Candy Hearts Blog

It's a sweet adventure full of gluten free goodies!

Candy Hearts Blog - It's a sweet adventure full of gluten free goodies!

Dear November,

It’s not me.

It’s you.

You just keep showing up.

November is National Diabetes Month, so here we are.

Again.

World Diabetes Day 2009

Until 2009, November meant pumpkin-spiced everything, Christmas music, and Thanksgiving. It smelled like apples and cookies and cranberries. It was filled with the anticipation of twinkling Christmas lights and childhood excitement. Prior to 2009, I was too overwhelmed with managing 2 toddlers and a preschooler while balancing Type 1 Diabetes in the middle of Halloween and Christmas to give National Diabetes Month much thought.

WDD 2009

And then I learned about The Blue Circle.

November, you took on a new shape for us. You started to smell like insulin and look like a flurry of numbers. Never before had I been so in tune to the intricate images of diabetes in our life: the random test strip on the floor, the empty juice boxes on the nightstand, the nutrition labels with serving sizes and carb amounts circled.

Social media was booming. November engulfed my overwhelmed loneliness with collective reflections from others who understood — parents and PWDs (person/people with diabetes) alike.

Over the years, the anticipation for November began building almost as soon as the New Year. With endless advocacy opportunities and blog posts galore and pictures of families just like ours carrying the burden. I had never felt so connected and in love with a community before. The Diabetes Online Community (DOC) became my sanctuary.

At the same time, however, storms were hovering over the homefront. The housing market crash, furloughs, and pay cuts had forced us to begin thinking about long term solutions because the trenches had gotten too deep. Mr. Rose began taking college classes. I began working more hours. We began making decisions between things like test strips and a tank of gas. Gluten-free food dominated our dwindling grocery budget. Hard times always followed good times, and each time the fall was harder to recover from.

But there was always you, November.

I could regroup each November.

Reconnect.

Remind myself that we aren’t alone on this journey.

It’s November again.

Our 9th November since Sugar’s diagnosis. Next year will mark a decade.  Every day I see another small part of her childhood fade into the young woman she is becoming. November, you’ve seen it happening too, haven’t you?

On November 1st, Mr. Rose donned his cap and gown…

graduation chb

You were there, November. It’s fitting that he graduated on the first day of my favorite month. The month of our wedding anniversary. The month of Thanksgiving.

We don’t really know what happens next, and that feels okay right now.

Like I said…

It’s not me.

It’s you.

This November I’m lighting my pumpkin candles and making cookies. I’m playing the Christmas music and I’ve already put up my little strand of snowflake lights over my desk. I’m cherishing this last November before my little girl is gone knowing her sisters will be quick to follow.

These days are numbered, November.

I’m quite sure there will be a few blue circle moments that pop up. Afterall, diabetes isn’t disappearing anytime soon…but I’m kicking it old school and I hope that’s okay with you.

I know you’ll always be there, November.

I’ve learned I can count on that.

Happy Fall,

Wendy

Bionic: The Data

bionic chalkboard

It was approaching 2:30, and our portion of The 2014 Bionic Pancreas Camp Study was scheduled to end at 3pm. We needed make our way to the building where all 13 girls, and their families, would be meeting with the Bionic Pancreas Team.

Along the way, I took a few moments to grab a quick video clip of Sugar describing her bionic parts before she had to remove the device…

{Sidebar: At first glance, things  might appear too bulky for real world function, but keep in mind this is the trial device. It’s slated to be used throughout the Multi-Center Study (for adults only) that began in June 2014. At the completion of that study, in May 2015, this device will reach the end of its useful life.}

After finishing our little video, she tucked everything away in her bionic belt and we walked inside to find a seat. A group of girls were huddled at one end of the room, and I encouraged her to sit with them, but she shook her head, and sat down beside me instead.

“I want to be next to you when they take it back.”

I could sense her sadness: Sad to be leaving camp. Sad to say good-bye to Ally. Sad to remove her “BioPanky”. Sad that school would be starting within days of our return home…back to life, back to reality…

The team showed us a slideshow of pictures they had taken, made a few announcements, and answered some of our questions (another post, another day – stay tuned!) While Ed Damiano was talking, the rest of the study  team began removing the remaining Bionic Pancreases from around the room.

