sweeterin

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Sweet Erin

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Barely seven, little Erin was becoming quite the hot-shot basketball player. She was riding a circular groove into the cul de sac on her new mountain bike. And she was generally displaying the sort of vigor that makes us older folks lament nature's misallocation of youth.

She ate and drank accordingly. "May I have seconds?" became her mantra. And, apparently taking our sermon on the importance of hydration to heart, she chugged water as if auditioning for a "got water?" TV commercial.

As Erin's appetite picked up, we were pleased. In our workaday parenting mode, few things brought us more satisfaction than watching our spindly sprite of a daughter playing hard and building a big appetite. We began to suspect a major growth spurt, yet another to add to the ones that had put Erin, like her older sister and younger brother, toward the top of the growth charts.

Even as Erin began getting up at night to use the bathroom, no alarm bells sounded. A topic that is usually best left beneath the radar of consciousness, I want to bring into relief. With several marathons under our belts, Kathleen and I know from experience that one consequence of hydrating is more skips to the loo. The math is quite simple. So Erin's midnight shuffling elicited little more from us than a knowing, "welcome to the club" smile.

But then Erin's nightly apparitions began to increase. She would get up twice, sometimes three times, per night, and each time she would steal another drink from the faucet. That is when something in us somewhere began to worry. Maybe we were worried, too, because sweet Erin was around that time beginning to look a little tired, she was losing color in her cheeks and we began to notice rings under her eyes.

Of course, we could've explained all the bathroom visits away by all the water she was drinking, and we could've explained the water she was drinking by all the energy she was expending and the food she was eating. And we could've, I suppose, explained away the tired appearance by her activity levels and, of course, the fact that she was getting up so many times in the night. "No wonder she's tired, she spent half the night walking laps." Those explanations did offer their service and, to some degree, we accepted. But not fully. We begrudgingly cracked the door and allowed some of our fears to escape. We said things like "that's strange" and "if this keeps up, we should get it checked out." (I am somewhat embarrassed to admit that my worries were less pronounced than Kathleen's and less than they probably should have been.)

At about that time, Emily spilled on her in-line skates and cut her chin. Kathleen rushed her to Children's Hospital for four rite-of-passage stitches. (In what seemed like a trying day, Kathleen never expected that she would be back a week later with Erin . . . but I'm getting ahead of the story.) When Kathleen spoke to our pediatrician about Emily's injury, she took the opportunity to mention briefly some of Erin's behavior. The doctor was reassuring and promised to take a closer look when Erin came in for her seven-year checkup scheduled for the following week. The doctor's reaction was for us a big relief, enabling us to smother our growing fears with old explanations.

That relief didn't last. A few days later, Kathleen bent down to help Erin with a particularly recalcitrant button. She was shocked to see that Erin's pants, which had been snug a month before, were now falling off.

"Sweetie, how many times did you get up to go to the bathroom last night?"

"Four."

That's the only way that favored theories are ever rejected. They are confronted with overwhelming evidence that they are exactly wrong. No matter how much we wanted to hold onto it, the "growth spurt" hypothesis was dead. And now Kathleen was seriously worried. She made an appointment to take Erin in to see a pediatrician immediately. She called me at my office to fill me in and to ask me to meet her there.

Less than an hour later, Nurse Brown took sweet Erin into her office to talk about Erin's favorite topic, koalas, while Dr. Joseph was sitting Kathleen and me down for the diagnosis. The symptoms we described were so typical and unique to the disease that there was no need to wait for Erin's blood test for Dr. Joseph to spell out the situation and begin preparing us for our journey to Children's Hospital. (http://www.childrenshospital.org/) And the blood test results were, unfortunately, as expected. Erin had Type 1 diabetes, (formerly known as "early onset" or "juvenile" diabetes and technically known as "insulin-dependent diabetes mellitus" ("mellitus" meaning "sweet as honey").

Type 1 diabetes causes the body's immune system to turn on itself. White blood cells attack and destroy the insulin-producing beta cells in the pancreas. Without beta cells, there is no insulin, and without insulin, the body's cells do not get the message to take in sugar from the blood. As the cells lose their energy, the blood thickens with sugar and the body begins expelling the excess sugar through the urine. For energy, the body begins eating up whatever fat reserves are available. And so it is that Erin ate and drank voraciously, only to lose weight. (For more information, see http://www.learn-about-type-1-diabetes.com/ and http://diabetes.about.com/cs/type1diabetes/).

