This one’s for Evan

It is with a heavy heart that I write that Evan Spirito passed away on Wednesday, November 2nd. Dr. Shaw (Alice) was kind enough to call me yesterday with the sad news.

When I logged onto my blog today, there were 1311 hits, or views on Wednesday and 534 the next day. That is a bit more traffic than this blog usually sees, and almost all of it was generated by google searches for Evan Spirito (who authored the blog on September 26th). Obviously he touched the lives of many.

Evan was one tough and powerfully optimistic kid. A little over two weeks ago I had emailed Evan wondering if he would like to speak at the Shine A Light vigil in Boston on November 1st. I also told him that I was feeling better. His prompt and (as always) exceptionally courteous response on October 24th gave no indication that things were going poorly;

Hi Linnea,

Glad to hear the LDK is working! I think my new regimen is indeed working as i am feeling better, but i dont have scans for a couple weeks. Thanks for thinking of me, however i do not think im ready to be the guest speaker just yet. 
Thanks Again,
Evan
P.S. Where exactly does the Shine a Light take place?

 

If life were fair, and lung cancer not such a vicious disease, twenty-four year olds wouldn’t die from lung cancer. My heart goes out to his family and his lovely girlfriend and also to Dr. Shaw, who had known Evan since he was diagnosed at the age of twenty-one and who respected and cared for him deeply.

Evan Spirito

SPIRITO, EVAN B., 24, died Wednesday at home surrounded by his family and friends after a valiant three year struggle with lung cancer. A lifelong resident of Providence, he was the beloved son of Anthony and Susan (Baybutt) Spirito. Evan was a graduate of Henry Barnard, Gordon School, Moses Brown and Colorado College in Colorado Springs, Co. At Moses Brown he played football, hockey and lacrosse. At Colorado College he majored in economics and played football and lacrosse. Following his graduation from college, he remained in Colorado working as a ski instructor at Vail. Evan loved team sports and spending his summers with his cousins at his grandmother’s home in Mattapoisett, MA. Besides his parents he leaves a sister: Mia Spirito and his longtime girlfriend, Anne Fallon both of Providence. He also leaves his grandmothers: Nancy Baybutt of Mattapoisett and Ernestine Spirito of Hillside, NJ; aunts (Dawn, Jamie, Mary Lou, Sue, and Kathy), uncles (John, Michael, Tim, and Fred) and cousins (Britta, Celia, Brad, Tom, Andy, Will, Gabriella and Sam). He was the grandson of the late Anthony Spirito, M.D. and Richard Baybutt. A Memorial Service will be held Saturday at 11am in Grace Episcopal Church, 145 Mathewson St. Providence. In lieu of flowers, donation in his memory may be made to the Evan Spirito Memorial Fund c/o Anthony Spirito, 297 Wayland Ave, Providence, RI 02906. Condolences may be left at monahandrabblesherman.com

Published in The Providence Journal on November 4, 2011

*I should add that Evan was no longer on the LDK378 trial, having returned to traditional chemo some weeks ago after progression.

27 responses to “This one’s for Evan

  1. Dearest Linnea,

    I am so sorry to hear of Evan’s passing. Please take comfort in the knowledge that the Heavens will shine a little brighter.

    Blessings, as always, to you and yours,

    Tracy

  2. Oh, no!
    I never learn how to put the emotions into words, I’m just paralized and sad of once again seeing a loss.
    Thinking of you, thinking of Evans family.
    Love and hugs,
    Anja

  3. Carolyn Kersten

    Linnea, I am so very sorry for you and, of course, for his family and friends. He sounds like an awesome guy.

    Life (and death) are not fair.
    Love, Carolyn

  4. I know you were thinking of Evan when we were together in New York.
    I am so very sorry to hear this news, Linnea.

    Love,
    Cristina

  5. I did not know of Evan before reading this, but it left me in tears. Knowing that this disease is so brutal and often leaves a path of scarred hearts in it’s wake is tragic, even as I recognize that hope is something to be held close and life to be lived as fully as possible. My heart goes out to Evan’s family and friends, as well as his team at MassGeneral. He sounds like a remarkable soul; someone who did a lot of living and touched many people in his short life. Sending lots of love my friend. xx

    • Lorraine, I spoke at a Lungevity event this morning about the injustice of such a young person contracting lung cancer, and you and Sy were much on my mind. There is much emphasis put on young woman being susceptible to lung cancer. In my personal experience, it would seem to be a particularly virulent disease in young men. Perhaps someday we will understand why, but it is a tragedy. Love back at you,

      Linnea

      • Glad you connected with LUNGevity – but am saddened that you had a new incident to discuss. Too many losses – male and female, young and old.

