A View of the World Through the Thoughts and Lens of Scott Kasper

Posts tagged “type 1 diabetes

Unfinished Business

Last night (Saturday April 9, 2011) was the JDRF Black Tie Gala to raise money to find a cure for Type 1 Diabetes. The of the Gala was “Unfinished Business”, as we will have unfinished business until we find a cure. Here is a picture that I took (it was used as the cover the of program book) of many of our kids who have Type 1 Diabetes with our Gala sponsor Brian Radwell.

I was honored to have been asked to provide the evenings Fund-a-Cure speech (see entire text below). As I spoke the photos that are imbedded below were projected on several large screens and monitors throughout the ball room. Immediately after my speech an auctioneer began asking the room to raise their hands if they can donate a certain amount….he started high ($25,000) and worked his way down to $100…in about 15 minutes we raised over $100,000 through generous donations of the 350 people sitting in the room….AMAZING!!! Below is a copy of my speech. If it moves you…if you feel like you want to help…please feel free to contribute by making a donation to the JDRF Ride for the Cure ( http://www2.jdrf.org/goto/teamkasper) that Rachel and I are doing in September. Our personal goal is to raise $10,000 and I think we can make it with a little help. Thanks so much!!

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Good evening. First and foremost, as a dad of two kids with Type 1 Diabetes and a member of the JDRF South Jersey Chapter Board of Directors, I want to thank you all for coming out tonight to help us in our mission to fund the cure for type 1 diabetes. As I look out across the room, I see several hundred of my friends and family all gathered to accomplish the same mission. I use the word family because, as I am sure all of you know, we all can relate to one another and the challenges we face on a daily basis in a way that non D families cannot imagine.

I have always believed that there is a silver lining in every dark cloud, and a reason behind everything that occurs. To that end, I am thrilled to have gotten to know each and every one of the members of this extended family, and have grown relationships with many of the people in this room that I know will last a life-time…that’s the silver lining. On the other hand, I have to be perfectly honest…I am dreadfully sorry that we ever had to meet!

We have all heard the saying that you can choose your friends, but you cannot choose your family. I guess none of us had the choice to join this family. My mission is to prove that saying wrong by working tirelessly to fund the research needed to find a cure for type 1 diabetes so that we can all divorce ourselves from the clan. While I love you all, I just don’t want to be a part of this family any more! I want out…but I do want to be invited to the reunion. I want our outstanding Gala Chairs, the Petcoves and the Mogells, to begin planning a reunion gala so that this family can get together and reminisce about the trials and tribulations of what we used to go through before our kids, mothers, sisters, brothers and all 3 million Americans were cured! I want you to think about how you can help get us there through your generosity and support tonight. I want you to think about how truly important it is to all of us to find the cure!

Since family is my theme this evening, I want to give you a snapshot of the Kasper family…we don’t have a white picket fence or a cat or a dog, but aside from that we are the typical family living the American dream. When our nuclear family gathers we spend time comparing notes about work, we debate politics, and we talk sports. We also compare pump settings, count carbs, brag about our new glucometers, and wake up at 2 o’clock in the morning to check blood sugars. You see when my family gets together we have a group of type 1 diabetics that include 2 young boys, their grandmother, their aunt and their cousin…it really is a family affair.

But what is the impact? How has this shaped our lives? Why is so important to find a cure?

The bottom line is that life with type 1 diabetes, especially for these kids, just plainly stinks. It’s not easy…there’s one challenge after another. For example, whether it’s making a seven year old diabetic or a thirty-seven year old non-diabetic school room mom understand the importance of diet, it’s clearly a challenge. My seven year old will say something as innocent as, “but I only ate a small candy bar” when his blood sugar is 400, or the room mom at school who will say something like “he can eat anything at the party as long as I don’t put sugar on it”, life is a battle of managing normalcy with good diabetes health. Until we find a cure that battle will cause me to wake up every night, as I have for the past 7 years, to check my sons’ blood sugars, or to simply look in and make sure that they are still breathing and not in a hypoglycemic coma.

What about from the kids’ perspective? We are, after all, a family and their input matters? How do we know how they feel about it? One day, I set out to determine just that. First I approached Jake, who was 5 at the time, and asked him to tell me one word that described what it was like for him to live with diabetes.

He quickly and simply said, “Brave!” Having been diagnosed at the age of 13 months, he has essentially known no other way of life, but has been on the receiving end of needles and syringes ever since. He knows he has diabetes. He knows he needs to check his blood sugar. He knows he needs insulin. But at the time he was only 5 and doesn’t truly understand what all that means…he only knows he needs to be brave!

