I Wish It Were Three Years From Now...

Time flies.  My kids are growing up too fast.  I never wish time away...

Well, almost never.  Ally had a rough diabetes day yesterday.  Her CGM was reading above 400 and finger stick showed a blood sugar of near 400.  She had been swimming (on and off of her pump for a few hours), and her pump site came loose.  Tears, tears and more tears.  She was hungry and couldn't eat anything until we could get her blood sugar to come down a bit.  She had just a few minutes to get herself ready for cheerleading practice, where she would be helping to coach the younger peewee cheerleaders.  She couldn't find her shoes.  She couldn't find her bag.  She didn't like the way I had put the bow in her hair.  Tears, tears and more tears.  Finally in the car on our way to cheer (a few minutes late now) and she said, "I don't think I can even remember the cheers right now!"  Tears!  I am feeling so bad for her because I know that a blood sugar of almost 400 is making her feel really terrible.  These are such helpless moments for me because all I can do is give more insulin and wait it out with her, but I can't make her feel better.  We are almost to the park and she says (in a tween sort of huff), "I JUST WISH IT WERE 3 YEARS FROM NOW!"  I looked at her kind of puzzled.  She continued, "Because then I would have a bionic pancreas and I wouldn't be 400!"  And I suddenly wished the time away too.  I wish we could fast forward to a time when she would not have to worry about her diabetes.

Our hope for a better quality of life for Ally has been re-energized by the Bionic Pancreas.  Seeing first hand that the Bionic Pancreas could give her better blood glucose control with very little effort has made us wish the next few years away.  We simply cannot wait for the bionic pancreas to become a reality for Ally and all those living with type 1 diabetes.

I know that some people really believe in only supporting research towards a biological cure for type 1 diabetes.  Our family has always, and will continue to, support research towards a cure.  But, we believe whole-heartedly that we must support this type of technology that will ensure a better life for those who are living with type 1 diabetes.  Until there is a cure, we are still managing the ups and downs of diabetes 24/7.  Until there is a cure, Ally is at risk every single day of having a severe hypoglycemic event.  Until there is a cure, every day is adding to the risk of her developing long term health complications.

The Bionic Pancreas is not a biological cure for Ally's diabetes. However, we believe that it will be the best tool for managing her diabetes...until there is a cure.

We know that in order for this technology to become a reality, we must support the efforts of the researchers in any way that we can.  We have decided to take The Bionic Challenge!  This is what the Bionic Challenge is:

We are asking for the assistance of the T1D community to raise the funds needed to build the integrated bihormonal bionic pancreas platform that will be used in our final pivotal study of 2016.

The Bionic Challenge (which officially launched on July 3, 2014 at the Children with Diabetes Friends for Life Conference in Orlando) asks each participant to raise $5,000 by September 1, 2014. If each participant can turn to their friends and relatives and obtain 50 $100 donations, we can continue our development effort and keep on schedule for our final pivotal study in 2016.

We have just two weeks left to meet this goal!  If you would like to make a donation to help build the final bionic pancreas, please click the link here to find out more about how you can donate.
Credit card donations can be made directly to Boston University here: https://www.bu.edu/alumni-forms/forms/eng/damiano/.  Please reference Team Ally - Ohio if you make an online donation.  If you'd like to make a donation in another form, please contact me at BoxOfChocolates@hotmail.com.

Thank you so much for your support!  Go Bionic!

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

BIONIC: SUPERHUMAN? NAH, JUST SUPERHERO!

TODAY I REJOICE!

AFTER THE BIONIC PANCREAS

After The Bionic Pancreas

I have been anxious to tell you all about Ally's experience wearing the Bionic Pancreas. But I have also been in catch up mode after being away from home, my hubby and my other girls for two weeks. I've caught up on bills, shopped for school supplies, weeded my garden. I'm still catching up on snuggles though. I mentioned to Ally that I needed to get an update written for the blog. She offered to do it for me! So here you go an update on Ally's "bionic experience" from Ally herself...


If you're a kid like me, a type 1 diabetic, how many times in the past two weeks have you been asked, “Do you feel high? Do you feel low? What does your CGM say?”  I’m counting. It’s only been one day and I'm already at 12.

That was one of the great things about camp. I was monitored 24/7, but I wasn’t asked any of those questions. There wasn't any reason to. I was wearing the Bionic Pancreas.

