The Amy Sweetland LMS Research Fund

Amy Sweetland Tribute Page, written by Scott Sweetland, Amy’s husband of 31 years.

Amy was diagnosed with retroperitoneal LMS in June of 2003. It hit us like a brick as Amy had hardly ever been sick a day in her life. She had some prior issues with fibroids and had a hysterectomy back in 1999, but there was never any mention of possible cancer back at that time. I recall all the issues Amy worried about when she was diagnosed (seeing our kids graduate, seeing them get married, brushing her two daughter’s hair at their weddings, holding a grandchild)….ironically, lots of things that many people take for granted. Amy had her first surgery in Nashua, NH in that same month (June 2003). When they operated, they did not know what the tumor was until after the biopsy. The only symptoms she had at the time were a bulge coming out of her abdomen. The original tumor was very large (over 15cm). 
Australia in Feb 2004 after her First Surgery,
Amy, Allie, Lauren and Adam
The surgical oncologist in Nashua was optimistic, but also sent us to a medical oncologist in Nashua, NH for follow-up. Well, we really didn’t know what we were dealing with at that time. Dr. Posner, the medical oncologist, looked at both of us and said “you guys have a lot to live for; I would like to refer you to Dana Farber in Boston for additional consultation.” We then saw Dr. Jeffrey Morgan, a medical oncologist in the Sarcoma Clinic at Dana Farber (who Amy still sees to this day). Dr. Morgan told Amy that her cancer would likely come back due to how advanced the original tumor was. Amy’s cancer did come back, although that first time it was difficult to detect by scans. At that time, she was seeing both the oncologist in Nashua and in Boston, and that was a mistake. Scans were done in both places and it was difficult to compare scan to scan. At this point, we decided we would only go to Dana Farber in Boston for her treatment, both for the fact that they are known to have one of the best sarcoma clinics in the country and for consistency of care. Amy was under a considerable amount of pain when it was verified that her cancer had returned. She was taking 600 mg of Oxicontin per day plus breakthrough morphine at her worst point. It wasn’t totally clear for awhile whether her recurrence was a local one or metastases. She was put on a Doxil regimen which did shrink the tumors, and reduce her pain. Later, after a consult with Dr. Chandrajit Raut, a surgical oncologist at the Sarcoma Clinic at Dana Farber, it was decided to do a very aggressive surgery on Amy to try for a cure given the possibility that the tumors were multiple local recurrences from the first tumor. Prior to the Doxil treatment, in February of 2004, we took the family to Australia for a wonderful vacation. I had been to Australia 17 times on business and always wanted to bring the family. This had to be the year. We had a great time in Sydney and up in Cairns by the Great Barrier Reef. Amy got a chance to snorkel on the Great Barrier Reef on our son’s 18th birthday and our youngest daughter’s 11th birthday (yes, born on the same day 7 years apart). We had a wonderful time, although Amy was constantly fighting her cancer pain. The Doxil treatment started in June of 2004. Then she had external radiation (which was done through her left kidney, as it was determined by Dr Raut that this kidney had to be removed anyway, since the original tumor had flattened it). 
Tubing the summer after her second
(most aggressive) surgery in Feb 2005
Her second, and most aggressive of the 4 surgeries, was in February 2005. In addition to the tumor, her left kidney, gall bladder, and spleen were removed, along with part of her pancreas and part of her small intestine (all areas that the original tumor was touching). Dr. Matthew Menard (Vascular Surgeon) also assisted in this surgery and worked to scrape her tumor away from her aorta. She also had brachytherapy in the area of her tumor near her aorta. After this 13 hour surgery, Amy spent 21 days at Brigham and Woman’s hospital, and it was 3 months til her intestines started working again. During this time, my employer was great (I was VP of Sales at Ceragon Networks at the time), and they allowed me to work from home and care for Amy. I will always be grateful to Ceragon and to David (Dudi) Ackerman and Shlomi Tenenberg for that. Amy was sent home with both a G-tube and a J-tube. Her bile needed to be emptied and measured daily and she needed to be fed via the J-tube. She also had to have a liter of IV fluids every day. It was very easy for me to do with her port accessed, and that kept her from getting dehydrated. For some reason, she really craved the taste of pineapple juice even though it went right out the G-tube in short order, but it tasted good for her. Amy’s Mom, Nancy, was also a “god-send” during this time (also a retired nurse) as she gave Amy, myself, and the family a lot of loving support. Mom was sitting with me in the waiting room on all four of Amy’s surgeries.

Well, after maybe the longest 3 months of Amy’s life, she started a road to recovery which would last 2 ½ years. During this time, you would not know that Amy ever had cancer.


