Here at the 'Mine, we're all about amplifying voices within our Diabetes Online Community (DOC). Today, we welcome Oklahoma D-Dad Clayton McCook, whose young daughter Lily was diagnosed with type 1 about seven years ago, and has since become an active advocate, pushing for more affordable and accessible insulin through the #insulin4all movement. In his day job, Clayton works in equine veterinary care -- meaning his patients each day are horses, of the racing variety. Please give a warm welcome to Clayton as he shares his story below.
A Word from Diabetes Dad Clayton McCook
"I’m sorry to tell you, she has glucose and ketones in her urine.” The doctor’s voice was somber. He didn’t offer any further explanation, because he knew that I as a practicing veterinarian would know what that meant.
“So she has type 1 diabetes, correct?” I replied.
“Yes,” he said softly. “You must go to Baptist ER immediately. I’ve called ahead. They’ll be waiting for you.”
My head began swirling, and I was overcome with a sense of guilt. All the signs had been there: the thirst, hearing her get up in the middle of the night to go to the bathroom, the weight loss, the irritability, and the fruity odor to her breath. I had dismissed my wife’s concerns. No way it could be type 1 diabetes. We have no family history. Not our children (we have two, and Lily's younger sister who is now 8 doesn't have T1D). Not us. I was so dangerously wrong, but at least I married a woman who takes such good care of our family and listens to her intuition. At least she didn’t listen to me and took our daughter to see our physician. At least our physician trusted my wife’s instincts enough to believe her. At least we got her to the ER before she went into DKA.
It’s hard to look back on that time now. This February will mark seven years since our oldest daughter Lily’s diagnosis at age 3.
Those early days are becoming more of a blur, as she is 10 years old now. The night in the hospital. The first traumatic finger stick. Her little arms wrapped around my leg as I tried to convince her to hold still for those first shots. The color returning to her face and the strength returning to her little body. Our journey has been a complicated mixture of heartbreak, fear, joy, and triumph. Through it all we’ve done our best to work together as a family to provide the best care for Lily. My wife is a speech pathologist, though for the past several years she has taught at our daughters' school in part to help care for Lily. Our daughter has been incredible from the beginning, and we are so proud to see her working so hard these days to handle much of her own management. She counts carbs, does her own finger sticks, administers her own boluses, lets us know when she’s not feeling well, and often treats a low she feels coming on before we even realize it.
Our diabetes journey has taken us many places and introduced us to many amazing people. We were fortunate to be one of the earlier families to have access to the Nightscout group’s technology, setting up our system in the fall of 2014. Through that connection I’ve come to know some of the most wonderful people in the world, who have devoted their time and talent and energy to help families like ours. Our positive experience and connections with Nightscout led us to spend two years on the DIY automated insulin systems Loop and OpenAPS. This experience once again opened to us a world filled with selfless and altruistic heroes who’ve worked so hard to make it possible for others to share in these marvels. This past year we made the decision to switch to the Tandem t:slim X2 pump, which has been a wonderful change for our family. We are very thankful for the team at Tandem who work so hard to provide a system that works so well for us.
Animal Care... and Diabetes?
As mentioned, I am a practicing veterinarian. My practice focus is on race horses, and specifically, Quarter Horses. These are the sprinters of the racing world, running up to a quarter mile as their name implies. My patients weigh upwards of 1200 pounds and run 440 yards in 21 seconds. They are big and powerful and beautiful, and my job is literally the fulfillment of a lifetime dream. It’s hard work, and it involves long hours. I generally get to the track before sunup, and I go months at a time without a single day off, but I love what I do and feel so fortunate to do it.
I don't typically deal with diabetes in my patients. Horses don't necessarily get diabetes, though we are starting to see more cases of insulin resistance and other endocrine disorders in older horses. My patients tend to be younger so I don't see many of these. Dogs and cats do get diabetes, but as I'm an exclusively equine veterinarian I don't have any patients with diabetes like my small animal colleagues. Dogs more commonly get diabetes that is similar to type 1 in humans, while the most common form of diabetes in cats resembles type 2.
Becoming an Insulin Affordability Advocate
Though my job is awesome, it’s also very dangerous. Being an equine veterinarian is a risky profession, as one swift kick from an unhappy patient can lead to devastating injury. It is perhaps this danger that led me to begin examining the skyrocketing price of insulin and becoming an advocate within the #insulin4all movement. Though our family is privileged and we have access to good health insurance and a good salary through my job, I worry all the time about something happening to me that would render me unable to care for Lily. I worry about what will happen to her when I’m no longer here to provide for her. I also worry about the increasing number of Americans who are struggling to afford their insulin and am angry about the skyrocketing price.
Through the influence of friends and advocates like Melinda Wedding, who I met through Nightscout, I began to take a serious look at the issue of insulin and drug pricing. I became involved with groups like T1International and Patients for Affordable Drugs, and have recently agreed to help lead the @OKInsulin4All chapter under the guidance of UK nonprofit T1International. I am not interested in excuses and talking points, and I don’t have time for those who would dismiss this issue with unhelpful commentary on how “complicated” the issue is or how advocates are just “shouting.” I am interested in concrete actions.
I am interested in serious policy and legislative change. I am interested in working with those who recognize that the status quo is unacceptable and unsustainable, and I have pledged to find more time in the coming year to do my small part to enact lasting and desperately needed change. I believe the momentum exists, and I believe 2019 will be a banner year for #insulin4all.
While there is so much to discuss on insulin affordability related to people with diabetes, on the professional side I am hearing more and more from my small animal colleagues that their clients are having a harder time affording their pets' insulin. But that's a topic for another time...
In closing, I never imagined what life would be like having a child with type 1 diabetes. Though I still have moments when I grieve for the loss of some of Lily’s innocence and the parts of her childhood diabetes has taken from her, I still find myself overwhelmed with gratitude for the people we’ve met and the connections we’ve made through being caregivers. Not a day goes by that I don’t give thanks for Lily’s strength and courage, my wife Cindy’s love and partnership, and the constant help and concern Lily’s younger sister Olivia has for her.
Our family faces 2019 with hope and optimism, and filled with thankfulness for all the grace and blessings we’ve received over the years.
Thank you for sharing your story, Clayton. And of course for your advocacy work that helps our D-Community!