Dr. Steven Russell had inserted Sugar’s Dexcom sensor and started her blinded CGM on the first day of camp, so it felt fitting that she would hand everything back to him at the end.

steven russell

She smiled as she removed each piece and pulled out her sites. I wasn’t sure what to expect when that moment arrived, but she handled it very gracefully. I, on the other hand, felt a heaviness inside my heart. The previous few hours had provided me with a glimpse into what life could be like with an artificial pancreas…suddenly 2017 felt very far away.

While we waited for our turn to review her data, the nursing staff did some final assessments. In addition to a few other things, she was weighed and measured (again), and they inspected her skin for any signs of breakdown. They were very thorough.

We quickly inserted a new pump site and hooked her back up to her Animas Ping. Dr. Russell met with us privately to look at active insulin on board, leftover from the Bionic Pancreas…and that was it.

One minute she was Bionic. The next it was over. There was some finality in those moments. This experience was really coming to an end, and it was time to start making the journey home.

The Data

I know this is the nitty-gritty everyone is waiting for, but I need to make a disclaimer first:

I did not see any other child’s data, therefore I cannot comment on the girls’ results as a whole. I also cannot reveal my daughter’s subject ID, nor can I share any specific numbers regarding her results until after the study is published. I don’t mean for any of this to sound vague, but I do not want to risk the integrity of the study or do anything that could otherwise delay progress. Thank you for understanding!

The study was divided into two parts: 5 days of blinded CGM monitoring on Usual Care and 5 days of monitoring on the Bionic Pancreas.

Sugar was offered the same amounts of food at the same times of the day, and remained equally physically active throughout the entire camp experience.

Sugar alerted the Bionic Pancreas to administer additional insulin when she was going to eat meals only. She did not alert it to cover snacks.

Hypoglycemia

She did not have any significant episodes of hypoglycemia during the 5 days and nights she wore the Bionic Pancreas. (Hypoglycemia is defined as less than 70.) There was one dip that fell slightly below 70, but she did not require any intervention outside of the normal Bionic Pancreas glucagon function to manage it.

There was a significant amount of hypoglycemia (including a couple days with 2-3 episodes) that required intervention with fast acting glucose during the week she was monitored on usual care. This continued to be the case, despite camp staff’s intervention to her basal rates.

Hyperglycemia

She had one finger stick reading documenting hyperglycemia above 200 while wearing the Bionic Pancreas.

She had six finger stick readings documenting hyperglycemia above 200 while on usual care.

Averages

Her overall average for the 5 days on the Bionic Pancreas fell well within an acceptable target range. Based on those 5 days, her predicted A1c was about 1.5 points lower than her current A1c. (In 9 years, we have never achieved an A1c nearly that low, let alone accomplishing it without significant hypoglycemia).

Her overall average for the 5 days on usual care was also well within an acceptable target range. However, this number included several episodes of both hypo and hyperglycemia. Based on those 5 days, her predicted A1c was consistent with her current A1c.

(A perfect example of how similar averages can result in very different A1c outcomes, eh?)

THIS POST IS PART OF A SERIES DOCUMENTING SUGAR’S EXPERIENCE IN THE 2014 BIONIC PANCREAS SUMMER CAMP STUDY.

FURTHER READING:

Bionic: The Pick Up

We made the final turn, approaching Clara Barton Camp to pick up our girls, and it felt like we were moving in slow motion. As we moved past the back of their cabin to the parking lot, we were giddy with excitement. Misty and I couldn’t seem to stop the car fast enough! We hopped out and headed straight for their door…wondering along the way if we were supposed to check in somewhere beforehand, but knowing we were on a mission to get our arms around them first and foremost.

We stood at the door for a second.

They were there, smiling with their friends – oblivious to our arrival. I whispered her name at first…then a little louder…

She looked up, met my gaze, and rushed into my arms.

We cried a little. She hugged me tighter than she has in years … and then she told me she didn’t want to go home. She told me she didn’t want to take off her “BioPanky”. She asked if we had to go right away, or if she had some time.

I explained that we had all day. It was just after 10 am and the study didn’t end until 3. With that, she took a breath and then started to pull out all her parts and pieces. “Mom, I can’t wait to show you everything. This is the brain, and this is the insulin.” She was ripping the zippers open and pulling out pumps and tubing like rabbits out of a hat.

