Thursday, December 17, 2009

Enduring Love....

This is a story written by a very close friend of ours. The story was written for Runners World Magazine which for some reason chose not to publish it... Monica did a great job on it.. Thanks Moon!

Enduring Love

It is early morning in Manassas, Virginia. The sky to the east is just showing the first colors of purple and red. Mickey Johnson, 47, makes his way to the end of the driveway, ready to set off on a morning run. Today holds 6 miles, part of his marathon training regimen. He reaches the bottom of the driveway and looks down a small hill. It’s the hill his 3 children would ascend on their trip home from the bus stop. Justin and Daniela, his two older kids, would be ahead, bickering, laughing, their packs bouncing on their backs with the rhythm of their stops. Cody would be behind them. He was quiet, and air of calm around this normally frenetic child. Mick would wonder if it was the work going up the hill, the weight of the pack, or just the fatigue from a full day of school. Mickey smells the air. He closes his eyes and takes a deep breath trying to catch a familiar scent.

It’s August 13th, 2009 and 12 friends who have never met meet for time at a Forum Event. All of these runners post on the Masters Forum of the Runners World On-Line Discussion Boards. While they normally share daily workouts, training tips, and race results on line, this “FE” gives them the rare chance to gather and share a meal before a race. They all agree that the Masters Forum is a special place, that it fosters incredible friendship. They have a digital community of runners from different walks of life whose foundation for acquaintance are the common bricks of running, cemented by mortar of dedication and shared sacrifice. They tend to be over 40, but the Masters Forum attracts those younger than, those who are looking for the sweet, grounded advice of those who have been around the block or the track more than a few times. There is a sense not only of kinship, but that they have each others back: a DNF is met with words of encouragement, a PR is a group celebration. There are even non-running topics discussed and shared: a new job, a child’s graduation, a move to a new city.

The organizer of this group, Scott Reiss, lives in the events home state. The others have travelled from a confetti of locales - Indiana, Virginia, New York , Maryland,– and will run multiple legs and double digit miles in the ‘100 on 100 Heart of Vermont Relay’ that rolls through the Green mountains from the Trapp Family Lodge one hundred miles to Ludlow, VT.

The next day, race day, is forecasted to be warm and sunny. These newly minted friends eat, laugh, and share stories. They review details for the next day’s race, fret about the weather, terrain, clothing, and food. This is what runners do: they sweat the details as much as the miles. However - unlike other races - they are here not to chase a PR or win an age group. They are here to honor a child they have never met: Cody Johnson.

Cody Johnson was diagnosed with stage 4 neuroblastoma 3 days before his 2nd birthday. He was born on the first anniversary of the 9-11 terror attacks and grew to be a feisty, spirit-filled toddler. Neuroblastoma is an “orphan” cancer: it occurs almost exclusively in children under the age of 10 and as such doesn’t benefit from research done on cancers such as leukemia and lymphoma that strike both adult and child populations. The average age of a child diagnosed with Lymphoma is 17 months, so young the child can’t articulate their pain. Like Cody’s case, 70% are not diagnosed until the disease has spread.

Cody was admitted to Georgetown Hospital for 10 days of baseline testing. His radiology scans lit up, the cancer present in every part of his body. A round of high-dose chemo was ordered and required Cody to be in the Pediatric Intensive Care Unit (PICU) for 31 days where Mickey slept every night in a chair next to Cody’s bed. Cody suffered from the treatment: he vomited a pitcher full of blood from cancer-infected adenoids. He suffered fevers and side effects from the toxic chemicals. Surgery was required to remove the remains of lung and kidney tumors, as well as his adrenal gland and surrounding lymph nodes. The final step in his 4 month treatment – during which he rarely was home for more than 24 hours at a time – was a stem-cell transplant. The transplant had complications - Cody had a reaction to one of the transplant drugs. His lungs filled with blood and he suffered congestive heart failure and partial kidney failure. His oxygen intake dropped to 30%; doctors worked through the night to save him. A priest was called to the floor to be on stand by. His condition was minute-to- minute for 9 frightening days. Mickey and his wife, Diane, kept vigil over their fragile son, praying for a miracle, praying for their 2- year- old to endure and pull through. He survived those harrowing days and greeted the nurses treating him by throwing anything he could reach at them.

