I Held Hope In My Hands (The one were my daughter raises her hand and says “Let it be me”)

April 5, 2013By 17 Comments
Anna, her lunch, and her "bionic pancreas"

Anna, her lunch, and her “bionic pancreas”

Since Lauren was diagnosed way back in October of 1997, I’ve insisted we do two things consistently: not let diabetes steal our joy in life, and focus on “visualizing hope.” The first one has been a challenge but I’d check off “well played!” so far in our lives. The second? It’s not been easy.

Hope in itself is relatively simple. You feel it in your heart. You keep it in your head. You grab onto little snippets and bits and sound bytes and studies and information and you absorb it.

But you cannot really “see” or “touch” hope, right? Although at a time when a room full of adults was struggling with just that, a much younger Lauren once set them all straight. So she’s been pretty good at it. But me? I’ve wavered.

Until this week. Because on Wednesday, I had lunch with an amazing young woman I’ve known since she was a camper at the Clara Barton Camp for Girls With Diabetes. Anna is older than Lauren by just a few years, and was one of the gang of “bigger cool girls” at camp Lauren looked up then and still does now. I’d lost track of Anna for a few years until someone passed me a note as I was sitting at a diabetes conference in Orlando three years ago. “It’s me! Anna from camp! Look back!” the note said. I turned around and there was her smiling face. Dear, smart, brave, funny, inspiriting Anna: one of the CBC girls I’d always loved Lauren looking up to.

Fast forward to Wednesday. We sat down at the Boston restaurant we were meeting up at  and before the waiter could even ask for our drink order, I shoved any other thoughts and actions aside, turned to Anna beside me and said:

Show me. Show me now.

 Because Anna was, at that very moment, officially up and running on the Artificial Pancreas. As part of the Massachusetts General Hospital Study, she was hooked up to some hardware (two pumps and a continuous glucose monitor) which were communicating with an iPhone (of all things! But of course) and were … taking care of her diabetes. That meant that for the first time since I’d first known Anna (and I’ve known Anna for almost 16 years), she wasn’t thinking about how many carbs she’d order (or avoid). She wasn’t stressing that her morning work out was going to send her low. She wasn’t pulling a glucose meter out of her bag to prick her finger, get a number, thinking ahead to the next three hours of her life, estimating how quickly she’d burn the carbs she’d counted for lunch and then administering a dose of insulin that might or might not work out over the coming hours (only to be repeated again in a few hours).

Nope. Anna was just being Anna. And like a bolt of lightening slamming down on the table in front of me: There it was.

Hope that I could see. Hope that I could touch. Hope that I could pick up, stare at, flip around in my hands and put down on the table in front of me. That iPhone taking care of Anna was the first time I’ve actually touched hope in 16 years of living with Type 1 diabetes in my family.

Powerful, powerful moment.

Now I want to be clear as I discuss this: I do not, absolutely do not, consider the APP or any other smart tool a cure for Type 1 Diabetes. But good lord, now that I’ve been right there next to it, I sure has all heck consider it a monumental leap.

And here’s the wickedly, wickedly cool thing: it happened because of us. All these years of walk teams and gala donations and scraping together what we can for friend’s efforts and asking my friends over and over to give and give more?

It’s not just pie in the sky. On Wednesday, I looked at what those donations have done for Lauren and the world. It’s real. The hope is real. I freaking held hope in the palm of my hand.

So Anna ordered, joking at first about going for the gnocchi just to SHOW the APP what’s up in the world, (and her nurse … when you are in this study a nurse stay with you all the time … said “go for it!”) but deciding to opt for a nice sandwich with thick bread, homemade chips and a diet coke (a girl’s gonna be a girl after all) and then …. We just chatted and ate.

Okay, I tried to eat while constantly, constantly looking at the information on Anna’s blood sugars reading out on the iPhone while she ate. Anyone in diabetes knows what a meal spike looks like. If you don’t, here’s a visual: If I could ski a meal spike line, I’d have to carve so hard my legs would scream. Lindsay Vonn would look down it and say “damn. That’s gonna be fast.” Driving down a meal spike line would strain your brakes as much as driving back down the Mount Washington Auto road. Got it?

So cynic me was watching the screen as Anna ate, waiting for the meal spike.

There wasn’t one. Just a flat line. Stable (Look! I said that word and didn’t despise it! “Stable!”) blood glucose levels. Through an entire meal.

Okay, so a disclaimer: All this is not easy. Anna is hooked up to a heck of a lot of stuff. Two pumps – one with insulin and one with glucagon. A Continuous Glucose Monitor. Her belly looks like a target range with all the sites. There’s an IV in her arm that’s bothering her a bit, and she has a nurse with her 24/7. But the nurse is really nice and way cool. And Anna isn’t in a hospital setting. She’s staying in a hotel room close to the hospital, and within walking distance to her Boston job. She goes to work all day, meets friends for lunch, goes to the gym and basically enjoys life while being studied. Oh, and the iPhone she carries around is also attached to the second part of the CGM and its kind of big and kind of like a block …. In other words: this is not the final product. And since Anna was in her first day of the study, the system was still “learning her.” So while her blood glucose was even, it wasn’t down, down yet. But it was slowly, carefully, awesomely getting her there.

I think if I picked up and touched it one more time Anna was going to throttle me. But here it is: HOPE that you can TOUCH!

I think if I picked up and touched it one more time Anna was going to throttle me. But here it is: HOPE that you can TOUCH!

