V’s 10-year Lilly Medal

Ten years ago, on June 17th, I went to sleep on my last night of uninterrupted sleep. Ever. Ten years ago my 2-year-old daughter woke up lethargic and drowsy. Ten years ago I drove her to the pediatrician, who took one look at her finger stick and sent us straight to the ER.

Over the last ten years…

My 2 year old was diagnosed with Type 1 diabetes and DKA (diabetic ketoacidosis). While “only” 416, her blood glucose was four times the normal level. She spent 8 hours in the ER, receiving her first dose of insulin and getting stabilized, before CHOP’s transport team picked her up. She spent a total of five days (two in PICU, and 3 in endocrine) in the Children’s Hospital of Philadelphia.

She started with multiple-dose injections of fast-acting (Novolog or Humalog) and long-acting (basal – known by Lantus or Levemir) insulins for the first year. It’s not easy to give injections to a two-year-old.

At age 3, she got her first insulin pump from Animas. At the time we lived in PA, and our primary insurance paid only $1,000 of the nearly $6,000 pump. Medicaid paid for the rest. It’s not easy to insert infusion sets into a three-year-old.

She has endured over 50,000 finger sticks, roughly 2,190 insulin shots, approximately 1,700 site changes for her pump, and 10 complete metabolic panels. It’s not easy to get a small child to do all of these things.

We’ve been told a cure is only “five years away.” Several times.

We’ve walked in JDRF walks, attended one gala. My mom, her restaurant and her wonderfully generous guests have raised over $10,000 for the JDRF in the last 3 years.

I’ve “met” dozens of fellow moms and dads and other Type 1s. Whether face-to-face, a phone call, or just a click away – they are ALL valuable to me. I can’t imagine not having this support.

She was diagnosed with  hypothyroidism – diabetics are more prone to additional endocrine disorders – three years ago, and has added another medication to her arsenal. There are more blood tests to monitor this.

We moved out of state and into a new school system – nervewracking in itself but magnified by a child with a life-threatening disease who requires extreme vigilance away from home.

I wake two-three times a night to check her blood sugars, to make sure they don’t go too high or too low. Well, except for the nights she spends with her dad… though I still wake up spontaneously around 3 a.m.

I participated in the development of my state’s newest Guidelines for Diabetes Management in Schools, which was recently released. This was huge. I’m grateful for the opportunity to contribute to something so important.

I have fought countless battles with her over shots, pump set changes, and food.

I’ve let her go. This is the biggest development in our ten years on this unthinkable journey. I’ve let her go to do things and go places where I’m not constantly “helicoptering” and trusted that she’ll do okay on her own. This is a process that will probably never end. The worry will never go away.

Ten years later…

Children and adults continue to be diagnosed with type 1 diabetes with no definitive answer as to why. Several children have died due to undiagnosed diabetes, mistaken for the flu or other illness, and discovered in DKA (extremely high, life-threatening blood sugars) and too late. Also, people with diagnosed diabetes can and have died from both extremely high and extremely low blood sugars.

We in the diabetes community continue to struggle with the stigmas and misconceptions surrounding the disease, which is often confused with Type 2 diabetes and the subject of many a misplaced joke.

CGMs are widely used today, which allow a virtual window into the minute-by-minute changes in blood sugars. And – they can be connected through the cloud to parents’ cell phones, so those numbers can be seen in real time whether they are away from you or just down the hall. V refuses to use this because it requires another “site” for a needle.

The Artificial Pancreas and Bionic Pancreas are systems under development and currently being tested that will ultimately manage blood glucose levels without constant intervention and monitoring by the patient.

At least two organizations are working on cell-pouch technology which would introduce a semi-permeable “pouch” containing insulin-producing cells (beta cells) which would  effectively respond to the individual’s blood glucose levels, and ultimately eliminate the need for insulin. This, too, is in clinical trials.

Veruca, at age 12, has no memory of life before diabetes. But 10 years later, she “hates diabetes.” She just wishes she was “normal.” “Why doesn’t O have diabetes?”

Ten years later, she counts carbs and boluses for them. She knows how to change her sites, even though she still prefers I do them. She is more independent than ever with handling her diabetes, and giving me some confidence that she’s “got this.” At least right now.

She still sneaks food or eats without bolusing (giving herself insulin to cover it). This will be an ongoing battle with her. She is easily annoyed with my constant nagging about testing and bolusing, and eating things without doing those things first. This will be an ongoing battle for us.

Ten years later…

We’re still waiting for The Cure.

**For more information, the Diabetes tab above contains previous posts and background.