She was a very happy camper.

A very happy, grubby camper.

bionic addy (1)

The most glorious, happy, grubby camper I had ever seen.

“I chose Seahawk colors, Mom. Of course, you knew I would, right? Daddy would be so excited about that.”

–Beep Beep–

“Are you beeping, Honey? Do we need to call someone? Should I go get one of the nurses? What do you do when it beeps…”

“Mom.” She grabbed my arm. “Relax. It beeps all the time. I just ignore it. It’s doing what it’s supposed to be doing, so I don’t worry about it.”

Those words have lingered in my mind: “It’s doing what it’s supposed to be doing, so I don’t worry about it.”

The Bionic Pancreas had kept my daughter alive – and thriving – for five days and five nights. It was doing what it was supposed to be doing, and she wasn’t worried about her diabetes.

I don’t know if there has ever been a day in the past nine years that she could say she wasn’t worried about it — or, maybe not “worried” per se — but at least not THINKING about it.

Ignoring it.

Living life apart from it.

And, yet, there she was. Standing right before me, beeping without a care in the world about what her number was.

Her bunk was a mess, so we cleaned up that disaster. I made her change her shirt and brush her hair.

bionic belt (1)

(Once a mother, always I mother, I guess.)

Then it was time for a BG check and lunch.

bionicaction

She didn’t have to count exact carbs, but she did have to tell the device if she wanted a “smaller than usual”, “usual”, or “larger than usual” meal. Those definitions are individualized, and based on predetermined carb ranges the user enters into the device while setting it up. For Sugar, a “larger than usual meal” meant 80-100 carbs.

Off to the dining hall for lunch — she didn’t finish her cookie, but wanted a few more nachos, and then she wasn’t sure about this or that. Honestly, I have no idea how many carbs she actually ate between her excitement and coordinating with Ally to show us some of their camp songs/cheers. She just sat down, clapped her hands, beat the table, and ate a few bites of lunch in between. If she wanted more, she got more. When she was finished with something, she was finished. Neither of us were keeping a carb tally. It all seemed so…

Normal.

After lunch, most of the girls who weren’t in the study were gone. Sugar was trying to catch the few who were left to say good-bye and hug as many friends as she could, before eventually finding her way to the GaGa Pit

bionic gaga

Addy, Ally, and Elise…the final three girls left in the game!

I don’t even know how many games of this GaGa thing she played, but she loved it — as did all the other campers!!! Apparently GaGa is a popular game…who knew?!?!

What I do know, however, is that she played GaGa over and over and over — for about an hour and a half — without ever stopping to think about what her blood sugar was doing.  *AND* she did it after telling a device to give insulin for a “larger than usual” meal, then eating very randomly without really knowing for sure what her carb intake had been. She could have eaten too many or too few carbs, but it didn’t really matter, because the device was plugging along, doing its job…making a decision to give a little insulin, or a little glucagon, or do nothing…every 5 minutes without needing her to interrupt the game to make those decisions herself.

She just played.

And I just watched.

It was the first time since before her 2nd birthday that I witnessed my daughter simply being a healthy, happy child…running and playing carefree…without the burden of diabetes. I tried as hard as I could to savor those moments, because I knew they would be coming to an end. I studied every detail, and breathed in the sense of normalcy that accompanied each passing second. I committed everything to memory…her face was more relaxed; her movement was carefree; her smile brighter. She was experiencing life apart from the numbers — whatever they were — because she didn’t know, nor did she care.

I couldn’t get enough of watching her laughing and smiling and having fun. Nor could I seem to get enough of watching her do those things without the familiar worry in the back of my mind…replaying her previous carb counts and insulin dose/time while wondering if she should stop to check or find a snack.

She was, indeed, BIONIC.

{Stay tuned for the next part of her story. The study officially ends, she removes her “BioPanky”, and we have a chance to sit down with Ed Damiano to review some of her preliminary data.}

THIS POST IS PART OF A SERIES DOCUMENTING SUGAR’S EXPERIENCE IN THE 2014 BIONIC PANCREAS SUMMER CAMP STUDY.

FURTHER READING:

Bionic: Still Alive!

I’m excited to share more about Sugar’s BIONIC 5 days………….

