Introduction:

Steven Mackin was a beautiful soul, and when we were asked to write the complete story of Steven’s battle, we realized it would be a tremendous effort. There were so many details, so many things we wanted to say, and it required a tremendous amount of memories and feelings.

It is an honor to share our families’ journey in dealing with Ewing’s Sarcoma – a rare and often fatal form of bone and soft tissue cancer. This is the reason why we formed Stomp Out Cancer, and why we work so hard to raise money to find less toxic treatment methods, and early detection tests for this horrible disease.

From Sheila Brady, Steven’s Mother & Amy Sims, Steven’s Sister:

My son Steven Mackin was a very warm, fun-loving, and talented musician. He was well read, traveled often, and loved life to the fullest. He was an avid Internet user with blogs, a live journal, and MySpace where he connected with people from all over the World. He never feared challenges, and in the 27 years of his life, he opened our eyes to a kaleidoscope of life experiences beyond our imaginations.

Steven had been openly living as a gay man for over four years, an due to the closed minded attitudes of small town America, he felt that he needed to live in a more accepting community. In December of 2002, he sold all of his personal belongings, packed up his Ford Ranger with a myriad of what he considered to be “essentials” including his guitar and laptop, and against our wishes – traveled across country to live in Sacramento, CA. He began working at a sleep clinic and settled in to a new life of freedom – freedom from ridicule, and freedom from the constraints of a judgmental society. He was free to be himself in an atmosphere of acceptance and tolerance, and it was a new awakening for him. It was the first time in years that we could actually say that Steven sounded and looked to be happy. He was truly blissful!

One spring evening San Francisco, he met and eventually fell in love with his soul mate – a Yale graduate with a passion for music, and the finer things in life. In June, for his birthday, he brought his soul-mate Giacomo home for all of us to meet him. During his stay he complained often of back aches and groin pain. He had an accident early in May, and he contributed those pains to his accident. He went back home to California, and was in increasing pain. He went to the emergency room several times, and was eventually referred to a chiropractor for therapy on what they considered to be a possible pulled muscle or slipped disk. The chiropractor recommended an MRI, and within hours of the MRI he was on the road to San Francisco diagnosed with a malignant cancerous tumor located in the spinal column and pelvic cavity. This began a long and painful crossing into the title of a cancer patient.

Myself, Amy, and her nine-month-old granddaughter McKenzie flew immediately out to California to be by his side. On September 2^nd, surrounded by his family, we were handed the diagnosis of Ewing’s Sarcoma. At the time of diagnosis, the tumor was larger than a brick and he given a life expectancy of a ten percent chance of a 5-year survival. Due to the location and size of the tumor, which road to take for treatment baffled the doctor’s. His cancer included so many different areas of specialty—neurological, pediatric, orthopedic, urological, vascular, oncology, spinal, muscular…the list seemed to be endless.

Due to the compression of the spine and on certain nerves, he immediately lost his ability to use his left leg and he was confined to a wheelchair. Surgery was the first defense—to fuse the spine and remove a portion of his vertebrate that had been deteriorated by the cancer. Steven began chemotherapy treatments in November of 2003. The chemotherapy was especially toxic and he almost lost his battle with cancer multiple times. In May of 2004, doctors lost all hope for him when he became infected with a staph infection stemming from his port where chemotherapy was given. A priest was brought in to read him last rites and the doctors gave our family little to no hope of survival. By the grace of God, he beat the odds and made a full recovery.

In late November of 2004, his life partner determined that he wanted a partner that could walk hand in hand through life with him, not a partner that needed to be pushed in a wheel chair. The constant care giving and demands of a cancer patient took its toll on him and he was unable to continue on the journey with Steven. Once again we packed up his belongings and moved him home to live with me in Bardstown, Kentucky, which is in the Central part of the state.

Due to the severity of his cancer, there were no treatment facilities or knowledgeable physicians to take over his treatment/care. He would drive 6 hours to Cleveland, OH to see specialists at the Cleveland Clinic. These specialists eventually connected Steven with Dr. Sandler at Vanderbilt University Medical Center in Nashville, TN. He began radiation treatment for 5 weeks—6 days a week. When radiation was finished, they declared him to be in clinical remission. The cancerous tumor was still there but it had not shown significant growth for a long period of time. He came home with a new outlook and promise on life. He attended physical therapy and was able to eventually work his way up to walking with polio canes. He went to Nashville every four months for a checkup on his cancer and all new scans. He was disabled and unable to work because of the cancer but he loved to meet up with friends, Karaoke “Kentucky Rain” and travel all over the United States. He lived out of a suitcase and loved every minute of the excitement. His laptop, iPod, and cell phone were his best friends. He would load up his camo backpack and wave goodbye as he loaded on the plane to his next big adventure.