When I got done with Jake, Matt was my next target. He and Ryan (who is my middle son and does not have diabetes) were at the kitchen table. Matt is shy and reserved about expressing his feelings…typical pre-teen!! He was hesitant to engage in this exercise, but I kept pushing. In the mean-time, Ryan interrupted and was told to wait just a minute until I was done with Matt. The discussion ensued…Ryan interrupted several more times, and each time was told to wait with an increasing tone of sternness. Finally Matt said to me “it’s difficult.” I told him I knew it was difficult, but if he could just try to think of a word I would leave him alone.

“no Dad, that’s my word. My life is difficult”…from the mouth of a 10 year old kid!

So I was done focusing on Matt and Jake. I got what I needed. My goal had been reached. I was able to describe in one word and with a photograph, how diabetes had touched the lives of two of my sons. It seems that they are always the focus. At meal time its blood sugar checks and boluses. Family activities are interrupted because of emergency site changes. Plans are altered or cancelled because of ketones and sick day rules…all because of diabetes, and in Ryan’s young mind all because of his brothers….Oh, wait, I almost forgot. What about Ryan? He had wanted to say something while I was focused on Jake and Matt. Finally I gave him his turn. “I wanted to tell you my word,” he said.

“I wanted to tell you that diabetes makes me feel Invisible!”

This is very important to me, and I hope it is to you as well. The fact is that there are 3 million Americans living with type 1 diabetes. If the experience of my family is any indication of the impact of that, it means that there are 7.5 million people living in families with diabetes who are impacted as well. I would never presume to compare the impact of those who live with the diagnosis to that of those who live with the diagnosed, but the reality is that this disease has had a profound effect on all of us, and we all need to find a cure. We need to find a way that when Ryan asks, as he gets ready to go to bed, when it will happen to him that I can say it won’t…we found a cure, we discovered how to prevent, we were successful and we can protect you!

As I am sure you expect, I will end this speech with a plea to open your wallets and pocket books and contribute as much as you can to help fund the cure. Before I do that, however, I want to tell you one more story that illustrates the fact that this disease impacts every aspect of family life.

The kids decided that they wanted to play Sorry. I thought okay, that’s fun enough, and doesn’t last all afternoon the way monopoly does. Rachel was reading a book (if you can still call it a book when all one does is scroll from page to page on the Kindle), I was available, and it’s a game for four players….perfect!! Well, not exactly. One of the things my kids like to do most is NOT put stuff away when they are done playing. As it relates to this story, that means that there are no green Sorry pieces left.
“That’s okay Dad”, Jake said. “I know what we can use!” Off he went toward what we refer to in our home as “The Cabinet,” where we have a veritable pharmacy of diabetes supplies. Within moments he returned with four cone shaped objects, just the right size to substitute as a Sorry game piece. It did not strike me at first, but as I got my first turn I quickly realized that the pieces he had provided were, in fact, packaged needles for the insulin injector pen.

Diabetes has, in large part, impacted every aspect of our lives. About this, Rachel and I are very sorry! We’re sorry that two of our boys have to grow up with the daily complexities of life with diabetes. We’re sorry that my middle son wonders whether he will ever become diabetic, feeling invisible while he wonders. We’re sorry that, perhaps, something we did or something we genetically passed on has caused this to happen…on a daily basis we are sorry!

That day, without even missing a beat and without realizing how NOT normal this is, my six year old resorted to using insulin injection supplies to play a board game … not just any board game … a game of Sorry!

How ironic is that!

Please donate. Please give generously. Please help us raise the funds needed to enable the researchers around the world find a cure so that next year you’ll be invited to that reunion rather than another fund-a-cure Gala and that we’re all not sorry that we didn’t give more sooner!!

Thank you.

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Letter to Boards of Education

Dear Boards of Education:

I am the parent of three school aged children, two of whom have Type 1 Diabetes and I want to take a moment to educate you about a growing concern that I have about the health and well being of the students in your classrooms. Perhaps you don’t know, but November has been designated as National Diabetes Month, and November 14 was World Diabetes Day. The designation of this month is based upon some staggering statistics that, in my opinion, are not being taken seriously by our educational system – the place that our children spend the vast majority of their waking hours – and you are helping the problem grow worse.

According to statistics published by the Juvenile Diabetes Research Foundation and the American Diabetes Association there are currently an estimated 18.2 million people in the US who suffer from Diabetes…that’s 6.3% of the total population. Further, they estimate that in the next 15 years another 44 million people will be diagnosed. Of those, as many as 3 million have Type 1 diabetes and more than 15,000 kids will become newly diagnosed in 2011…that’s one out of every 500 children under the age of 18. Among those 3 million kids are two of my three sons, Matt and Jake…and they’re in your schools!