The 100 –on-100 was not the first time the RWOL masters had come together to support Cody. In April, Bill Allen – a member of the 2009 US World 24-Hour Run Team - put out a call to the Masters Forum and organized a team for the Virginia 24 hour Run for Cancer - 24 hour Ultra and Relay. Bill had been deeply moved by Cody’s struggle and wanted to support the Johnson family. He found the race and was committed to participating, despite it being a few short weeks before the World Championships in Italy. Ten ROWL Masters made the trek – from Pennsylvania, Delaware, Maryland, Mississippi, New Jersey, and Virginia – to run for Cody. Bill made a flag that each would carry.

One participant, Shannon McGinn, 33, drove from Rahway, NJ to run in Virginia. Diagnosed at 29 with breast cancer, she survived and took up the sport of running. This race is special because she is raising money to fight the illness that has so personally touched her. In doing so, she abandons her bib for the 113th Boston Marathon to be contested the Monday after this relay. It was to be her first Boston, but it matters little to her: she understands all too clearly the fight for life against this disease; Boston can wait.

Nine of the ten participants complete 50 miles during the 24-hour relay and each carry the “Cody’s Crew” flag. During the dark hours on the trail, Mickey thinks often of the pain his young boy endured; these miles become spiritual for him, an act of contrition, perhaps, that parents feel for not being able to spare their children from certain pain. Cody’s Beach Bound Crew of Pirates raises $1200 for Neuroblastoma research.

Cody’s first treatment caused agony beyond imagination. While he’d learned to walk before the disease struck, he needed to re-learn the skill – twice – due to muscle atrophy caused by the cancer treatments. When Cody finished his treatments, Mickey looked at his own physical health and found it wanting. He took up running and put his sights on running the Richmond Marathon in November, 2006. Race day was unseasonably warm and as he struggled with cramps and fatigue over the last half of the course, he thought of his son – his image on his t-shirt and the words “Cody is My Reason” – and the pain he had endured. He thought of the treatments that would cause Cody’s lips to blister and peel, the mucositis that resulted in the degeneration of the lining of Cody’s mouth. Drinking milk from a bottle felt like drinking shards of glass. He thought of Cody’s first words, and how they related to the hospital, the drugs, his treatments. Mickey knew that his own fatigue and cramps were nothing, that the discomfort was temporary. He knew when his pain would end, that whatever agony he was feeling was but a small slice of what Cody had. Cody had survived his first brush with cancer; Mickey would finish this race.

Race day in Vermont dawns cool but the sun will quickly heat up the course. Each team member will carry the Cody’s Crew flag during the relay. Eric Cheung of New York City is the lead-off runner for Team 1 of Cody’s Crew. He’d met Mickey at a Masters FE at the 2007 Philadelphia Marathon, and found him to be as ebullient and warm as the man on the boards. Mickey believed with all his heart that Cody was cured, but his son’s battle for health was a constant, the disease has a frighteningly high rate of recurrence. Eric could feel this weight on Mickey. “When the 100-on-100 teams were recruiting runners, I felt a strong urge to do something, anything to help.”

Somehow, this 6-year-old boy has infected these runners with his toughness and determination. During each of the 3 legs of this hundred mile relay, they’ll think often of Cody, this boy they know but never met. They feel a common mission, a common a purpose. None can put a finger on it; perhaps it is that Mickey could have been any of them, that Cody could have been any of their sons. Tobey Hobbes of Purdue, Indiana would later reflect “The emotional energy and sense of purpose from these other 11 people was so contagious that you couldn’t help feeling like we were all one big family.”

When Karen Faber, 42, of Bowie Maryland, signed up, she knew nothing about Cody or Cody’s Crew. She stumbled upon a thread in the RWOL Masters Forum looking for a runner to fill in for a participant who had withdrawn. “At the time I knew very little about Cody or Mickey or neuroblastoma. But I liked to run and I wanted to see Vermont.” During her preparations for the race she frequented the Masters forum more often. “I started learning more about Cody… I read about the 24 hour relay in Hampton, and I found out that there was this big, compassionate group of runners out there…”

