TrialNet – Prevention Stage Begins

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The box came in the mail the other day.  It needed to be refrigerated and the study coordinator was a little anxious to know when I had received it.  The truth is, I didn’t want it, or to have to think about it.

But I knew I had to open it, and prepare myself to have the conversation with my daughter.

IMG_4938The box of bottles of pills, either the placebo or the active drug, the instructions and a pill box. It was really that simple.  Keep them in the fridge, take one every day, and let us know if your child gets sick.

But the emotion tied to this is much greater.  While I have never really been upset that I live with T1D, I don’t wish it upon anyone else, and I certainly don’t wont my daughter to live with it.

But that is what parenting is all about.  “Manning Up” to the things your kids need you to.  “Stepping Up” to the plate when your kids need you.  Doing what you can to protect your children.  My emotions, weaknesses and fears don’t count here.  They don’t mean a thing. The only thing that matters is whether or not Abby is ok.  That’s it.

So, my wife and I had the conversation with her, and it went something like this:

Me: “Abby, your study is a little different from Jake’s”

Abby: “Aww man, do I have to go for more blood work already?”

Me:  “No, your study requires that you take a pill once a day.”

Abby:  “Oh, that’s it?”

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And it was that simple.

One step at a time, one pill a day.  Immeasurable amount of HOPE here at the Chadwick house.

A Parents Biggest Nightmare

We knew.  We knew it was a possibility.  For either Jake or Abby, one or the other.  Or both.  And both is still not out of the question.

We intended on participating in the TrialNet study, with my old friends from Children’s Hospital of Pittsburgh, because we wanted to give back, we wanted to stay aggressive with our kids IN THE EVENT something were to happen.

The TrialNet study (http://www.diabetestrialnet.org) is a prevention study that is broken into two phases:  1. Observation, and 2. Active Prevention.

Abby has been in the study since 2010 and gets annual blood work to test for the Antibodies that are known to kill islet cells and cause T1D.  The antibodies are called: GAD65, ICA, ICA512, and MIAA.

As a child of someone with T1D, your chances of developing T1D is 4-5%.  Once you produce two (2) of these antibodies, your chances go up to 50%.  Both of my children have been developing two (2) antibodies for the last couple of years.  At this point, Abby’s body is attacking itself.  The immune system is producing four (4) antibodies that are very successful at killing islet cells.

It is not a matter of if, it is a matter of when.  What do you say to your 7 year old daughter about this?

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Reality –  There’s an incredible amount of emotions that my wife and I have experienced over the last month since we received the results.  And she hasn’t even been diagnosed yet.  It could happen in the next day, or not for 10 years.  The likelihood is that it will happen sooner than later, but there is no way to know.

The reality is that my wife and I have the ability to get our head wrapped around the idea of her living with T1D.  We are not going to be surprised by the diagnosis, and we can plan (as much as one can) for the day when it happens.

The reality is that there is better information and better technology than when I was diagnosed in 1982.  Outcomes for those living with T1D are fantastic.

The reality is that none of this matters to a mom of a T1D at 2am when they are testing their child’s blood glucose levels.  None of this matters to the child with T1D when they just want to fit in.  None of this matters to a women with T1D who wants to have healthy children of her own.

Parenting a T1D:

I have had a unique perspective, living with T1D for the last 30 years.  However, I have not had my mother or father’s experience.  I have never had to go to work after being up half the night worrying about my child’s high or low blood glucose levels.  I have never had to have a conversation with my daughter about how to talk to their coach about having T1D.  I have never had to support her as she wonders if boys will ever ask her out on a date.

Truth is, my wife and I have a lot of parenting to do.

The Prevention Part of the Prevention Study:

TrialNet’s active prevention portion of the study randomize’s Abby into one of the two groups in the study: active drug, or the placebo.  It is double blind, so we will not know what she is receiving.  The drug is oral insulation, and taken orally every day, has shown to have the ability to postpone diagnosis up to seven years.

Oral insulin supposedly acts like a vaccine to temporarily keep the active antibodies from destroying the islet cells.

I HOPE that this is all for naught, and my daughter is the 1:1,000,000 (I’m making this number up, as I hope there’s a chance it won’t happen) that doesn’t get the disease.

I HOPE oral insulin is a good answer for my daughter.

I HOPE I am prepared to help my daughter navigate the world of living with T1D as my parents did for me.

I HOPE for a cure.  As soon as we can get it.  But until then, we will fight to fund the research needed to improve care, and possibly prevent the diagnosis for all those who are diagnosed or will be.

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TRIGR – 10 Year Antibody and Glucose Tolerance Test

The fear of any parent with a chronic disease is that they will pass it on to their children.  While I have learned to live with T1D, and my wife has learned to tolerate me…..The last thing we want is for our children to bear the burden of living with the same hurdles in life I have had to.