Though many memories of that day and the several that followed at Children's Hospital are hazy, some are seared with the clarity that comes only from fear and urgency. I remember sitting next to Erin and holding her in the back of the van as Kathleen drove us to the hospital. I remember Erin being advanced to the front of the emergency line queue. I remember the first doctor we met proposing marriage to Erin, and my relief that, at least for now, she declined . . . though with a "meet you in fifteen years" giggle. I remember the TVs on in the rooms, bustling hallways, and families coming and going. I remember taking little walks with Erin and finding a quiet place beyond the elevators to sit and read to her. I remember learning about what Ketones were and why we didn't want to see any sign of them in Erin's urine. I remember working with Kathleen to coordinate meetings with the nutritionist, the social worker, and the doctors. I remember Kathleen organizing the cascade of information into a notebook that she asked Erin decorate.I remember the happy, sunshiny picture that Erin drew for the notebook.

Erin's Cover

I remember waking up in the middle of the night to be awake with Erin as the nurse checked her vitals and tested her blood. I remember learning to draw insulin with Kathleen, and the two of us practicing on an orange and Fuzzy (Erin's first Koala). I remember Erin's friends coming to visit and the generous moms who made it possible. I remember Erin glowing in their midst. I remember the wonderful nurses, particularly Nancy and Denise, who were incredibly warm to Erin and encouraging to Kathleen and me. But more than specific events, I remember feelings.

Most prominent, strangely, was our sense of gratitude. Kathleen and I, and even Erin, understood that, in the scheme of things, the tragedy we were coping with was minor. That was partially the result of the places our imaginations had taken us between the realization that something was seriously wrong with Erin and Dr. Joseph's diagnosis. We felt deeply grateful that Erin's disease is "livable" or "manageable." But it was more than that. We felt lucky to have jobs that permitted us to stay with Erin at the hospital and fully focus on the hospital's diabetes crash course, to have good health insurance, to have the best medical advice and care available on the planet, and to have amazingly generous friends and family (including the Schirripas, who took Emily and Ian for several nights and many others who were eager to help and quick to send Erin more koalas). We had a lot to be grateful for, and we knew it.

"Bon Voyage" Party at the Schirripas

There were other emotions. Kathleen and I both felt a soul-quaking empathy for, and pride in, Erin, who had no warning, no analogous, previous experience to draw from. She sat through all sorts of pokes and prods and shots and scary encounters with blinking, beeping machines and teams of strangers. She was told that her life would now include four to five finger pokes per day and at least three shots. She was told that there would be significant constraints on what she ate and when, and that those constraints would effect many areas of her life. The new regimen began immediately and at full speed. Through it all, and to this day, Erin has not once complained about the disease or the way in which it has interfered with the more carefree existence she'd known. The point is worth repeating. Erin has never once, not a single time, complained. Even as Kathleen and I have often felt helpless to ease her burden, we have also felt inspired by, and proud of, the way she bears it.

Then there have been the feelings of fear. Yes, diabetes is manageable. And, yes, less than a century ago, before insulin treatments had been developed, Erin's future would have been bleak. The ancient Greeks described the existence of those with diabetes this way: "Life is short, unpleasant and painful, thirst unquenchable, drinking excessive, with disproportionately large quantities of urine being passed. One cannot stop them either from drinking or making water. The patients are affected by nausea, restlessness and a burning thirst, and in a short time, they expire." Indeed, the word "diabetes" is Ionian Greek and means "to run through" or "a siphon." The belief was that diabetes melted the flesh and limbs into urine. As recently as 80 years ago, while the medical understanding of the disease had improved a good deal, a diabetic's prospects had improved barely at all. The best that medical science had come up with over the nearly two millennia was a starvation diet, shown to prolong life of the insulin-dependent diabetic by a few months. Following diagnosis, patients were very lucky to live three more years before succumbing to diabetes or starvation. Kathleen and I cringe to recall what was happening to Erin before she was diagnosed, and we cannot bring ourselves to imagine what it would have meant had history and medical science not been so good to us.

Erin just home from Children's Hospital

So, yes, diabetes is "manageable," particularly when one is mindful of the historical "but fors." But diabetes is still plenty serious and frightening. (For a collection of statistics on diabetes, see http://www.cdc.gov/diabetes/pubs/factsheet.htm.)

