A Glimpse Into the Future of T1D

pancreas pillow

Isabella and her “I Heart Guts” Pancreas Pillow

On Tuesday, Kristina and I had the opportunity to attend a JDRF research update featuring Tom Brobson, National Director of Research Investment Opportunities. We were excited to hear about the research going on at JDRF and, selfishly, what it means for our daughter now and in the future.

On the way to the event, Kristina mentioned that while she was changing Isabella’s insulin pod in the morning before school, Isabella looked at her and said, “Mommy, I don’t want to wear a pod anymore.”

My heart literally sunk and I felt tears welling up in my eyes. Isabella has never said that. She’s been on her pump for about 8 months or so and for the most part, she understands why she wears it and understands that she doesn’t really have a choice. But, she doesn’t fully understand that it will never be a choice…she may eventually choose a different pump, or may even choose to go back to injections…but the harsh reality is that she literally needs her insulin pump to survive every day of her life. That is, until a cure, or at least something that “feels” like a cure, is found. I began thinking, hoping and praying that we would hear promising news from Tom Brobson at the event.

Tom started his talk by saying, “I don’t have any extra letters after my name like PhD or MD…but I do have T1D.” Tom was diagnosed with type one diabetes about 10 years ago, at the age of 44. He joined JDRF about a year later, hoping to do his part to find a cure for himself and many others. As he spoke passionately about several key research initiatives, it became very clear that Tom was not only passionate about JDRF and the great work the organization is doing, but he was also passionate about making the lives of those living with type one better, including his own, on the path to a cure. He became somewhat emotional a couple of times as he spoke; this isn’t just his job, but his life!

Tom spoke about three main research initiatives, Smart Insulin, the Artificial Pancreas project and Encapsulation. Each of these initiatives have gone through various stages, navigating through the lengthy and quite costly FDA approval process. I expected to hear about how these three initiatives were showing very promising results in mice, cats or better yet, monkeys. The great news is that all three of these programs are currently in the human trials stage or entering human trials soon!  This means that we are that much closer to a dramatic change in Isabella’s life!

Smart Insulin has been in the news recently as Merck, one of the world’s largest pharmaceutical companies, announced earlier this week their plans to begin clinical trials. Smart Insulin, which was originally backed and supported by JDRF, is a form of insulin that is injected perhaps once daily and essentially turns “on” and “off” according to glucose levels. No more glucose checking. No more carb counting. No more dangerous lows. Isabella’s body could get the insulin that her pancreas can’t produce, without any additional effort or monitoring. This would be huge! As Tom put it, this could be “a game changer.” Not only for those living with type one, but also for those living with type 2 who aren’t often prescribed insulin. That’s all great news!…but unfortunately, Smart Insulin is still many years from becoming a reality.

tom brobson

Tom Brobson, JDRF National Director of Research Opportunities, showing us the artificial pancreas technology.

Tom also spoke at length about the Artificial Pancreas project. The Artificial Pancreas is not what it may sound like (no, it’s not a lab-produced pancreas that’s implanted into your body to replace the “bad part”). It’s essentially a computer program that can run on a smartphone…and essentially functions as a pancreas to ensure insulin is adjusted up or down when needed.

Tom has personally participated in several trials. He talked about one trial in which he was hooked up to the system and then was told to go eat a Five Guys burger and fries, which he gladly did, although he was quite skeptical at the time that the system would actually be able to keep his glucose under control (certainly not as good as he could on his own!). To his surprise, after eating a giant burger and fries, the system was able to keep his blood sugar under 200 and then bring him back within his normal range in a relatively short amount of time. There’s a word to describe this: amazing!

The system has performed extremely well in clinical trials. Tom mentioned that he is generally very tightly controlled and tends to be “out of range” only 4-5 hours per day. When he was on the system, his “out of range” time dropped to about 40 minutes per day. A new trial is starting soon and people will basically be handed an iPhone with the system and told to go live their lives for 6 months. After the trial, the hope is that the data and results will be sufficient to obtain FDA approval for the Artificial Pancreas. This could be 2-3 years out…while not a “cure,” it would certainly change Isabella’s life and enable her, and us, to live our days and nights without constantly thinking about her type one diabetes.

