Stories of Caleb and living with type 1 diabetes.
I found this video very powerful.
Thank you Adjoa for sharing it. Not only does it articulate the facts about type 1 diabetes clearly and succinctly, it addresses a very important issue to children with diabetes – bullying. Personally, we have yet to experience anything remotely like this, but perhaps that’s because Caleb is younger. I’m doing what I can to educate the people around Caleb in hopes to pre-empt it. Time will tell if I’m successful.
Day 4 of Diabetes Blog Week.
To carb or not to carb. Today let’s blog about what we eat. And perhaps what we don’t eat.
In Caleb’s words (sorry, but this is a bit of a ramble):
I don’t eat peanut butter because I’m allergic to it. I don’t eat frogs, rocks, grass, slime or anything like that.
I like apples, cheese and crackers, pretzels, Nutrigrain bars for snacks and sandwiches, yogurt parfaits, peppers and fruit for lunch. I like cereal, muffins, toast, waffles and oatmeal for breakfast. I like pasta, chicken parm (but I don’t like eggplant parm) tacos, lentil soup and chili for dinner and cake, cookies or fruit for dessert. One time Dad made a wrap with sausage, egg and cheese and I liked that. I also like pizza, Chinese food and salad. I like cucumbers, carrots, Swiss cheese, pears, bananas, grapes, strawberries, mangoes, peaches. I like every kind of fruit there is. Ice pops, ice cream and jolly ranchers are good.
I think he would have gone on forever, but at this point, I just said, “Thank you, that’s enough.”
I worry, of course, about the impact that diabetes has on Caleb, both physically and emotionally. I worry about whether he feels restricted when it comes to food. There is nothing that I say “no” to because of diabetes, but there are things that I avoid because of the impact that they have on Caleb’s blood sugar. I am pleased that his response showed no indication of that. The fact that Caleb does not eat frogs or rocks or slime has absolutely nothing to do with their carb count, fat content or impact to his blood sugars – I promise.
Day 1 – A day in the life of…diabetes.
Day 3 – Your biggest supporter.
Tomorrow’s topic – Let’s get moving.
As we began our CGM adventure with much trepidation, we were embraced, truly embraced, by our friends Bill and Suzanne.
I think the first time I “met” Bill was when he commented on Caleb’s low video and dubbed him a “Diabetic Ninja“. Shortly thereafter he named Caleb “Diabetic of the Day” in one of his own videos. Bill was one of the first people who found us through Caleb’s face on YouTube. I remember how Caleb smiled when he saw that he was in Bill’s video. As I’m sure was intended, it made him happy.
We have kept in touch with Bill and he and Caleb even have a friendly rivalry over their favorite baseball teams – Bill’s Red Sox v. Caleb’s Yankees.
Through Bill, we met Suzanne. Suzanne and I tweeted a great deal about DexCom. She answered my unending questions and understood my apprehensions about putting Caleb through another skin piercing process. She knew of Caleb and Bill’s relationship and asked if a video from Bill might help us prepare for our training. Of course the answer was, “yes”.
So Bill and Caleb made a deal to make videos for each other. Here’s Bill’s:
Suzanne also joined in the video encouragement:
To which Caleb responded:
Bill and Suzanne helped us so much through our CGM transition. They went out of their way to make these videos for Caleb and sent us many heartfelt emails and tweets. Thank you my happy diabetic friends!
“It’s all about your attitude!” Yours are fantastic, influential and even contagious!!
We first learned of Nick at our OmniPod training in April 2007. Caleb was diagnosed only months earlier and one of the things that provided me great comfort was learning about people living full, enriching lives with diabetes. I heard of everyday people – someone’s friend’s daughter or other patients of Caleb’s endo. There weren’t too many public figures living with diabetes that I found relatable. So when I heard of a young man who was diagnosed shortly before Caleb, using the same pump as Caleb, and was continuing with his career in the public eye, I was intrigued.
Since then, Caleb has become a true Nick fan. He owns his music, has been to his concerts, and has various books, magazines and paraphernalia featuring Nick and his brothers. Caleb enjoys singing, plays the piano, is learning the guitar and recently acquired a set of drums which he practices daily – sound familiar?
When I saw the tweet from Amy about Bayer’s Express Your Simple Win contest last spring, Caleb and I got to work. In October he found out he was one of three grand prize winners and would be meeting Nick in Orlando.
