A Tribute to Craig Dion

Craig DionBy Gail Dion

Craig was an incredible soul….an old soul from day one. He always seemed wise beyond his years. He was loving, giving, funny, entertaining, and very deep, a real "thinker." Once Craig made his mind up about something, that was it. His sheer determination and drive served him well throughout his life.

Craig was a talented musician and songwriter; he was very bright. He attended Coastal Carolina University for two years and then graduated with honors from UNH Thompson School of Business. He decided that 9-5 wasn’t really for him and moved to Hawaii, all by himself, without knowing a soul because he felt he needed to experience more and it was time for a change. He had wanderlust. He spent the next year in Hawaii, camped out in someone’s back yard where he learned to surf and spearfish, hiked, went sky diving and made some incredible friendships that he thought would enrich his life for years to come.

“Every day we take our chances to wash up like waves or live out our passions."
- Craig in the song “Sunset
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Soon Craig was training to fulfill his dream of hiking the Appalacian Trail. He returned from a winter hike in the White Mountains with a slightly swollen eye. We really thought little of it. After a couple of days, as the eye looked more irritated, we went to see his Doctor. Hiking before diagnosisThey put him on steroids and antibiotics and thought he might have scratched his eye while hiking...a bug bite perhaps. After all Craig was a healthy, active 26 year old with no prior illness. We were so innocent; who would think it could be anything different?

My husband and I left on a trip with the promise from Craig that if his eye did not get better he would call his doctor. Craig’s eye did not improve with the medication so a week later he went back to his doctor. This time they referred Craig to an eye doctor whom in turn referred him to the emergency room where they ran a few tests. Then they referred Craig to Mass Eye and Ear in Boston. They wanted to take Craig by ambulance, but he insisted on driving himself in the middle of a snowstorm and in terrible pain. While at Mass Eye and Ear, they ran many tests on Craig and told him they would be in touch. While waiting in DC for our connecting flight, we received a call from Corey, Craig’s older brother, with the news. To think Craig had to go through all of this alone still makes me sick to my stomach.

Diagnosis

Winter HikeCraig’s diagnosis came quickly and without warning. Within a few days Craig had a biopsy done and was diagnosed with rhabdomyosarcoma. We were referred to a wonderful doctor at Mass General, and he arranged for Craig to meet with the head of radiology that same day. A PET scan was ordered…Craig was to have the PET scan and begin radiation the next day. To make a very long story short, Craig had a reaction to radiation and was admitted to the hospital that night. The following day (Saturday, March 13th, to be exact) his doctor came in and shared the devastating news with us. Craig’s cancer had already spread to his bone marrow. Craig had two weeks to live without treatment.

What…how could this be? There had to be a mistake - Craig was fine up until two weeks ago. Our minds were racing and went numb at the same time. I remember rubbing Craig’s leg because at the moment that was all I knew to do. They wanted to perform other tests on Craig that day, but all he wanted to do was go home. His doctor discharged him, and we were to return on Monday for his next radiation treatment. Chemo was to start that Wednesday.

The following day we had a lot of Craig’s friends and family over...the gathering kind of turned into a celebration of Craig. Gathering Friends and FamilyHe played his music for everyone, and we sat around and shared stories and food, and it was just a wonderful day. For a brief moment in the middle of all of this Craig thought he did not want treatment. But after a day he said, "I have decided that I do want treatment and if I ever ask you to stop, make sure I get it one more time." I remember Craig caught me crying at one point and he said, “Mom, this is NOT a pity party.” So that is how we continued. Craig set the tone for us all, and if he could be brave and strong, then so could we.

The true irony of this is that when Craig was diagnosed, he was two weeks away from leaving on his hike.  So along with the devastation, shock and horror of Craig’s diagnosis came a small bit of gratitude. Had he left on his hike, he never would have returned and we would have never known what happened to him. Even though watching what Craig was going through was very painful, we were with him every step of the way of this journey. He wasn’t hiking alone, and that is worth more than I can ever explain. So instead of leaving on his hike, Craig spent the next couple of weeks in the hospital. In fact, we were told that he was very lucky to have made it out at all. 