It is 2 days before Thanksgiving, 2007. Cody is cranky, his belly is hurting. He’s a typical 5- year- old: he’s started kindergarten, he loves his teachers, he tests the rules. He gets tired and cranky at the end of the day but he loves getting on that bus with his siblings Justin and Daniela. Mickey and Diane take him to the doctor thinking he has nothing more than a virus. But the beast is back, Cody has relapsed: Scans show an enormous tumor on his liver. One of the top Neuroblastoma surgeons at Memorial Sloan Kettering declares the tumor inoperable. Mick and Diane refuse to surrender. They find a surgeon at Georgetown University hospital who will perform an 85% liver resection. Before the surgery, Cody goes through additional rounds of chemo to shrink the tumor. Santa visits the children’s Oncology unit at Georgetown University hospital. Mickey is there and uncertain how Cody will react; he has been in a foul mood all morning. Cody is angry; his world has been upended yet again. He’s had to withdraw from his beloved kindergarten. He has to have the toxic chemicals with their nausea and hair loss infused in his veins. He wants to be home with his family. He submits to the treatment but has tantrums in between: he is incensed at this intrusion in his life. Cody sees the bearded man in red and hesitantly approaches him, then wraps his arms around him and hugs him for nearly half a minute. A Washington Post reporter is on hand to capture the moment.

Elizabeth Scott, 44, a native New Yorker, has been an active fundraiser for cancer research for years. “You start feeling powerless and that there’s absolutely nothing you can do to stop the march of this beast.” She relishes the opportunity to raise money to combat the disease, and with good reason: it has claimed nearly the entire side of her father’s family: Her grandmother, uncle, and father all perished from colon cancer. Her sister has fought breast cancer. A cousin had lung cancer, another is fighting an aggressive brain tumor. “Running races for cancer research funding has given me a bit of peace, and a feeling of control over this disease.”

Rick Knuth from Fort Wayne, Indiana competes despite a nagging hip injury. A devout Catholic, he feels participating in the event is a spiritual call, to give something. “I have been blessed with three healthy daughters and just can’t imagine how difficult it must have been for Mickey and Diane during Cody’s illness. Nobody should have to go through that.” During the difficult parts of the day’s racing he falls back on traditional Catholic prayers, saying countless Hail Marys and Our Fathers.

Cody endures additional cycles of chemotherapy and radiation during that winter and spring. Cody never complains about going to the hospital, but he doesn’t always willingly submit to the treatments. He misses kindergarten, and is thrilled when he is able to attend his class’ Valentines Day party. He’s excited to be going back and when he arrives Cody had hugs for everyone: the secretaries, the school nurse, even the principal. He goes to his classroom and hugs both of his teachers. Back at the hospital, Cody is Jekyll and Hyde with the nurses, charming one minute, angry the next. Mickey worries at how Cody lashes out, at how angry his little boy can be. In hindsight he realizes Cody was fighting back the only way he knew how. He has such spirit – he enters a room and takes it over with his smile, his laugh, his devilish charm.

The day goes from cool to very warm with temperatures reaching the 90’s. The course is very hilly and there are stretches where there is no relief from the sun. The relay runners feel the fatigue and discomfort from the course and heat. They carry Cody’s flag and all think of him during the tough stretches. Elizabeth is suffering from nausea, as is Mickey. Despite his second leg of the relay being relatively flat, the lack of shade is crippling. “Although it was relatively flat the heat just sucked the life right out of me.” The thought of Cody and all he had gone through kept me from walking during this leg. After he finishes this part of the relay he finds an ice cold stream and jumps in. He thinks about Cody’s favorite place, the beach.

Over the summer, the Johnson’s take Cody on a trip to Ocean City, Maryland,. The beach is Cody’s favorite place and it is a wonderful chance to be together without the intrusion of hospitals and doctors. The trip is a respite for the marathon treatments to come. In September, the Johnson’s take Cody to Memorial Sloan Kettering Hospital in NYC to undergo 3F8 antibody treatments. These treatments are designed to attack any remaining cancer cells in Cody’s body and are the best protocol available to fight neuroblastoma. It is a painful process, each infusion causing more and more pain, and morphine rescues are often needed during the 20 minute treatments. Cody is in MSK for 2 weeks and passes his 6th birthday in the hospital. The doctors are hopeful: the results of the tests show Cody is tolerating the treatments well. He returns to MSK in October, and again in November to undergo additional cycles. It has been a year since his cancer has returned and they feel a corner has been turned, that Cody is getting better.

