Webster’s Dictionary defines the word Family as a group of people united by a common affiliation or characteristics.
That definition holds a significant meaning for me and for my “family”. Using its most basic interpretation my family is defined by the following:
- My beautiful, loving, patient, and devoted wife (who doubles as my best friend!!)
- Three amazing children (it’s hard for me to resist insert bragging here!!!)
- My wonderful parents who helped guide me to becoming the man that I am today
- Two incredible brothers
- A mother-in-law and father-in-law who love me as one of their own
- Seven brothers and sisters-in-law (you could delete the “in-law” part…they all feel like siblings to me!!)
- And fifteen nieces and nephews that would make any uncle proud every day!!
For better or for worse my life expands that definition, as I have a much larger family. At times I feel fortunate to be a part of this extended family. Other times I rue the day that we adopted each other into our respective lives. I know personally many members of this family, yet there are many others with whom I am united by our common affiliation yet I may never meet. Every day I hear about people who have become the newest members of this family, but who may not yet even realize that they are a part of something much larger than themselves and may or may not know that this family is there to support them. I have a love/hate relationship with this family; these are the family of people impacted by Type 1 Diabetes…all 3 million (and growing every day) of them!!!
There are some amazing kids (and parents) in this family whom I have come to know and love over the past 7 years since Jake was diagnosed. There are kids like my sons Jake and Matt, my mom (yup…she’s just a big kid), my sister-in-law Anne, and Cousin Zack, as well as Emily (actually two Emily’s), Chloe, Matt P, Avery, Aidan, Nate (whom I have come to know from all the way in Texas), McKenna, Evie, Ian, Kerri, Brian, Mike and Joe…I could go on and on…but this family tree is just far too big.
Like all families, this one gathers from time to time. We have events like Galas, Walks, Golf Tournaments, Support Groups, committee meetings, and many more family reunions for various important reasons…whether we like it or not!! When my nuclear family meets, we discuss how the kids are doing in school, vacation plans, sports, and politics. It’s usually light hearted and focuses on the wonderful things that we all share.
When my extended family meets, however, we are focused on topics such as which model insulin pump is the best on market, whether or not insurance covers continuous glucose monitors, when the FDA will approve the closed loop artificial pancreas, and our latest experiences in area hospital emergency departments and pediatric intensive care units.
I am reminded of a saying: one can choose his friends, but one cannot choose his family. Well, I hope to prove that adage is wrong and outdated so that I can choose to no longer be a member of this family…that’s why I work tirelessly with the Juvenile Diabetes Research Foundation to help raise the funds needed by the world’s leading researchers to identify better treatments for today, and a cure for my kids tomorrow!! That’s why I am participating in this year’s JDRF Ride to Cure Diabetes in Lake Tahoe on September 11. Click here if you would like to help by making a donation: http://www2.jdrf.org/goto/teamkasper
You see if we raise enough money to fund enough research, we will find that cure for my family.
When that happens we will have another gathering…another family reunion. At that reunion we will celebrate our significant accomplishment. More importantly, at the end of that reunion, an announcement will be made to let everyone know that our family will be disbanding and there will be no more reunions!
We’ll still gather from time to time, but it won’t be the same. We’ll talk about sports, politics, vacations, and kids accomplishments in school. It will be light hearted because none of us will go home to put our kids to bed wondering whether or not they will wake up the next morning.
Our family will be defined as being a group of people united by victory over Type 1 Diabetes!
- Training for a Cure (scottkasperphotography.wordpress.com)
Yesterday marked an important milestone…in exactly 8 weeks, on Sunday September 11, Rachel and I will be riding in the 2011 JDRF Ride to Cure Diabetes. On that day we will pedal the 78 miles around the circumference of Lake Tahoe along with groups of other folks riding for the same cause. My training for this started several weeks ago, and I must say that my physical conditioning has gotten noticeably better along the way.