Caleb, his brother Colin and I had the privilege of meeting Kevin, Joe and Nick at their concert in Bethel Woods in August 2008. It was a fantastic experience. We waited two hours to meet them for about 2 minutes. As soon as Nick heard that Caleb also has diabetes, his focus was 100% on Caleb. There were high fives, fist bumps, some words exchanged, a picture taken and huge smiles. Caleb’s reaction was priceless. He skipped out of there declaring, “that was totally worth the wait!!” I saw firsthand the real, tangible influence that Nick has. Two minutes was a thrill; I couldn’t imagine what an intimate meeting would be like.
Here’s how it went:
Upon checking in at the hotel, we heard, “Are you here for the Simple Wins contest? Is that Caleb?” It was Bradley, one of the other winners, and his mom. Caleb was so excited to meet them. That night, Caleb and I stepped out on the balcony of our room and heard, “Oh my goodness – is that Caleb? We’ve been looking for you all day!” It was Lauren, the other winner, with her mom and sister on the balcony next to us. Another great thrill. Meeting Bradley and Lauren was a prize in and of itself to Caleb. They were able to talk amongst themselves, whether about baseball, singing, helping the community, or about diabetes, and feel connected. There was an instant bond.
On the day of the meet, the winners were brought to a grand conference room. Inside they chatted, took pictures and waited. First came Big Rob. He greeted everyone (or perhaps scoped out the room for Nick’s safety) and took pictures. Caleb was on top on the world. Rob left and while everyone talked about what fun that was, Nick nonchalantly entered.
The first thing I remember him saying was to Caleb: “I know that YOU are a Yankees fan. You’re a good man.” I didn’t think it could get better than that moment. The four of them spoke of their interests, their stay in Orlando, the music they liked and they talked about diabetes too. He asked Caleb if he ever went low while he was playing baseball. It was nice. It was comfortable. It was exciting.
They took some pictures, Nick autographed Caleb’s Burning Up book on the page where Nick talks about his diabetes (Caleb proudly declaring, “I read the whole thing”). Then they sat down and chatted some more. Caleb talked about the concerts he attended. Nick recalled being under the weather at one of them. They talked more about the Yankees and the World Series. Nick described how he watched the series on a laptop in Italy at six in the morning. Then “Bounce” became a topic of conversation and Caleb was invited to perform his version of Bog Rob’s “chicken wing” and “ham and cheese”. Big Rob came back in to watch. It was a reserved performance on Caleb’s part, but still great to see it bring smiles to everyone’s faces.
I spoke with Nick’s father, another kind and gracious man. Upon thanking him, he responded, “we understand”. It’s true. They know. He explained that Nick does this because when he was diagnosed, he wanted to know of the athletes and musicians and other public figures who were living with diabetes. The list was short. Nick understands the comfort it brings, and his ability to provide it. So he does.
I spoke to Nick. I took the chance to explain why what he does is important to us. Caleb doesn’t wonder if diabetes will limit him. He has virtually always had Nick as a point of reference to know that it won’t. I don’t think Caleb has yet to even consider if diabetes could be an obstacle to anything he wants to do. I credit Nick a great deal for giving that to him and I told him so.
As things were wrapping up, Caleb mentioned to Nick that they used the same insulin pump. They took turns pulling up their shirts showing each other their Pods.
I have never seen Caleb smile so big or for so long. Ever.
Thank you Nick. Thank you Bayer. You have created meaningful, lifelong memories. The day itself was a thrill, but what I hope is that at least one day in Caleb’s future, when diabetes is proving difficult, he will think back to this meeting in Orlando. He will remember a young man that was not all that different from himself: a young gentleman, with a curl to his hair, a love of music, a charming smile and the same daily challenges to manage his blood sugar.
I hope he will think of Nick and remember that diabetes didn’t slow him down and it doesn’t have to slow Caleb down either.
There was some news this week in the diabetes community and there have been mixed reactions. Some are excited, hopeful and encouraged. Others are frustrated, disheartened and even resentful.
I am a little of both. I am cautiously optimistic. That’s how I am in general, and I am the same as it relates developments in diabetes research and potential advances.
A friend blogged about her sadness regarding the outlook for a cure for diabetes after hearing the reactions from others to this week’s news. The fact that a time frame of five to ten years for a cure has been given to people diagnosed with diabetes for tens of years was a little more than discouraging. I understand and relate to this.
This is my reply to Rachel:
I don’t think people are made much more skeptical than I am. I have this book which dedicates a page to every day of the year and describes what people are like based upon the day of the year they were born. My day is called “The day of the hard look”. It defines me perfectly – anyone who knows me is fascinated at the eeriness of the accuracy of this book as it relates to me.
That being said, I have hope.
