Perspectives, Sarcoma

The Will to Live- by Guest Blogger Suzanne Ruggieri


Today’s blog comes from the wife of an osteosarcoma fighter. Together, they fought the disease as a team and beat the odds they were given, at least for a couple of years. Their story together may have ended early but it lives on through the eyes and spirit of their daugther.

I remember the first day my Ethan told me that he once had been treated for Osteosarcoma. I never expected him to say something like that, but I also thought it wasn’t a big deal. I had never been in the “front row” to witness the impact of cancer on a person fighting it; I was ignorant and oblivious to it. As Ethan and I continued our life together and soon we were engaged to be married. I knew that most likely Ethan’s cancer would rear its ugly head again at one point, but in the excitement of building our future together I assumed it would happen much later down the road. Unfortunately, it didn’t.

Ethan and Suzanne 1

The osteosarcoma came back with a vengeance early October of 2006, just two short months before Ethan’s 5-year remission date; only we didn’t know it yet. Our wedding was planned for November 18, 2006.

After much convincing on my part, we scheduled an appointment with the doctor and a biopsy was taken. The test results pointed to sarcoma again. It was so difficult to cover the panic that I felt when everything we planned had to be thrown in the wind. There was only one guarantee: Ethan would fight as hard as he could to beat the disease yet again.

We had so many appointments going from oncologist to oncologist with each one telling us the same thing: that the cancer has progressed too far and there was nothing that could be done for him and we should just go home. That did not sit too well with Ethan or me. We wanted our wedding, our honeymoon, and the happiness of newlywed bliss.

We knew that Ethan’s body was consumed by sarcoma; as it was in his lungs, heart, skin, pancreas, skull, kidneys, and liver. Despite that, Ethan felt he could fight it as he had beat it once before, and this time we would fight it as a team together. But we had a problem: we couldn’t find a single doctor that was willing to fight with us.

Ethan

We were scared and discouraged but we refused to give up so we headed to yet another consultation with a doctor that came highly referred. We didn’t expect any different from the previous doctors yet we knew if we didn’t try then we couldn’t beat it. Right away as we met Dr. Vyas we knew this would be different from all of the other doctors’ visits. He could clearly see we were worse for wear, yet he didn’t tell us that we should go home, rather he talked to us like normal people. He did make it clear that we were in bad shape and he could make no guarantees, but he also told us he would do everything he could to help us. That was a first for us.

We left the clinic that day with a ray of hope and we got married two weeks later, went on our honeymoon to the Virgin Islands and tried to enjoy the bit of time we had before it would all end.  We had a wonderful time despite the fact that we carried over 25 medications with us all prioritized to combat the painful effects of the cancer.

Ethan and Suzanne

Upon our return, Ethan was admitted for chemo treatment right away and he stayed 39 days. It was about 5 weeks into our stay when we learned that we were expecting our daughter, Emily. Despite feeling horrible, Ethan smiled so brightly and was so proud that he was going to be a Dad. From that time on, Ethan’s biggest concern each day was to make sure I was comfortable enough. My well-being and our daughter’s were more important than Ethan’s own comfort-the thought of his daughter gave him even more reason to fight.

Over time, the lesions polluting Ethan’s body shrunk and some even disappeared. Then as summer came as we prepared for our daughter’s birth we were still planning for the future as a family. Our daughter made her debut into the world on August 27, 2007 and Ethan was by my side. Two weeks later Ethan had his first lung surgery to remove the nodules. Up until that point I stayed with Ethan 24/7 and tried to be his voice and his biggest advocate.

Ethan with Baby

The first two days after the surgery I had no choice but to stay with Emily. It was heartbreaking to see that Ethan needed me desperately and one of the hardest decisions I had to make was to entrust Emily with family and to again stay with Ethan. At that time I felt that he needed me more than she did and I trusted our family and knew she would be well taken care of. In my heart I knew that Ethan and I were a team and we had to fight this as a team.

Life went on as did the chemo treatments and surgeries until the fall of 2008. That fall brought many horrors for us. Though Ethan’s lesions disappeared in some places he now had the addition of brain lesions. These lesions caused seizures and resulted in an emergency surgery. What we thought was a stumbling block was the beginning of the end and from this point on we were limited in the chemo treatments because Ethan’s body could not heal and become strong. As a result each time he had a surgery the cancer was flourishing elsewhere making it impossible to keep up. Finally on December 19, 2008 after an ambulance ride to the hospital we were told that there wasn’t anything else that could be done. The cancer was wrapping around Ethan’s spinal cord and was slowly paralyzing him.

