Race For The Joslyn Children's Fund

The Joslyn Family - Our Story

My Name is Everett “John” Joslyn 3^rd.  I am 47 years old.  My wife Karen and I have been married for 17 years.  We have been blessed with 3 children – Olivia 14, Nathaniel 12, and Gillian 10 with Down syndrome.  We have 2 dogs; an Irish setter named Lucy and a Chiwawa named Bailey.  By far, these are the most important things in my life.  This is what I live for and this is what I hold most in my heart.  Oh and I should mention that I am surviving Appendix Cancer.

On January 20^th, 2009, I went into the hospital for what was to be a routine hernia repair.  I remember waiting to be brought into surgery; watching as President Elect Obama was being sworn into office.  When I woke up from surgery, I was being wheeled into a private room on the 3^rd floor at Lowell General.  The room had an adjoining living room, and I had been joking about being put up in the “Presidential Suite”.  I had no idea what news was about to greet me because I thought this was all “normal”.  My wife had had a surgical procedure the prior year and had been brought to the same room so there were no “red flags” to indicate something was wrong with me.

Later in the morning my wife Karen came in to the room to see me.  I asked her how it was going; she responded “not good”.  My first thought was that her father (who was battling Kidney Cancer for the past 5 years) took a turn for the worst.  When I asked about her father, she responded “No, it’s you”.  She then went on to tell me that the surgeon discovered my entire abdominal cavity was filled with a jelly substance.  At first they thought I had a ruptured Appendix.  They took a sample for pathology to look at and the result was Stage IV malignant cancer.  Doctors first thought it might be Mesothelioma but my surgeon believed that it started in the Appendix.  Never recalling being exposed to asbestos, there was not a clear indication of how I had progressed to a Stage IV cancer of this type without a single symptom.

I spent the night at the hospital for additional tests and meetings with different specialists from Oncology to Gastroenterologists to Primary Care.  Karen and I had time to talk and we decided it was important to tell our children what was happening.  We live in a very active community.  We are a part of many events and  the last thing we wanted was for any of our children to be caught off guard if a comment was made or question was asked.  We wanted to deal with this without having to whisper when they were around and we wanted them to know that we would ALWAYS be there for them no matter how hard the battle would get.  The next morning my wife brought the children to my hospital room.  One of the doctors from our primary care office came in and did a great job explaining what was going on in “kid terminology” to help them understand what was happening.  As a family, we were writing a new chapter to our lives and being together was so important.

After several weeks of tests to rule out where the cancer did not come from, it was determined that I had Appendiceal Cancer.  We had never heard of appendiceal cancer and the people we talked to were just as surprised as we were that this type of cancer even existed. 

Once Chemotherapy began, we started researching different treatment options.  In our search for information on the internet, we found that there were limited physicians who specialized in Appendiceal Cancer.   We continued to be pointed to a procedure called Debulking followed by HIPEC which is warmed chemotherapy inserted directly into the abdominal cavity.   We found one of the doctor’s – Dr. Goodman at Tufts Medical Center in Boston among the VERY short list of physicians treating patients in the United States.  That night, we sat down and sent an e-mail to Dr. Goodman containing details of my diagnosis, treatment and asked if it was possible to take me on as a patient.  Dr. Goodman responded – he was on vacation and would like to meet with us when he returned to the office.  That was the start of my recovery.  In addition to Dr. Goodman, I was and am working with Dr. Ardman at LGH.  Together they developed a pre-surgical treatment plan.  On May 5, 2009.  I was admitted to Tufts Medical Center and I under went a 12 hour procedure to remove all of the seeding and jelly substance.  The surgery was followed by two weeks recovery in the hospital.  It was the MOST agonizing pain I had ever anticipated but it was all information I was fully given prior to surgery.  I progressed as expected and was released to continue my recovery at home. I continued to be monitored by the Cancer Center at LGH during this time and recovery was expected to take many months before I was able to feel like me again.

During the second half of the summer, I was more mobile and had the wonderful experience to enjoy a summer with the family.  We were doing things we normally wouldn’t have been able to do because of my work schedule.  We created so many lasting memories as a family.  I know they will fondly look back at this, not as a time Dad was sick, but as a time that Dad spent the whole summer with us followed by “we were so lucky”.  That brings both tears and a warm smile to my face.  Who doesn’t want to leave that kind of legacy for their family?

In September, I returned to work on a part-time basis with the thought of going back full-time in the near future.  As time grew near for my six month blood work and CT scans, I was confident everything was fine and on the right course the doctors were hoping for.  That was not to be.  My tumor markers were climbing and the CT scan had showed some fluid build up in the lower abdomen.  The decision was made to have all the tests repeated at the nine month mark instead of waiting.  In the three months that followed, I had a lot of anxiety mixed with hope that these new results would be better.  As it turned out, the nine month CT scans and tests showed more fluid buildup and a greater increase in the tumor markers.  Now I find myself back on chemotherapy – this time an oral form which is NOT making me sick and seems to be much more tolerable.  My future holds more surgeries followed by more chemotherapy.  The chemotherapy is being used to try to slow the growth of my cancer and to widen the window between surgeries.  Not a pretty picture, but I am here, I am living and I am hoping for each day to be longer than the day before.

Looking back and moving forward, my wife has been my true love, my soul mate and my inspiration and she always will be.  My children keep me grounded and on track.  There is so much more I have yet to teach them but I know that they already have a solid foundation and good head on their shoulders.  I am proud of each of them and want only the best that life offers them.

For me, I am home full time now.  I’ve been able to take this diagnosis and look at it in a positive way.  Not knowing what the future holds or for how long, I have the opportunity to spend the time with my family and friends that is so easily dismissed with the thought that “we’ll always have time” to get together or do the things we want.  I look forward to creating another summer “memory” page in my family’s lives and plan to enjoy it to the fullest.

UPDATE: February 2011.  I have just completed my second round of debulking surgery and I am home and trying to regain some strength.  Doctors were able to remove 95% of the cancer but due to the growth and the invasion of cancer on my colon and behind my liver, they were not able to remove it all.  I will undergo more CT Scans in April of 2011 and then determine from there if chemo is an option for me or if I await another debulking surgery down the road.

The tremendous support that my family and I have received from the Cancer Center at LGH, family members, neighbors, friends and people in the community has been overwhelming and we are truly grateful to all of them for it.  All this support and encouragement has allowed us to focus on what is important to us and has allowed us to spend quality time with each other.