Except…well…we traveled all day Saturday, and ended up in the Urgent Care on Sunday. My sweet girl came home with a little sniffle and a cough that appears to have morphed into bilateral ear infections. The pain was exacerbated with the help of landing pressure from our two flights, so that was fun. (PS – Thankful she didn’t get sick like this during camp!)

School starts Wednesday. We met all the new teachers this evening (love them!), and our 504 meeting is booked for tomorrow.

Also – laundry.

At the moment, I’m up to my eyeballs in school supplies, but promise I’ll be back with more updates once I get those school lunches packed and all the littles off to their first day of school!

In the meantime, here’s some pictures of my BIONIC girl in action…

pick up

THIS POST IS PART OF A SERIES DOCUMENTING SUGAR’S EXPERIENCE IN THE 2014 BIONIC PANCREAS SUMMER CAMP STUDY.
FURTHER READING:

Bionic: But It’s Not a Cure. (And a couple other tough questions.)

e4db5a9fc80e2ba2a7cd353ec2b59ef9 (1)

The Bionic Pancreas clinical trial device. When the technology clears the FDA and comes to market, all three components will be combined into one device. (Also, I can’t help but to notice that beautiful 123 blood glucose on the graph.)

 

The Bionic Pancreas is a closed-loop medical device intended to regulate blood glucose levels using a subcutaneous infusion of insulin (to lower blood sugar) and glucagon (to raise blood sugar). Both insulin and glucagon are hormones produced by the pancreas, and work in partnership with each other to keep glucose levels balanced.

Using a Dexcom continuous glucose monitor and bluetooth technology, a sensor communicates glucose levels with a sophisticated algorithm embedded in an iPhone. With this information, the system then makes a decision to automatically administer insulin or glucagon (or decides not to administer either one) every 5 minutes — that’s 288 times a day!

{I think I can confidently say that I make basal rate and bolus decisions far less than 288 times a day using our current insulin management regimen.}

If you’re thinking to yourself that it sounds awesome, but it’s not a cure — well, you’re right. The Bionic Pancreas is NOT a cure for Type 1 Diabetes. Rather, it is part of the evolution towards the next phase of technology for managing Type 1 Diabetes.

There are still site changes, CGM calibrations, and pump chamber(s) to fill…and, well, that’s far from a cure. Considering that I don’t foresee cure technology arriving before the goal of seeing the Bionic Pancreas to come to market in 2017, I suppose this will just have to suffice while we continue to wait.

It’s taken 50 years for insulin pump technology to evolve from this:

1stinsulinpump

to this:

10484278_10203938371436649_1918807937948728283_n

(Trivia Tidbit: Did you know that clunky backpack up there used both insulin and glucagon for managing blood glucose levels?)

As a parent who allowed her child to participate in a clinical trial for the Bionic Pancreas, there are two questions I seem to get fairly often, so I’d like to take a moment to answer them now:

1) What if the CGM reading isn’t accurate?

If you’ve used a continuous glucose monitor for any length of time, you’re probably intimately familiar with those random wayward sensor readings.

You know the ones: The ones that scream BG is “HI”, soaring over 400………………………but when you do a finger prick, you find the number is really just barely over 200 (or less).

A device that would automatically give insulin to correct a presumed 400+ BG is downright frightening.

I wouldn’t hook that device up to my child.

I would, however, hook a device to my child that had a proven record of being able to keep BGs inside a target range. So, if a little insulin here and squirt of glucagon there manages to keep the BG from skyrocketing in the first place, that’s a good thing from the onset.

In our experience — and I’m speaking only to *OUR* experience — those wayward readings are typically the result of BG movement too fast in either direction. Avoiding those rapid swings altogether keeps sensor data more accurate.

I realize there are other questions in this area — what if a site falls out? what if you lose a sensor? etc. I’ll share my take, and elaborate more, once I have a chance to review my daughter’s firsthand experience.

2) Doesn’t the use of Glucagon just add another dynamic of concern? Is it really necessary to add another cumbersome component?

The other day I encountered a question that went something like this: “Isn’t using glucagon just being reactionary?” The implication being that glucagon wouldn’t be necessary if low blood sugars were avoided in the first place.