We went home sad and empty and I made hospice arrangements and I was forced to accept the fact that I could not make him better. Regardless of how quickly I could change his drug pumps or clean his lines, I could not stop everything from happening. Ethan came to terms with his end on the last day in the hospital. Alone with his aunt, he said that he was blessed and fortunate to have had such a wonderful life and that there were people that did not get to experience half of what he experienced in his 24 years. He said that having Emily and me were all he could ever want. He was happy and he could leave our world happy knowing that.

We lost the battle in the early hours of February 8, 2009. I had given medication and must have fallen asleep and less than an hour later, I awoke and did not hear the oxygen machine. I knew he was gone. I never said goodbye and part of me knew that he left our world when I finally got a moment to sleep when I wouldn’t worry about him and for a few moments I was at peace.

Ethan 1

Looking back I know we were truly blessed from the beginning. I was blessed to have met such a wonderful old soul in the body of a 20 something year old man. I still cherish many of our sweet moments we had in the hospital; sure there were tears and worry in our room….pain and fear in waiting rooms…..but there was also undying love and support and a lot of humor that filled our hearts. We had the drive and determination to fight as hard and as long as we could and we made it 2 1/2 years together. In the beginning all doctors, except for Dr. Vyas, reminded us daily that Ethan had less than a month to live and well we proved them all wrong. We proved that determination and will to live is half the battle. We proved, with the help of Dr. Vyas, that we as people do not determine the lifespan of anyone.

I may not have Ethan by my side but I have Emily, our daughter, and a wonderful family that carries on the memory of Ethan daily. Emily is Ethan in every way: her eyes are his shade of beautiful, her facial expressions and silliness remind me that Ethan will always live on through her. I have remarried and Emily has a little brother, Gabriel Ethan. He too, knows the great importance of his middle name. Ethan’s legacy will always live on thru us and his drive is embedded in Emily.

Ethan’s big heart is part of Emily as well. Each year, she leads her Girl Scout troop in collecting donated boxes of Girl Scout cookies to take to the patients at Children’s Hospital of Pittsburgh, where her Daddy Ethan was taken care of. We support her as a family and want to help those who may just be in the same place that we once were. We do it to invoke a smile on a young child’s face or even a parent, because as Emily knows her Daddy Ethan LOVED cookies.

Ethan is as much a part of our family now as he was when he was with us physically. Wherever we may be, whatever we may do, he is always with us.

– Suzanne Ruggieri

Ethan with Emily

Emily is currently in her 2nd Annual cookie drive and for more information please email gscookies4chp@gmail.com.

Standard

8 thoughts on “The Will to Live- by Guest Blogger Suzanne Ruggieri

  1. Colleen Kenney says:

    What a beautiful love story and tribute. John is truly blessed to continue Ethan’s legacy with you both. God Bless.

  2. Jim Granville says:

    Suzanne, John shared this link with me. I did not know of Ethan’s struggle or your profound love, support and heartbreak. John warned me before hand to have the tissues ready. I’m glad he did. You are a remarkably strong woman. God bless you. It is such an honor to be your friend

  3. Robin Ruggirei says:

    What a wonderful story, but so sad. I cried reading this. Suzanne,you were so strong. My sisters husband fought for seven years. He did everything they said because all he wanted to do was to live for his family. He lost his battle in 2009. It was so hard.

  4. Claire Barnhouse says:

    Mo,
    As I read this today I think about me everyday living with fear of cancer returning.. It goes to show us we need to live every moment like it is our last. Anyone that has been hit by this disease has to keep fighting weather it is just starting out or trying to stay NED. Mo I am very lucky to have you and your staff at the University of Iowa fighing for me and as well as all your patients. As I see that commercial for Cancer Treatment Centers for America I just wish we had a comercial like that. So everyone can see and hear about all the success stories at the Comprehesion Cancer Center there. what a blessing that place is to have.
    My hat always goes off to you Mo, my amazing doctor of science!
    Claire

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s