The Bionic Pancreas, aka the Bio Panky, is amazing! It kept my numbers in range the whole five days that I wore it!  (And it required a lot less work - and questions.) The five days that I didn’t wear the Bio Panky, my CGM graph looked like a roller coaster. The reason I think it worked so well is that I wasn’t just given insulin, the Bio Panky gave me glucagon too. A Dexcom CGM was paired with an iPhone that read the CGM every five minutes and depending on my blood sugar, it would give me insulin, or glucagon.

Another cool feature of the Bio Panky is that I didn't have to count carbs for everything that I ate. I just had to tell it if I was eating a small, normal or large meal for breakfast, lunch and dinner. At snack time, I didn't worry about entering anything at all.

If you saw my CGM graph, you might even think that it was a non-diabetic's graph. But it really was mine...and I was even at camp getting a lot of exercise. Usually when I have that much exercise, my blood sugar goes low low low. I never went low while I was on the Bio Panky, not even at night.

Some things do need to be fixed before the Bionic Pancreas will be on the market. Glucagon is not stable for more than 24 hours at a time right now, so we had to change our glucagon pump site every day. Also, it needs to be combined all in one device. The research team told me that these things will be taken care of by the time its out on the market.

I had so much fun at Clara Barton Camp. I made new friends. We laughed and sang lots of songs together. We played fun games, like gaga and cities and capture the flag. Dance night and the talent show were fun. Swimming in the pond was pretty cool. I learned a lot at camp too. I learned how to make a duct tape pump pouch :) And not only did I learn to try a site in my stomach, but I learned to do it all by myself!

This is me inserting a stomach site
which I learned at Clara Barton Camp.

But the best part of camp was learning more about the Bionic Pancreas. I can't wait to have my own Bionic Pancreas someday!

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

BIONIC: SUPERHUMAN? NAH, JUST SUPERHERO!

TODAY I REJOICE

I WISH IT WERE THREE YEARS FROM NOW

Today I Rejoice!

Today I rejoice because it is time to pick up my camper!!!  Two weeks ago, I wasn't rejoicing, I was crying.  Shortly after Ally began her bionic journey, I had to say goodbye to my sweet girl.  I tried so hard to leave camp before she saw me cry.  I was not exactly succesful.


I tried to tell myself not to cry.  I was about to have a "momcation" with my friend Wendy for the next two weeks.  Two weeks of not thinking about basal rates and changes that need to be made.  Two weeks of not counting carbs.  Two weeks of sleeping through the night, without worrying that her blood sugar would drop too low.  Two weeks without wondering how her food and her exercise will affect the next insulin dosing decision.  I was looking forward to this mom break.  But I still cried.

I was feeling an overload of emotion that day.  I would not see my girl for two weeks.  She had never been away from me for that long before.  Like never!  But that is not what made me cry.

I was overwhelmed with emotion because she had just started wearing the bionic pancreas.  I was going to be putting my trust in others, in a machine, to keep her alive. That has been my job every day since her diagnosis.  The thought of letting that go completely for two weeks...overwhelming!  But that is still not what made me cry.

I cried because for the first time in five and a half years, Ally got to experience a little less weight on her shoulders.  She would get to experience the "unburdening" of her diabetes management.  The bionic pancreas would be making the decisions about dosing her insulin and glucagon.  Every 5 minutes.  That's about 12 times an hour.  288 decisions a day.  And she didn't even have to think about it!

And that is what made me cry.

So today, I will go pick up my girl.  I will rejoice!  (And maybe I will cry a little too!)


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

BIONIC: SUPERHUMAN? NAH, JUST SUPERHERO!

AFTER THE BIONIC PANCREAS

I WISH IT WERE THREE YEARS FROM NOW

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

Spare a Rose - Save a Child

Spare a Rose - Save a Child is an online effort that raises money and awareness for IDF's (International Diabetes Federation) Life for a Child program, which provides life-saving diabetes supplies, medication and education that children in developing countries need to stay alive.

With Valentine's Day approaching, it's the perfect time to share some love!  It's very simple to participate, really.  They are asking each of us to take the typical Valentine's Day "dozen roses", buy one less rose and donate the value of one rose to spare the life of a child.

This line from the campaign page keeps ringing in my ears:

One rose, one month of life. A dozen roses, a year of life for a child with diabetes.

I encourage you to visit this link, http://sparearose.org/ and read more about this Spare a Rose campaign.


Follow this link to Give:
www.SpareARose.org/give

Then print one of these cards to show your loved one that their love has inspired you to donate the cost of one rose to Life for a Child.

 

Thank you for Sharing the Love this February!