  6. I am so sorry to hear the news, Linnea. Such a tragedy to lose a young, strong and bright man like Evan to lung cancer. It doesn’t make sense to me at all.

  7. Linnea I am so sorry for your loss. Truly, it just doesn’t make sense. Damn.
    Linda

    • Linda, thanks. Although I certainly do feel this loss, my heart really goes out to his family and girlfriend. It’s just beyond sad.

      Linnea

  8. Linnea I was so sad to read this latest post. In his photo he looked so young, so strong, so hopeful. This horrible disease shows no mercy. My most sincere condolences to all those who loved him.
    Beryl

    • Beryl, he was all of those things. He had been through some very difficult treatments and yet he remained so unfazed and posed for whatever was next. I too send condolences to those who loved him.

      Linnea

  9. Mum, I am so sorry for this loss. my heart goes out to his family. what a brave young man.

    ❤ love

    jemesii

  10. Linnea – I am Evan’s father and I appreciate your support of my son and the comments of the members of this blog. I would like to share Evan’s eulogy with this group:

    Evan Spirito 4-9-87 to 11-2-11
    Grace Church, Providence RI

    Some of you may recall what the Wizard says to the Tin Man at the end of the Wizard of Oz that is so very real to so many of us here today: “Hearts will never be practical until they can be made unbreakable”. Our hearts are broken because we lost someone who had such a kind heart, the kind of heart the Tin Man was seeking so desperately.
    There are many wonderful things that have been said about Evan on Care Pages and Facebook including : an inspiration, courageous, gentle , respected and loved by so many, one of the kindest people I have ever known. But very few know much about Evan’s last 2 years and 10 months because he tried to live his life as normally as possible and not take on the identity of a cancer patient. But for those who did have a chance to observe him during this time, you couldn’t help but see that his heart was untouched by his diagnosis and how much grace and courage he displayed in coping with a terrible disease.
    When I emailed his doctor in Colorado to tell him that Evan had died, he replied, “Evan was one of those remarkable young men that really made an impression on everyone he met here”. His doctor in Boston, Alice Shaw, emailed me this : “Evan was so special to me and to everyone who knew him. He was such a trooper to put up with everything. I cannot tell you how deeply disappointed I am that we weren’t able to get him more time”.
    There were some clues before his diagnosis that Evan had the skills, grace and fortitude to cope with cancer. There were the fingertip catches in crucial situations at MB. And there was the first play of the first game of the season as a freshman at Colorado College when he caught the opening kickoff over his shoulder in the end zone and much to the chagrin of myself, his uncle, and his cousin, who were screaming take a knee, take a knee, he returned the ball to the 50 yard line.
    But how one copes with the unimaginable is the true test.
    Evan was diagnosed with Stage 4 non small cell lung cancer on January 9th, 2009. Despite the dire diagnosis, his plan right from the start was to only miss one semester of school and return to Colorado College in the fall. Susan and I wanted this for him too because we knew that Anne would be there to love and take care of him in our absence. And despite long odds, he and Anne did return to CC in the fall of 2009. There were 5 houses in a row off campus filled with friends and he was so excited to be back on his own and living in one of them. Most of these friends are here today.
    He was also excited about playing lacrosse so he worked out with the lacrosse team to prepare for the spring season even though every third week he was too tired from chemo to run or weightlift. Eventually he realized that he wouldn’t be able to play that spring because of his ongoing treatment. But he did do go to class those many weeks he was tired and graduated last December, only one semester behind his classmates.
    Shortly after Evan was diagnosed, we were in the car together and he asked me, “What does it mean to beat cancer?” Here is the answer:
    If you can’t play lacrosse, you ski. But you don’t just ski, you ski 32 days despite getting chemo every third week. And then after graduation, you become a ski instructor. Safe to say there aren’t too many ski instructors who have lung cancer but then again Evan rarely told anyone at work or at school that he had cancer.
    How else do you beat cancer?
    Even though you start to cough a little and everyone knows this is not good, you tell your parents that as long as you feel good enough to ski then you won’t worry about your cancer. And with your parents visiting on a night when you get 18 inches of powder, and even though it is obvious you are trying to suppress your cough for their benefit, you say let’s catch the 7am Vail bus so we can ski fresh tracks.
    By early March Evan’s coughing was getting worse, he was more and more tired, and we had decided that he would return home for more treatment. But he wanted to stay in Vail until the end of the month because good friends were coming to Vail to ski the first week in March and his cousins were coming the third week. That’s how you beat cancer.
    After coming home from Vail at the end of March, Evan was hospitalized with a pulmonary embolism. Shortly after he left the hospital he had 3 weeks of whole brain irradiation for metastases, but often drove to Boston himself for these treatments. He started on a new experimental drug but it made him so sick that he lost 30 pounds before we all finally agreed that he couldn’t continue on the trial. So how do you rise above cancer under these circumstances? You endure countless procedures, get poked and prodded , and say thank you after the doctor is done. You have pain that requires narcotics, frequent coughing, and trouble catching your breath when you eat, but when someone asks how you are doing, your answer is, “Doing well, thank you”.
    At the end of July , Evan started another new experimental trial, his third, and Evan began to feel better and started talking about the future. One day last August I came home and Evan had brought his golf clubs up from the basement because he wanted to go to the driving range. He wanted to get some practice in the hope that he would be able to play with the Fallons at Point Judith in a few weeks when he was stronger. And also even though he was one of only a handful of people in the world on this new experimental drug, so no one knew how long it would work, Evan said he wanted to find an unpaid internship in finance, preferably with specialists in green technologies. But 3 weeks after that he was hospitalized with a life threatening staph infection.
    And in the end you beat cancer by maintaining your dignity.
    One week ago yesterday, Evan and I discussed the possibility of postponing the chemotherapy treatment due last Monday. Evan was sitting in a chair in his room and told me he just didn’t think he could do another round of chemo but that he didn’t want to let down his family and all the people who had done so much for him. When I started to cry, he stroked my arm and said everything would be all right. Later Evan told Anne that he felt love from people near and far and that he wasn’t scared because he knew their dog Brady, who died over the winter after being hit by a car, would be his guardian angel.
    During one of his last hospitalizations, a priest came by to see Evan but he was asleep so I spoke to the priest for a few minutes. After I told him a little bit about Evan including the fact that he had recently lived in Vail , I said what I wanted for Evan was for him not to fear death and to have a vision and belief that he was going to a better place. The last thing I expected to hear from Reverend Mahoney was his comment to me that, “skiing fresh tracks in the back bowls of Vail is as a good a vision of heaven as I can imagine”.
    Last March, a few weeks before Evan came back East, he purchased a video camera for his ski helmet. He put a few of these videos on You Tube. In one he is skiing alone. It is a beautiful day and you see the terrain rushing by as he skis through glades and bowls. Sometimes the tips of his skis, and occasionally his shadow can be seen. When you watch the video you are struck by its grace as Evan carves turns down wide powder filled bowls and courage as he skis full speed between narrowly spaced trees in the back bowl glades at Vail, something he loved to do. http://youtu.be/j1hQ5bjW-9M
    So today as we sit here and mourn the loss of a beautiful and kind son, boyfriend, grandson, nephew, cousin and friend, I am comforted by the image of Evan, with his unbreakable heart, skiing the back bowls of heaven with his dogs, Brady and Gus , happily running along on either side of him, tails and tongues wagging. It’s a beautiful day as he gracefully carves first tracks and then courageously skis full tilt straight through narrow glades filled with deep powder. And someday those who love him will be by his side as he guides us down through the untouched powder, smiling his beautiful smile.

