Our Fight Against Liposarcoma Cancer
Donation protected
May the doctors be wrong and may he have more then 6 months to live ...
Hello and thank you in advance for reading our story. My husband Dennis was first diagnosed with liposarcoma in 2005. His first surgery was in July 2005 where the surgeons removed a 28lb welldiff liposarcoma tumor. During this surgery he also lost his right kidney, appendix, a portion of his small intestines and portion of his colon. In 2010 he had a recurrence in the same location, however, this time it was dediff liposarcoma and very aggressive. During his surgery and while removing the tumor, the surgeon also learned there was a welldiff liposarcoma tumor, which was near his left kidney and inoperable. They were also unable to get clear margins on the tumor they removed. Dennis had many complications post surgery and almost lost his fight to cancer. Another surgery was necessary to repair some of the complications. In October 2011, the aggressive dediff tumor returned once again ... this time it was inoperable. The UofM Sylvester Center, where my husband receives his care, was able to perform an experimental procedure, nanoknife, which stabilized the tumor. We were beyond excited with the results. Dennis was alive, however, he was living with excruciating pain daily and no longer able to work. Finances became tight and downsizing was a necessity. It was now necessary for us to learn to live on one income. In early 2017, new tumors began to appear, his doctors continued to monitor them until they decided to attempt to perform the nanoknife again. I was off work on FMLA, without pay, for 3 weeks to take care of Dennis in November and another 3 weeks in December, after the 2 nanoknife procedures. During his follow up scans in January, they observed very small nodules in his lungs and also a couple of new ones in his retroperitoneal area. On April 17th, we received the most devastating news possible ... the tumors in his lungs have grown and new ones formed. We were told Dennis had 2-6 months to live if we did not seek chemo therapy immediately or if the chemo doesn’t work. If the chemo shrinks or stabilizes the tumors he may have a year. I once again had to stop working, FLMA- without pay, so I could make necessary arrangements, our trip to the hospital and including pre-funeral arrangements. What was to be a 6 day inpatient hospital stay for chemo, ended up being 16 days, due to his body not responding well to the chemo. Having only one kidney makes the harsh treatment even harsher. We came home from the hospital Friday May 11th, have a follow-up appointment on Monday and then back to the hospital Wednesday May 16th. I will stand by my husband and by his side, as no one should ever have to experience this alone. We live in Northern Palm Beach County, FL and travel to South Miami for his medical care, as his cancer is so rare. We are so grateful to have found an amazing sarcoma team ~1 1/2 hours from our home. Although University of Miami Sylvester Center offers financial assistance, it is only for those who live in Dade County, which excludes us. Those of you who know us, know it is very difficult for us to ask for financial assistance. With my not working, our bills will continue to pile up, in addition to all the medical expenses. I do not have a return to work date at this time or when I will again be receiving a paycheck. I thank you for your prayers and donations and when able to, will pay it forward.I am an advocate in the liposarcoma community and created a caregivers support group, which has international members. Once back on my feet financially I will continue to donate towards research and hope for a cure.
Thank you again. Remember to hold and kiss your loved ones. Appreciate and cherish them, as we don’t know what tomorrow will bring.
Hello and thank you in advance for reading our story. My husband Dennis was first diagnosed with liposarcoma in 2005. His first surgery was in July 2005 where the surgeons removed a 28lb welldiff liposarcoma tumor. During this surgery he also lost his right kidney, appendix, a portion of his small intestines and portion of his colon. In 2010 he had a recurrence in the same location, however, this time it was dediff liposarcoma and very aggressive. During his surgery and while removing the tumor, the surgeon also learned there was a welldiff liposarcoma tumor, which was near his left kidney and inoperable. They were also unable to get clear margins on the tumor they removed. Dennis had many complications post surgery and almost lost his fight to cancer. Another surgery was necessary to repair some of the complications. In October 2011, the aggressive dediff tumor returned once again ... this time it was inoperable. The UofM Sylvester Center, where my husband receives his care, was able to perform an experimental procedure, nanoknife, which stabilized the tumor. We were beyond excited with the results. Dennis was alive, however, he was living with excruciating pain daily and no longer able to work. Finances became tight and downsizing was a necessity. It was now necessary for us to learn to live on one income. In early 2017, new tumors began to appear, his doctors continued to monitor them until they decided to attempt to perform the nanoknife again. I was off work on FMLA, without pay, for 3 weeks to take care of Dennis in November and another 3 weeks in December, after the 2 nanoknife procedures. During his follow up scans in January, they observed very small nodules in his lungs and also a couple of new ones in his retroperitoneal area. On April 17th, we received the most devastating news possible ... the tumors in his lungs have grown and new ones formed. We were told Dennis had 2-6 months to live if we did not seek chemo therapy immediately or if the chemo doesn’t work. If the chemo shrinks or stabilizes the tumors he may have a year. I once again had to stop working, FLMA- without pay, so I could make necessary arrangements, our trip to the hospital and including pre-funeral arrangements. What was to be a 6 day inpatient hospital stay for chemo, ended up being 16 days, due to his body not responding well to the chemo. Having only one kidney makes the harsh treatment even harsher. We came home from the hospital Friday May 11th, have a follow-up appointment on Monday and then back to the hospital Wednesday May 16th. I will stand by my husband and by his side, as no one should ever have to experience this alone. We live in Northern Palm Beach County, FL and travel to South Miami for his medical care, as his cancer is so rare. We are so grateful to have found an amazing sarcoma team ~1 1/2 hours from our home. Although University of Miami Sylvester Center offers financial assistance, it is only for those who live in Dade County, which excludes us. Those of you who know us, know it is very difficult for us to ask for financial assistance. With my not working, our bills will continue to pile up, in addition to all the medical expenses. I do not have a return to work date at this time or when I will again be receiving a paycheck. I thank you for your prayers and donations and when able to, will pay it forward.I am an advocate in the liposarcoma community and created a caregivers support group, which has international members. Once back on my feet financially I will continue to donate towards research and hope for a cure.
Thank you again. Remember to hold and kiss your loved ones. Appreciate and cherish them, as we don’t know what tomorrow will bring.
Organizer
Marni Buxbaum-Russo
Organizer
West Palm Beach, FL