Yesterday, as a part of my training, I participated in the American Cancer Society Bike-a-thon here in South Jersey. Along with thousands of other riders who were helping to raise money and raise awareness for this important cause, I rode the 50 mile route…I started by myself, but after the first 15 miles I met up with some friends from my neighborhood with whom I ride during the week…that’s when it got really got fun!! We rode the next 30 miles at an average speed of 21 mph!!! I had no idea I could do that…felt like a Tour de France cycling star!!! Being a 40-something year old guy who just got back on a bike, I thought that this was a tremendous accomplishment!
Why is this so important?? Why have we decided to to a bike ride this year?? Jake and Matt must live with Type 1 Diabetes every day, and until we find a cure, I will need to teach them at least two important things. First, they need to stay physically fit. By getting myself off of the couch and back into the saddle, I set a good example for them by making healthy living a priority. Second, and probably more importantly, by accomplishing things that I did not think were possible, I show them that they WILL be able to overcome the challenges put in front of them. Since I started my training rides in May, I have personally logged nearly 500 miles (about the distance from Washington DC to Boston!!!), and I will keep plugging away every day so that ultimately I can climb the mountain passes at Lake Tahoe and successfully complete this personal challenge that seemed a far reach just a few months ago. As that relates to our battle against T1D, we must keep traveling the road toward beating this disease one mile at a time, and eventually we will win the race for the cure!!
To that end, I still need your help! Our fundraising goal is set at $15,000 and we are almost there. Please help me in one of a few ways…first, please click or copy this link ( http://www2.jdrf.org/goto/teamkasper ) and make a donation today!! Every penny counts and we appreciate any contribution no matter how large or small. Second, if you already have made a donation (for which we are very grateful!), please forward this note, share it on your FB wall, tweet it, or email it to your contact list so that others see that you have a friend in need of their help. I think you would be shocked to find out how many of your friends and extended family have some connection to this disease, and they just may be willing to help get us to our goal. Third, come out and help support our team!! The South Jersey JDRF riders who are training this summer for the Ride to Cure Diabetes would love to grow our group. If you are a cyclist, a beginner or a seasoned pro, come out for a training ride with us…just let me know your interested and I’ll make sure we add you to our list.
In exactly two months, Rachel and I will conquer the Tour de Tahoe and hopefully we will be $15,000 closer to conquering Type 1 Diabetes. I know we can accomplish both goals!!
Induced Hypoglycemia Ordering Pancakes
That was the motto at the local IHOP (International House of Pancakes) near my parents home in CT on Sunday morning….here’s the story…
It all started like a normal Sunday morning when the entire Kasper clan converges on Grammy and Poppy’s house. We all arrived Friday evening in time for a holiday meal and synagogue. It was Kol Nidre, the evening service of Yom Kippur, the holiest day on the Jewish Calendar. My brothers and I each brought our families to celebrate this solemn holiday with my parents. Our arrival in Ct was staggered, but by dinner time there were a total of 17 of us sitting around the table for our holiday meal.
I grew up in this house. We moved there when I was three, just before my brothers were born. Growing up it seemed big enough. None of us ever felt that our space was being invaded (except, of course, when we got our very first Atari game and Space Invaders was all the rage!!). However, put 17 of us in this house, and it gets a bit tight. Anyway – we packed as many of the cousins in bedrooms as we possible could, and Rachel and I stayed at a local Clarion Hotel.
This morning, when I woke up, I left Rachel in the hotel to sleep (aren’t I a good husband?!?!) and went to the house to help out with the morning craziness. As it turns out both Matt and Jake woke up with reasonably good blood glucose levels, so I suggested to my Dad that we all head down to the local IHOP for a special breakfast. Sounds good…we were off!!
Pancakes, as much as they look innocent enough sitting stacked neatly on the plate crowned with a big dollop of melting butter, are our worst nightmare!! As hard as we have tried, getting the bolus right has never worked. For the T1D parents out there, we have gotten very good at the home made kind….try the Fiber One Complete pancake mix…Follow the recipe on the box and 116 grams of pancake is 36 carbs. Because of the ingredients, and the ratio of carbs, protein, and fiber, we have found that a normal bolus works and the kids don’t spike or crash as a result.