But when you consider this all started as a dream, and moved to people in a hospital setting hooked up to a laptop, and then moved to people in a hospital not hooked up to a laptop but still kept inpatient … and now it’s out in the wild? It’s remarkable.

And I’m overwhelmed. And just like my daughter said on that day she told all the adults about a product called “hope,” I am feeling it. Hope helps. The idea that one day, people with diabetes could live more simply, with less fear and danger, with less weight on them while we work toward a biological cure?

I’m all in.

And here’s the next cool part: Lauren’s been pondering being in the study for a while now. She understands it’s hard. You get poked and prodded and studied and more. You have to give up a week (plus more follow up days) of your life to do it. I truly feel Anna is a hero among us for doing what she is doing.

Yesterday, after I told her all about my day with Anna, my daughter Lauren, raised to embrace joy, to visualize hope and to always, always, stand up and do, raised her hand and said “pick me.”

So if all goes well, late spring or early summer, Lauren will be in Boston hooked up to the hardware and hauling around that brick with a nurse in tow. She’ll be ordering carberific meals and hoping for straight lines too. And that day, I won’t just visualize hope. I won’t just pick it up and flip it around in my hand.

Nope, I’ll do way more than that: I’ll take it into both my arms and hug it tighter than I’ve ever hugged anything on this earth. And in that hug, for the first time since October 28, 1997 at 2:35 p.m., I’ll hug my daughter knowing with all my heart that hope is real.

I cannot wait to tell you what that feels like.

 

Please follow Anna and her experience in the study via her posts at GLU. CLICK HERE to follow her! And while you are there, learn more about and register to be part of GLU. It’s pretty durn cool.

Filed in: AdvocacyCampscool new diabetes toolscurefeaturedFundraisingGeneral Healthglucose meterInspirationJDRFResearch Tags:

Comments (17)

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  1. Lynn Pratt says:

    Your article truly brought tears to my eyes, and not just a few! It is so wonderful to hear things like this. Even though it may be a long way off, it’s there!

  2. Scott E says:

    These are the kinds of stories that really give me hope for the future. While I’ve grown to accept my diabetes and all that comes with it as second-nature, I’ve forgotten how much energy (and guesswork) it takes. The thought of perusing a menu for the purpose of deciding what I might enjoy tasting intrigues me.

    I’m sure the devices will ultimately get smaller. The dartboard-abs? If there’s one dis-incentive to the APP, that’s it. I hope it can be overcome…

    Thanks for the enlightning story.

  3. Beth McCrary says:

    Thank you Moira for sharing! Tears and joy, nothing but tears and joy for this d-mom!

  4. Lori Schur says:

    What an amazing story and such an incredible young woman. I am moved to tears and filled with HOPE for all our loved ones with type 1.

  5. Abby Bayer says:

    And now I’m crying. This gives me so much hope. SO much. I wore this for 24 hours stuck in a hospital, and even that was better than the way I live every day. I’m not a complainer, but I sure am a hope-er.

  6. Katie says:

    I just read her summary of day 2 and could not believe hearing that after eating two bread sticks, sweet potato dish, two glasses of wine and dessert she had NO SPIKE. This is awesome!!!

  7. Mary Horn says:

    Thanks for sharing Moira. Though the artificial pancreas isn’t a cure, just think about how dramatically it could change the lives of our girls. Hope is an incredibly powerful thing. One step closer . . .

  8. Linda Short says:

    Moira, this brings tears to my eyes. I am so excited as I hear about the trials expanding. My wish is for Lauren to do this for all of us.

    On a personal note, my daughter is “running the mile” at school right now and we are very concerned about her blood sugars because they keep dropping today. I think the APP would help every day, but especially THIS DAY!

    My heartfelt thanks to all that have brought us this far…

  9. Sara says:

    As Meri would say “hopers gonna hope” :D

  10. Amy Bozza says:

    As a mom of two T1, reading this with tears running down my face. Thank you for sharing Moira. HOPE…we all must hold onto to that every single day! The horizon is looking brighter!!

  11. Cassie says:

    Tears here too. Thanks so much for sharing hope with us all.

  12. Fascinating stuff. And seeing it in the real world brings hope to the next level, doesn’t it?

  13. Karen says:

    This is so so exciting!!!! So when she eats, does she have to tell it something? Like small meal, regular meal or large meal? Or does she just go ahead and eat? Either way, it’s so much better than what we do now – and a whole other world from what we did when I was diagnosed in 1979! Wooooooooohooooooooooo!!!!!

    • Moira says:

      Karen, your answer, right from Anna:

      When I eat I have the option of “announcing” the meal-not carb counting by telling it either a little amount, a typical a mount, or more than a typical amount. But you don’t have to-the advantage of doing that is the insulin kicks in much faster and doesn’t wait until the pancreas realizes that your bg is starting to rise….glucagon works much faster than insulin.

  14. KateB says:

    Thank you. Just… thank you. I’m T1, but I cried more as a parent because while I need hope every day for myself, I would need it so much more if it were my kids. So thank you for putting so eloquently into words what this advance in management means for us and our families. Thank you all.

  15. Nichole says:

    What a wonderful article to read as a mother. Next month will mark my daughters 2 year mark with this terrible disease. Being only 8 years old dealing with this makes a parent feel so helpless. We are the ones that are suppose to fix things. This will be our second year doing the JDRF walk and I have gotten involved! I am adamant about finding a cure but until then this is just AWESOM! Thanks for sharing the HOPE!

  16. Kristin says:

    This is fantastic – thanks so much for posting! Has had me and everyone I know in tears.

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