effects.  She got fitted for her radiation mask and we met with our radiation oncologist at Dana Farber.  We were processed and scheduled for 6 weeks of radiation starting next Wednesday, June 28th (the day after our 18th wedding anniversary - Happy Anniversary Sweetie!).  We were encouraged to know that we received our favorite schedule of early morning radiation treatments (which literally take only 7-8 minutes at 7:20am each day except on Monday's which will be later in the afternoon.  So, the plan from this day forward is for Stacey to fly up with friends and/or family each week on Monday and return to Atlanta on Friday from now thru August 11th and then she will need to go up every other week to Boston for her Nivolumab infusions.  We will do this in perpetuity or until we feel like there is no further reason to do so.June 28th thru July 1st:  WEEK #1 OF RADIATION: Stacey and I were in Boston all week for our first week of radiation therapy in the mornings at 7:20am everyday.  We spent the afternoons going on hikes and touring the city of Boston preparing ourselves for us essentially becoming Bostonians for the next 2 months.  We walked all over the city and logged in about 5-9 miles of walking each day.  One morning, we walked from our hotel in Boston Common (Hotel Commonwealth) to our appointment at Dana Farber (3.5 miles), then to Harvard and MIT (3.3 miles), Touring around the area (2.2 miles) and then to St Auburn Cemetery (1.8 miles) = A total of 10.8 miles.  My wife was truly amazing that day and showed me strength that I never knew she had.  She was pushing the entire walk......and had just had intense radiation therapy ON HER BRAIN!  Amazing Woman! #bostonstrongwoman.  Special thanks to Mace and With Hall who made the Kessler Kids a part of their family for these two weeks.July 1st - July 4th:  FAMILY REUNION AT Z PARADISE IN LAKE NORRIS:  We flew directly into Knoxville, TN and had a great family reunion with our entire Kessler, Rector, Hudson family at Lake Norris which is about an hour north of Knoxville!  Special thanks to Alicelyn and Ames Hudson (Cuz and Capn) for swinging thru Atlanta to pick up our kids, only to getting stuck in 4th of July Traffic in Atlanta for an hour and half, enduring a chocolate spill that would make the umba loompas in Willie Wonkers Factory cringe, and 27 bathroom breaks for the 5 hour trip to Knoxville.  This enabled Stacey and me to fly directly to Knoxille from Boston and meet all of our family for a great 4th of July filled with great food, life thoughts, catching up, floating on the Lake Norris, boating and tubing with the kids.  It was a tremendous 4th of July weekend and the break that Stacey and I needed to reinvigorate our soul and prepare us for the upcoming battle!  Special thanks to the Rectors (our cousins who live in Switzerland) who hosted all 20 of us in their incredible home on Lake Norris affectionately known as "Z Paradise".July 4th - July 8th:  KESSLER KIDS WITH MOMMY AND DADDY IN BOSTON FOR WEEK 2 OF RADIATION AND 2nd NIVOLUMAB INFUSION:  We drove to the Knoxville and bedded down at the Hilton at the airport in Knoxville on July 4th so we could make our 6:54am flight to Boston.  All flights were on time and we arrived at our 2 bedroom brownstone flat at 391 Commonwealth in the heart of Boston at noon.  We were able to get unpacked and then the girls (Aly Grace, Kate Elise and Mommy) went to Mommy's radiation appointment at 2:40pm.  I think it was great therapy for the girls to see this process and know that mommy was in great care.  We then bedded down for a nap and got ready for a big night.  That evening, My Godson, Harrison Battle Fisher and his mother and father Jeff Fisher and Frances (Spell) Fisher flew over to meet us in Boston from their summer home at The Cape.  They wanted to take us to a Boston Red Sox game and got us the best seats Ive ever had for a baseball game.  We were literally on the front row behind 1st base and the seats were so good, you could see us on TV the entire night.  The seats were so close that the players could hear us talk.  The seats were so good that the First Base Coach of the RedSox came over to us and suggested that we re arrange our seating arrangements to protect the kids from foul balls.  The seats were so good that in the bottom of the 7th, Travis Shaw (aka "The Mayor of Ding Dong City") hit a rocket of a line drive foul ball directly at us; my tennis instincts must have kicked in as I yelled "BALL, BALL, BALL!!" and proceeded for some unknown reason to try to catch the ball that was pitched by Craig Kimbrell at approximately 99MPH and was probably entering our seats at around 130MPH.  The problem with me trying to catch the ball is that I had no glove......I caught the ball barehanded.....and all of us danced in celebration on TV and on the jumbo tron in Fenway Park!!!!  I couldn't feel my fingers for about 4 hours after this illustrious moment, but I didn't care......we had a great souvenir to end a great night!  Special thanks to the Fisher Family for getting us the best seats and the best Fenway Park Boston Red Sox experience that I will  ever have.  I will never forget this experience!   The next three days were filled with us being Bostonians.  Stacey went to treatment in the morning each day and we filled the days with the kids by touring Paul Revere's house, touring the North End on Wednesday morning, then we all went with Mommy to her Nivolumab treatment on Wednesday afternoon and we followed that off with a nice Sushi dinner and an evening at Blue Man Group in "Poncho" seats on the 3rd row.  It was a great show and the kids really loved it.  Thursday, I worked in the morning at my favorite local coffee show (Trident Bookstore on Newbury) while Stacey got radiation and kids slept.  After the kids woke up, we walked from our flat to have lunch on Newbury, then walked to Boston Commons and around the Frog Pond area, thru Faiel Hall  and ended up at the Haahbah (Harbor) for our boat ride to Spectacle Island.  It was a 30 minute boat ride and we had a nice catered Clambake on the island with Lobsters, Clams, Corn on the Cob, etc.  There was S'more roasting, corn hole and giant Jenga on the beach and it was great to introduce the kids to a great old fashion Cape Cod Beachside Clam Bake.  Friday morning, Stacey walked to her radiation appointment (1.6 miles), we came back, packed up, had brunch at my favorite local breakfast spot (Trident Bookstore on Newbury) and headed to the airport.  We landed at 4:45pm and go to the house by 6pm.As you can tell from this journal, Stacey is reacting very well to the treatment and is having no read side effects from Radiation or Nivolumab.  She is strong as ever and is doing great.   Again, the plan going forward is for us to have treatment at Dana Farber in Boston for the next 7 weeks.  She will go up every Monday and come back to Atlanta every Friday.  This next week she will be traveling up with her mother (Sandra Lary) and Aunt (Anna Herrington) and the following week, the kids will travel up with us again for Mommy's treatment with The Hall Family.Thanks for all your prayers, dinners, visits, notes, phone calls. concern, and just for being great friends and being a part of Team Stacey.  We believe that God has chosen us for this fight and we are accepting His plan, guidance, courage, peace and all the blessings that it has provided us.  We are Boston Strong and we are ready!  Let's get it on!God is Great!!! Cancer is the Devil!!!My "Sweetie" is an Angel!!!With our amazing God, our great physicians,  and the love of our friends and family, we will beat this and will praise His name!!!....Onward we go!!!Kess

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