Visiting the Clara Barton Camp for the New Bionic Pancreas Study

BP camp photo all 4B

(Left to right: Wendy Rose, Addy Rose, Ally First, Misty First)

This summer, trials for the bionic pancreas continued at the Clara Barton Camp in North Oxford, Massachusetts. I went for a visit, and had the opportunity to meet with two moms and their daughters about their experience. Having both attended Barton as a camper, and then counselor the sights of the pond and familiar smells instantly brought me “home” and then also participating in the Beacon Hill portion of the bionic pancreas trial, naturally I was in diabetes heaven.

One of the more challenging aspects of the trial for me was adjusting to life once the bionic pancreas was disconnected, and it was hard for me to process the entire experience until afterwards. When I spoke to the moms, I asked them to wait a few days before talking to their girls about their time at camp. I also wanted to understand from a parent’s perspective what this entire system could mean for the future of type 1 diabetes. Thanks to Wendy and her daughter Addy, and Misty and her daughter Ally, for sharing their story with Glu!

Anna Floreen–GluAnna

Wendy Rose

1. What motivated you to travel so far to send your child to camp and participate in a trial?

As Addy’s parents, we have a limited opportunity to make a long-term impact on her health. One day, we will have to set her free. When that day comes, we want to be able to tell her with confidence that we did everything we could to alleviate the burden—for her, and all people who are living with type 1 diabetes.

It is our hope that, through this experience, she will feel empowered to take action on her own behalf when necessary, learn to be proactive with her health, and remain steadfast in the fight to access tools that will help her find longevity without complications.

2. Had she been to camp before?

Addy had been to overnight camp four times previous to this experience. Two were weekend camp programs hosted by our local JDRF chapter; and two were weeklong experiences hosted by our local ADA. She was eight years old when she first attended overnight camp.

3. What expectations did you have going in to the experience?

Honestly? I expected highly trained people sitting in front of six oversized remote Dexcom graphs 24/7—eyes peeled, watching for the slightest sign of trouble, before leaping over tall buildings in their capes to rescue campers from the grips of blood sugar mania as needed.

That’s not what happened.

Instead, highly trained people sat in front of 13 remote Dexcom screens without graphs. (What, no graphs?!) There was a bunch of numbers on each screen, and a system in place for knowing when to seek out campers to investigate further.

4. As a parent, what was it like allowing your child to participate in a research project in a camp setting?

The entire experience, from our first inquiry about study participation to the day I picked her up from camp, was a very positive experience for both my husband and me. Turning our child over to research for five days, knowing we wouldn’t be there to keep tabs on everything felt a little intimidating at first, but the entire team did a great job putting our minds at ease.

The camp staff was amazing, and the facility is beautiful. Any hesitation I may have carried with me on the first day dissipated completely once I had the opportunity to meet the amazing people who pour their hearts into making Clara Barton Camp possible for girls with T1D.

Leading up to camp, I joked a lot about pitching a tent, donning camo, and sitting in trees with binoculars just so I could catch a glimpse of the bionic pancreas in action. Okay, maybe I wasn’t actually joking…but, either way, I got through the entire experience with only one email asking a very legitimate question of the study team, and they kindly responded right away.

5. How did this process change your outlook on the future of research in diabetes?

I’ve spent a lot of time reflecting on the history of diabetes management throughout this experience. Insulin was discovered on July 27, 1921, and the first person to ever receive an insulin injection was a child, not much older than my own. The first insulin pump was a bulky backpack connected intravenously. Syringes, lancing devices, test strips…research is the reason every angle of technology has evolved over the past 93 years.

When I look back at how far we’ve come, I cannot help but to find excitement in where we’re going. The bionic pancreas will be a game-changer, and I’m thrilled our family had the chance to be a part of history in the making.

6. What tips can you share with other parents regarding the camp experience and research in general?

Do not take a passive role when it comes to the future in type 1 diabetes management. Research everything you can, and never stop learning. When you believe in something, jump on board and find a way to support the effort. All hands on deck!

If an opportunity presents itself for your child to participate in research, encourage your child to do their homework as well. Help them learn about the study, ask questions, and allow them to make the final decision about participating.

As for camp—first and foremost, ask your child if they’re interested in attending. Camp doesn’t appeal to all kids, and that’s okay. While camp has been an overwhelming positive experience for my child, I don’t believe any child should be forced to attend.

If your child does express an interest, get excited with them and allow the enthusiasm to push diabetes out of the limelight for a bit. Have fun packing, even though it can be overwhelming! They are about to embark on a journey of memories that will carry them through the rest of their lives. These moments won’t last forever. Savor them.

And pack extra socks.

Cabin at Camp Barton 

Addy Rose

1. What was the biggest challenge about “being bionic” while at camp?

There were some things that felt inconvenient (like changing the glucagon site every day), but I didn’t feel like the experience was too much of a challenge. I wanted to be there, so nothing could really challenge that.

2. Did it get in the way of participating with any camp activities?

I couldn’t go horseback riding, because I couldn’t go too far away from camp, but I didn’t mind. We also missed a lot of the big Water Day at Joslin, because they needed to do some study stuff with us on that day. When we were swimming, we had to get out 5 minutes earlier than everyone else to reconnect. Those were just the rules of the study, though. The device didn’t stop me from doing that stuff.

I got to do more things than I missed, and it didn’t get in my way at all. It felt heavy sometimes, but I didn’t think it was a problem.