“I believe, sincerely that we’re more than blood and bones.
Your two hands can move mountains but never touch a soul."
- Craig in the song “Something in the Dream
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Treatment

Craig and his momOff we went to Boston everyday for seven weeks of radiation and once a week for chemo. Craig soon became the “king” of the radiation and chemo departments. He made quick friends with everyone he met, the doctors, nurses, and radiation techs...they all seemed to really enjoy Craig, and he enjoyed them. There are so many funny stories, far too many to share here, but trust me, it was always an adventure when you were around Craig. When he would go in for radiation, they would play his favorite music, and one of the techs used to bake for Craig frequently. They both came and visited Craig often in the hospital and later in hospice. We used to joke that we expected to see a picture of Craig hanging in the halls of Mass General.

“I’ve seen the sweetest things nobody ever has to know,
I see the stars as runway markers, guiding our souls."
- Craig in the song “The Tide
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I was very fortunate to be able to be out of work on family medical leave. Fortunately I had enough sick time to get me through. This allowed me the gift of being able to spend a lot of time with Craig (I think at times he thought it was a little too much time).

I remember, in the midst of everything, Craig said, "This is the most beautiful time of my life," and that is exactly the way he approached this unpredictable journey. He wanted to grow and learn as much as he could. He also experienced all the love that was flowing into his life and, instead of being down, seemed to have so much gratitude and enlightenment. Craig had a fairly good summer health wise. He was able to camp, fish, kayak, attend concerts, and took a couple of road trips. He was determined to continue to live life to the fullest.

I found something in Craig’s dresser drawer that really sums up the way Craig looked at his situation. It's a true tribute to the strength and gratitude he still managed to have. They are just a few lines written on a piece of hotel stationary from when he visited Canada that June: "The powers that be may take my sight…I don’t need vision to hear. They may take my feet…they are rendered useless because I can still feel the bass of a kickdrum beating in my chest. Leave me a finger so I may pluck a one note song."

Craig and his familyAlong the way, Craig taught us so much about living. Over the course of nine months he was hospitalized many, many times, and the pain he endured is beyond comprehension. He never lost hope…he never allowed this monster to change the person he was. His strength and courage continues to amaze me to this day. Craig lived with purpose…and made every minute of his life count.

In August, Craig received his last chemo treatment. It just wasn’t working anymore and it took so much out of him. Had there been another kind to try, he would have happily done so. He so wanted to be part of an experimental trial...he was hoping something would come along that he could participate it. It just wasn’t meant to be. There were no other options available to Craig.

The Last Earthly Adventure

In RomaniaWhile Craig was receiving his last treatment he shared with us his latest plan. In September, he was going to fly to Romania to meet with a friend he had met while living in Hawaii….he wanted to experience things while he still could. I remember discussing this with Craig and his doctor. Surely the doctor would agree with me that this would not be a good idea? After all, Craig weighed under 100 lbs at this time. He wasn’t eating much; his hips and back had started to hurt him so his gait was shaky at best. He was in a lot of pain and on a lot of medication to relieve the pain. His doctor looked at me and rather sternly said, "If this is what he wants to do then he has to do it." I know I was being selfish. I just wanted to keep him here with me for as long as I possibly could. The thought of him flying that far, once again all alone, to an unknown place in the condition he was in absolutely terrified me. Craig’s mind was made up, so off he went. I remember dropping him off at the airport...looking at this brave, skinny, beautiful, lovely, boy, about to set off on his last earthly adventure, and I knew I had to let him go.

“You can find my mind on a steel freight train, 'cause there’s something in the waves that keep pushing me away.
You can find my heart on a mountain range, 'cause there’s something in the stars calling me by my name.
Possibly, I agree we’re just pollen on the pond.
Each speck of sand in the solar system has it’s own role.
Internally I agree that the wheels keep moving on..a wiser man forgets the plan and goes far beyond.
You can find my eyes on a sweet lady, 'cause there's something in love telling me to stay.
You can find my soul on a shimmering lake, 'cause there’s something in the dream, keeping me awake.”
- Craig in the song “Something in the Dream
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In GreeceOff he went, and Craig’s determination got him through once again (thank goodness he didn’t listen to his mother). He flew to Romania, saw some incredible places and met some incredible people. From there, they took a very long bus ride to Athens, Greece, and then off they went to tour the Greek Islands. Craig snorkeled, rode motorbikes, toured various spots, and I think, in a strange way, was able to feel normal again. He grabbed every opportunity he could. 

