As a parent you only want the best for your child, for them to be healthy, successful, to flourish, or in rare cases, to simply survive.
The Cowan family knows this all too well and today their story continues.
I am Mark Brodinsky and this is The Sunday Series.
The Sunday Series (74): Clayton’s Comeback
“It was so unbelievable to watch part of one of my children go into the other.”
For Marty Cowan this miracle happened on June 2nd, Day Zero, in her son Clayton’s fight to be healthy and live as close to a normal life as possible. It was the day part of his brother Graham slowly became part of Clayton’s own human existence, the day of the bone marrow transplant – brother saving brother – a lifelong bond.
At 2-1/2 years of age Clayton was diagnosed with chronic granulomatous disease, a disorder which causes the immune system to malfunction, unable to protect the body from bacteria and fungi. For the past ten years Clayton has been on a host of medications, all designed to ward off the chance of any infection, an infection which can be deadly.
That’s the short explanation, the background on all of this is The Sunday Series 63: Superheroes (https://markbrodinsky.com/the-sunday-series-63-with-mark-brodinsky/)
Today the journey continues.
Fortunately for Clayton, his younger brother Graham was a match for a bone marrow transplant. The day of the dramatic transformation, Day Zero, the day Graham gave up part of his marrow to essentially save his brother’s life, is now in the rear-view mirror. Two days after the procedure, Graham was back in the flow, playing baseball and attending a slumber party. But sleep was about to become a luxury for his mom Marty, because his brother Clayton was on the ride of his life, with his mom by his side in the hospital room, day after day after day.
Not long after the transplant, Clayton’s body which had already been compromised with chemotherapy prior to surgery and of course still affected by his rare disease, was unable to battle back against an unwelcome visitor – pneumonia.
“It was dark there for a little bit” says Marty. “It brought back visions of 2005 when Clayton was gravely ill, a really scary time for us. Most people would think it’s not a big deal, but pneumonia, when you have no immune system, can be pretty scary.”
The Cowan family, who had been sharing information about Clayton’s progress on social media, soon shut it down. Marty says, “communication with the outside world was not something I could handle at the time. There were high levels of stress and concern, some bad days there, the news about the pneumonia was pretty devastating, because all you want is for your kid to get well. There were definitely some dark corners in my mind that made me question whether this (transplant) is the right decision. I reached out to Clayton’s nurse and she put the kibosh on that pretty quick and that was what I needed to hear – I couldn’t go down that road.”
Although pediatric bone marrow transplants have become more common, every situation is different, every outcome dependent on the marrow engraftment. Engraftment is when the new blood-forming cells start to grow and make healthy blood stem cells, an important milestone in the transplant recovery. “Fortunately for Clayton, Graham’s marrow engrafted on day 14, post-transplant”, says Marty. “It took a lot of antibiotic roulette from the doctors at the Johns Hopkins Children Center and Clayton did go into surgery for a bronchoscopy at one point, but Graham’s marrow is nice and healthy and strong and on the job. It took its sweet time that’s for sure, but it is working.”
It has been quite the ride. Marty lived in the hospital with her son for 45 days, something she says was quite an experience. “It’s not a glamorous life at all, Clayton was on so many medications and pumps going off all the time. He was vomiting and having diarrhea and I was up 7- to- 8 times a night. Then again I have no business even contemplating this was hard because I had the wonderful privilege of meeting some extraordinary women on the pediatric oncology floor, their stories are tough and we have bonded. I’m tired, it’s been hard, but there are stories here that are heartbreaking and my heart goes out to them.”
Despite her exhaustion, Marty kept up with her only respite, her Yoga training. Marty is taking classes to earn her Yoga certification, which will wrap up August 1st. “It’s been a wonderful distraction”, she says. “Yoga kept me grounded, I’m especially grateful for my instructor Kim of Charm City Yoga, who encouraged me to keep doing it, it’s a wonderful program and definitely worth it.”
For Clayton the journey is far from complete. Marty says the recovery mode has definitely taken its toll on him and he doesn’t really talk about what he’s gone through, nor does he make any special requests. “You could dump a million dollars on his bed right now and he wouldn’t care, he’s been through hell”, says Marty.
But a little piece of heaven arrived on Day 29, post-transplant. The opportunity to get out, to leave the hospital and take up residence in an apartment in Canton as part of Johns Hopkins Believe in Tomorrow program for pediatric healing and treatment. (You can read more about Believe in Tomorrow in Sunday Series 19: https://markbrodinsky.com/the-sunday-series-19-with-mark-brodinsky/)
And though discharge day was a blessing, 5 days later Clayton was back in the hospital following a fever on July 8th, but as of this post he is back at the Believe in Tomorrow apartment with his mom and his dad John. Marty says John has been “rock-solid”. I am so thankful for him because he has been amazing”, she says.
And Marty says Clayton has just been incredible: “We are still concerned about him with his appetite and nausea. It’s been 2 months since he’s had a meal and 2 months of vomiting multiple times a day. It’s really hard seeing him like this but we are very hopeful he will turn the corner soon. JHCC is working very hard trying to get him well. All of his numbers (white blood cell, etc.) from the transplant are great and we are so thankful!”
There is much to be thankful for. In life, it’s overcoming the struggles, it’s breaking through the obstacles, it’s having the conviction, determination and perseverance to fight for the best, as heart-wrenching and emotional as that battle might be – especially when it comes to your child.
Marty says there is knowledge and insight to be gained: “I would say as far as this experience – I do wish things were different of course – but I look at it as a gift and a privilege to be able to care for your child and experience this as much as we can with him. It really is a gift and the friendships I’ve made at the hospital, you can’t put a price tag on that. The other parents, nurses, doctors and teams of people who have worked so hard to get to this point with our child.”
For Clayton the comeback continues….
Until next time, thanks for taking the time
Mark
Mark Brodinsky, Author, Blogger, Speaker, Emmy Winner, USHEATLH Advisors
(http://www.ushagent.com/markbrodinsky)
Author: The #1 Amazon Best-Seller: It Takes 2. Surviving Breast Cancer: A Spouse’s Story
(http://www.spouses-story.com/)
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