I asked Tom what he felt was the most exciting and most promising initiative underway at JDRF, fully expecting him to say the Artificial Pancreas. But, instead he talked about “Encapsulation.” To describe it, used the analogy of a shark cage. If you want to observe sharks, you could get into a cage where you would be fully protected and unharmed from sharks that want to eat you. The concept behind encapsulation is very similar…JDRF is working with partners to be able to insert beta cells into a small medical device that would be implanted into the body and protect the cells from other dangerous cells that want to destroy them. The beta cells would produce all the insulin you would need for up to 24 months. This also wouldn’t be a cure…but two years without worrying about diabetes is pretty damn close! This is still a long way off before it could be used as a treatment, but very exciting nonetheless.

So, the bottom line is that we heard a lot of very exciting stuff that inspires us and gives us hope! In speaking about his view of a cure, Tom said, “someday someone will write a book about the cure for type one diabetes and I wish I knew what chapter we were on now.” Don’t we all.

I had an additional opportunity to meet with Tom again Wednesday morning in a smaller group session at our Northeast Ohio JDRF Chapter Board meeting. He talked about the research initiatives and the fact that they are getting closer and closer to reality, which also means they become much more expensive. In talking about JDRF’s efforts to date and current efforts to push into the future, he said, “we’re the type that will take this on and change the world…but we need your help.”

Please help and join us on our journey to a cure for type one diabetes. Together, we can change the world!

-Greg

 

Suiting Up

isasmile

“Celebrities with Type 1”

“Type 1 Famous People”

“Professional Athletes with Diabetes”

After Isabella’s diagnosis I searched. I searched…and I hoped.  I searched and I found what I had been so sure existed.  And I was relieved. Relieved to know that our daughter had “them” on her side.  She would have “them” to provide the name we needed to trigger some recognition…to trigger some action. I knew that as long as we could count on these people, there was no way Isabella would be living with Type 1 Diabetes ten years from now.

It’s their responsibility, after all…isn’t it?

This morning R&B star Usher announced on the TODAY Show that one of his young sons was diagnosed with T1D this past year .

“This year has been really one of my hardest years – I lost my grandmother, my son was diagnosed as being a type one diabetic. It has definitely been a difficult one for me, man,” he said. 

And with that admission, we scored big. Suit up, Mr. Raymond, and take your place alongside Ray Allen, Nick Jonas, Bret Michaels, Jay Cutler and the handful of others whose families have been turned upside down by a T1D diagnosis. Suit up and get ready for one of the most important gigs of your life.  Suit up and be prepared to be an advocate for…

Your son.

Yes, it’s a bonus for us to have someone like you on our team. Yes, the exposure your son’s diagnosis will give to this disease affecting so many of our families will help us to raise awareness and educate others. Yes, we hope your celebrity status will help us raise funds to aid in our search for a cure.

But that’s not your job right now.

Right now you’re a dad to a son who needs you…more than he’s ever needed you before. And that, my fellow substitute pancreas, is your job.

And when you’re ready, your team is here waiting for you…and we’re all warmed up.

Cheers to Changing the World~
Kristina

 

 

 

What I Signed Up For

Trio

“I’m so sorry…I know you were just here.”

“It’s fine. It’s what I signed up for.”

I jump in my car, still warm from my return trip picking up a sick son just 30 minutes earlier, and head to the preschool to tend to an insulin pump that is screaming its head off…the 6th insulin pod in a box of 10 to bite the dust before the 3-day window closed.

But, this is what I signed up for.

Last month I made a quick stop at Macy’s and, as has become customary since our trio arrived, I spent the entire time flipping through the clearance rack in the kid’s department.

I stepped up to the checkout counter, my arms filled with Dora jammies and Hello Kitty flair, proud of my deal-seeking skills.

 

“Wow! Do the girls you are buying for know that they’re getting some cute new things?”

“Actually, these are for my daughters.”

“Oh, you have twin girls?”

“Well, I have triplets…two girls and a boy.”

“Holy cow! What did you do when you found out you were having TRIPLETS?!? I would have hung myself.”

And…scene.