When Craig returned, we had a few weeks before everything started to crash. It started with stomach problems, and then we found out he had growths on the base of his spine. My Craig was just declining at such a heart-wrenching pace. I still don’t know how he handled things the way he did.

Leaving the Hospital

In late October we ended up back in the hospital, where it became very clear that there was nothing more that could be done for Craig. He kept trying; he continued to think that with a little more time they could find a way to help him. He was such a fighter…I think this was the only time in his short life that his determination and will let him down. He could not win this horrendous fight...it was too big, even for Craig.

Bittersweet, I will never forget it...Not long before we left the hospital for the last time, it was time to wheel Craig down to radiation. As we walked through the hallway, every doctor, nurse, nurse's assistant, etc., lined the hallway and sang “Moon River” to Craig. It is a moment we will never forget...it still shakes me to my soul. The kindness, love and compassion that we were shown by everyone throughout this journey is truly a gift.

“I feel the pain of everyone, my arms unfold, I will carry you to a safe place, I’m taking you home.”
- Craig in the song “The Tide
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Hospice

Hospice...I don’t know what we would have done without them. There is a beautiful hospice house just twenty minutes from our home. I will never forget Craig and my ride in the ambulance to hospice from Boston to Merrimack, New Hampshire. Craig had his IPOD, and as I sat next to him in the back he gave me one of his ear buds. He put the other in his ear and we listened to music together all the way to Merrimack. The first song he chose was Trapeze Swinger by Iron and Wine. "Please, remember me, happily, by the rosebush laughing." It was another magical moment that I will never forget. I was fortunate enough to keep piling all of these special moments up...I think they will sustain me for a long, long time.

They made us all as comfortable as anyone could be in this situation. I remember walking with Craig through this beautiful "home" and Craig said, "Mom, I just feel like I am here forty years too soon," and I replied, "You are baby."

Sunset There were many, many beautiful moments while we were in hospice...Actually, I can say that there were many, many, beautiful moments throughout this journey. One of us spent every moment, day and night with Craig; we never had to leave him. He had lots of company and continued to work on his music for as long as he could.

The day before Thanksgiving, Craig’s friend Matt stopped in to see him. We all sat around and talked…Matt brought along a poem that he wanted to read to Craig. The name of the poem is "Ojibwa Prayer." It is a beautiful poem, part of it goes, "Let me walk in beauty, and make my eyes ever behold the red and purple sunsets. Make me ever ready to come before you with clean hands and a straight eye. So as life fades away as a fading sunset, My spirit may come to you without shame." Craig asked Matt to read that poem at his funeral (which he did, beautifully).

The next day, we had our best Thanksgiving ever in hospice (as crazy as that sounds). My niece cooked and provided the food. Craig woke up at around 2:00 PM and seemed to eat for hours. The sun was shining. It was a beautiful day, and we had all we needed at that very moment: each other. After dinner, Craig sat in his wheelchair and shared his loving thoughts with each of us individually, together. It was too sweet to put into words…was one of the most powerful moments of our lives.

As days went on, Craig became increasingly weak and in more pain, and he knew time was running short.  He said "I know they are going to find a cure for this disease...I am just here too early." I remember so many things, so clearly, things we used to take for granted. I remember the way the sun would shine through the windows in the morning, how nice, warm and inviting it felt in his room, the sound of Craig’s laugh, his sparkling eyes, the sound of him strumming his guitar and banjo. Craig used to love Dunkin Donuts, and each day his dad would bring him a small black coffee and a chocolate frosted donut, right up until the end. We knew he wouldn’t touch either, but it somehow made us all feel better, including Craig, to know that he was still included in our daily rituals.

“I remember he smiled on the day he was born, I remember he smiled then he was gone.”
- Craig in the song “Sunset
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Love is the compass that guides us all.

These beautiful words from Craig's song, "St. Helena," are inscribed on his headstone.

We lost Craig on December 6, 2010, at 3:45 p.m. at the age of 27. It happened as we all knew it would, just the way Craig wanted it to. It was just the four of us. His brother, dad and I were right there with him, hanging on to every last minute we had together. It was the four of us, the way it should have been for many more years to come.