3. What was the biggest benefit for you?

I didn’t have to think about carb amounts or stop what I was doing to bolus as much. I liked having snacks without stopping to give insulin, and I liked participating in all the activities without worrying about going low.

I made some money by participating in the study, and I’m going to ask for permission to build a gaga pit at my school. Playing gaga was one of my favorite parts of camp. I want to teach my sisters and all my friends how to play, and I think all the kids at my school would benefit from a gaga pit.

4. How do you think this system could help you outside of camp?

At school, I go to the nurse a few times a day and I have to stay there if I’m low. If I had a bionic pancreas, I don’t think I would miss as much class time.

When I run cross-country, the group runs kind of far away from my mom and dad, so I have to keep all my stuff in a pack around my waist in case I need to check before we get back. I’d rather just run with my pump and not worry as much about low blood sugars.

5. What kind of emotions did you and your family have once the trial was over?

It was sad to say good-bye to camp and all my friends. The Bionic Team was amazing. I could tell they cared about all of us and really want to help everyone with type 1 diabetes. I didn’t want to take off my BioPanky, because it made diabetes easier. If I could go back to do it again, I would.

Ally and Anna

Misty First

1. What motivated you to travel so far to send your child to camp and participate in a trial?

When I heard Ed Damiano present at Friends for Life 2013 in Orlando and again in December at a CWD Focus on Technology in Cincinnati, I cried. I cried because it was the first time since Ally’s diagnosis in 2009 that I really felt hope. It was the first time that I really believed that her quality of life was going to be better, and the timeline seemed within reach. My husband and I believed in the bionic pancreas project. We wanted to be able to support the research team and honestly, we wanted Ally to be able to experience this “unburdening” of diabetes management, even if just for 5 days.

2. Had they been to camp before?

Ally went to diabetes camp near our home 3 years ago and really enjoyed it. The following summer we decided to go to the Friends for Life conference as a family instead. She loved that so much that we had to go back again the next year.

3. What expectations did you have going in to the experience?

I knew that, at camp, Ally would be surrounded by other people her age living with type 1 diabetes, and she would feel comfort in that “sameness.” I expected that she would be well cared for by the camp staff, as well as the bionic pancreas team. I expected that if there were any complications or concerns, either with Ally’s camp experience or with her experience on the bionic pancreas, they would contact me. I knew that she was in good hands!

Mostly, I expected that Ally would have a great time just being a kid at summer camp.

4. As a parent, what was it like allowing your child to participate in a research project in a camp setting?

Absolutely positive. Again, I know that she was really well cared for not only by the research team, but also by the camp staff. I am also happy that she had so much fun while doing it. She cried when I came to pick her up because she didn’t want to leave camp!

I am so proud of Ally for wanting to be part of this research project. Living with diabetes day in and day out is a lot of work and can get you down. I love that she was able to be a part of something diabetes related that is so positive and so hopeful. It made her feel really good!

5. How did this process change your outlook on the future of research in diabetes?

Since Ally’s diagnosis in early 2009, I have been hearing that a cure is just around the corner. I have always, and will continue to, support research towards a cure. However, this technology will be life-changing for Ally and all those with type 1 diabetes. It will ensure that, until there is a biological cure at our fingertips, we are doing everything in our power to better Ally’s quality of life and to maintain good blood glucose control, thus preventing long term complications, while we are doing it.

6. What tips can you share with other parents regarding the camp experience and research in general?

I know that sending Ally to diabetes camp is one of the most important things that we can do for her. She comes home a little bit taller, a little bit wiser, and a little bit dirtier. 😉 But she also comes home from camp feeling a whole lot better about herself and her life with diabetes. This year she learned to master her site changes—from beginning to insertion. She is so proud of herself! And we are too.

I encourage parents to learn about the camp and its procedures before dropping your child off. It makes that stressful time of drop off a little easier when you feel comfortable with the situation. Understand that they are taking very good care of your child and enjoy your break from diabetes management.

We spent a good amount of time preparing Ally for the camp study. She knew what would be expected of her (including things like extra site changes) and that she could stop at any time if she felt like she needed to. We also looked at pictures of what the current bionic pancreas system looked like so that she could prepare for the bulkiness of it in its current form. She understood that this was part of the research, and that the final device will be more conveniently condensed into one device.

As far as research, stay connected! Read, listen, talk about the research that is happening around diabetes. Ask questions, stay informed. A lot of hard work and heart has gone into the bionic pancreas project, as well as other diabetes research. It is so important that we, the diabetes community, support these efforts.

The Bionic Pancreas

Ally First

1. What was the biggest challenge about “being bionic” while you were on it?

The biggest challenge was the heaviness of the devices around my waist. It wasn’t that bad though because even with it on, I still could do a back handspring in the grass.

2. Did it get in the way of participating with any camp activities?

On water day, we had to switch the sites during the water activities, but I was fine with that.

3. What was the biggest benefit for you?

The biggest benefit was the amazing numbers. I kept thinking while I was on it “I wonder how good my numbers are right now?”

4. How do you think this system could help you outside of camp?

The Bionic Pancreas would help me with being able to do better tumbling. In gymnastics, I always go low during practice. I would have more time to concentrate on tumbling, and not feeling low. When I get my own Bionic Pancreas, taking care of my diabetes will be easier and I will get better numbers.

5. What kind of emotions did you and your family have once the trial was over?

I want to “Go Bionic” again! I loved the numbers on my meter when I was on the BioPanky.

We and many other T1Ds look forward to it coming out in 2017.

 

 

 

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