IHOP, however, is an entirely different story. Those pancakes are supercharged with carbs that have always made the kids blood sugar skyrocket….high and fast….and then they come crashing down a few hours later just as fast. What we have found to work is the pre-bolus strategy. About 15-20 minutes before they eat, we bolus the pancakes…the advanced time for the insulin to work seems to be perfect, and a few hours later they don’t seem to crash. However there is one flaw in this plan….waitresses make mistakes!!!
So we’re sitting at IHOP having ordered a few minutes ago, and Grammy says “I’d better bolus now so that I don’t go to high later.” Imagine that…Grammy, Matt, and Jake all share the same strategy….great idea….we’ll do that as well!! We had ordered about 10 minutes before, and having been to may IHOP’s I know that it only takes about 20 minutes to make our order. No problem. Well, about 40 minutes after we had ordered the food (and reminded the waitress that we had been waiting for some time) my mother was so fidgety that her hands were shaking and her left knee was bouncing up and down at a rate of about 150 times per minute. Matt began to have a look of concern in his face, as though he knew that his blood sugar levels were dropping and was hoping as hard as he could that the food would arrive in time. Then there was Jake…his “whine factor” went through the roof, which is a clear sign that he needed to check….50!!! Bad news and no food in sight.
Our food arrived shortly after having advised the manager that either we needed to eat or there would be three diabetics each with an emergently low blood sugar. My mother and Matt began eating…clearly with a mission, but casually enough that they were able to enjoy the meal. Jake, however dove into his with a vigor that one would expect to see from a starving child who is eating for the first time in a week. There was only one problem…he opened his mouth and his eyes as wide as the plate, shoveled the pancakes into his gaping mouth, swallowed each shovel full without even chewing and then slouched over on the seat nearly unconscious. At the end of the meal, when we compared the time that we administered insulin to the time that the check stated that the order had been placed in the system, it was clear…the waitress had not put the order in.
We have been living with T1D for 6 years. I can honestly say that I can count on less than one hand the number of times we have had to deal with a situation like this. As much and as fast as he shoveled, his blood sugar would not go up, and his level of consciousness continued to go down. The reality of how this must feel to a person with T1D did not hit me until shortly after the ordeal had settled down and Jake was sitting on Rachel’s lap. Two things happened. First, Jake realized that in his frenzy to feed the beast called T1D, he had inadvertently swallowed a loose tooth….OMG, what was he going to tell the tooth fairy?!?! Second, he asked when he could have his pancakes…his level of consciousness was so low that he did not recall that he had just finished the entire meal in three bites!!
Jake is in bed now, and I told him that I would write a note for the tooth fairy so that she would appropriately compensate him for the incisor that now sits somewhere in his lower intestine. Here’s what my note will say:
Dear Tooth Fairy,
I know that you are very busy, and that there are many teeth for which you are exchanging a surprise tonight. The loss of this tooth, however, involves some very special circumstances which come with a very special wish. Unfortunately I am unable to tell you what those circumstances were because my blood sugar was too low for me to even remember. Therefore, rather than leaving me money for my very special tooth, I would gladly trade it for a cure…I’ll look for it when I wake up in the morning!!
While we are all very hopeful, I suppose I should go and stick $5.00 under his pillow before he wakes up!!
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:
- Jake Kasper (age 7)
- Matthew Kasper (age 13)
- Zachary Lang (age: Big Kid)
- Anne Schlesinger (age: another Big Kid)
- 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!
אם אתה עוקב אחרי הבלוג הזה מן ההתחלה, אתה יודע, כי עד כה לא הזכרתי באמת הרבה על נסיעה עם שלושה ילדים, שניים מהם לוקים בסוכרת מסוג 1. היום חשבתי כתובת אתגר, בין הבעיות הגדולות ביותר היא שאני לא יכול לקרוא את תוויות המזון
Confused? Unless you speak Hebrew, I’ll bet you perplexed by the paragraph above!! Here’s my confession…I’m Jewish, I spent years in Hebrew school, I had my Bar Mitzvah in September 1981, I belong to a conservative synagogue, I am in Israel…..and I do not speak Hebrew!