So why am I picking on the schools? To be honest, I am perplexed and I need your help. In 2003, New Jersey (where I live) launched its Healthy Choices, Healthy Kids Campaign. Among the standards set in that campaign are the following:

  • Foods of minimal nutritional value may not be served, sold or given out as free promotion anywhere on school property before the end of the school day.
  • All forms of candy may not be served, sold or given out as free promotion anywhere on school property before the end of the school day.

To any parent concerned about the health of their children, these standards ought to seem reasonable. However, for some reason nobody is paying attention and I want to know why. So, I have a few questions:

1. Why are my children allowed to spend their lunch money on candy, ice cream and soda, all of which are prominently displayed and sold in my children’s school cafeterias?

When my kids are at home they don’t get to have these things as routines snacks. They are reserved for special occasions and are not part of the daily diet. In fact, my kids love when we have freshly cut fruit and veggies on the table when they get home. I wonder whether our society would solve the ever-expanding (pardon the pun) problem of childhood obesity if these choices were systematically eliminated from their lunchroom options. If the school took a stand and eliminated 100% of this stuff, what would be the harm, and who would have the gumption to actually complain about it? The life a a kid with Type 1 Diabetes revolves around so many factors…candy and treats at school should not be one of them!

2. Why does nearly every day need to be a “special day” in the classroom, where parents are permitted to send in cupcakes, cake, brownies, candy and other  “treats” that have little or no nutritional value?

I’m not sure about you, but I see no need for my child to have cake and brownies at morning snack time, followed by a Pepsi and an ice cream taco in the lunch cafeteria an hour later. When I was a kid, we exchanged Valentines Day cards with our classmates and I would come home with a stack of notes asking, “Will you be my valentine?” My kids, on the other hand, came home with a bag of candy (contents shown in the photo below) that weighed nearly 2 pounds last February…it’s just not necessary! I must say that we are fortunate this year, because Jake’s teacher gets it and the junk in the classroom has been toned down.

Note to school systems: Please don’t call parents and complain that our children are hyperactive and out of control in the early afternoon and then seem sleepy and aloof by the end of the day when you have just provided them a week’s worth of sugar to rev their engines shortly after which they crash…it’s the system’s fault, not ours and not the kids!!

3. Why have seven (7) years gone by and no significant changes have been made based upon the aforementioned Healthy Kids recommendations?

It seems odd to me that my children learn about the Food Pyramid in health class, yet in the very building where they are taught about the relative nutritional value of their food choices, they are able to make every bad choice that just about any kid would make when their parents aren’t around. How ironic that my kid could take a test in health class and potentially get it wrong, when the poor food choice behaviors are being reinforced by the schools at lunch…right before that test.

Please understand, making these changes will not cure the Type 1 Diabetes that impacts my children…I know that. I’m also not blaming the schools for my kids’ disease. However, it is a huge, yet preventable, problem when my son has a blood sugar of 500 at the end of the day – which may easily have impacted his performance in the classroom – because he bought an ice cream and did not take any insulin to cover it. You see, Matt is a teenager and given a little freedom he does not always follow the rules and we do not know that he has done stuff like this until we download his pump and ultimately find that his HbA1c has gone from 7 to nearly 10 (yup…embarrassed to say that happened last year)!!!. That’s why we need your leadership and your help!

So, in honor of Diabetes Month and World Diabetes Day, I am asking you to please help make our schools a healthier place for our children. Please pay attention to the 2003 recommendations. Please help my kids avoid having the long-term complications of a life with Diabetes that include heart disease, kidney disease, blindness, neuro-vascular disease, and more. Please become a partner with parents in educating and reinforcing healthy life-styles by fostering them in your buildings every day. If you can help me do that, I’ll stop picking on the school systems! Thank you.

Sincerely,

Scott Kasper, on behalf of many concerned parents

Oh – by the way – if you’re a concerned parent feel free to share a link to this entry with whomever you think might listen!!


I Need Your Help!

Yesterday my son Matt felt as though his blood sugar was very low. When he checked, which he must do in the neighborhood of 10-12 times per day, he saw an amazing message appear on his glucometer….