The sad truth is that this isn’t the first time someone has said something like this to me. In fact most people I meet who learn that we not only have triplets, but that one of them also has type 1 diabetes, express their sympathy to me in varying forms.

But, this is what I signed up for.

When I was young I used to say that I didn’t know if I wanted to have children…I knew I had a selfish side. I wanted to be successful professionally. I wanted to travel. I wanted to have the freedom to do what I wanted, when I wanted.

And then things changed. I wanted to be a mom.

But it wasn’t that easy. Not easy at all. Like, 5 years not easy.

It’s not until you realize that there’s a possibility… a real possibility…that you can’t have kids that you realize whether or not you are meant to be a parent. I realized I had been wrong.

I wanted someone to call me “Mommy”. I wanted someone to ask me to tuck them in at night and assure them that there were no monsters in the closet. I wanted someone to ask me why the moon goes to sleep during the day and why Donald Duck doesn’t wear pants.

That is what I signed up for.

When people ask me “How do you do it?” the answer is actually pretty simple…how could I not? I don’t know any different.

When you become a parent you are making a commitment to one thing: to love your children…no matter what. We don’t get to choose what challenges come with parenthood. We don’t get to decide what we can handle and what we can’t…that’s done for us. What we do get to play a role in is HOW we parent and HOW we show our children that we love them.  Did I sign up for diabetes? Of course not.  But I did sign up for being a mom…diabetes or not.

I am constantly amazed by the number of friends we have whose children are facing challenges including type 1 diabetes, Spinal Muscular Atrophy, Apraxia, severe food allergies, and many more. Did any of us know or envision our children’s lives being consumed by these challenges? No way. Did any of us know we would soon become advocates, fundraisers, and educators about these diseases/disorders? Not a clue.

But, we have…because that’s what we signed up for.

Cheers to Changing the World~

Kristina

 

Offending ‘Miss Manners’

 

BGCheck

Earlier this week advice columnist Judith Martin, whose Miss Manners column is carried by more than 200 newspapers worldwide, responded to a reader’s question regarding whether or not those with diabetes should check their blood sugar in public settings.  Her response was a column entitled “Do Diabetic Testing in Private” and included the following paragraph:

Absent an emergency, medical applications (like bodily functions and grooming) are properly done out of sight — meaning in private or in a restroom — unless they can be done so surreptitiously as to be unrecognizable as such.

As a father of a child with type 1 diabetes, I felt I needed to respond to her and, after writing, decided my message should be shared publicly with all of you.

——————————–

Dear Miss Manners,

I read your recent response to the gentleman inquiring about testing his blood in public. While you are certainly entitled to your opinions, your response shows  ignorance and lack of education about type one diabetes (T1D), as well as a lack of compassion for those living with T1D and their caretakers. As a father of a three and a half year old with T1D, I must say that I was completely appalled by your response.

My daughter, Isabella, was diagnosed with T1D in August 2012, just two weeks before her second birthday. She spent four long days in the hospital after her diagnosis while the doctors pumped her tiny body full of insulin. During that time the doctors and nurses educated us about type one diabetes, an autoimmune disease that we knew nothing about until that moment. We learned that had we not caught some of the symptoms early on, our daughter may have slipped into a coma or worse in a matter or days. We learned that our daughter’s life would never be the same. We also learned that we would have to check her blood glucose levels at least 8-10 times per day, count every carb that she consumes and give her insulin injections at least four times per day.

 This became Isabella’s new “normal” life. What we know, and you likely do not, is that failure to closely monitor her glucose, properly count carbs or administer precise amounts of insulin could ultimately lead to our daughter’s death. Therefore, I view every single moment of every single day (awake and asleep) as an emergency. Our daughter’s life literally depends on frequent blood checks and insulin. We have always checked Isabella’s blood in public and administered insulin injections in public, as well. We have always taught Isabella that T1D is a part of her life and she should never be ashamed or embarrassed about it, nor ever let it define her. And, even at three and a half years old, she has embraced her diabetes, checks her own blood sugar and loves talking about her diabetes with anyone that will listen. We would never suggest that she stop doing any of those things because there is a chance that it might make others uncomfortable.

