The Sunday Series (63), with Mark Brodinsky

You heed the call, especially for someone you love,  someone who shares your heart, someone who shares your blood.  When it’s time to step up and say “I will”, family comes first. By demonstrating your courage and sharing your story you will inspire others and give them hope.

After all, everyone has a story.

I am Mark Brodinsky and this is the Sunday Series.

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The Sunday Series (63): Superheroes

When you’ve been fighting for it all your life,
you’ve been struggling to make things right,
it’s how a superhero learns to fly.

– lyrics from Superheroes, by The Script

It is a moment, Day Zero, that Clayton and Graham Cowan will remember for the rest of their lives. It is a day that will cement the bond these boys have as brothers, because one will give unselfishly to the other, and by doing so, give him life. It is sacrifice, it is love, it is forever.

It was back in 2005, when Clayton was only 2-1/2 years old that his journey truly began. Gravely ill, the toddler lay in a hospital bed with an unstoppable infection in his lungs. The doctors just informed his mother and father, Marty and John Cowan, there was nothing more they could do. “It was like having an out-of-body experience” says Marty. “They sent a priest to talk to us, asked where we went to church, it’s something you never want to hear about your kid. Is he dying? I didn’t know and I didn’t want to hear. I was holding Graham, my other son, my 5-month-old baby in my arms, and the doctors are telling us they couldn’t fix Clayton.”

For two weeks the doctors at this local Baltimore hospital had been trying to find a way to “fix” Clayton, but nothing was working. When they told the Cowan family there was nothing more they could do a decision was made to put the young boy in an ambulance and transfer him to Johns Hopkins Children Center, Clayton’s last hope.

Thankfully for Clayton, it was the right decision. Within two days of arriving at Hopkins, there was a diagnosis, chronic granulomatous disease, a disorder which causes the immune system to malfunction, unable to protect the body from bacteria and fungi. An infection can be deadly. Clayton went into surgery and a picc line was inserted. And as Marty describes it, “the wonderful people who work in the labs there, who don’t get much credit, finally paired up medicine that fought this infection and it worked. They did it and it was a miracle.”

 

At the tender age of two, and in a battle for survival, young Clayton was getting a new lease on life, albeit a life of continual medications and extra safety precautions. For the past ten years he has been on antibiotics, anti-fungal medicine, and an immune-boosting injection, interferon gamma, to make sure his body can ward off bacteria and infection. Clayton has been fortunate, the disease has not stopped him from living the pretty full life any young boy desires, he just has to watch his step and stay away from mold and bacteria, two things which could potentially cause serious infection, or even be a killer.

“It can be scary”, says Marty. “Clayton can’t go into any fresh water situations, can’t go in the ocean or rivers because of the risk of bacteria. He has to stay away from things like mulch, which has mold spores and could potentially be deadly for him. On the elevator if someone has a runny nose, or is sneezing, we don’t know if that person has a bacterial infection, and I just want to cover Clayton’s mouth and shelter him.”  Even a fun time out with the family can bring hazards. “Clayton went on a ride at an amusement park”, says Marty, “and we realized after he was on the ride, there was mold on it (from the rain and the elements), and we couldn’t get him off, I almost had a heart attack.”

Outside of the inherent dangers however, Clayton, now 12-years-old, lives a normal existence. He loves video games and playing baseball. And most recently in this game of life – Clayton and his family have been offered the chance to hit a home run – though that chance is never guaranteed, Clayton has decided to step up to the plate and take a mighty swing. A bone marrow transplant.

All the hurt, all the lies,
All the tears that they cry.
When the moment is just right
you see fire in their eyes.

Marty says, “once we found out Clayton was a candidate for a bone marrow transplant and it could offer a cure, we had to consider it because what does it mean for him if we don’t do it?  If not he will have to be on strong medications for years and years to come and what will this do to his organs? Plus, there is no guarantee the medications will stop him from getting another life-threatening infection. The decision is not an easy one to make. John and I went to several meetings at Hopkins and second opinions at the National Institute of Health. We told Clayton about the potential for a cure and he met with the doctors at Hopkins. We asked him what he would like to do and he thought we should go for it. It’s his body, he is 12-1/2-years-old and he didn’t really think about it too long, he said ‘yes, I want to do this’ and we said we will support you.”

Cause he’s stronger than you know,
a heart of steel starts to grow.