Disney Food & Wine Festival with close friends Karen and Bob, Fall 2005

Family with Amy’s parents @ Disney, Jan 2006

Amy, Lauren, & Allie, Disney Jan 2006

She lived a very vibrant life. Singing at Church, spending summers at our Cottage in Maine (she even went tubing that summer after surgery!), going to Disney World with family and friends, and just lighting up life with her smile. Of course, she always has been the CEO of our household as well with me having a Sales career where I was on travel a good amount of time.

During 2006, we planned a 25th anniversary 14 night cruise to the Mediterranean (France, Spain, Italy, Greece, Croatia, and Monaco) in September of 2007. Just before leaving on the trip, Amy was informed after a CT Scan that her cancer had returned. Although Amy was disappointed, she maintained a great attitude. We had a wonderful time in the Med having the vacation of our lives. A cruise was a great way to see a lot of Europe in a short amount of time.


Spending time at our cottage, summer 2006 with Teresa & Dean

Amy in Santori Greece, Sept 2007

Amy on gondola in Venice, Sept 2007

After coming back from our cruise, it was back to face the reality that her cancer had indeed returned and metastasized, and additional tumors were found down lower in her abdomen. 
Amy, Lauren, & Allie @ Relay for Life,
April 2008, 2 months after 3rd surgery
It was decided again to do a Doxil regimen prior to surgery, along with external radiation. The next surgery was in February 2008, and again brachytheraphy was done in the area of the tumors. Although brachytheraphy worked in that no tumors occurred in the same spot, the radiation did damage to Amy’s ureter (from her only kidney). Since that time, Amy has had to have a stent placed every six months in order to protect her only kidney. These surgeries are performed by Dr. Graham Steele at Brigham & Woman’s hospital. Amy’s bounced back from her third surgery quite well. In fact in April of 2008, while our daughter Lauren was attending Quinnipiac University in Connecticut, Amy walked a lap in the Relay for Life event with other cancer survivors to a standing ovation by the students. It was a very emotional, yet uplifting event.

After this third surgery in Feb 2008, Amy went about a year with clean scans. Again, during this time, she lived the same vibrant life as always. There were of course, more Disney trips (Amy now goes on average 4 times per year with family or close friends), time at the lake, etc.


Disney, Dec 2008 after Feb 2008
Surgery

Disney, April 2009 while
on ET-743

Disney, April 2009 with a close
friend Jill

At this point in April of 2009, I had decided to give up my Sales career in Wireless Telecom and took a job at a local company in NH, BAE Systems to be able to spend more time with Amy. After a year, in the winter of 2009, it was determined that the cancer had returned yet again. This time, as she had exhausted how much Doxil she could have, she was put on a compassionate trial with ET-743 (Trabectedin). Her doctors did not want do do a surgery so close to her past one, so it was determined that ET-743 would be the best course. Amy had great luck with ET-743. It initially shrank the tumors some (keeping her pain free), and then kept the tumors stable from growing more. For the first week after ET-743, she did not feel well (tired, nausea), and would be housebound. 
Daughter Lauren’s wedding, Sept 2010It also affected her energy level (even during her best week, she would get short of breath climbing stairs). She did this for about another year and her fourth and final surgery was scheduled in March of 2010. Amy did not let the chemotherapy stop her from living a vibrant life however. As she gradually improved after the first week of chemo, our friends could not believe she had cancer. She lived a relatively normal life for 3 weeks, and had one week of downtime. Amy would always strive to have as much “normal” as possible. Sometimes, however, she might need a little help. If we were at Disney during her second week on the ET-743 cycle, we would just get a wheelchair, and push her around the parks.

A strange thing happened after the surgery in March of 2010. The tumors that were taken out had no sign of cancer. Did ET-743 kill them? We hoped. Unfortunately, our hopes did not last long. About six months later, a scan determined that the cancer was back in 3 more places. Luckily, Dr. Morgan was able to get Amy back on ET-743 again. ET kept her tumors at bay for two years with the new normal being one week of down time followed by three weeks of her progressively feeling better. Amy’s LMS did not hold her back during her good days, and even on her bad days, she continued to be Mom to her kids (our daughters call her daily to talk), and felt blessed for just “being.” Amy has said to me many times over the years that she just wants to “be.” She admits getting frustrated with people who complain too much about the little things. The two years following the 2010 surgery were filled with love, life, and lots of good times with family and friends. There were more Disney trips (of course), we built a new home on a Lake in NH, and more importantly Amy was able to be able to see our oldest daughter Lauren get married (although Amy did not brush Lauren’s hair, she drank mimosas with her that morning I reminded her), see our first grandchild (Elijah) born, and also be able to celebrate our 30th wedding anniversary, where we had a wonderful dinner at Victoria & Albert’s at the Grand Floridian hotel at Walt Disney World.