The TRIGR study is a prevention study focused on the comparison between breast fed children, during the first year after birth, and those who drink cow’s milk based formula.  The hypothesis is that the cow’s milk based formula, having more complex proteins than human milk, tax the system and increase the risk of developing diabetes for those children with the genetic markers, and therefore, are already at risk.

Knowing the risk, we enrolled in this study through my childhood Endocrinologist and researcher, Dr. Dorothy Becker.  She always told my parents and I, “My job is to myself out of a job”.  That’s the same line she uses today.

They took a sample from the cord blood at birth, to determine whether or not Jake had the genetic predisposition, or the marker, to develop T1D.  Honestly, I enrolled in the study, not to have the annual blood work done, but to hopefully get kicked out of the study because he didn’t have the marker.  No such luck.

 

 

 

 

Jake - After 1st Blood Draw

So, every year, around his birthday, Jake endures a blood draw to test his blood glucose and to have his blood tested for antibodies known to cause T1D.  There are five (5) antibodies, that in combinations of 2 or more, are known to increase the risk of developing T1D.  The risk rises from 5% to 50%.

Two years ago, Jake started developing two (2) of the antibodies and those same antibodies were visible last year as well.  I’m not flat out saying that my wife and I are a nervous bunch, but there is a reason we fight to raise money for JDRF.

 

 

 

 

 

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This year, in addition to the blood draw, he also had to have a glucose tolerance test.  Similar to the pne high risk Mom’s take when they are tested for gestational diabetes.  It is fasting, they take your blood, then make you drink a gross, sugary drink and then return for more blood later.  He drank the drink and hardly complained.

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So, random thoughts.  My daughter also has the same antibodies being produced by her immune system.  She has been tested in the TrialNet study.  I wonder…..are these the antibodies that my body produces?  Or produced prior to my diagnosis?  We don’t know.  I’ve never been tested for antibodies.  When I was diagnosed 30 years ago, they didn’t have antibody tests.

 

 

 

 

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The first blood draw showed a blood glucose of 90.  The second draw, unfortunately, they didn’t test his blood at the house.  They will be doing so at the lab.  So we wait for the results.  We also have to wait 4-6 weeks for the antibody results to come back.  Again, not too anxious…yeah right.

The benefit of having our children in these studies is that they are finding, for those who are diagnosed with T1D, they are being diagnosed without traumatic events.  Instead, they are being diagnosed during or after these screenings, prior to any significant diminishing health status and without ER visits.

Within the next year, they TRIGR research team is going to be releasing the first round of results.  The intent is to gain knowledge about how we might be able to reduce the risk for those we know are at risk.  And with 80 people being diagnosed every day (40 kids and 40 adults) there is an increase in prevalence, and this information is severely needed.

For more information on the JDRF, please visit www.jdrf.org

To make a donation to a JDRF fundraiser, please visit: https://runsignup.com/Race/NJ/LoganTownship/MikesMilesfortheJDRFCedarvaleWinery5K1MileFunRun

National Day of Service – A Plea for Continued Change

Today was an incredible day.  Regardless of political persuasion, you have to have respect for the fact that the President of the United States was sworn into office today. (Ok, yes, he was sworn in yesterday in a private ceremony because the constitution says that the POTUS is to be sworn in on the 20th day of January.)

And it was Martin Luther King Day.  A day to remember one of the most historic movements in United States History.  In a time when many of our heroes are falling down, it is wonderful to remember a man who made so much positive change in the world.  Dr. King once said, “Life’s most persistent and urgent question is, ‘What are you doing for others?'”

And this is what has spurred the President’s National Day of Service.  Today is a day for people to come together and serve to help their friends, neighbors and community.  I urge you to take some time and give back.  Do it in a way that makes sense for you.  What do you care about?  Who is important in your life?  How can you make positive change in the your world?  Small gestures make big changes for the people you serve.

It is no secret that my service lies with the JDRF.  You hear of what my family faces on a daily basis due to living with T1D in the family.  This is a 24/7 disease with no breaks.  There is no time off.  Ok, maybe I received some time off during the artificial pancreas trial, but that is not a normal situation available to everyone, and if I am to share one statement from that experience?  “Every T1D deserves to get some time off!”

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So I pose the question, “Is a National Day of service enough?”

I just am not sure that is the case.

So, I will ride, and run to provide my service to the JDRF.

