Mother’s worst nightmare turns to hope

Five years ago this month, my second son, Tristan, started to complain that his vision had gotten blurry. I also had noticed he was gulping down everything in sight, and he seemed to be urinating constantly.

The day before Thanksgiving, I took Tristan, then 14, for a vision test at the pediatrician’s office, and when the eye exam was done, I — as casually as possible — asked for a urine test. Although I hadn’t told anyone, I knew he had the telltale signs of type 1 diabetes.

A few minutes later, Dr. Eugene Chen returned to our room to tell us Tristan’s blood sugars were in the 400s (100 would be normal), and that he had type 1 diabetes.

He said Dr. Susan Clark, the head of endocrinology at the Children’s Hospital of Orange County (CHOC), was waiting for us to be admitted. We would be spending Thanksgiving in the hospital.

Tristan had no idea what type 1 diabetes was; he didn’t know what to think. He didn’t cry; he didn’t ask questions.

For me, the room was spinning. I hugged him and told him I would be right back. I found a closet so that Tristan couldn’t hear me, and I called my husband to tell him the devastating news.

I was inconsolable; he couldn’t understand a word I said. The only picture in my mind was my friend I knew in high school who died at 21 from complications of type 1.

I thought Tristan had gotten a death sentence.

Within the hour, Tristan, his older brother, Taylor, my husband and I, were at CHOC learning how to test blood sugars and give injections of insulin on a table littered with blood glucose meters, syringes, lancets, test strips, alcohol swabs, vials of insulin, ketone strips and glucagon guns.

We also learned that every bite of food or drink has to be measured for carbohydrates, and then we needed to determine the correct dose of insulin to properly break down the sugar from it. This isn’t a simple math calculation.

Exercise, illness, stress and extreme temperatures can throw the ratios way out of whack. It’s a constant guessing game.

We were told that our fears about type 1 diabetes — specifically our belief that it would result in Tristan’s premature death — were outdated. With modern advances, including constant monitoring of blood sugars, he could live a long life if he kept tight control on his disease.

To his unending credit, Tristan has stayed on top of his care — not an easy feat for anyone, much less a teenager. Keeping blood sugars in check involves planning and discipline. Tristan pokes his fingertips with a needle to check his blood maybe 10 times each day. He also injects himself with insulin up to a half-dozen times daily.

If Tristan lets his blood sugars stay high for too long, the thickening of the blood can cause kidney failure, blindness, heart disease, stroke and stubborn infections that lead to amputation.

And if his blood sugar drops too low, it can lead to seizures, unconsciousness or even death. Unlike type 2 diabetes, Tristan’s form has no cure.

As Dan Hurley, author of “Diabetes Rising: How a Rare Disease Became a Modern Pandemic, and What to Do About It,” writes that having diabetes is “like a baby that never stops crying. It never stops demanding your attention.”

No one knows exactly why people get type 1 diabetes. Some kind of trigger — environmental, viral, genetic, some say puberty — kick off an autoimmune response in which infection-fighting immune cells attack and destroy beta cells in the pancreas that produce insulin that breaks down glucose, or sugar, found in food.

In the past five years so many well-meaning people have told me how lucky Tristan was to be diagnosed with type 1 diabetes at a time when a cure is so close. Of course, I’m grateful that my son doesn’t have to die early, and thankful that so many doctors and scientists are working furiously on a cure, but the word “lucky” doesn’t fit.

We’ve been told from the get-go that a cure was just five years away. Today, we hear the same message — we are just five years away from curing diabetes — but through more-skeptical ears. What is certain is that in this past half-decade since Tristan’s diagnosis, tremendous progress has been made right here in Orange County in the field of research and in diabetes care.

At UC Irvine, Dr. Jonathan Lakey, the co-founder of the famed Edmonton Protocol, is a star scientist in the world of diabetes. He’s working on promising islet cell transplantation and regeneration of islets without the use of harmful immune suppression drugs.

Dr. George Chandy, at the UCI Center for Diabetes Treatment and Research, has found compounds from sea anemone extract and a shrub plant that could block the autoimmune disease response in type 1 diabetes and other diseases. And Tristan’s endocrinologist, Dr. Ping Wang, who heads the acclaimed Joslin Diabetes Center at UCI, is bringing innovative approaches to the prevention and treatment of diabetes and its complications.

The Mary & Dick Allen Diabetes Center at Hoag Memorial Hospital Presbyterian opened last year as a wonderful resource for everyone impacted by diabetes — regardless of age or ability to pay. With a special focus on underserved children, it provides multilingual treatment, education and outreach to Orange County’s diverse populations affected by diabetes.

Despite the amazing research and experiments in Orange County and across the world, we are probably still more than five years away from a cure. But with funding help from organizations such as the Juvenile Diabetes Research Foundation (JDRF) we are rapidly closing in on a cure. My guess is that we will be there within 20 years.

In the meantime, Tristan heroically does daily battle — armed with needles and insulin — to keep his blood sugars under control and his body healthy.

I figure he’s pricked his fingers for blood about 14,600 times and given himself 10,950 shots, but he’s never complained once. The hassle of carrying around lifesaving diabetic supplies, and always having them stocked and preferably within arms reach, is one more hassle.

At Newport Harbor High School he wrote his senior exit essay on the realities of having type 1 diabetes and had the entire class, including his teacher, in tears.

Tristan lives in San Luis Obispo and attends Cuesta College. There’s not a moment that I don’t worry about him. I sleep with my cell phone in case of an emergency, and I fret constantly about my three other sons becoming type 1 diabetics.

Aside from worrying, I’ve tried to do my part in helping Tristan and other diabetics find a cure.

I started my business, Greer’s OC, a website and free daily e-mail newsletter, as a way to promote fashion, dining and trends in Orange County, but also to spread the word to as many people as possible about Juvenile Diabetes Research Foundation (JDRF) events and other important causes.

I joined the board of JDRF Orange County, where I found a passionate group of like-minded people who won’t stop until a cure is found. JDRF saved my life from falling apart. It’s a scary and lonely world when you have a child with diabetes. It’s like being in a nightmare without the luxury of waking up. JDRF gives me hope and purpose. Before JDRF, I didn’t know a single person who could relate to what we were going through. JDRF is like a second family to me.

And through JDRF, I also met two award-winning filmmakers, Lisa Hepner (a type 1 diabetic) and Guy Mossman of Vox Pop Films (https://www.voxpopfilms.tv), who asked me to be an executive producer of a documentary about the quest for a cure to type 1 diabetes. It’s a very exciting project; we are in production on the film.

I’m so grateful for Tristan; he’s a major inspiration in my life. I’m lucky to be surrounded by others who want a cure as passionately as I do, and it’s comforting to know that scientists are just a few miles away working round the clock to find an answer to a cure.

My dream is to write a column one day about Tristan and the millions of others who have been cured, and what a freeing moment it was to finally throw away the needles, test strips, and insulin and to burn his diabetes kit. It will be the greatest moment of our lives.

GREER WYLDER writes Greer’s OC for the Huntington Beach Independent each Thursday and the Daily Pilot and Coastline Pilot each Friday. She’s the founder and president of greersoc.com, a free daily e-mail service that provides the latest in Orange County fashion, dining, music, events and trends. Her blog can be viewed at https://www.greersoc.com and she can be contacted at greer@greersoc.com.