In September of 2006, after 2 years of clinical remission our worst fears came true—the cancer had returned. He had received a clean set of scans in August but had been plagued by back pain throughout most of the summer. We received a phone call from him one Sunday afternoon. He was in an emergency room in Las Vegas, NV and would be returning home. My youngest daughter Tory picked him up at the Louisville International Airport and drove him immediately to our local emergency room. He was then sent to Vanderbilt and within hours the doctor’s confirmed that his cancer had indeed returned with a vengeance. We were well-educated in San Francisco concerning Steven’s outlook if the cancer ever returned and we knew immediately that he had been given a death sentence and we knew that our time left with him was limited. We brought him home to University of Louisville Hospital to receive radiation for pain management with the intent to bring him home.

After meeting with doctors and determining that any and all treatment would be experimental and futile to his recovery, we called a halt to all treatments. With the help of a family friend that happened to be a specialist in female cancers and the local Hospice nurse, we met with doctors and asked for the Palliative Care team to be called in for Steven. It was decided that he would come home to be with the people that loved him the most. He would live his remaining time surrounded by the comforts of home. His last livejournal post was written from his hospital bed before he came home. In it he outlined his prognosis for his friends and told about his journey with cancer.

We brought Steven home on a Tuesday afternoon and it seemed that it did not stop raining the entire time that we cared for him. As we left the hospital, we were given the grim prognosis that he would not live to see the weekend. We were met at my home by the most loving, compassionate Hospice team. As our families rallied around us, we cared for Steven 24 hours a day for a very short 5 days. Steven lost his ability to speak and was coherent a small amount of time. Through the entire process, he rarely complained and often played jokes on his nurses and doctors. He was more worried about how we would feel and how we would cope without him. His biggest fear was the he would be forgotten and that his young niece and nephew would never know him. He firmly believed that he had not left his mark on this world. He had just started living when cancer struck.

Steven died on a Saturday afternoon, October 28^th 2006 at 2:00 pm surrounded by his family. He went peacefully with a slight smirk on his face. The days following his death were filled with phone calls from Spain, Italy, California – too many places to even list. Hundreds of mourners wrote comments on his livejournal and myspace pages. Friends drove all night from Canada and flew from all around the United States to say their last respects and to be a part of his “last party”. He planned every detail from the flowers to the people that he wanted to speak. It was a beautiful farewell to a beautiful person. Throughout his journey with Ewing Sarcoma, we kept in mind that Steven continued to believe that we are all worthy of love in its most infinite form, and we witnessed the return of that love from an outpour of friends and loved ones that contacted us to pay their respects. Sometimes we would receive an International call with a simple “I’m sorry,” simply because they did not know enough English to say anything else. It was touching, moving, and so very overwhelming to our family.

After Steven’s passing, it seemed that our lives were invaded by hundreds of new faces and names. We met people who knew a Steven that we didn’t know. It was a time of mourning but also a time of discovery. We discovered this person that we never really knew. Steven always believed that God chose him to have cancer because he never would have gotten to know his sisters or his nieces and nephews if it wasn’t for the cancer. He would have been living in some exotic place, visiting only a couple of times a year. Cancer brought him home to us and it allowed us to get to know this beautiful soul that time and experiences had changed.

Months after Steven died, Jake Wheat a friend of Steven’s contacted us. Jake had been offline for a while and did not know that Steven had passed. This is where the story of Stomp Out Cancer and our efforts to battle Ewing’s Sarcoma begins.

From Jake A. Wheat, Steven’s Friend:

At first glance, Steven was a normal healthy young man. I worked about 90% of my life online doing Internet marketing, and so in my spare time I liked to chat with new and interesting people. One of the people I met online was Steven, and for the longest time we would chat about movies, music, and various other topics which we shared a common interest in. I found him to be so entertaining, and such a captivating friend that I hold dear the few times I was able actually able to meet him in person, to which he surprised me with his crutches which he said “he keeps out of his photos, if at all possible.” He told me his story about his battle with Ewing’s Sarcoma, and told me that he had to learn how to walk again, use the crutches, and that he was trying to get back to living.

I found him to be a very comical, bright, and magnetic. His smile and charm brought him friends from all over, and all of the people I knew who knew Steven, loved him. I worked for a local ER Trauma unit, and it was in my second year there that I grew to know Steven. I kept in touch with him through various methods of communication – chat, phone, and as I mentioned earlier our too few meetings in person. He was someone that I looked forward to talking to, because he seemed to make my day better after dealing with the sick and injured people in the ER.