Okay, not the biggest deal in the world. Perhaps for most that would be true. However, let me now translate for you (with the help of translate.google.com) what I wrote at the beginning and perhaps you will understand my dilemma.
Translation: If you have been following this blog from the beginning, you know that so far I have not really mentioned much about traveling with three kids, two of whom have type 1 diabetes. Today I thought I would address that challenge, and among the biggest problems is that I cannot read the food labels!
When we prepare to travel, packing the suitcases full of clothes is the easy part. Either Rachel or I (okay, 99% of the time it’s Rachel) print out a list of clothes for each of the kids, they retrieve the items and deliver them to our bedroom….it’s like a scavenger hunt. That part is easy! The challenging part is packing the suite case full of medical supplies, gathering the doctors notes, copying prescriptions, copying insulin pump failure protocols and instructions, obtaining an extra insulin pump for travel just in case, figuring out how we will travel almost 24 hours with supplies that require refrigeration, etc, etc, etc.
While we are getting much better at this (there was a time that we traveled quite a distance toward Vermont when we realized that we forgot to bring the insulin, and had to turn around), it remains a challenge and tremendous source of stress none-the-less.
All that said, we get it done and get out the door….no problem. That is until we reach our destination and realize that the day to day, or even hour to hour health of two of our kids depends on our ability to read food labels, which are in Hebrew. Even Rachel, who does understand a moderate amount of Hebrew, had trouble initially.
To be honest, this should not be the biggest deal in the world. But over the past six years we have become very comfortable with the foods we know and the labels that come along with them. We are very accustomed to measuring portions and figuring out the serving sizes. Here in Israel, that all seems to have gone out the window and we guess! We guess because many of the labels are different, we can’t seem to consistently figure out serving sizes to which the labels apply, we cannot always decipher ingredients, and when I am not with Rachel I’m lost. Part of the problem is that there are different “fonts” if you will that change the appearance of the Hebrew letters drastically. When we were in Italy, at least I could recognize word roots (thanks to several years of Latin in high school), and all the letters were recognizable. That’s just a bit different here.
Partly as a result of that, and partly because stuff just gets screwed up when we travel, blood sugars have been running consistently between 200 and 400 in both boys….mostly Matt. Even with temporary basal rates set, we battle high blood sugars all day. Matt and Jake have been doing remarkable well. I am sure they feel like crap after a long day in the hot sun and with blood sugar levels that would make most of us feel like garbage. They are real troopers!
I bring all this up not as a complaint, but more as a travel tip for anyone traveling abroad. In our busy daily lives we failed to plan for one of the important thing that has become so routine for us at home. To us, counting carbs has become part of our autonomic nervous system…..like breathing and blinking….it just happens and we don’t really have to think about it. In this case, we (or perhaps mostly I) should have thought about….should have known it would be a challenge, and should have prepared.
So what happens next? We will make our adjustments, we will be pushy in the grocery store and force people to answer our questions when they are just trying to buy their milk, we will get better at guessing and we will find the brands and foods that work for us the best. Over time everything will get much better, we will maintain a positive attitude and will have fun in spite of the challenges.
Beyond that, and most importantly, we will adapt and overcome. We will turn our challenges into experiences that make our family stronger. Rachel and I will learn lessons from our brave little boys, and will be proud of the fact that in the world related to their health, they are not so little…they are indeed mature beyond their years and have just as much to offer in our solutions as Rachel and I do (though I will admit that this is something that, especially in the heat of the moment, I tend to forget). We learned a long time ago to expect the unexpected and to adapt and overcome….that’s just how we roll!
Tomorrow we’re taking the 5 hour drive to Eilat, Israel’s southern most city….an ocean resort on the Red Sea. Not sure how the internet connection will be there, so if you don’t hear from me for a few days don’t worry….I’ll get you caught up when we get back to Yavne’el.