And here are the events I will do:

Tobacco Road Marathon, March 17th, North Carolina.  Donation:  http://jdrfevents.donordrive.com/index.cfm?fuseaction=donorDrive.participant&participantID=15437

April Fools Half Marathon, April 7th, Atlantic City, NJ. Donation:  http://jdrfevents.donordrive.com/index.cfm?fuseaction=donorDrive.participant&participantID=15620

Mike’s Miles 5k at Cedarvale Winery, April 20th, Logan Township, NJ (My wife organizes this one):  Registration:  https://runsignup.com/Race/NJ/LoganTownship/MikesMilesfortheJDRFCedarvaleWinery5K1MileFunRun

JDRF Ride to Cure Diabetes, July 27th, Burlington, VT.  ride.jdrf.org

JDRF Ride to Cure Diabetes, September 21, Nashville, TN.  ride.jdrf.org

If you are able to give back to your community, I urge you to do so.  There are so many ways:

1. Coach your kids ball team

2. Serve at your church or synagogue

3. Volunteer with a local non-profit you believe in

If you are part of the T1D community, I believe you should volunteer with the JDRF.  Those of us living with T1D over the last 40 years have reaped the rewards of volunteers before us serving diligently and tirelessly with the JDRF.  Knowledge gained is from their sweat and determination to make it better for those that came after them.  They have succeeded.

Find a way to use your skill sets that fit you.  The above list has developed from my skill sets.  I enjoy health and fitness activities.  I am a runner and cyclist because I need to focus on reducing my cardio vascular risk factors.  The JDRF needs coaches and volunteers to help with their endurance programs.  Good fit.

If we, the T1D community, don’t pick up the slack and volunteer and fight for ourselves and our family, who will?  Why would anyone fight for us if we don’t fight for ourselves?  THERE IS NOT A CURE, and WE NEED YOUR HELP.

Today I am asking everyone in the T1D community, if you haven’t worked with the JDRF, to volunteer with the JDRF and help them make positive change for the world we live in.  Fight for yourself, and fight for your family.

2012 – Thank You!

I just wanted to take the time to say Thank You to all of the Chadwick Family, Mike’s Miles, JDRF Ride to Cure and South Jersey JDRF supporters.  2012 was a successful year and it was all due to your willingness to give.

What you saw in 2012 is an example of what kind of research the JDRF is supporting in the Artificial Pancreas, TrialNet and TRIGR.

These are studies my family is closely tied to because 1.) I would love to be able to control my blood sugars to the range of 6.5 – 7 without any effort (The range seen in the studies I participated in, for adults in the study).  2.) My children are at an increased risk of developing T1D, and I would do just about anything for them not to have to endure what I have.

However, your support is even more special to my family because we, and the JDRF are fighting for a cure for T1D.  They have been focusing on Immune and Beta Cell Therapies.  And until they find a cure, they are helping me and my kids (if they are diagnosed) stay healthy until there is a cure.

What's on the Horizon?

 

Everyone with T1D is scared of what is over the next hill, whether its a steep hill or a South Jersey hill.  The JDRF is helping those of us living with T1D get rid of the fear of what’s over the hill.  However, non of it would be possible without your help.  So, THANK YOU!

And stay tuned, more exciting events are coming in 2013!  I can’t wait to share them with you.

Diabetes, and its Risks, are Real

Joel Connable, news anchor at the ABC TV station in Seattle, was found dead in his apartment a couple of days ago, having died from what was described as a “diabetic siezure”.

http://www.miamiherald.com/2012/11/08/3087599/newlywed-tv-anchor-joel-connable.html

Some of my friends in the T1D community have unfortunately experienced this.  Joel was 39 years old, and was married two weeks prior to his death.

This is THE fear I experience every day, all day.  Most people are afraid of how their kids will turn out, what their boss is going to say at this week’s meeting, and whether or not they’re going to have enough money to retire before they’re dead.  Yes, I worry about that stuff too, but my real fear is that I will face premature death due to hypoglycemia, hypoglycemia induced seizures, or from a cardiac event brought on by too many teenage years of hyperglycemic events.

Actually, the truth is, most of the time I ignore the fact that I am vulnerable to this very situation, compartmentalizing the risk so that I may be the aggressive (wanna be) athlete, ambitious employee, busy husband and father.

Should I live scared?

Should I live with reckless abandon?

Neither.  I believe both options will breed failure for those living with T1D.  While fear is a great motivator and reckless abandon is just that, a middle ground needs to be established.  Constant self analysis, development of the day and constant tweaking of care.  Blood glucose levels tested, basal rates adjusted, bolus ratios revised……the only thing constant about these is the change.  I know, that’s the difficult part, the hourly consistent focus.

And the T1D community cannot take news like this and become frustrated.  I admit, this news hit me a little hard today.  A 39 year old healthy male with T1D with everything going for him, lost everything.  I am 36, married with 2 children.  I want to be around to spoil my grandchildren.

HOWEVER, I CAN’T let this news define my outcome.  The T1D community can’t let this news defeat them.

We, the T1D community has to continue fighting.  Fighting for themselves and for the rest of us in the T1D community.  The self fight is the focus in blood glucose control and staying physically fit.