I don’t really understand why people (doctors) need to define a time frame to this. I suppose it’s because it’s something we all want to hear. Giving it definition when it is IMPOSSIBLE to define is what makes this situation that we are in. Once the measurement is defined, we have something to look at and say, “well that didn’t work – they were wrong – they lied – it WON’T happen.”
But I haven’t given up. The time frame may be wrong, but the theory, I believe, is right.
There ARE resources – many resources – tasked to tackle this. I don’t have the slightest clue when their efforts will be realized, but I truly believe they will be. It may be 100 years from now, it may be 10. But I believe this puzzle will be solved.
None of us are sitting around waiting for a cure. We are all doing everything we can to keep ourselves or our kids healthy now.
I think of the people who lived with diabetes in the early 1900s who starved themselves to live another day, every day, in hope of a cure. The cure came for many of them. It was insulin. It saved their lives.
Now I am NOT saying that insulin is a cure, because I know darn well that it is not. But for these people it might as well have been. From their perspective it was.
I hate what diabetes does and makes us all do as much as anyone. But, I am so very, very thankful (ok, I’m choking up now) that Caleb has the benefit of the advancements that exist today. Even on the worst of days, when I don’t think I can take another second of the crap that diabetes presents us, I remind myself it could be so much worse.
I don’t know when there will be a cure, but I am still hopeful.
More than that, I am hopeful that along the way there will be many more advancements that will make living with diabetes easier and safer. If there are as many in the next 10 years as there were in the last 10 years, living with diabetes in 2020, when Caleb is just 17, will be a very different thing than it is today.
I have read a lot of the responses to Wednesday’s news and appreciate the varying perspectives that have been shared. Although different, and at times at opposite ends of the spectrum, I am able to relate to most of them.
I am “the day of the hard look”. No one who knows me would argue this. But I am still optimistic. Cautiously optimistic, but optimistic nevertheless.
Caleb started using the DexCom Seven Plus continuous glucose system in September. This week was his first endo appointment since starting, a tidy three months later. I had no apprehensions about this appointment. In fact, I expected us to be in and out quickly. We just needed an update to Caleb’s prescriptions in addition to the normal routine.
I was however curious to see what impact using DexCom had on Caleb’s A1C. His A1C results have always been strong and we seem to keep chugging along.
This quarter’s results were no different. His A1C was unchanged. I wasn’t necessarily expecting a change, but I am a numbers and measurements kind of person. Even if it went up, I could say we were dealing with lows better. We had introduced a significant enhancement to his diabetes care. It seemed odd not to have it reflected in “the number”. If there had been any measurable difference, then I could attribute it to CGM and thus justify its use. His A1C was not giving me that justification.
So why are we doing this?
My biggest reluctance to starting CGM was asking Caleb to endure more discomfort without realizing a tangible benefit. He would have to be poked. He would have to wear the transmitter and carry the receiver. He would be the one who would be interrupted by all the beeps and alarms. Of course this is all to improve his glucose control, but that’s not measurable to him. I would be able to rest a little easier at night. I would be less stressed when separated from him. I would be less anxious between finger sticks wondering what was going on inside him. It seemed he was making all the sacrifices and I was getting all the benefit. So it would be nice to have something to point to to say yes indeedy, this is worth it – look, your A1C shows it. There’s no doubt about it. This was the right thing to do. It’s all here in black and white.
That is not the case.
Caleb’s doctor explained that when you already have tight glucose control, CGM typically will not change your A1C result. However, the quality of that result is often improved. In other words, the average of your blood glucose is still the same, but you are avoiding the high highs and the low lows that cancel each other out. The peaks and valleys are more subtle. The A1C remains unchanged, but it’s still a “better” A1c.
Hm. Okay. So do I believe that is the case with Caleb? It may be. I feel like we have caught things quicker and there are less surprises. We still have highs and lows, but they seem less severe. I don’t tend to go on feelings though. I like hard facts. Embracing this concept, although perfectly logical, isn’t all that easy for me.
After tweeting my concern (and doing a poor job of it because I led people to believe that I was a bit of a lunatic and wanted Caleb’s A1C lower and truly that was not my objective at all) I believe I got the justification that I was looking for. My wise friend, Melinda, helped me get there. She has a teenage son who has lived with diabetes since he was just younger than Caleb is now. Talking to her is like taking a magical trip into the future and getting a flavor of what it might hold for us.
I realized, with Melinda’s help, that an A1C isn’t the only way to measure the success of CGM. From the beginning I have stated that DexCom provided me some relief. I could see things before my eyes instead of worrying and wondering. I think I got so used to that so quickly, that I didn’t realize how much of an impact it has. I know that I am generally less anxious about Caleb’s BGs. I am wound pretty tightly to begin with, so it doesn’t take much to get me excited. There is a true, tangible value in decreasing the stress factor. It’s one that is very important to me. I know that Caleb has a lifetime of this management in front of him and how I handle it today will impact how he handles it tomorrow.