While the afternoon conditions are tough, Cody’s Crew is smiling: they are having so much fun. They joke about not making unscheduled stops at the Ben and Jerry’s ice cream factory that they will pass. They crew for each other, provide water for their runners on the course. Other runners question Cody’s Crew about the flag, and they are happy to spread the word, to share the mission. Later in the day, they are cheered along the course by other participants who have heard of their cause. They feel like running evangelists, spreading the gospel of Cody.

The Johnson’s hope is short-lived. It is December, 2008 and they are looking forward to spending the holidays together as a family. Just before Christmas, Mickey takes Cody to Georgetown University hospital for some tests. The whites of Cody’s eyes have developed some yellowing and the tests indicate increased bilirubin: something is going on with Cody’s liver. The doctors conclude that it is inflamed due to a virus, and work to get it stabilized. Just after Christmas, Cody begins to limp. He’d hurt his leg the last time he had been to New York City and this same leg is giving him trouble. Mickey and Diane pray it is related to the injury and the doctor thinks it may very well be. However, on December 30, 2008, a scan shows the presence of a bone lesion: the beast has returned.

The sun sets on the runners in Vermont. They have each started the third and final leg of the relay; they are closing in on the finish line. Teams 1 and 2 of Cody’s Crew run the third leg together. Their legs are sore and tired from the miles. Their feet hurt and the heat of the day has sapped much of their energy but the cooling air and the colors of dusk lift their spirits. They wear reflective vests, head lamps, reflective arm and leg bands. They see the faintly glowing figures of other runners. It is a spiritual, - almost holy - time for them.

Time. Runners seem to be centered on it, measuring miles and kilometers run in hours, minutes, seconds. Marathoners trying to qualify for Boston know all too well the how long one second can be the difference between standing on the starting line and sitting at home on Patriots day. But this evening in Vermont, the time it takes to run the course has ceased to have meaning. While these runners would normally want to speed through the miles as fast as possible – minimizing time - they instead savor it on this night. They remember how Cody loved his older brother Justin, and how his one wish was to be ten years old like him. That’s all Cody wanted, just a little more time. They have a new clarity of just how precious it is; Cody’s journey has given them that.

The presence of the cancer so soon after the 3F8 treatments is not good news. More lesions are found Cody is scheduled for chemo and radiation to try and knock it out fast. However, the chemo can’t be administered until his liver resumes normal functioning. The doctors wait as long as possible, and then have to settle on half doses of chemo to prevent further damaging his liver. They are balancing the delicate scales of time: they need time for his liver to heal, but every day they wait is a day the cancer grows. Cody starts treatment at the end of January and is home in time to watch his beloved Pittsburgh Steelers play in the Super Bowl. Photos of Cody show him smiling wide, excited. But one can’t help but notice his yellowed skin. It’s incongruous, to see the beautiful smile on this evidently ill child. His liver numbers continue to deteriorate and the doctors have to suspend the chemo.

Bill Barnes of Boston runs the final stretch of the relay with Mickey. They will carry the Cody’s Crew flags over the finish line. It is dark out and they chat amiably about the relay, their previous runs that day, how they felt. The air is so cool they can see their breath. They get very quiet. At that moment, Bill experiences his first ‘runners high’. “It was extremely dark and our senses of sound, scent, and touch took over from our sense of sight. We ran in silence except for the perfectly cadenced footsteps and breaths… We were, simply, two runners doing what we love to do.”

2 weeks later Cody’s stomach begins to hurt. When the Johnsons call the doctor, she tells them to come in the next day. This gives them pause: why wait, why not take him in now? She tells them gently that it is most likely the cancer, that it has spread. Scans reveal cancer covering 50% of Cody’s lungs. There are new spots on his liver in addition to the lesions on his leg; the progression of the disease is frighteningly fast. They cease all treatment. Mickey and Diane go into ‘Memory Making Overdrive’. They quickly plan a final trip to Florida, to get Cody back to his beloved beach. The trip is hard, Cody is ill and irritable. His skin is deeply yellow and people stare at him. He is quiet and tired during most of the time there; the cancer is wearing him down. They play miniature golf and he sits after each shot. He is only well enough to go to the beach one afternoon. They return home on March 1st and take Cody to Georgetown University Hospital for an evaluation. The cancer is rapidly advancing in his lungs and liver. Two weeks earlier Cody’s doctor had thought he might have 3 months left. She now says he has a week, perhaps two. His breathing is becoming more labored and he is in continual pain. They take Cody home with a morphine pump and oxygen. He is sleeping when Mickey and Diane have the hardest talk imaginable with Justin and Daniela: they have to tell them their little brother is dying.

