As told to us by told by his sister Cindy Kuhnash…
During the summer of 2006, my brother, Gary, at 46 years old, noticed a painless lump in his right thigh that continued to grow larger. Further testing revealed that this painless lump was “liposarcoma”, a very rare cancer of the soft tissue. Being told you have cancer is heart wrenching and we were in a state of shock! Gary was immediately sent to the James Cancer Center at Ohio State Medical Center to have this ‘mini football sized tumor” removed from his thigh. His tumor was large (9cm), wrapped around his femur bone and was the more aggressive type (myxoid) of cancer. We were overwhelmed, as the medical team advised us about the risks and benefits of leg amputation, chemo and radiation. After hearing all the facts, we did not choose amputation and opted for surgery and to just watch and wait. This is when we entered “the cancer world” and we were clueless as to what was ahead…Following surgery, Gary suffered a life threatening staff infection that kept him hospitalized for an extra two weeks. Gary finally left the hospital with a drainage pump attached to his thigh and this was kept in place, to speed up healing, for more than a year. During this recovery period, Gary’s energy level was low and the leg pain was sometimes unbearable. There were frequent visits to and from OSU from Springboro, Ohio (3 hours round trip) and working full time was becoming almost impossible for Gary. The bills were piling up, as Gary tried desperately to work thru the pain. It was also very concerning that Gary’s leg wound would not heal…and so the nightmare continues….
November 2009- Cancer spread to Gary’s spine(sacrum)tailbone. This was devastating, because we assumed that Gary was cancer-free. We were advised that the prognosis of the average liposarcoma patient, once cancer has metastasized, is about two years. Gary proceeded to have the spinal tumor removed, followed by radiation then months of chemo. Even with these treatments, the cancer continued to grow and spread…This cannot be happening! This only happens to OTHER people!
September 2011- Cancer spread to Gary’s abdomen and he underwent, yet another surgery to remove spleen, two tumors on spleen and (9cm)tumor on adrenal gland. This surgery was especially tough on Gary and we felt helpless as the cancer continued to spread throughout the body. Smaller tumors continued to show up in his abdomen.
November 2011- Cancer continued to grow in Gary’s spine. A large tumor was now pressing on the 7th and 9th vertebrae, deteriorating the spine wall. Gary was now in unbearable pain and if the spinal tumor was not removed immediately, it could result in paralysis! An emergency, extremely high risk surgery was performed by very high skilled, outstanding surgeon, Dr.Mendel, at OSU. On November 28, 2011, Gary underwent a two day (20 hour) spinal surgery! Gary’s spine was opened, disconnected and reconstructed , by replacing the section of his spine that the cancer destroyed, with a six inch metal cage and pins. The surgery was successful and Gary was not paralyzed! We continually thank God for Dr.Mendel, a most outstanding surgeon!
December 2011-January 2012- The very aggressive cancer continued to grow…The adrenal gland tumor, removed two months prior, had already grown back larger. Tumors were now showing up on Gary’s skull (top and base/clivus), that if left untreated, could cause blindness or death. A tumor was also growing in his pelvic bone, threatening to interfere with walking. At this time we were told that if this cancer was not treated and controlled quickly, that Gary could have only weeks or months to live! This all seemed surreal and we felt like we were in a really sad movie about another person. This could not be happening to us? All of December and January were full of daily trips (3 hours round trip) to and from OSU for chemo alternated by radiation to skull and pelvis. Everyone should spend one day, the week before Christmas, in a chemo waiting room. I promise you, that any petty problem that you have, will suddenly seem so insignificant compared to what so many advanced cancer patients endure on a daily basis! The holidays are an especially challenging time for these patients. We shall never forget the comforting music of the harpist, that played for us in that OSU chemo waiting room, two days before Christmas. Thank you harpist and OSU!
February 2012- Gary was no longer able to work full time and the loss of income over the last few years, due to cancer, was overwhelming!!! While Gary was still undergoing more chemo treatments, we moved him out of his home and in with our family of five, to offer the extra support that he so desperately needed at this time. MRI’s revealed that the traditional chemo was not being effective in controlling Gary’s cancer, as tumors continued to grow alarmingly larger each month. Gary’s prognosis was poor and uncertain. His only hope was a clinical trial of “Yondelis” being offered at OSU, shown to help, but not cure his type of cancer. Gary continued to stay positive, keeping his wonderful sense of humor and always smiling, despite the his grim prognosis. The medical staff at OSU cannot help but to love him!
May 2012 thru December 2012- Gary started a clinical trial (Yondelis) at OSU and he began to show some improvement in shrinkage of all of his tumors by 50%. The side effects were less intense than traditional chemo and we were feeling encouraged and uplifted by this good news, but the remission did not last long…
January 2013- Gary was rushed by ambulance to OSU for pneumonia, life threatening atrial fibrillation, left sided heart failure and a 3 cm blood clot in his heart. Sadly, he was released from the clinical trial, because of his heart failure.
May 2013 (present time)- Recent MRI’s show that Gary’s cancer is growing and spreading rapidly! There are two new concerning tumors over his kidneys, which have doubled or tripled in size in the last two months, with the largest measuring 9cm. Gary’s only option now is traditional chemo, which he started on Monday, May 20, 2013 at OSU. Recently, the “Dream Foundation”, a wish-granting agency, that grants the “the hearts final wish” to terminal adult patients, granted Gary his dream wish of a trip to Key West, Florida for himself, his 13 year old son, Noah and a few family members. July 19-22, 2013, Gary and his family experienced a most magical, joyful and blessed trip to the Keys. Those special memories will live in their hearts forever! (See attached pictures from the trip). Since the trip, Gary has been hospitalized twice for increased pain from continued tumor growth. Facing a very uncertain future, Gary continues to live each day to the fullest, always with a smile on his face…
We are so THANKFUL that Wendy’s children created the “Wendy Walk” to support awareness and funding for research, to find a cure and treatment for this very rare and devastating cancer, called liposarcoma! We hope that someday our family can walk the “Wendy Walk” beside all of you, to honor Wendy, my brother and the countless others who have suffered from this horrible disease. Please pray for a cure for liposarcoma and for my brother Gary, our family during the coming days…