These are Melinda’s words that eased my worries:
“But HE benefits from having a less stressed-out parent. They certainly pick up on our cues. There’s a lot of value in that too.”
I know I do a good job of keeping Caleb’s blood sugars in tight control. I also know I do a poor job of hiding the impact the out of range numbers have on my psyche. That is where I need help and DexCom has provided it.
The answer is no, A1C impact is not all there is to CGM. There is much more. Thank you Melinda and all my Twitter friends for helping me understand that.
A little over a year after Caleb was diagnosed, when the fog had cleared, we had experienced all our “firsts” and things were more or less chugging along, my attentions shifted. The present was under control, now what about the future?
I made my first video. The intent was to bring attention to work being done to find a cure for type 1 diabetes. It turned into so much more than that. It entered me into a world I hadn’t realized existed, or at least one that I could be so much a part of.
Caleb, his face, his story, his personality, have all stretched across the world and brought me, and him, within reach of a support system that we would not otherwise have. I am so grateful for this unexpected byproduct.
This is my first work. When I made it, I could not watch it without crying. No matter how many times I watched it, I would choke up. Now when I watch it, there are two things that I note: (1) how much more effective my message could have been had I made it more succinctly (yes, it’s long – sorry), and (2) how my perspective has changed. The story is still true. The spirit of the message still resounds. But now I know the Caleb who has been living with diabetes for almost three years. He has adapted. He has flourished. He has shown me what perseverance is. Diabetes does not define Caleb. He just happens to be living with it. I can watch the video now without tears because I know that Caleb.
So, as this and other videos I have made begin, This is Caleb…
At least a part of him.
…and Caleb is one of the grand prize winners of Nick’s Simple Wins contest. The Grand Prize? Meeting Nick Jonas in Orlando!!
We could not have done it without all of you who watched his video! Thank you so much!! In addition to our “offline” friends and family, our Facebook and Twitter friends came through with force and helped him win! Thank you for watching and posting and retweeting!!
If you didn’t catch the contest video, you can watch it by clicking on the above link (he sounds so funny without his front teeth – a lot happens in six months!).
Here’s the original version we did not submit because the rules strictly prohibited logo usage, but since we are in the middle of the World Series I thought it would be fun to include. And if you haven’t seen enough of Caleb (which I know you have – sorry) here’s another entry he did just because he’s a crazy nut.
Caleb is very excited. Thank you for giving this gift to him. I have no doubt this will be an experience that he will treasure always.
It’s been almost two months since Caleb had his first DexCom insertion. Thankfully, the learning curve of CGM is not nearly as great as that of pumping. Plus, if something goes wrong with the transmitter or sensor or even receiver, there is not as much panic as when something goes wrong with an insulin pump (like ripping it off the first night because you completely forgot about it). You’re not cutting off life support after all.
So the transition to CGM is much more subtle than the transition to pumping. That was a relief.
We have had a couple of bumps. For nights on end, it would just not work. It literally seemed to go to sleep when Caleb went to sleep and wake up when Caleb woke up. With some help from fellow DexCom users, that was resolved. The receiver works great when it’s in the bed with Caleb. Not so great on the nightstand or windowsill. We had a receiver go kaput. We’ve had a couple of off sensors – one just complete fail. DexCom replaced them.
But otherwise. No real issues. It’s kind of “plug and go”. Our training consisted of watching the nurse do Caleb’s first insertion. Oh, and I read the manual.
CGM has had an immediate impact in several ways.
I was instantly more relaxed. We had pizza that first night and I wasn’t on edge wondering if I got the initial bolus right or if the extended bolus would cause him to go low. I could watch the changes in Caleb’s BG as they occurred. But on the flip side, I get stressed as I watch the BG rise. And when it continues to rise despite corrections, it’s downright maddening.
Because the blindfold is off, I could see for certain what I always suspected. Caleb’s blood sugar was often rising significantly within the first hour after he ate. It came back down at the two hour mark and I saw the happy in-range BG we typically see with fingersticks, but now I knew for sure what was happening in between. Frankly, it was depressing. His graphs looked like the lie detector charts of a big fat liar. I mean, serious pants on fire. It wasn’t surprising, but there had been comfort in dealing with the ten or twelve points in time and just ignoring the rest.
This new knowledge is power. I was able to make basal changes or adjust the time of a prebolus making immediate impacts. Caleb’s chart looked more truthful right away.