What a timely reminder that I need to get ready for this year’s JDRF Walk for the Cure. Let me tell you the story about why we walk, and give you 5 good reasons why we won’t stop walking until we find a cure. Those reasons are:

  1. Jake Kasper (age 7)
  2. Matthew Kasper (age 13)
  3. Zachary Lang (age: Big Kid)
  4. Anne Schlesinger (age: another Big Kid)
  5. Bunny Kasper (she’d kill me if I listed her age)

These are just 5 out of the more than 3,000,000 Americans with Type 1 diabetes. To me, however, these are the most important 5, since they are my 2 sons, their cousin, their aunt, and their grandmother. That’s why I am again supporting the JDRF Walk for the Cure on October 24 along the river front in Camden New Jersey…and I need your help. If you’ve already been convinced and want to join our team and help us fund a cure, just CLICK HERE. Even If you can’t join the walk, but wish to make a donation anyway,  you need not read any further…just CLICK to DONATE. If you still need some convincing, read on….

I guess life with Type 1 Diabetes (T1D) is karma for us. Rachel’s cousin Zach (now in his thirties) has had T1D since he was a little kid. In 1985, just before heading off to college, Rachel’s sister Anne was diagnosed with T1D. From that point forward Rachel was always involved….in a big way!! Her first job after college was in a lab at the Joslin Diabetes Center. In 1991 she was working on transplanting healthy islet cells into the pancreases of diabetic rats.

Educational break: for those not in the know about all things T1D, the pancreas that I mentioned is where insulin is produced. Insulin is the hormone that allows glucose to cross cellular membranes and feed the cells in your body so that they get the energy that they need to work. Without insulin, that glucose from all the food you eat (not just sugar) floats around in your blood stream and causes high blood sugar, known as hyperglycemia. In the short term, hyperglycemia and the related production of ketones can cause the pH (or acidity) of your blood to become lower (more acidic). This causes a phenomenon know as DKA or diabetic ketoacidosis. DKA can be quickly lethal if left untreated. In the long term, persistently and/or repeatedly high glucose levels can cause kidney damage, vascular damage, heart disease, blindness, nerve damage and more. On the flip side, too much insulin causes the available glucose in your blood stream to be used up too quickly and it causes your blood sugar to drop….sometimes precipitously. This can cause confusion, odd behavior, profound unconsciousness, seizures and even sudden death. The normal range (measured in milligrams of glucose per deciliter of blood) is 80-120. On any given day my kids will vary from 30 to 500! Are you ready to donate yet?? The link is still up there….just scroll up and click!!! End of Educational Break.

Rachel went on to work in diabetes research labs at the New England Medical Center and the Barbara Davis Center for Diabetes Research in Colorado…all the while she was driven to help find a cure for her sister and cousin. The research that she did, and the similar research that goes on today is extremely important, and JDRF has played a huge role in that. JDRF is, aside from the United States government, the single largest funder of diabetes research in the world!! The mission of JDRF is to “Fund the Cure”. Little did she know that the work she was doing then would be so critical in the lives of our own children in the future.

Rachel went on to graduate school and ultimately left the field of diabetes research. Then, in January 2004, I was presented with an excellent career opportunity and we picked up our family and we moved to New Jersey. At the time Jake was just 6 months old. The few months that followed should have been that period in the life of a little baby when it is supposed to morph into a happy little toddler and when the number of diapers it goes through in a day is supposed to decrease as it strives toward potty training. Unfortunately, Jake was inconsolable. As he started to toddle around the house he would make his way to the refrigerator, pull himself up and start banging on the stainless steel doors as if the automatic water dispenser knew just how thirsty he was. I would return home from work and get frustrated that Rachel had left him in a wet diaper for what appeared to have been all afternoon….they were the size of footballs and weighed as much as a small watermelon. She would tell me (in her how dare you come home and criticize me tone of voice that I am understandably sure all stay at home moms have) that she had just changed it within the hour!!! What the heck was going on?? Then there was the day we will never forget.

Rachel was perplexed that as much as Jake was eating and drinking, he seemed to be losing weight. She took him to the pediatrician office and requested that they check his blood sugar. They refused. She was told that kids his age are too young to get T1D…but Rachel, being an educated diabetes consumer, forced the issue. That’s when I got the call…crying…telling me that Jake was being rushed to Children’s Hospital of Philadelphia because he had been diagnosed with T1D. Our adventure began and we spent the better part of the first year trying to convince the team at CHOP to allow us to put Jake on an insulin pump. While we truly love our diabetes team at CHOP, they wouldn’t do it, citing it was their policy to wait until the kids turned 5. Well – if you know me, you know that telling me no is a great way to challenge me into figuring out any way that I can to get what I want….Rachel is the same way. By Jake’s second birthday he was on the pump and CHOP’s response to many of the specific pump related questions we had was “please let us know after you figure it out…this is new ground for us”. Believe me when I tell you that my bucket list has never included using my kids’ experiences to pave the medical information highway. Are you ready to donate yet….scroll up and hit the link…I know you want to!!!

