Brooke Laidley is my second cousin once removed. I know because I just spent an embarrassingly long time on the internet trying to figure out exactly how we are related. By the time Brooke was born, I was planning my wedding and a move to the East Coast, so I never spent a lot of time with her. As she’s grown, I’ve followed along (as moms do) on Facebook, and it was such a delight to get to know her when we chatted on the phone a few weeks ago. I wouldn’t have ever thought that her diagnosis with Type 1 diabetes would be the “common ground” we would share, especially since I had cancer, not diabetes! But the way we have each used a difficult diagnosis to become empowered patients and hope to help others facing a similar situation makes us more alike than I could have imagined.
Big Responsibilities for a Little Girl
Though I only have a few memories of her as a child, I do remember hearing that Brooke was diagnosed with Type 1 diabetes when she was only 14 months old. Until she was in the third grade, Brooke needed multiple insulin injections each day. At that point, she received one of the earliest model insulin pumps. The pump eliminated the need for the frequent injections, but it wasn’t the best solution for an active little girl. The pump got in her way, and it made running and playing difficult. Because it wasn’t waterproof, she couldn’t swim. Luckily, by the time she was in the sixth grade, she was able to get an Omnipod, which is much more stable and waterproof because it sticks directly to the skin and forms a tight seal. She didn’t waste a second of her newfound freedom — she became quite the athlete, eventually heading off to Westminster College two years ago to play softball.
College Life: There’s an App for That
Making the move to college brought new fears to her family. Like all college students and pretty much everyone I’ve ever met with a chronic disease, Brooke wanted independence. This was tough, because if people with diabetes experience a drop in their blood sugar while they are asleep, it could lead to a diabetic coma if they are not able to wake up (or if no one is there to wake them up), and the progression of their disease makes it increasingly difficult for them to wake themselves. Her doctor suggested that she get a continuous glucose monitor (CGM), which is a device that monitors her blood glucose every five minutes, so there would be no need to do finger sticks. Brooke got a Dexcom, and the cool part is that “there’s an app for that,” so if her blood sugar starts dropping, the Dexcom alerts her phone. It also alerts her mom and her roommate so that someone can check on her.
It seems like a great solution, but there is a problem. As Brooke gets older, it becomes harder for her to recognize the symptoms of low blood sugar, and it becomes harder for her to wake in response. That seemed counterintuitive to me — it would seem like the longer a person has lived with a condition, the better they would be at recognizing the symptoms. It turns out that a small percentage of people with Type 1 diabetes develop hypoglycemia unawareness because the repeated lows impair their body’s ability to produce the stress hormones that alert them to the problem. So while the Dexcom is an awesome system, if the alarm doesn’t wake her or her roommate (and we all know how hard college kids sleep), she could be in real trouble. Plus, since the Dexcom only takes readings every five minutes, if Brooke’s blood sugar drops quickly, it can become harder to manage before she is even alerted. A too-quiet alarm has long been a problem for people with Type 1 diabetes, forcing patients to think outside the box to reduce the risks of dangerous lows. Dana Lewis and the #openAPS community began with this simple but inadequately addressed problem and ultimately created the open-source artificial pancreas system. Other people with diabetes have turned to a much more low-tech, but far more cuddly option as a solution: a dog!
Social Media for the Win
Not surprisingly, there is a robust online community for “T1D” patients and families. Brooke’s mom saw an article posted in one group about a diabetes alert dog, and she began to do her research. She discovered that after it has been trained to be a service animal, a dog can be nose trained to recognize when its owner has low blood sugar, alerting or waking the owner to take action. This seemed like a great complement to the Omnipod and Dexcom, and something that could give Brooke and her family the confidence that she could live independently and safely.
There’s Always a Catch
Obtaining a diabetic alert dog is much more complicated than asking a doctor to write a prescription. It took a lot of research and waiting to even find the right puppy, who then had to be trained. But the biggest hurdle: the cost. All in, this was a $15,000 investment, and not a penny was covered by insurance. Brooke’s family set up a GoFundMe account and sold T-shirts to raise money to help with the cost.
Until There’s a Cure, There’s a Dog
Sampson is now almost a year old, and he lives full time with Brooke after completing his service and therapy dog certification. He’s an honorary member of the Westminster softball team and sits dutifully in the dugout during every game. He even flew to the West Coast for a softball tournament and was a perfect angel during the long flight, though he did get a little seasick on the whale watching trip! Brooke and her mom are working on nose training, which a trainer suggested they should do themselves instead of outsourcing, because the time spent apart for training might weaken the bond Brooke had already formed with Sampson. Here’s how it works: Anytime Brooke’s Dexcom alerts her that her blood sugar is low, she takes a cotton swab and puts it in her mouth to wet it with her saliva. Then she seals it in a plastic bag and puts it in the freezer before she gets some juice to regulate her sugar. Later, her mom will use those swabs to reward Sampson for tapping on her hands in response to the smell. They’re still working on it, but Sampson is a quick learner and is already alerting Brooke to drops in blood sugar between Dexcom readings. More impressive: He will nudge her juice glass towards her mouth until she drinks it! Eventually, he will be able to alert her during the night and reduce the danger of a quick drop in blood sugar leading to a coma.
I enjoyed chatting with Brooke. I realized that it was, at least in part, because she would fit right in with all my advocate friends. She and her family have done everything possible to give her the best outcome in the midst of a difficult diagnosis. As empowered patients, they explored treatment with the standard of care, new devices, and clinical trials, and they even crowdsourced funds to provide her with the dog that could give her real independence. More than that, Brooke is committed to using her experience to improve outcomes for others facing something similar. She is studying business with an emphasis in health and wellness, with the idea that she would like to work to make sure that other people with diabetes are getting the medication and supplies they need to live their fullest lives. The last year spent with Sampson, though, might just change her mind. The experience has been so transformative and meaningful to Brooke that she can’t help but wonder if training diabetic alert dogs might be an even more rewarding career.
To learn more about Brooke and Sampson, follow along on Facebook!