Isabella now wears an insulin pump that is physically attached to her body at all times. We are often asked about the device, which gives us an opportunity to educate others and raise awareness at the same time. I would never even think about covering it up simply so that no one else can see it (so they don’t become uncomfortable about my daughter’s diabetes, I suppose, according to your logic).

The reality is that Isabella is different than other kids, including her triplet brother and sister….however, we would never make her feel different and ashamed by hurrying her off to the restroom every time we have to check her blood sugar when we’re out in public. We believe it is extremely important that she is completely comfortable talking about her diabetes and the effects it has on her life, physically and emotionally, now at only three and a half years old and as she gets older.

We want Isabella to share her story with the world. As her parents, that’s exactly what we have been doing for the past year and a half and will continue to do so until a cure is found for our daughter and millions of others living with this terrible disease. I can assure you that observing a simple finger prick is nowhere near as uncomfortable as what my daughter and millions of others go through every day of their lives.

Your column only motivates us even more and reminds us that we still have a lot of work to do to educate others and raise awareness.

-Greg Dooley

www.InspiredbyIsabella.com

#TeachableMoments

Screen Shot 2014-02-14 at 2.06.08 PMWords can’t express how jazzed (yes, I said jazzed) Isabella and her siblings were this morning for their big Valentine’s Day party at school. It was so wonderful to see the true excitement on their faces when I told them they could FINALLY give their Valentine’s to their classmates.  I asked Isa if she would share her treats with me when she got home from school and a huge smile spread across her face.

“I’m going to get treats? What kind, mom?”

“I don’t know, chica.  I think you’ll probably get some cards from your friends and maybe some candy or cookies.”

“YAY!!!!!”

And just like that her day was made.

It’s days like today that I’m glad Isabella can’t read yet. It’s occasions  like Valentine’s Day and Halloween when I get to witness just how much misunderstanding and lack of education there exists about diabetes, both Type 1 and Type 2.

I am a regular Twitter user and we use our @InspiredbyIsa account to share info about our experience with T1D and  follow our friends in the Diabetes Online Community (DOC).

Two hashtags today, when combined, made my heart sink: #Diabetes #Valentines.

I don’t think I need to explain why…instead I’ll just share a sample of what I saw with all of you.

This. This is why we are doing what we are doing to raise awareness.

And you know what?

Today Isabella WILL come home with diabetes.  Just like she has for the past 535 days…just like she will until a cure is found. And she WILL share her treats with me.

Cheers to Changing the World~
Kristina

Why We All Need A Patty

Isa and Addison

Most people would look at this photo and see two little girls, happy and smiling…without a care in the world. What you’re really looking at are two AMAZING 3-year-olds fighting the challenges thrown at them by type 1 diabetes.

We had an awesome day with little Addison and her family today where we enjoyed pizza,  pump site changes (one planned and one not!), high (400) & low (48) blood sugars, and the beginning of an adorable friendship between two toddlers who’ve found a friend that “has didabeeeteees too!”

Watching Addison ask Isa if she wanted stickers to decorate her new insulin pod and holding her hand during her site change…and seeing Addison timidly show Isa her continuous glucose monitor adorning her little belly…it made me realize just how much it matters to have someone by your side who’s fighting the same battle as you. And I’m not just talking about the girls.

When Isabella was diagnosed we were in the hospital for less than 24 hours when we had a knock on our hospital room door.  In walked a woman that, though I didn’t realize it at the time, would set the scene for how I would be as a mother of a child with T1D.

Over the next hour this woman, Patty, told us about her life as a mom and wife to children AND a husband with Type 1.  She gave us a book of information about diabetes care she had photocopied from when one of her children was first diagnosed. She told us about diabetes camps and the difference they had made in her children’s lives.  She smiled. She laughed.  And her hair and makeup looked great.

She was normal.  

I wanted to be like Patty.

Before Christmas this past year a classmate of Isa’s was diagnosed with Type 1.  Up until that moment Isa had been the only child in her school with diabetes.  I didn’t know the family of this newly diagnosed child and had heard they would be moving and leaving the school over the holidays.  The day before the holiday break I went to the school to pick up the kids and, almost as if it was meant to be, the little boy’s father was there picking him up.  I am a firm believer in fate, and this was it.  It was my turn to be Patty.

