Rachel and I have decided to participate in the 2011 JDRF Ride for the Cure at the Tour de Tahoe. Please let me tell you why.
For the past several years my family has been involved in the Walk for the Cure. The Walk is the main event in JDRF‘s efforts to raise money to find a cure for Type 1 Diabetes. Well, there is still no cure, and as a result 2 of my three sons must do many things every day that other kids their age don’t have to worry about.
- My two sons still need to check their blood sugar multiple times every day.
- They continue to be tethered to insulin pumps.
- They continue to be hooked up to continuous glucose monitors.
- They get needle sticks to change those insulin pump sites every three days.
- They go to the school nurse to have their blood sugar checked when other kids go right to gym or lunch.
- They sit on the sidelines of the lacrosse game because their blood sugar bottomed out even though it’s their shift to play.
- They watch other kids eat all of the things that they truly desire but know would be very bad for them to eat.
- They have to remember to never leave the house without their “kits”…the supplies that the require to take everywhere they go.
- They trade in their Halloween candy.
- They wear medical identification everywhere they go…or at least they’re supposed to….(Matt, are you wearing an ID today???).
- They add up every carbohydrate for every meal and snack they eat.
- They end up in the hospital when they get a routine stomach bug.
- They get woken up in the middle of the night, sometimes more than once, to have their blood sugar checked and they’re tired the next day because of it.
- They have parents who have not slept through the night since the day of their diagnosis.
- They have a brother who wonders whether or not some day he will become diabetic.
They have to do all of this, and more, in order to avoid immediate life threatening emergencies and/or long term co-morbidities of T1D such as heart disease, blindness, neuropathy, and kidney disease.
I’m tired of waiting for the cure…I’m tired of walking…it’s time to step up the pace!!
To those of you who know me, it’s no secret that I need to work on getting myself into better physical shape – that is not an invitation for snide remarks in reply – You’ll see that I’ll handle that on my own shortly if you keep reading. It’s also no secret that Rachel and I have worked tirelessly to raise money to help cure Type 1 Diabetes. So, it seems that an opportunity to put the two together is the perfect combination!! This year our South Jersey JDRF Walk takes place on a weekend that we will be in Boston celebrating the Bat Mitzvah of one of our cousins. Although we won’t be here for our Walk this year, Rachel and I feel strongly that we need to continue our efforts in funding the research that will come up with a cure for our sons. At the same time we acknowledge that the training regimen for the walk does not accomplish my goal of losing weight and improving fitness. So in an effort to continue our JDRF fund raising efforts, and in the interest of transforming my abdominal keg back into a six pack, we have decided to step up the pace of both our exercise routine and our fund raising.
Yesterday we registered to participate in the JDRF Ride to Cure Diabetes in Lake Tahoe in September. We will be riding the 72 mile circumference of Lake Tahoe with lots of others who have the same goal. As we train over the next few months, and as we ride through the High Sierras, we’ll be focusing on that long list of stuff that my kids need to do, and hope that it inspires us to pedal our way through the ride to help cure Type 1 Diabetes.
What can you do to help? Well, if you’re up for one of the most scenic bike rides in all of the United States and want to help raise money for a great cause, then click this link to sign up and join us.
If you’re not that ambitious, but you are feeling generous, then please feel free to click in this link (http://www2.jdrf.org/goto/teamkasper) and make a donation to help support our cause….we would truly appreciate the support!
I know that riding 72 miles in the Sierra Nevada mountains won’t be easy. But it’s nothing compared to the feat that my kids, and everyone else with T1D, accomplish every day in beating this disease. I know we can beat it for good, and I’m not gonna stop trying until we do!
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!