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

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!

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7 responses

  1. Kim Green

    Love it, laughed, cried – I am impressed that you are as good of a writer as you are photographer! Looking forward to seeing you at the walk! 🙂 For hope, for love, for a cure. xoxo

    September 7, 2010 at 7:03 pm

    • Thanks Kim! See you down by the river!!!

      September 7, 2010 at 9:33 pm

  2. Diane Mangano-Cohen

    Hi,
    This was an excellent appeal. I am a friend of your parents and while we have never met I feel as though I know you and your beautiful family. We can not walk with you but will donate and totally be with you in spirit.
    Keep up the fight and know there are many people who care.
    Diane

    September 8, 2010 at 8:34 am

  3. chrissie g

    sniff, sniff…had to let emmy go to college again..never stop worrying.
    won’t make the walk – gotta go to my…..(insert big #) high school reunion)
    love you stuff and you guys!
    xo

    September 8, 2010 at 12:29 pm

    • Hi Chrissie. I admire your courage in letting Emmy leave the nest like that. I know they have to grow up and head out, but right now I can’t get my head around that!! Have fun at your (insert big #) reunion!! We’ll miss you at the walk – love you guys too!!

      September 9, 2010 at 6:50 am

  4. Scott:
    Coming from a parent with a child with type 1, you are an inspiration to us all. We thank you for all that you do

    September 13, 2010 at 10:54 pm

    • Thanks Rob…coming from you that means a lot…we are grateful for all you do as well!!

      September 14, 2010 at 6:42 am

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