The only question then, who would be a match for Clayton.  A high-resolution blood test gave the Cowan family their answer. 10-year-old Graham is a solid match for his older brother. The transplant is scheduled for June 2nd. Clayton will be admitted on May 19th in preparation for the transplant, what the docs refer to as  “day negative-14”. Graham will have a marrow harvesting procedure the day before the transplant, negative day-1. Transplant day is day zero. Then the wait begins, plus-1, plus-2, etc to make sure Clayton’s body accepts and starts generating its own marrow.

Marty plans to live with her son at the hospital during the week, John will take the weekends, until Clayton can be released  hopefully at the end of July. And Marty won’t just be living at Hopkins, she will physically and mentally be improving the lives of others sharing the journey.

Yoga is one of the loves of Marty’s life and she is in the process of becoming a certified Yoga instructor, through Charm City Yoga in Baltimore. The entire pediatric oncology floor at Johns Hopkins Children’s Center will benefit from Marty’s presence there because, through Yoga, she is personally giving back to the caregivers of these patients.  She has been cleared by Hopkins to teach yoga to the parents and caregivers on the oncology floor, and anyone else who would like to participate, as a way for them to step away from care-giving and stress and focus on some stretching and a respite to tap into their mind, body and spirit.

“I am hopeful that this will carry on and help the parents to be stronger and get them through the situation a little easier”, says Marty. That is really my goal and my mission. Even after Clayton is discharged I plan on going back there to keep the program going.”

Marty has created a benefit for the Johns Hopkins Children Center, a fun-run on April 26th, as a way to raise money to help pay for the yoga supplies: mats, (from lulu lemon, which seem to be the easiest to clean),  blocks and straps. Equipment she will leave behind after Clayton is discharged and will be used again and again when Marty comes back to teach.

Once Clayton goes home he will still return to Hopkins for months for monitoring and maintenance. He will be entering the 7th grade next fall, but he won’t physically be at school until after the holiday season. Instead the state has arranged for a tutor to come to the Cowan’s home through the fall and Clayton will re-enter school in January of 2016.

In the meantime, Marty is reflecting on the lessons she is learning on this journey. “I think the most important thing I’ve learned is having compassion for people that you don’t know”, she says. “Because you don’t know where they’ve been and you don’t know what they have been through. All of our kids are special, this is just part of our journey and our story. There are kids right now going through transplants who are sick and the big question mark is what’s going to happen to them and how do we fix them. It is stressful for any family and I think everyone deserves a break and we should do all we can to pay it forward.”

It’s all about forward progress. It’s what we all want out of life and it creates a sense of urgency when someone is sick, especially a child. The very fabric of our lives become bound up in their well-being, our future happiness dependent on theirs. When you create life it becomes part of your mission to see it through, to guard and protect, to nurture so that that life gets the best shot it  can to be fulfilled. In just about two months time Clayton will receive that gift, that “best shot” from his brother Graham, who will sacrifice a piece of his own body and trade it for a chance for Clayton to live out a life without the risk of fatal infection, a life of freedom from hospitals, doctors and weekly injections.

He’s got a beast in his belly
that’s so hard to control.
Cause he’s taken too much hits,
taking blow by blow,
now light a match, stand back, watch them explode.

Heroes. Sometimes the word is used a bit too liberally, in this case it seems to fit. Clayton and Graham Cowan – forming an eternal bond which will be reinforced by what is to come. Blood brothers, and a life transformed by the sacrifice of another. Though neither boy has yet to reach his teen years, the early part of their lives and their journey will serve as a constant reminder of what life is all about, living up to their mother’s own vision and lessons learned about compassion. “Joy of the heart is good medicine”, says Marty.

Give back, love, care and watch the world and the people around you be transformed.

When you’ve been fighting for it all your life,
you’ve been struggling to make things right,
it’s how a superhero learns to fly.

(Marty and Clayton recently did an interview on Mix 106.5 for the Johns Hopkins Children’s Center. Do yourself a favor, be inspired, give it a listen and learn how superheroes can really fly.)

Until next time, thanks for taking the time.
Mark

Mark Brodinsky, Author, Writer, Blogger, Speaker, Emmy-Award Winner, Financial Services

Author: It Takes 2. Surviving Breast Cancer: A Spouses’s Story
(http://www.spouses-story.com/)

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