I passed our contact info on to the dad and encouraged him to reach out to Greg or I if he or his wife needed anything. I told him about our experience with the OmniPod pump and about the Children with Diabetes Friends for Life Conference we attended in Orlando. I told him we were just a year post diagnosis so we were still learning, too, but that we could certainly provide advice based on our short experience. I was sure I’d return home that day to an email from this family with a list of questions I could answer. 

I was wrong. I was obviously no Patty.

Today while chatting with Addison’s mommy and daddy I was reminded of how important it is for parents of T1D kids to connect. To share stories of what’s worked and what hasn’t.  To commiserate about those unexplained lows and to curse the technology that, in reality, is helping us keep our children alive. To beam with pride when our kids exhibit bravery we could never muster.

We all need a Patty to remind us that our lives as our kid’s substitute pancreas won’t be easy, but to keep in mind that our kids will take their cues from us. It’s up to us to assure them that their diabetes, though a part of who they are, doesn’t define them. It’s up to us to let them know that there is an Addison somewhere out there to hold their hand.

So, for those of you who are newly diagnosed, or those who have just gotten the courage to seek out some support, we are here. I may not be a Patty but I can assure you that my hair and makeup look great, too.

Cheers to Changing the World,
Kristina

 

World Diabetes Day!

November is Diabetes Awareness Month and each year on November 14th, millions of people around the world celebrate World Diabetes Day.  Created in 1991 by the International Diabetes Federation and the World Health Organization, the day is celebrated with advocacy and awareness initiatives such as walks, monument lightings (including the Great Wall of China, the Christo Redentor in Rio,  the CN Tower in Toronto, the Empire State Building, the Puente de la Mujer in Argentina and the London Eye!) and free diabetes screenings.  The date November 14th was selected for World Diabetes Day in honor of Sir Frederick Banting, one of two men credited for the discovery of insulin and in 2007 it became an official United Nations Day!

So what will we do to celebrate Diabetes Awareness Month and World Diabetes Day?  We want YOU to help us!  Isabella’s super-creative aunt, Christy, founder of Christy Burke Designs has created our very own Inspired by Isabella version of the World Diabetes Day logo and we hope you’ll share it!  Just save the image below and upload it as your profile photo in Facebook, Twitter…or both!

As always, thanks so much for your support of our journey to a cure for type 1 diabetes…we truly couldn’t do it without all of you!

WDDlogo (1)

Why It’s Not Funny

 

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I get it.  I really do.  I get it because I was once just as unfamiliar with diabetes. I get it because at some point in my life I’m sure I’ve made some joke that undoubtedly served as a face-slap to an entire subset of the population who have been affected by whatever it is I thought was hilarious.  I get it.

But here’s why it’s not funny.

Someone shared this blog post on a Facebook group we belong to for parents of kids with type 1. They shared it with the hope that the T1D community would comment on the post and explain to the author how her title just perpetuates the stereotype that diabetes is caused by eating too much candy.  Many parents, rightfully hurt and some outraged, commented on the post with stories of their young children, some diagnosed with type 1 even before eating solid foods, let alone candy. Others shared their frustration about the lack of distinction between type 1 and type 2 diabetes; while others offered words of support for both T1’s and T2’s.

And you know what happened? The author added this disclaimer:

Now, I know that you can’t “GIVE” your child Type I Diabetes. Type I Diabetes, in children isn’t caused by a high amount of sugar in the diet. However, Type II Diabetes is another story. Fifteen years ago, type 2 diabetes in children was almost unheard of. A 2007 study in the Journal of the American Medical Association estimated that there are about 3,700 new cases of type 2 diabetes a year among youth in the United States.

And she missed the point.

Yes, many parents of kids with type 1 were upset by her original post, myself included.  However, the responses she received were not intended to simply make sure her readers were aware of the difference between Type 1 and Type 2.  The responses were intended to let her know one thing: our children’s livelihood is not a joke.  Regardless of whether someone has Type 1 or Type 2, this blog’s title is hurtful and just perpetuates a stereotype about what is a very serious disease.

