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).
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.
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
|Disney, April 2009 while
|Disney, April 2009 with a close
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.
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,
|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 Sweetland, go to the the boxes to the right.
About Leiomyosarcoma Support & Direct Research Foundation (LMSDR)
This fund was created out of love for Amy Sweetland to help others win their battle with leiomyosarcoma by funding LMS specific research. Leiomyosarcoma Support & Direct Research Foundation (LMSDR) raises donations for Leiomyosarcoma research and patient support. We advocate directly with sarcoma researchers to study leiomyosarcoma. We offer the largest moderated support group online for leiomyosarcoma, where patients and loved ones get the latest LMS news and personal support. The LMSDR’s website offers local support groups, details of what we do, the research we have funded and many resources for the Leiomyosarcoma community. The LMSe Alerts is our monthly newsletter, offering more updated clinical trials, news and community events. The Leiomyosarcoma Lifeline is our new blog, featuring patient stories and our well-known Long Term Thriver stories.
We collaborate with researchers and other organization to reach our mission and vision of finding treatments that will work. We have created the Leiomyosarcoma Tissue Bank for researchers to study our disease, the Leiomyosarcoma website for education and support at our leiomyosarcoma patient conferences, in Denver, Colorado, San Francisco, California, New York City, New York, and Maui, Hawaii. Please stay in touch with our website for more upcoming events sponsored by Leiomyosarcoma Support & Direct Research Foundation.
Leiomyosarcoma Support & Direct Research is an all volunteer organization which Amy supported.. We are proud to have Patient Registry to collect data, and ran successful blood collections for study. We have brought patients and loved ones together from all over the minimal amount of expenses as possible, to ensure your money goes directly to funding promising research for leiomyosarcoma specifically. You can volunteer, put on fundraisers, promote LMS awareness and ask your employer for matched funds. Please consider making a donation and helping us Work, not wish, for treatments that will work for us. We have been a 501(C) (3) since 2006 and a tax-free charity.