Of course there is the day-to-day inconvenience and pain, physical and emotiona, of having to test one's blood, inject insulin, and carefully monitor and limit consumption. In an environment notorious for promoting bad health habits, the challenges for diabetics are acute. And the statistics bear it out. Despite new treatments, diabetics have an average life expectancy that is approximately fifteen years less than the rest of us. Diabetes is a leading or contributing cause of several hundred thousand deaths each year. For adult diabetics, the risk of heart disease and strokes is increased three-fold. Nearly three quarters of diabetics have high blood pressure. Diabetes is responsible for approximately 20,000 new cases of blindness each year. In the same time period, roughly 115,000 diabetics undergo dialysis or kidney transplantation and 40,000 more begin treatment for end-stage renal disease. Two-thirds of diabetics suffer mild to severe forms of nervous system damage (which often includes impaired sensation or pain in the feet or hands, slowed digestion of food in the stomach, carpal tunnel syndrome, and other nerve problems.) Such nervous-system damage is often a contributing cause to lower extremity amputations, of which there are roughly 80,000 performed each year among diabetics. There are many other ways in which people with diabetes face higher and greater risks of illness, disease, and injury, from periodontal disease to complications in pregnancy. Even with insulin treatment, diabetes is mean.

In some ways, having diabetes is equivalent to sharing your home with a homicidal monster. Think of insulin treatment and diet as the equivalent of a cage for the monster, a cage that the monster will remain in so long as it is tended to frequently. No doubt about it:; having the cage makes the monster manageable! But a caged monster in the living room still exacts a heavy toll. And the sad truth about diabetes is that, like any scary monster, it is looking for an opportunity to escape. Clearly the best solution would be to kill the beast, a cure.

At Children?s Hospital, the doctors enthusiastically described some of the great advances and reasonable hopes for new and improved treatments. Talk of a cure, however, was muted. Advances in treatment notwithstanding, there was no reason to hope for something more. We have proceeded on the assumption that we will always be living with a monster in our house. Our goal is to keep the animal caged and otherwise minimize its effects on Erin's health and happiness. That goal will not change anytime soon.

But something quite amazing has happened in the scientific community since Erin was diagnosed, and we feel compelled to tell people about it and to contribute to it. Very briefly, researchers at Massachusetts General Hospital (MGH) in Boston have, surprising themselves and the rest of the scientific community, stumbled across a way to regenerate the insulin-making abilities of the pancreas. Dr. Denise Faustman, MGH immunology lab director and lead author of the new study, announced in a recent press release: "We have found that it is possible to rapidly regrow islets from adult precursor cells, something that many thought could not be done." Put differently, they have hit on what may turn out, eventually, to be a cure. The MGH researchers discovered that spleen cells injected into diabetic mice cured the diabetes. The spleen cells migrated to the mice pancreases, prompting the damaged organs to regenerate into healthy, insulin-making organs, curing the diabetes. (For an copy of the Science article describing their study, see http://www.iacoccafoundation.org/doc/Faustman_Nov_2003.pdf. For accessible summaries, see http://www.iacoccafoundation.org/index.htm or http://news.bbc.co.uk/1/hi/health/3266987.stm).

Dr. Faustman, explained that her work "opens up an entirely new approach to diabetes treatment." (Read more about her team's amazing work at http://www.mgh.harvard.edu/depts/diabetes/faculty_faustman.htm.) Dr. David Nathan, director of the MGH's Diabetes Center, added: "These exciting findings in a mouse model of Type 1 diabetes suggest that patients who are developing this disease could be rescued from further destruction of their insulin-producing cells. In addition, patients with fully established diabetes possibly could have their diabetes reversed."

Doctors who were not part of the study are similarly excited. Dr Eleanor Kennedy, research director for Diabetes UK , said "The initial results of this research are potentially very exciting for people with diabetes." And Dr. George King, the research director at Boston's world-renowned Joslin Diabetes Center, had this to say: "That you could just take spleen cells, infuse them, and somehow the pancreas is regenerated, that's exciting . . . The next step is to see if it can be done in humans."

The FDA has approved just such a step, a 40-person clinical trial. The only real delay at this point is in raising the roughly $10 million needed to make it happen. The research to date has been funded by the Iacocca Foundation, a diabetes charity begun by then-Chrysler executive Lee Iacocca two decades ago after his wife succumbed to the disease.(See http://www.iacoccafoundation.org/index.htm.) Unfortunately, the foundation doesn't have the resources to cover all of the trial's $10 million price tag.

And that is where you come in. If you have read this far, thank you! If you would like to help try to find a cure for diabetes (and perhaps other autoimmune diseases, such as rheumatoid arthritis, multiple sclerosis and lupus), we ask that you consider pledging to help support the clinical trials of Dr. Faustman�s research.

If you would like to make a donation, click here Help us get rid of the monster and the cage!

Where's Erin?

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