The reality is that we have a lot of educating to do…not only about diabetes, but about kindness and respect. It’s easy to make assumptions about things we know nothing about.  It’s easy, and I get it.  I’ve done it, too.  What makes the difference, though, is owning up to it and making the commitment to educate yourself about what you don’t know.

However, there is one thing I do know: our Halloween is gonna be awesome…candy and all.

Tricks and Cheers to Changing the World~
Kristina

 

 

Silver Linings…

Betsy 2013 1509Just over a year ago Greg and I sat in our kitchen in Mexico City, laptop perched on the kitchen counter, deciding what we should set as our fundraising goal for our Team Inspired by Isabella’s first JDRF Walk to Cure Diabetes.  We had just returned home from the hospital after Isabella’s diagnosis and were ready to hit the ground running with doing something, anything, to help our daughter and raise awareness and funds for a cure.

Greg began completing our team registration and set our goal at $1,500.  I cringed and told him I thought maybe $1,000 or even $800 was a more realistic target.  We were, after all, just 3 weeks out from the walk date and we couldn’t expect people to just donate to a cause about which they knew nothing.

But I was wrong.

In just three weeks we raised nearly $6,500.

Sitting at our kitchen table this spring deja vu set in as I once again second-guessed what we had decided we would set as our fundraising goal for this year: $7,000.  We had time on our side this year and worked hard to share Isabella’s story with everyone we knew.  Our move back to the U.S. also afforded us the opportunity to reach out to our Ohio friends to organize a large team of walkers.

Three weeks ago we had raised just 53% of our fundraising goal and our hope of having walkers en masse looked bleak.  We had heard from others who had been doing these walks for many years say that “every team runs its course”.  We half-wondered if this had already happened to ours…Isabella’s diagnosis was no longer fresh in people’s minds and the novelty of supporting our cause had probably worn off.

But we were wrong.

Fast forward to today at 9am as we began our 2nd Walk to Cure Diabetes:

  • We didn’t raise $7,000…we raised nearly $9,000.
  • Of the 376 registered teams we were the 12th HIGHEST fundraiser.
  • We didn’t have a large team of walkers…we had the 3rd LARGEST team at the walk.  Fifty-five AWESOME people, to be exact.
  • We didn’t receive donations from some of the same people as last year…we received donations from nearly ALL of them and many others.  In fact, a total of 97 donations were received to support our team.
  • We entered the inaugural JDRF Walk to Cure Diabetes #iwalkfor video contest…and we won!  Anyone attending the Cleveland CAVS game December 7th will get to see our video played on the Jumbotron AND see our family center-court during the game!  (Click here to check out our winning video!)

So, if anyone asks us if the novelty of our cause has worn off, our answer would be this: type 1 diabetes is the definition of novel and no two days, let alone two hours, are the same.  So no, the novelty of our cause has not worn off and won’t until a cure is found. And as for our team “running its course”…not even close.

Cheers to Changing the World~
Kristina

Monkeys Always Make Things Easier to Explain

Coco ReadingImagine trying to explain Type 1 Diabetes to a 3-year-old. Now imagine trying to explain it to a whole class of 3-year-olds.  Sounds like a challenge, right?  Well, challenge accepted!

For weeks I’ve fielded questions from Isabella’s curious classmates as I checked her blood sugar and gave her insulin shots.  With Isabella starting on her OmniPod pump, I was thrilled that her teacher let me come in and read two books to her class about a new Disney character with T1D: Coco the Monkey. Not only does Coco have diabetes, she also wears a pump…just like our Isa!

The books follow Coco as she begins school and as she prepares to attend Goofy’s birthday bash.  I learned during our book reading  that 3-year-olds have very selective hearing (you’d think I’d be VERY familiar with this already) as the kids yelled out things like “My birthday’s next week, too!” and “I met Pluto this summer!”  Regardless, the kids did great and I loved seeing how proud Isa was to show off her pump to her friends.

If you are looking for a way to “explain” your child’s type 1 diabetes or their insulin pump to young classmates or friends, I highly recommend you check out these books.  Though not available for purchase, you can ask your child’s doctor for copies.  More info about the Disney partnership with Lilly can be found here: http://spoonful.com/type1.

Cheers to Changing the World,
Kristina