The T1D community fight is about helping each other improve the lives of those of us with the disease now, and helping to improve the lives of any of our children who end up being diagnosed.

Many changes are coming for the T1D community because of volunteers who raise money for research.

We, the T1D community, cannot just throw our hands up and take what complications come to us.  We need to fight with the tools we have now, and fight for better tools in the future.

So, in the month of November, Diabetes Awareness Month:

  • Be Aware of the risks, because they are real, and
  • Be Aware of the changes coming in the future, and the part we all need to play in order to obtain better care.  We can sit back and wait for something terrible to happen to us, or we can fight for something better.

Wouldn’t it be nice if I could tell my granchildren the story about how I used to have Type 1 Diabetes?

Because T1D Doesn’t Have Boobs

Before you get too excited, read the post and then decide what you think.

First of all, this post was my wife’s idea.  She’s the brains of the operation, so I follow suit.  She and I were watching TV the other night when a Susan G. Komen commercial came on.

I have to hand it to Breast Cancer supporters.  The Susan G. Komen Foundation has done a great job in raising awareness and money for breast cancer.  My wife said something to the effect of, “JDRF should have this kind of exposure”.  She’s right, it should.  And as a JDRF supporter, that kind of exposure is what I want for T1D.

Why are they so successful, and why am I so jealous?  My title states the obvious, but let’s review the numbers.

The 2011 census states that there were 311,591,917 people in the United States.  50.8% women.  Who’s going to say no to their mother, their wife or their daughter?  I sure don’t.

But for the T1D community, you have to pay attention to this next statistic.  2.6 million women were living with breast cancer in 2008.  Approximately 3 million Americans were living with T1D in 2011.  Similar numbers of prevalence, however, nothing is going to change in terms of the vast numbers of people involved in Breast Cancer Awareness and fundraising.  Pancreas VS. Boobs.  Yep, Boobs wins.  Every time.  Now, I say this in jest because we are not competing.  But the idea is that the pancreas does not draw the same amount of attention…..  Let’s face it, how many of us truly know exactly where the pancreas is?

So what does that mean for those of us dealing with T1D?  We just have to continue to work hard.  The AP study last weekend proves that JDRF is funding research that is improving lives of those with T1D.  Those families with T1D have to be more determined now than ever, to continue in the fight to cure T1D.  We are a small part of the population, with very low curb appeal to those outside of the T1D world.

So don’t get frustrated by that fact there is a lot of pink ribbons in the community.  We have to work harder.  Wear blue.  Talk to your friends and family.  Thank them for their donations and their volunteer hours.  Share with them the research information, showing them the progress that is happening because of their help.  And if you live with T1D, we need you.  Now, more than ever.

 

All stats were gathered from the following websites:

American Cancer Society Website: www.cancer.org

JDRF:  www.jdrf.org

Monday Night Run

I went for a 5 mile run tonight while my son was at soccer practice. I just kept thinking “how would the AP handle this?”

After waking up low this morning and pushing the start of my run back to make sure my blood glucose was stable, I am more determined to have the artificial pancreas.

How long is it really going to take to get it to market?

How much money is it going to take to get it to market?

What more can I do to help?

End of Study – Preliminary Statements

While this AP has not been perfect through the weekend, it has shown the ability to learn and improve on dual hormone therapy.  I am INCREDIBLY encouraged and EXCITED beyond belief at the thought of being able to wear the 1st generation commercially available AP as soon as possible.

Average BG, Saturday – 142

Average BG, Sunday – 126

And I didn’t do a thing.  Now that’s just cool.

There will be naysayers, and I’m ok with that.  Different insulin pumps are liked or disliked for different reasons.  CGM’s are utilized by different folks.  What I am saying here is that you combine these devices and make T1D management easier?  I am in.

The hurdles faced during the weekend are being addressed with the next generation AP.  The research director is already planning for the generation after that and working towards the successful delivery of a dependable product.

I am encouraged by this team because they have a personal drive.  Ed Damiano’s son is T1D and Ed wants this device before his son goes to college in 5 years.  He knows the hurdles, but is not frustrated by them, and the culture of the study staff follows suit.  I am impressed and look forward to working with them again.

I want to thank the study staff, especially Kathy, Kathy, Kendra (all pictured L-R), Rick, Helen Ann,and of course the lead guys Ed Damiano and Firas El-Khatib.

Thank you.

Now stayed tuned for some more information once I get it from the staff later this week.

Day 3 – Almost Sprung

Getting ready with my Dexcom CGM.  Not the NEW G4 that I have been wearing all weekend and the one that will be used in the next generation AP.

What do you think?  Should I volunteer for the next phase?  They’re talking about including rides/runs into the next phase, which is partial outpatient.

Hmmmm?