I suppose it could be seen that way…but, considering that the use of both insulin and glucagon is how the human pancreas – more specifically the Islets of Langerhans – is designed to maintain glucose levels, I would have to disagree.

Even in healthy, normal pancreatic function, glucagon is a natural component for balancing insulin to avoid low blood sugars.

In a person with Type 1 Diabetes, insulin production is non-existent and glucagon function is severely impaired (hence the reason for those big red boxes in our emergency hypoglycemia stash).

Therefore, if we’re going to call this an “Artificial Pancreas for glucose control”, I believe it’s necessary to incorporate both components.

Otherwise, as far as I can tell, it’s just “Half an Artificial Pancreas for glucose control” — which could very well prove to be great technology…but it still isn’t mimicking the true pancreatic functions necessary for complete glucose control.

As I noted before, there have been vast improvements in technology as it pertains to insulin, and its administration, over the past 50 years.

On the contrary, there has been very little to no movement in glucagon technology over the past 50 years.

That feels very unbalanced to me.

Using glucagon does require another site, another chamber to fill, another component to deal with…but, *FOR US*, this burden does not outweigh the benefit of providing a safety net for severe hypoglycemia, minimizing low blood sugars, and improving glycemic control overall.

So there’s a few answers to some tough questions I’ve encountered on this journey, but HERE’S MY DISCLAIMER: I’m writing this post based on the research I’ve done up to this point, and without the input of my daughter’s data during her clinical trial experience. My opinions are subject to change at any time once I can get my hands on that information…and because this is my daughter’s quality of life that we’re talking about here, people. Ultimately my opinion will always be that whatever works best for her, works best for me.

PS — If you’re interested in a quick recap about how the trial is going so far, be sure to check out Kerri’s post, where the overall impression appears to be: “It works.”

THIS POST IS PART OF A SERIES DOCUMENTING SUGAR’S EXPERIENCE IN THE 2014 BIONIC PANCREAS SUMMER CAMP STUDY.
FURTHER READING:

Bionic: Insulin – July 27, Then and Now

It came to Banting in a dream one night- the Nobel-prize winning idea of how to treat diabetes with insulin. With the help of Charles Best, he finally isolated the compound that has changed the lives of millions of diabetics ever since.

On July 27, 1921, Frederick Banting and Charles Best isolated insulin for the first time.  At that time, Diabetes Mellitus (Type 1 Diabetes) was a universally fatal diagnosis with a mortality rate higher than any malignant disease ever known to man. Prior to the discovery of insulin, the most anyone with this diagnosis could hope for was a slow, miserable death by starvation within one year of diagnosis.

It was a grim picture, to say the least.

In January 1922, it would be a child to receive the first injection of insulin. No one knew for sure what to expect, and there was no way to know the correct dosage. I can’t imagine the crossroads he and his parents must have faced:

Give this injection, which has never before been administered to a human, and death could be immediate.

OR

Don’t give it, and face certain death soon thereafter. 

How horrible it must have been to stand on that corner of fate.

Leonard Thompson survived the injection (though did experience an allergic reaction) and went on to live another 13 years before succumbing to pneumonia, most likely the result of a diabetes complication, at the age of 27.

At some point in history, a child with Type 1 Diabetes had to use a glucometer, wear an insulin pump, and try new insulin compounds. A child has been injected with new needles, new lancets, and has been forced to follow evolving dietary protocols.

Children have, indeed, left their little footprints on the timeline of diabetes history.

I wonder if Frederick Banting could have fathomed the hormone he isolated on July 27, 1921 would be part of a closed loop system being trialed on children 93 years later.

Sugar went BIONIC today. At this point, I don’t have any pictures or video of her countdown to share…but I do know that she is in the most capable hands possible.

For the next five days her blood sugars will be completely controlled by the Bionic Pancreas.

July 27, 2014.

Mark that date in history.

This post is part of a series documenting Sugar’s experience in the 2014 Bionic Pancreas Summer Camp Study.
FURTHER READING:

BIONIC: 9th Diaversary

On July 25, 2005, I sat in an ICU listening to machines beeping and buzzing while watching my unresponsive baby lying in a hospital crib. Her face was puffy and her eyes were swollen closed. Aside from breathing, she didn’t move very much.

