Bionic: Superhuman? Nah, Just Superhero!

When I say "bionic", many people think of The Million Dollar Man or The Bionic Woman.  And while I do think Ally is a superhero, The Bionic Pancreas will not give her superhuman powers.

Much of the diabetes community is familiar with the research happening around artificial pancreas technology. However, I do have many friends and family who may not be, and I'd like to take a minute to explain just what I mean when I say "Go Bionic!"

Bionic Pancreas: What Is It?

The bionic pancreas is a device which automatically controls blood sugar.  The current version, which Ally wore at Clara Barton Camp last week, is made up of an iPhone which runs the algorithm, a Dexcom CGM (on the back of the brick containing the iPhone), and two infusion pumps - one for pumping insulin and one for pumping glucagon.  This truly mimics a working pancreas, which produces both of these hormones.  Insulin lowers blood sugar.  Glucagon raises blood sugar.  In a person with type 1 diabetes, the pancreas is not producing insulin and glucagon function is impaired.

Ally's Bionic Pancreas, Clara Barton Camp, 2014 Summer Camp Study

(The final version of the bionic pancreas should be a single device with two chambers - one for insulin and one for glucagon, along with an embedded control algorithm and integrated CGM.  So when the device reaches the market, wearing it will not be as cumbersome as the picture appears, but rather very similar to the one insulin pump which she currently wears.  And on a sidenote, apparently Ally didn't mind the weight of it at all.  She was quoted in Kerri's article saying, "Even with all the pumps on and the phone, I could still do a back-handspring in the grass.")

Bionic Pancreas: How Does It Work?

The bionic pancreas system takes a measurement of blood sugar every five minutes, using the CGM (Continuous Glucose Monitor).  Then it automatically makes a decision about how much insulin (for lowering blood sugar) or how much glucagon (for raising blood sugar) to give.  It makes these decisions every 5 minutes, 24 hours a day.  That's 288 decisions a day.

Currently, Ally wears an insulin pump and a CGM.  We are constantly checking blood sugar and making decisions about dosing insulin based on some intuitive thinking about her current blood sugar, the food she is eating, her current basal rate (background insulin) and any activity she may have had - or will soon have.  Even with the best intuition and planning, we still have to be concerned that the amount of insulin we choose to give could cause Ally's blood sugar to drop too low.

The bionic pancreas makes these decisions without the input from the person with type 1.


Bionic Pancreas: What Does This Mean For Ally?

The bionic pancreas is not a cure for diabetes.  It does mean that Ally will still have to wear a medical device and take on the responsibility for maintaining that device and its parts (inserting infusion sites and cgm sensors, refilling insulin and glucagon cartridges).

The bionic pancreas does mean that Ally's diabetes will be controlled completely by this closed loop system.  It means that she will not have to worry with counting every single carbohydrate that she puts in her mouth, or that her activity will make her blood sugar drop low.  It means that she will not have to constantly be adjusting basal rates.  It means that she will be able to sleep through the night without the worry of her blood sugar dropping too low.  And it means that she will be able to maintain blood sugars within a tighter range without much effort.

The bionic pancreas will help Ally, and all those living with type 1 diabetes, to achieve better blood glucose control and, at the same time, ease the burden of diabetes management. 


This post is part of a series documenting Ally's experience as a participant in The 2014 Bionic Pancreas Camp Study.  

READ MORE:

UNTIL THERE IS A CURE

3..2..1..GO BIONIC!

MY HEART SWELLS

MESSAGE IN A BOTTLE

TODAY I REJOICE!

AFTER THE BIONIC PANCREAS

I WISH IT WERE THREE YEARS FROM NOW

Message in a Bottle...or a Picture :)

So when your daughter is away at diabetes camp for two weeks and you don't get to talk to her, you rely on pictures and letters to get the scoop!  I read a lot into these pictures :)

Photographs courtesy of Clara Barton Camp photographer via ecamp website. 

I see a smiling girl in several of these pictures.  I'll take that as she is having fun!

I see her really concentrating on the apparent warm up stretch.  I'm assuming she's either really tired or just not into exercising at the moment!  (And hope that she's not sad about something.)

I see her chillin' out with the girls.  I'm happy to see that she is making new friends.

I see her enjoying a swim in the lake.  I took that as a fun way to cool off!  Thanks to my friend Wendy who pointed out that it appears that Ally is wearing a site on her tummy.  Woa!  I'll take that as success!  One of Ally's goals while at camp was to try new sites and to gain self-confidence at inserting her own pump sites.

And when the mail arrives with several letters from camp - all at once - you read them over and over again and know that all is well at camp!

Excerpts from Ally's letters from camp

This post is part of a series documenting Ally's experience as a participant in The 2014 Bionic Pancreas Camp Study.  

READ MORE:

UNTIL THERE IS A CURE

3..2..1..GO BIONIC!

MY HEART SWELLS

BIONIC: SUPERHUMAN? NAH, JUST SUPERHERO!

TODAY I REJOICE!

AFTER THE BIONIC PANCREAS

I WISH IT WERE THREE YEARS FROM NOW

My Heart Swells

My heart swells when I think about Ally.  How much she’s grown, how strong she is becoming.

Ally has always had a positive attitude, but like most people living with diabetes, she has moments of really disliking diabetes.  It is a constant burden to worry about blood sugars and how foods, exercise and emotions will play into the next insulin dosing decision.  There are many legitimate reasons for getting down or feeling overwhelmed with Type 1 Diabetes.

Following our Friends for Life trip last summer, Ally and I talked about choices for the next year.  I asked her if she wanted us to attend FFL again, or if she wanted to go back to diabetes camp next summer.  The last two years FFL and diabetes camp have overlapped, so we had to choose one or the other.  She was torn because she really wanted to go to camp this summer, but knew that if she went to FFL, she'd get to spend time with Addy, her "friend for life".  Jokingly, she said, "How about if Addy comes here and goes to camp with me?"  We laughed and I said I wished that were possible.