Craig's HaloWe laid Craig to rest on a gray, cold, windy Friday...December 10th. It was time for us to leave the cemetery when all of a sudden, out of the grayness of day, came the sun, with a halo around it. Absolutely beautiful, everyone was pointing to the sky in awe. I know it was Craig’s way of making it easier for us to leave him.  It will forever be known as "Craig's Halo."

Craig continues to be our strength...our light, our inspiration, and the missing treasure in our lives. We were so blessed to have had him in our lives and just wish he could have stayed with us another 60 years. But that is the selfish wish of his mom, his family. I am sure that Craig is in a place that knows no pain, only love, light, happiness and beautiful, vivid colors. After everything he went through that is such a comfort for us to know. With Craig’s hand on our backs we will go on and try to make the best of each new day because Craig would expect nothing less from us. He expected nothing less of himself.

“The tide will go out, take away our crimes, the tide will roll back in, give us brand new minds. Then the moon will come out, to show us that we’re crying, and the sun will appear yet again to let us see with brand new eyes.”
- Craig in the song “The Tide
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The sadness of a million tomorrows will never replace the beauty of all the yesterdays we shared with you.
Rest in peace, sweet Craig...We will love you always and forever.

Donate in Craig's Memory

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A cure has to be found…too many of our children and loved ones are being taken away from us far too soon by this monster we call cancer. At least 97% of your donations in honor of Craig will be used for peer-reviewed sarcoma research. We hope that this research will better the lives of countless people who face this disease both now and in the future.

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Jennifer Dube Roop 06/12/2012 08:48 pm
Gail, this is beautiful tribute to Craig. The Craig I knew, and often think of, is the young, blonde haired, smiling neighborhood boy. We would stay out past sunset on summer nights and play flashlight tag and look for frogs with the other neighborhood kids. Craig once took me to a pond and taught me how to fish. The years were short, as is all childhood. Although the time we spend together was brief, I find I think of Craig and his family often. Craig's parents went to high school with my parents. Craig and I are the same age. It makes me think, "this could have been me"... Now that I am a mother, I find myself even more touched by Craig's story. I think of my daughter, and I cherish her. I love her a little more, make sure I am taking time to be present and fully committed to the moment we are having together. I feel the ache in my heart of what it would mean to lose a child. I feel sadness for Craig, for not having the opportunity to experience having a child and introducing someone to the world. But most importantly, I take time to appreciate each day and see the beauty in the little things, in Craig's honor. Gail, I want you to know Craig changed every life he touched. We are all better just for having the opportunity of knowing him.
Laurie Saunders 02/12/2012 12:35 pm
Gail, this is so incredibly beautiful. I see now where Craig got his talent for writing. The things you wrote, and so much that I hadn't heard through Tammie, gave me goosebumps and brought me to tears. The "Moon River" and your and Craig's conversation of him feeling he was there too early and you saying 40 years too early; I just can't imagine. Thank you for sharing even more of Craig. Whenever I think of him, I think that was one helluva young man who did a whole lot of living during his time here. He was amazing. I will never forget the halo at the cemetary, there's no doubt that was Craig trying to making things a little easier for those he left behind. You, Ray and Corey are always in my thoughts. Thank you again for sharing Craig, I love you Gail. And I pray there is a cure for this horrible disease soon.
Jessica Coffin 14/11/2012 06:12 pm
Gail,
This was an absolute amazing tribute to Craig. It was a beautiful story and I honestly feel this will help so many others who are battling terrible illnesses. I appreciate you sharing with us your journey with him.
Matt Sullivan 13/11/2012 07:57 am
Gail,

You have done a magnificent job in writing this. I feel like this should be printed as a guidebook for those that know him. I always love reading about him. I'm on a train to Boston right now (6:30AM) and I'm just squrtin tears out of the sides of my eyes next to hundreds of commuters. Ha, if only they knew Craig and knew what I was reading. No shame is felt in the tears I shed for him.
JoAnne 12/11/2012 11:03 pm
This is the most touching tribute that I've ever read. Craig is still inspiring people as he lives on in you and your family's spirit. I am friends with Cathy B. and the stories she has shared with me prove what a special individual Craig was. Your strength in writing this and sharing Craig's story is amazing! Bless you and your family.