By Clayton McCook
In late 2015, we received the very difficult news that my wife Cindy had breast cancer. She underwent surgery just before Christmas of that year, and then began chemotherapy in early 2016. She had six rounds of chemo, followed by a year of infusions of a tumor-fighting drug every three weeks. The week after each chemo infusion was very difficult for her.
During that time, Cindy wasn’t as available as she usually was (and now is again) at times to help manage our daughter Lily’s diabetes.
It certainly tested me personally, as Cindy underwent treatment during my busy season at work when I typically work 70-80 hours a week. I leaned very heavily on my faith and found strength in our church and school communities, who brought over meals and helped us through prayer and support.
During Cindy’s treatment, we heard about Looping, pumping insulin using an Open APS System. I was very drawn to the idea of tighter control of Lily’s blood sugar because of the safety aspects of keeping her in tighter range. This was particularly true regarding overnight episodes of hypo- and hyperglycemia, which affected all of us by causing interrupted sleep patterns, as well as long-term concerns about diabetes complications.
We were very happy with our looping experience overall. The DIY community is filled with amazing and altruistic people who generously donate their time and talent to help families like ours. However, having to rely on social media posts and the kindness of strangers for tech support was difficult at times. This was particularly true for me as I have no background in tech and had to learn everything on my own from those wonderful people. Troubleshooting presented unique problems, because when I set up our systems my wife Cindy couldn’t participate as fully in that process as she had with all the other aspects of Lily’s care prior to Cindy’s diagnosis with cancer.
At just 10 years old, Lily amazes me.
Diabetes is constant. No matter what we’re doing or where we are, it’s always on our minds. We’ve tried very hard, and successfully I believe, to not focus on diabetes all the time and to trust Lily with her own care when and where it’s responsible to do so, but it’s still always there. We’ve let her know that she’s right when she feels like it’s not fair, because it isn’t. She got dealt a tough hand when she was diagnosed, and if I could take it away from her I would in a second. We have tried to arm her with information and enough data and knowledge to allow her to take care of herself in our absence, and she has demonstrated so much character and resolve by taking over many aspects of her care. She is incredibly adept at counting carbs and determining appropriate insulin doses. Almost anything she does, whether eating or playing basketball or riding her bike, requires her to think about how it might affect her blood sugar. That’s a tough burden for a kid.
Prior to us switching from OpenAPS, it became apparent that she had grown weary of having to keep up with multiple components and troubleshoot when her system went down.
We became aware of Tandem’s products by seeing them at JDRF and other diabetes-related events over the years. The design was very appealing to Lily and she let us know, in no uncertain terms, that it was the pump she wanted when her original pump went out of warranty.
Coming from the looping community, I tempered my expectations quite a bit for measures like Hba1c and time in range. We were willing to give up a little bit of the tight control we’d achieved with Loop and OpenAPS. But we’ve been amazed to see her time in range improve and her HbA1c drop. When we combine that with the fact that the t:slim X2 pump requires so much less input and time and equipment for her to carry, we couldn’t be happier with our decision to switch.
Honestly, we continue to be blown away by this pump. Since we started using the t:slim X2 pump, we rarely have to troubleshoot. This has allowed her to focus on important things like being a kid, playing with her friends, and enjoying her life.
Thinking back to when Lily was in kindergarten, Cindy spent time at her school every day. We didn’t have a school nurse on campus full time, so she often had to go up to the school to give her insulin or juice or just to make sure she was ok. When Cindy was undergoing treatment, the same time we set up our looping system, I often had to go to the school for troubleshooting when her system would go offline, or something would happen to one of the components. With the t:slim X2 pump, Lily only has to be responsible for her phone and her pump, and I almost never have to go to her school anymore.
Part of the reason for me not having to go to her school is related to the t:slim X2 pump keeping her in range so well, and part of it also has to do with Lily taking over so many aspects of her care.
It is an honor and a privilege to get to be a partner in Lily’s care. There is no doubt that it’s strengthened our marriage in many ways. We have much more of a “big picture” mentality because Lily’s diabetes and Cindy’s cancer diagnosis forced us to focus on visceral things that really matter. We don’t get caught up in petty battles and arguments that take away our ability to care for Lily and each other. We view diabetes management as the difficult endeavor it is, and we recognize that it is only through teamwork, cooperation, mutual respect, and love that makes it possible to provide Lily with the care she deserves. She amazes me every day with the person she’s becoming and the work she puts in to stay safe and healthy. My greatest blessing is to be her and Olivia’s father and to be Cindy’s husband. While having a child with diabetes may seem like a burden to some, I feel blessed that God entrusted me and Cindy with her care.
From time to time, we may pass along: suggestions, tips, or information about other Tandem Insulin Pump user experiences or approaches to the management of diabetes. However, please note individual symptoms, situations, circumstances and results may vary. Please consult your physician or qualified health care provider regarding your condition and appropriate medical treatment. Please read the Important Safety Information linked below before using a Tandem Diabetes Care product.