The world hustled in to silence her alarms and prick her toes for blood drops every 30 minutes. They would come around again to draw arterial blood samples or attempt to restart a failed IV. All the while, I sat there, wondering how I would be able to keep her alive without a team of nurses and doctors waiting just outside the door.

She had three IVs in place: 1 for an insulin drip, 1 for a dextrose drip, and an extra for lab draws.

Poke – Beep – Push Buttons.

Insulin up.

Dextrose Down.

Insulin down.

Dextrose up.

And so it continued…poke – beep – push buttons…poke – beep – push buttons…for the better part of 2 days. It was a delicate dance between an IV drip of insulin and an IV drip of glucose.

I will never forget the doctor’s words to me that night:

“This was the last day of your daughter’s life. If you had not gotten help when you did, you would have put her to bed and she would have been gone by morning…”

I don’t remember much else about our conversation after hearing those words. He said the road ahead would be tedious. Frustrating. Exhausting. He told me this race would be a marathon, not a sprint.

He also told me we had won our first victory, simply because she was alive.

We came so close.

On July 25, 2014, my daughter sleeps in a cabin at diabetes camp. There are still people who sneak in during the night to poke her fingertips for drops of blood. Once again, there’s a team of nurses and doctors waiting just outside the door.

Soon, she will trial the Bionic Pancreas: a continuous infusion of insulin and glucagon…and the dance will begin again.

We’ve come a long way in the last nine years. I’m excited to see where the next nine takes us.

BP 1

There is HOPE.

This post is part of a series documenting Sugar’s experience in the 2014 Bionic Pancreas Summer Camp Study.

Further Reading:

Going Bionic: The Dropoff

I must have gone through her luggage three times that morning to make sure nothing had been lost since I packed (and re-packed) her bags a over a week earlier.

It was time to drop off our girls at diabetes camp for 2 weeks. Beyond that, it was also time to get them hooked up and ready to start participating in the 2014 Bionic Pancreas Summer Camp Study. Misty and I embarked on this journey after hearing Ed Damiano present at the CWD Focus on Technology Conference 8 months earlier. The nervous energy felt surreal after so many months of preparing, planning, and coordinating to make this trip a reality.

Bionic Pancreases

A table full of Bionic Pancreases

As soon as we arrived, there was paperwork to take care of, then a physical exam, and a meeting with the camp medical staff to discuss basal rates and bolus times and all the other stuff necessary to keep these kids alive.

Height and weight, blood pressure, temperature…then another weight check to make *ABSOLUTELY* sure (because the Bionic Pancreas delivers insulin and glucagon based on a person’s weight). A Dexcom insertion, a new meter, new strips, and a Spibelt

w collage 1

Then we had two hours to kill while waiting for the initial Dexcom calibration, but there was still plenty to do. Find the cabin, pick a bunk, unpack, lunch in the dining hall, swim test, visit the camp store, picture, activity selection…it was enough to keep us busy for 2 hours for sure!

Words really can’t accurately describe how beautiful camp is. Not only the accommodations, but the experience of being surrounded by so many adults with insulin pumps. The people in the dining hall, the people doing the swim test, the medical team. There were pumps everywhere.

Yes, camp is BEAUTIFUL.

w collage 2

And then it was time to give the study an official start time. Sugar was assigned to the second group of participants, which means she will wear the entire Bionic Pancreas system for five days, starting next Sunday. Ally, however, was assigned to the first group, which means she will wear the entire system for the first five days of camp.

Watching that countdown, knowing each of those girls were about to be completely controlled by a closed loop system was incredibly emotional. I’ll expand on those thoughts and feelings later, but Misty talks about her experience in that moment HERE.

When it was time to say good-bye, part of my heart stood still.

I know she will be a little more grown-up with more confidence, and more independence under her belt when I return to pick her up. And, while I also know this is the ultimate goal when raising each of my children, I couldn’t stop the tears from falling as I walked away.

In our last minute together, I held her close, felt her soft skin on my cheek, and nuzzled my face in her hair.

w and a 1

Good-bye, sweet girl.

I am so proud of you.

w and a 2

I’ll see you in two weeks.

This post is part of a series documenting Sugar’s experience in the 2014 Bionic Pancreas Summer Camp Study.

Further Reading:

Going BIONIC
Addy and Ally: A BIONIC Friendship

See more pictures HERE.

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