Mickey would reflect on this time, this last leg of the relay. “There is nothing like running at night, along a lake, in the pitch dark with a friend and just listening to the sound of your shoes hitting the road.” He and Bill approach the finish line and see the cluster of the other ten members of Cody’s Crew waiting for them. “I can’t explain what I felt or what I remember at that moment. It was all just a blur. I remember all of the Cody’s Crew members hugging each other and the tears were flowing. It was all I had hoped it would be. I know my son was watching me and was very proud of all of us. I felt closer to Cody at that moment than I have since the day we lost him.” They crossed the finish line together, each of them holding their “Cody’s Crew” flag high.

Every runner at one time or another questions his or her reason for being out there, for running mile after mile without regard to weather, fatigue, discomfort. But what makes runners go out of their way to run for a child they’ve never met? It makes you wonder about the nature of friendship, particularly of these friendships. Are they friends because of the running, is the sport the cement that holds these people together? Or is it something more, that the running and the Masters forum were the springboard for all of this? They started out with a common denominator of running, but at the end it wasn’t about the running; it was about Cody, he was their reason.

Kerry Lambert, also of Vermont later reflects on the weekend. “Cody deserves more…he deserves a legacy, a positive legacy. If our run and this race can raise funds and awareness that get us even a smidgeon closer to helping another child with this horrid disease, then sign me up. Make me a shirt, give me the flag, point me toward the race. I’ll run because I can…and because Cody can’t.”

Karen Faber – who joined the relay so she could see Vermont – left knowing she had been there for something much more meaningful than a weekend sightseeing trip. “I get a little choked up when I think about the weekend… I realized that I wasn’t just there to run a few miles in Vermont, I was there for something much bigger. I was there for Cody. I was there for an amazing kid that even after his death is doing great things through his parents and his dad’s running.”

Despite his tremendous loss, Mickey is overwhelmed by the generosity of both spirit and body of these people. “Runners are not afraid to work very hard for something they believe in. Where many people would just write a check from their check book to help, our team members did that plus wrote checks with their sweat, tears and pain.” He is humbled by their gesture. He intends to continue his fight and while his intention was to raise funds for a cure for neuroblastoma, he also finds he has collected willing volunteers who spread his mission a step, a block, a mile at a time. They are, after all, runners.

Mickey loved the smell of Cody’s hair, loved the way it felt on his face when Cody would sit on his lap. He feels Cody with him, in his aching heart. He misses him so much. Mickey opens his eyes. He takes one last look down the hill; Justin and Daniela will be headed down to the bus later that morning. He turns and starts out on his morning run. Cody is his reason.

Cody Johnson died on March 6th, 2009. He was 6 years old.

Donations to find a cure Neuroblastoma may be made to www.codys-crew.org

5 comments:

Cameron said...

What an amazingly beautiful article. It was hard to read through my tears. I sure wish it had been published. Such a shame that it wasn't...what a beautiful tribute and honor to you all! Many prayers continue and much love to all of your family.

Mary

Anonymous said...

Thinking of you guys this season very often! Nothing can take the place of all the kids together for Christmas, my prayers are with you to be able to enjoy some of that time with Justin and Daniela.
That was a great article! They do keep these things on record for some time, its possible they may publish at a later time.
Take care and be safe!
Kim McNeal

Sean and Lisa said...

Beautiful article with a powerful message of community and family.
So sorry for your loss of your precious son. My prayers are with you and your family as you continue to press on despite the incredible loss and heartbreak.

Cody's Crew is an awesome legacy to a special little boy.

Aggie said...

My heart continues to ache for all of you and you continue to be in my prayers every day. Praying that the Lord will fill you with the comfort and peace that only he can.

The article was beautiful. Cody continues to touch the lives of so many people.

Agnes Lawler

runrgrl2007 said...

It is a shame that Runners World didn't feel this article worthy of their publication. This article is a testament to the heart of a runner and how something so small as putting one foot in front of the other will bring people together. Together for a reason so important to so many that we will never know or hear about. Thank you for sharing your story and your Cody with us! God Bless you and your family!