CGM provides another form of relief – during the times when I, his diabetes manager, am separated from him. Caleb has a great support system at school, but now there is an added safety net. Should he not feel a low coming on, there is a plan B. Another voice buzzing from his hip that might notice a low before he does. This applies to other times too – like after-school activities or the rigors of Walking Club before school on Wednesdays. We have a little more freedom; a little less stress.
In general, there are times where we simply have information that we would not otherwise have; times when we do not have to stop, open up his PDM case and go through the whole exercise of a fingerstick. A quick peek and we have a sense of what to do. We’ve either eliminated the wonder or saved the inconvenience of an extra BG check.
And here is my favorite thing about CGM: I love, love, love the directional arrows.
Directional arrows make all the difference in the world to me. If a regular blood sugar meter could tell the direction of blood sugar levels, even with just 10 points in time each day, that would be a huge improvement. If Caleb is at school and the nurse calls me with an unusual situation, she will tell me his BG from the finger stick and the direction of the CGM. This can change the course of action from that if only the BG was available. If I had known the direction of Caleb’s BG that night after eating pasta at the restaurant, I KNOW we would have avoided that low. I would have seen “121” and double arrows down. That is so much more meaningful than just “121”.
The last enhancement worthy of mention is nighttime. It’s a little less grueling. Looking at the CGM is significantly easier in the middle of the night than inserting a test strip into the PDM, poking a hole in Caleb’s toe and (often pop-eyed) trying to align that little half circle with the drop of blood. Some nights I am so out of it, with little depth perception, that I am dabbing a blood-free part of his toe waiting for it to register. I still have to do all that when there are out of range BGs, but the “just make sure” checks are much more seamless.
So here we are. We were reluctant to start. Underwhelmed when we began. We are starting to adapt.
Lila is four. Caleb was just shy of his fourth birthday when he was diagnosed. In both appearance and personality, Lila tends to be more like Caleb than older brother Colin. For some reason that has always made me think that if either Lila or Colin were to develop D, it would more likely be Lila. Not logical, but it’s what I have always thought.
Driving home from preschool the other day, out of the blue Lila says, “Mom, can I have some milk?” Lila has always enjoyed milk, but with her meals. She has never been one to drink much beyond that, and if she does, it’s water. For about a month before the light bulb went on that something might be up with Caleb, he requested milk. It should have been a reg flag, but I was clueless. “Icy, icy cold milk,” he wanted. Visions of him asking for it are etched in my memory because at the time, I just thought he was growing. But it was a telltale sign of diabetes that I completely missed.
So when Lila repeated Caleb’s request, a pit formed in my stomach. I started to think about the other symptoms. Frequent urination – nope, not at all. Lethargy – no way. Weight loss – I really don’t think so.
But I couldn’t get beyond the taboo milk request.
We arrived home, unpacked her backpack as usual, and sat down at the kitchen table. We’ve done it before, so it’s not a big deal – I ask Lila if I can check her sugar. “Sure Mom.” I prick her finger, the test strip soaks up the blood and the five seconds of wait, which seem like an eternity, begin. I’m telling myself this is not a big deal. She’s just thirsty. She has no other signs.
Then the number pops up. 257. 
Well that was not what I was expecting. “Lila, let’s wash your hands.” “Okay mom.”
Another prick, another blood soak – error. Another prick, another blood soak – error. I’m trying not to panic. But I am now thinking of the logistics of calling my husband to come home. Do we go straight to the hospital or call Caleb’s endo? Who’s going to get the boys from the bus stop? Can we get her pumping right now? Will insurance drop us with two diabetics? And most of all, the flood of memories of Caleb’s diagnosis comes back to me in a wave. Lila is starting to get anxious with the pokes and now they hurt. How am I going to to get her through what lies ahead – shots, insertions, more finger sticks. I’m looking at her in the eyes, trying to stay calm, but my heart is breaking.
Another poke, another soak. 168. Not what I was hoping for.
I finally give her the milk she requested and the cookies from lunch she didn’t finish at school. We go about our normal routine although I have little ability to process thought. We are communicating, but I have no clue what I am saying because I’m still thinking about the hours and days and weeks and years ahead. I give it about fifteen minutes, pull out a completely different meter, and we do another poke and another soak.
104.
That’s more like it.
Just like that, life resumes to normal. My shoulders drop a little from the relief. I give Lila a big hug and she is oblivious to the future I envisioned for her over the last twenty minutes.
Just to be sure, I checked her sugar later that day, 84 and the following morning, 82.
All she wanted was a glass of milk.
This is Caleb... 