If you do choose to donate, the pump that I mentioned will be front and center on the list of funded research to which your money will be directed. You see, the pump is one of the components of the closed loop “artificial pancreas” project that truly represents the light at the end of the one of the tunnels for many of us. While a cure is the ultimate goal, the artificial pancreas project is the next best thing. Currently JDRF is leading the charge, donating millions of dollars to fund a system wherein a continuous glucose monitor will measure blood glucose levels and talk directly with the insulin pump to regulate, in real time on demand, how much insulin the body needs. Algorithms will control when the pump turns on and shuts off. Yes, it’s a combination of external devices, but it’s way better than today’s alternatives. Researchers are close…so close we can taste it (carb free of course)…but we need to make a funding push to ensure that the work is complete!!

Life with three kids, one of whom is a one year old with T1D, was quite the challenge. I must say, however, that if any two parents were going to be able to adapt and overcome it would be us!! Over time we figured out all of the resourceful things we need to figure out. We got used to the fact that meals needed to be planned down to the carb counts of everything that would go into his mouth. We got used to the fact that we had to check his blood sugar multiple times a day, and that we would have to force feed him if he was low and listen to him scream with hunger if he was too high. We got used to the fact that we would have to check his blood sugar when he went to bed, and again when we went to bed, and again at 2 o’clock in the morning, and again at 4 o’clock in the morning. We got used to the fact that we could not find a baby sitter qualified, capable, and confident enough to care for our young son. We got used to the fact that our daily routine would be defined and regulated by this disease….we got used to a lot of things.

Life has a funny way of chopping you out at the knees when you get too used to things…fast forward a few years…I was in Baltimore at the annual Emergency Medical Services conference. At home, Rachel had taken the boys out to Bertucci’s for pizza after Matt’s lacrosse practice. She called me that evening, after the boys went to bed, to express her concern that Matt had been unable to quench his thirst at dinner and she was worried….”worried about what?” I asked…either stupidly or in complete denial that his insatiable thirst could be a sign that he, too, was on his way to T1D! We agreed that in the morning she would check him with Jake’s glucometer, but that he was probably just dehydrated from a tough lacrosse outing. That was my rationalization, anyway. Then the second phone call that I will never forget…by 7:00 am I was in the car on the way up to CHOP once again. This time, however, it wasn’t a 1-year old who did not know any different. This time it was a 9-year old little boy who had lived with T1D for the past two years. He had seen the struggles and challenges. He knew how difficult it would be.

Life with three kids, two of whom have T1D…well…it’s our life and when it comes to life I love every day of it….but on many levels….it just sucks! I have not slept through the night in more than 5 years…gotta check those kids to make sure that their blood sugar is in range. It’s important – I need to ensure that they wake up the next morning!!! Two of my sons compare blood sugar numbers with their grandmother. Doesn’t every parent hope that their children and their parents will enjoy each others company? I loved seeing my grandparents, but I now realize how fortunate I was that I did not have to discuss our common co-morbidities in a conversation as routine as who won the baseball game that day!! My mom struggles with her T1D issues every day. From the beginning it seemed as though her docs just couldn’t get things quite right for her…not because of the quality or caliber of the docs, but because this disease is simply not an easy one to manage. How ironic was it that after years of talking with her about her challenges, she could now have a much more personal and relevant discussion with one of my sons. It’s just not fair. I’m really not complaining in the hope that someone will feel sorry for me, and don’t mean to come across that way. I am, however, trying to paint this picture that we were dealt a crappy hand. That said, I do have one more issue to raise before I’m done….

Life with three kids, two of whom have T1D means that the third, Ryan, always has the question in the back of his mind….when will it happen to me? That’s just completely unacceptable and that’s why we need your help to fund the cure!! We need to make sure that we find a cure for Jake, Matt, Bunny, Anne, Zack and the millions of others who live with this every day. We need to fund the cure so that kids like Ryan can go to sleep at night without wondering if and when he will be among them.

So if you weren’t convinced before…perhaps you are now. If so, please go back up to the link and make a donation today…no matter how big or how small….it’ll be a huge help!

Finally a big disclaimer – due to some other commitments this year, Rachel, Ryan and Jake cannnot be at the walk. Please know that this does not lessen our desire to make am impact on this disease by raising as much money as we can toward the cure. Matt and I will be volunteering at the walk, and we welcome anyone and everyone who wants to pick up the torch for our team and carry it down the riverfront. Oh – If you’re still not convinced, just click the link and donate because its a righteous thing to do…it will help, ’cause life with diabetes is no easy feat!