Then when I learned that Ed Damiano and his team would be recruiting for the Bionic Pancreas Camp Study, I showed Ally a picture of Clara Barton Camp.  I said, "What if you and Addy could go to camp together?"  The first thing she said was, "Mom, isn’t that the camp where they got to wear the Bionic Pancreas?  I DEFINITELY want to go there.  Can I wear it while I am there???"  She had no idea that my next question would be “How would you feel about being in a clinical trial for 6-11 year olds?”  She screamed, "DEFINITELY!"

I had started out thinking that I needed to really talk to Ally about this study and make sure that it would be something that she really wanted to do.  While I had listened to Ed Damiano present his Bionic Pancreas project multiple times at different Children With Diabetes events, she had only seen a video and briefly heard us talk about it.

What I didn't know was that she had already "bought in" to the idea of it.  I learned that she had written a paper about the Bionic Pancreas at school shortly after watching the video from last summer's camp study.  She also told her school nurse and teachers all about it.  From then on, she asked me month after month if I had heard anything about recruiting for the study.

It makes my heart swell with pride that Ally said “DEFINITELY” when I asked if she’d be interested in participating in the Bionic Pancreas Summer Camp Study.  It made me cry the second that I saw her wearing it.  She is doing something awesome!

She is turning this burden of diabetes into something more.  

This has been an opportunity for Ally to experience freedom from her diabetes, even if just for a short time.  But this has also been an opportunity for Ally to participate in a clincial trial that all those living with diabetes will hopefully benefit from.  This has been a chance for Ally to advocate for herself and others with diabetes.  This makes my heart swell!

Ally was smiling from ear to ear from the moment we arrived at camp until the moment that I said goodbye.  (And she even tried to keep smiling while I bawled!)  She has been excited about the bionic pancreas since the first time she watched a video about it.  As I was leaving camp, she said, "Mom, I think I'm going to use up all of my pictures on this (pointing to her bionic pancreas) and of Ed Damiano!"  Lol.  She is old enough to appreciate how life changing this is for her and for all those with diabetes.  And I think she's old enough to understand how proud we are of her too!

Few things make my heart as happy as it does when something gives Ally hope for a better quality of life.  THANK YOU AGAIN to the whole Bionic Pancreas team!  You have given Ally, our family and all those with type 1 diabetes something to feel hopeful about.



This post is part of a series documenting Ally's experience as a participant in The 2014 Bionic Pancreas Camp Study.  


READ MORE:

UNTIL THERE IS A CURE

3..2..1..GO BIONIC!

MESSAGE IN A BOTTLE

BIONIC: SUPERHUMAN? NAH, JUST SUPERHERO!

TODAY I REJOICE!

AFTER THE BIONIC PANCREAS

I WISH IT WERE THREE YEARS FROM NOW

3..2..1..GO BIONIC!

I know that my blog has been gathering dust for the last several months.  Life is busy.  But this week we have been blessed with an opportunity so big that it warrants a good dusting off of the old blog!
Ironically, one of my last few posts was exactly related to the reason for dusting it off today.  "Until There Is a Cure"  is the beginning of the story which led us to this point today.    

While we have, in a way, been counting down since December...THIS is the most meaningful countdown I've ever experienced.  Please take a minute to watch:

(*Video credit goes to Wendy!  My video is a mess.  I was shaking and you get to see lots of the floor and the ceiling.)

As Ed Damiano counts down from 25, I am overcome with emotions.  So many things were running through my mind in those last few seconds.  I was thinking about how proud I am of Ally for wanting to be a part of this clinical trial.

T-minus 20 seconds and counting...I was thinking, "Oh my gosh, she is taking her own insulin pump - that she wears every.single.day - off for the next five days."

10 seconds..9..8..7..6..5.. "This is going to be a game changer for all type 1 diabetics.  I can't believe we are doing this right now!!"

5..4..3..2..1..GO BIONIC!  I heard those words, "Go Bionic", and my heart skipped a beat.

GO.BIONIC.  That is huge!  That means that her diabetes is now being controlled completely by the closed loop system.  That means that for the next five days she doesn't have to worry about counting how many carbs she puts in her mouth.  She doesn't have to worry about her basal rates.  She doesn't have to worry about figuring a correction dose of insulin for high blood sugars.  She doesn't have to worry that she might go low at night after so much activity.  The entire burden of diabetes management has been lifted off of her shoulders for five days.  She can just be a kid at summer camp!!!!

"Go Bionic!"  That is the moment that Ally became bionic.  That is a moment in time that I will never forget.

My Bionic Girl!!

We could not be more grateful to Ed Damiano and the entire Bionic Pancreas team for all of their dedication and hard work in making this a reality for our daughter and for all those living with Type 1 Diabetes.

Ally, Addy & The Bionic Pancreas Team

Read more about the Bionic Pancreas here:
http://www.bionicpancreas.com/
http://www.bu.edu/bostonia/2014/eng-profs-bionic-pancreas-takes-a-big-step-forward/
https://www.youtube.com/watch?v=_3aSRscC4Cg


This post is part of a series documenting Ally's experience as a participant in The 2014 Bionic Pancreas Camp Study.  

READ MORE:

UNTIL THERE IS A CURE

MY HEART SWELLS

MESSAGE IN A BOTTLE

BIONIC: SUPERHUMAN? NAH, JUST SUPERHERO!

TODAY I REJOICE!

AFTER THE BIONIC PANCREAS

I WISH IT WERE THREE YEARS FROM NOW