    Homily : Reverend Maria DeCarvalho
    “Show up,
    Do the best you can,
    Don’t make it too much about yourself,
    Stay in the game”.

    • Tony, this brought me to my knees; perhaps the most beautiful eulogy I have ever read. Thank you so much for sharing and know what an impact your son made on me (and so many others). Seldom have I felt so humbled in the presence of a young person. The video and your vision of him skiing with his guardian angels are images I shall cherish, just as I cherish the fact that I was able to cross paths with your beautiful son.

      He did beat cancer.

      Linnea

  11. Hi Big Sister….So sorry to read about Evan’s passing. Can’t wait to see you in 12 days and give you a big hug!

    Love,
    John

  12. Linnea (and Tony),

    LIfe IS so unfair…so sorry to hear of Evan’ s passing. LInnea, I am relieved to hear you are feeling better. I hope we meet soon.

    Linnea (NY)

  13. Dear Tony,
    thank you for sharing this painful but beautiful part. My tears continued to fall, while reading the eulogy. But as I clicked on the link, and was allowed to follow Evans soft curves, a relief of freedom came over me – a sigh full of “yes”.
    As a daughter and lung cancer patient myself, I can only wish for my parents the same strength and insight in dealing with their future loss, as you are showing. As a mother, looking at my four-year old, I first only realize which a cruel, painful and impossible task that is.
    So not only Evan beat cancer, you did as well.

    Anja

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