I take a lot of things for granted.  I log on to my chat utility programs, and sign into my various portal accounts, and catch up with friends as much as possible.  I’m notorious for going about my life oblivious to the day to day functions of other people, at times, and consider myself to be incredibly busy – maybe too busy. Steven made me laugh, and ultimately that is what I remember most about our conversations.   Laughter.  It was all that we did in the few times we were able to hang out together, and he was a person that immediately bonded with me.  An all too familiar element of his personality that I have heard a hundred times over from everyone who had an opportunity to know Steven. We used to talk about movies a lot, because Steven loved movies – and we shared this common ground for campy silly movies that involved hilarious plots or dark comedic values. 

“Superstar,” with Molly Shannon was one that always got us laughing the most (well Steven laughing at me) because I secretly told him that when I was younger I was caught making out with a maple tree in my backyard by my Mother.  I never lived that down with him. Steven constantly kept giving me these wonderful compliments, and thankfully I have log files of our chats which I read and laugh and laugh.  However, there is this sadness in the bottom of my stomach that seems to grow and grow.  Mourning. My life had gotten very busy.  I left my job of two years working in a level one trauma center, and went though a considerable amount of life and job searching, and lost my cellular phone, and did not spend time on the Internet. 

I was healing emotionally from stress from my previous job, acquired shingles, and was dealing with stomach polyps caused by stress that had to be removed.  There were eight to be exact, including a peptic ulcer which required surgery.  During this time, I was not the one suffering, Steven was.

While I was going through my life transition, Steven had found out that his cancer had returned, and he began again a battle with Ewing’s Sarcoma that would ultimately take his life. Resuming a new job, with a new phone, and back online – I discovered that Steven had passed away and sat in shock for days just going over letters, journal entries, YouTube videos, and online memorials.  I was devastated, and even signed online not able to delete his screen name from my chat program, but instead found myself reading his online chat logs, and laughing and crying at the same time.  He was a dear friend, a good man, and I grew angry. I felt somehow that I betrayed him.

Steven’s loss has saddened me more than I can explain.  Sometimes we take people for granted in every aspect of our life, whether it be cyberspace or in “the real world,” and whether you are online or offline, I can tell you – my heart is broken.  I didn’t even get to say goodbye, and I wasn’t there for him.  I had so much guilt, because he was not only a good friend but a support system.  Our conversations went into the early hours of the morning, and he will forever remain in my chat program – I cannot delete him, and I won’t.  I keep thinking one day he will sign back online again. 

To make peace, in the early dawn on April 19th, 2007  – I made the trip to Bardstown Kentucky to pay my respects to Steven at his gravesite.  I had a lot that I wanted to say, and so I was full over nerves driving to the cemetery.  With little effort I was able to locate St. Josephs Cemetery, I found it difficult to locate Steven’s plot.  It was due to the fact that his headstone had not yet been delivered (it has since been delivered, and is beautiful) and once I found it I was able to tell him goodbye, how much I missed him, and lastly – to leave him a copy of the DVD “Superstar” and a U of K hat.  Steven’s loss has saddened and angered me more than I can explain.  However, I could not let his passing go without memorial, and Steven is owed a distinctive honor.

As I was driving home that day from the cemetery, a beautiful sunrise ignited the sky, and I decided that I had not done enough to honor him. Since I worked around music all the time, I thought that a compilation CD of Indie artists would be a wonderful tribute to him, and so I decided to reach out to Steven’s family and begin this project.

So how did Stomp Out Cancer form?  Sheila Brady (Steven’s mother) and her family embraced me, and decided it was time to make something positive out of their grief, and we created the first compilation CD which raised almost $4,000.00.  We formed Stomp Out Cancer, Inc. – which works to raise money to help find less toxic treatment methods, and to find early detection tests to combat this horrible disease. Our first CD release raised $4,000.00 – not a big number, but not a small one compared to what we had anticipated.  Steven loved music, and so it was a no-brainer to use music as an outlet to get the message out about Ewing’s Sarcoma, and to raise money to fight this horrible disease.  The idea sparked from grief, tribute, and memorial.  It also sparked from fate, and a seemingly guided chain of events that lead to this most positive effort.

As we continue to grow, we have been blessed to find other families that have been touched with their own stories of battling Ewing’s Sarcoma.  This year, we are releasing a new CD titled “Hope,” which is in tribute to Ben Lanman – a courageous ten year old who has overcome the odds from his diagnosis with Ewing’s Sarcoma, and is now a bright enthusiastic child. Our Volume 2 CD is in tribute to him, and all of us here – including Ben and his family are excited to be a part of this wonderful project.

Sincerely,
Sheila Brady, Amy Sims, and Jake Wheat
StompOutCancer.com