Disney, June 2010 after 4thSurgery

Fall on the Lake, 2010

Amy and daughter Allie @ Disney, Dec 2010

30th Wedding Anniversary,
Jan 2012

First grandchild, Elijah, Feb 2012

Amy’s 50th B-day, May 2012

As 2012 went on, Amy continued to make good progress, except for a big scare she gave us in March when she got a virus, then got a UTI which developed into a Kidney infection and Sepsis. She spent 9 days in the hospital and made a full recovery. ET-743 continued keeping the LMS at bay until in the Fall of 2012 when we found out that ET-743 was finally having an adverse effect on Amy’s liver function, so she had to stop. Dr. Morgan recommended a Phase 3 trial where Eribulin (newer drug) was being compared to Dacarbazine. Unfortunately, Amy was randomly selected for Dacarbazine. She started that in October of 2012. Initially, her tumors started to shrink, but her doses had to be cut back due to her platelet counts being dangerously low. In the meantime, there were more trips to Disney, two special ones being Night of Joy (a Contemporary Christian 2 night rock concert at Magic Kingdom) in September 2012, and a trip by Amy and her Mom Nancy to the Wine and Food Festival in October 2012. One of the highlights for me of my wife Amy was her singing “How Great is our God” by Chris Tomlin outloud as she walked down mainstreet USA – somehow that just seems to mean a little more when the person singing it has an incurable form of cancer. That experience was so great that we have decided to go every year, God willing. Amy was also glad to be able to take her Mom to Disney (where they met her best friend Karen who was also there for a photo). As I said earlier, Amy’s Mom has been a huge help to Amy and our family through this whole process. Also, a lot of time was spent with friends and family, especially our grandson Elijah, who has brought a lot of joy into our lives. Most recently, Amy and I were able to take a 10 night cruise to the Caribbean in February of 2013. After our cruise, we learned from another scan that Amy’s tumors had grown considerably, and that the Dacarbazine wasn’t working at the lower doses. Amy has had to switch to another Chemo, and is now trying Votrient. We are hopeful that with Amy’s strength, she find’s yet again a “new normal” where she can continue her journey of love, hope, and faith.


Amy, Lauren & Elijah on the boat, Summer 2012

Amy and Scott, Night of Joy, WDW 2012

Amy, Mom, and Karen, Disney Oct 2012

Snowshoeing @ the Lake House with Kathryn and Ken, Jan 2013

Amy and Elijah, March 2013

Caribbean Cruise with Kathryn and Ken, March 2013

Amy and I would like to acknowledge several people for their love and support over the past 10 years. I truly believe that Amy’s faith, hope, attitude, and the love and prayers of those around us has contributed to her living this long with this disease.

Amy’s caring and compassionate Doctors and their staff: Dr. Jeffrey Morgan, Dr. Chandrajit Raut, Dr. Graham Steele, Dr. Matthew Menard, Amy Pillotte, Kathy Polson, Kathleen McCarthy, and Michelle Lapidus. Thank-you all for your caring support and for giving Amy a lot of quality of life for the past 10 years!

Our family: Amy’s Mom and Dad, Nancy and Dan Simonds for their love and support, our Children and grandson; Adam, Lauren, Allison, Robin (our surrogate daughter), and Elijah for being there and giving Mom a reason to be!

Our dear friends: Teresa and Dean Puzzo (for always being there for us), Karen and Bob Correia (for your constant support especially when I was away a lot), Kathryn and Ken Anderson (for your Christian love and friendship), Jill Gidge (for your positive spirit), Karen and Pastor Scott Mitchell (for your uplifting Christian presence in our lives), our First Baptist Church of Nashua family, especially the Merlot Maidens (Carol McDonald, Jill Gidge, Louise Merrill, Janice Miller, & Mary Moody) for all the love and support, and the many meals during difficult times. Also, thanks to Scott’s boss at BAE Systems, Frank Stroili, for giving Scott a chance at a new career at BAE Systems to be able to spend more time at home.

God: Most of all, we are grateful to God for the blessings of life over the past 10 years. Amy’s LMS taught us to put things in God’s hands, and to treat each day as a blessing

If you would like to make a donation in honor of Amy, please click here . (When donating through PayPal, you can use the Designation Box to specify a Fund.)