My daughter, Kady, took part in a JDRF-supported artificial pancreas system clinical trial this week at Yale University in New Haven, CT. Kady’s trial required her to live with a closed-loop system (CLS) outside a hospital setting. Kady was required to have a partner in the study, and I was thrilled that she chose me, her favorite mother and diabetes partner for over 18 years (she was diagnosed with type 1 diabetes (T1D) when she was 5 years old).

I know all the lingo…AP and CLS…but I really didn’t know how the system worked. All I knew was that it has been touted as the most revolutionary advance in diabetes care since the discovery of insulin.

On Sunday, Kady inserted three sensors into her belly and lower back hip/bum: a Medtronic insulin pump, a Medtronic continuous glucose monitor (CGM) that tracks her sugar level, and an exercise monitor. On a normal day, Kady wears two sensors for her insulin pump and CGM. It’s hard to see so many sensors in her little body–the things we do to help further research toward curing T1D!

Kady was given a smartphone-looking meter that showed her blood-glucose level and insulin delivery level and was updated every five minutes. The monitor displayed this information for 12-hour increments. I was given a tablet with the same information so that I can be on the same page with her diabetes management (managing highs and lows, confirming that the sensors are working well, ensuring that the connections are intact). We were told to do anything, go anywhere (within a 20-minute radius of our hotel) and eat/drink whatever we wanted for four days—basically live like we’re not in the study, so the trial can get information from a real-life schedule.

Kady was five years old when she was diagnosed with T1D. There was no internet, no school nurse, and cell phones were just coming out. A pager was my lifeline to Kady when she wasn’t in sight. I spent the first five years after her diagnosis sleep-deprived. I was so concerned that she would go low during the night/have a seizure that I’d check her at midnight when I’d go to bed, set my alarm at 4 a.m. to check her again, and be right there when she’d rise around 7:30 a.m. This week I was sleep-deprived because Kady woke me up to check her BGs at 3 a.m. I’ll take four days of tiredness over five years of exhaustion any day! (The 3 a.m. reading was for study purposes only.)

The technology is fantastic. I loved seeing so much information on Kady all in one place at one time. It also is exhausting with the smartphone/tablet alarms going off at various times, occasionally feeling like we’re seeing too much information and unnecessarily fretting over the trend that’s happening on the screens (is the high going to go down soon? shouldn’t the insulin be kicking in by now? why is the baseline insulin still working if we’re getting low?). We’re taught to manage the diabetes, but it’s hard to let go and trust the technology to do what we’ve worked on for years. Even though the system is tracking Kady’s BGs, she has had to calibrate the system and do a finger prick 12 times/day during the trial to monitor the accuracy of the system (she usually pokes her fingers 2-4 time/day when wearing her CGM). Yes, her fingers are pretty sore this week!

The first day or two on the system were exciting/nerve-wracking/frustrating. After that we understood the system and “let go” (relied on the technology). The last day of the study, we were on information overload. Were Kady’s sugar levels higher than she liked during the four days? Yes. But she only had one low (69) and her highs were only over 275 once. She averaged 70–170 with few spikes almost the entire trial. The Yale team was with us for every part of the journey and talked to Kady about every action and why it was or wasn’t taken. It was a true partnership between Yale, Medtronic and the study participants.

Kady’s been off the system a day now and guess what? Last night and this morning we both really, really missed all the information! Call us crazy, but all the information we were receiving took the edge off our normal-day “What’s your sugar level?”, “What’s your sugar level now?” conversations. This trial was funded by JDRF. My family and I have donated to and raised money through the JDRF Walks for 17 years. I was thrilled to see my hard-earned and hard-raised money in action. Hopefully, there’s a light at the end of this diabetes tunnel…sooner rather than later with the JDRF—researchers—technology team!

JDRF’s Clinical Trials Connection provides people affected by type 1 diabetes (T1D) and its complications with up-to-date information on clinical trial participation opportunities.

Clinical Trials Connection is an online service that allows you to “opt-in” to get information about trials, and access to them. It contains information about all currently active diabetes trials in the U.S and U.K. Based on the criteria you choose, the connection provides you with information about selected trials and how to contact the researchers conducting them. You can also choose to receive regular updates so that you’ll know when new trials that meet your criteria become available. If you find a trial that interests you, you can discuss it with your doctor and also contact the trial’s primary investigator with any questions or concerns.

Read Kady’s previous blog post