nikki cover story health and dreams

8/14/2019 Nikki Cover Story Health and Dreams

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F A L L

2 0 0 9 I S S U E

T O R I E S O F I N S P I R A T I O N ,

O M P A S S I O N &

O R L D - C L A S S C A R E

NIKKIS STORY:

A SHOT OF COURAGE:

LIVING WITH TYPE 1 DIABETES

ENDOCRINOLOGY AT

PHOENIX CHILDRENS:

THE LONG AND THE SHORT OF IT

DOCTALK WITH DON WILSON, MD

PHOENIX RISES:

THE EXPANSION REACHES A

MILESTONE

THE LOFTIN FAMILY:

THREE GENERATIONS OF GIVING


2/8HOP ES & DREAMS P 2


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NIKKIS STORY

A SHOT OF COURAGE:

HOP ES & DREAMS P 1 0


4/8

SHOCKS H O C KThe waffle Nikki ate for breakfast had 18 carbohydrates in

it. The banana 25. The glass of milk 11. That totals 54, which

shell divide by her 12:1 carbohydrate ratio. That means shell

need 4.5 units of insulin. But Nikkis blood sugar was 180 when

she woke up. Since her target is 90, shell need to figure in the

correction factor, subtracting 90 from 180 and dividing by 100 an extra .9 units of insulin shell add to the 4.5.

Confused? This 10-year-old isnt. Its just another morning in

the day of the life of a child with type 1 diabetes. Nikki will

do it all over again in a few hours when she has her morning

snack at school.

Once upon a time in the Campbell household, finishing

breakfast didnt feel so much like an algebra exam. That all

changed on February 28, 2006 when Nikkis parents took

her to their pediatrician. Nikki had been excessively thirsty

and going to the bathroom more than usual; tell-tale signs

of type 1. It took the doctor less than seven seconds to prick

Nikkis finger, dab the blood on a small hand-held blood

sugar monitor, and see the number that would forever change

Nikkis life.

Her mom, Lee, admits that although she had heard of

diabetes, she didnt understand the magnitude of the

diagnosis. Before they drove to Phoenix Childrens Hospital,

where they would continue treatment, Lee drove Nikki back

to school to pick up her backpack. People at the school

were hugging us, saying how sorry they were asking if

there was anything they could do, says Lee. I started to

sense that this might be more serious than I thought. We

really had no idea what we were in for.

Type 1 diabetes typically strikes before the age of 18,

but some children are diagnosed before they even reachtheir first birthday. According to Phoenix Childrens

endocrinologist, Dr. Khalid Hasan, type 1, like all

autoimmune diseases, is on the rise for reasons that arent

completely understood. In fact, at Phoenix Childrens alone,

its not uncommon to have a newly-diagnosed type 1 patient

at the Hospital each day. The year Nikki was diagnosed

five other children at her elementary school already had the

disease a startling one in every 125 kids.

There are often misconceptions about the disease, which is

often confused with type 2 diabetes (see sidebar on page 13).

Type 1 occurs when the bodys own immune system destroys

the insulin-producing cells of the pancreas, leaving the

person insulin-dependent for life.

The brain must then take the place of the pancreas, withdiabetics meticulously monitoring everything they eat and

drink, counteracting carbohydrates with insulin injections

to allow the body to properly use carbohydrates for energy.

Exercise, stress, growth spurts, and illness also affect

blood sugar levels, making the disease a round-the-clock

balancing act. If blood sugars are too low, the child becomes

hypoglycemic, which can cause shakiness and weakness.

LIVING WITH TYPE 1 DIABETES

P 1 1 H O P E S & D R E A M S


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Severe hypoglycemia causes confusion and seizures. But

persistent high blood sugars are even more worrisome as

theyre the major cause of long-term complications. The

disease can affect nearly every organ system, leading to

an increased risk of blindness, nerve damage, and heart,

thyroid, and liver disease.

Following onset of type 1 the disease can go undiagnosed

for weeks. The disease can look like other illnesses,

explains Hasan. During the winter, symptoms can mimic

illnesses that children get during flu season. In the summer,

many parents attribute the increased thirst to the summer

heat. By the time many children are diagnosed they have

so little insulin that the body experiences a dangerous

chemical imbalance that can lead to coma, or even death

if left untreated. About 30 percent of newly-diagnosed

patients at Phoenix Childrens are so sick theyre admittedto the Pediatric Intensive Care Unit.

Nikki was one of the lucky ones because she was

diagnosed so early. But she and her parents were feeling

anything but lucky that day. Nikki cried and held Mr. Moo,

a giant stuffed cow the staff had given her as they sat in

an exam room at Phoenix Childrens. Lee was in shock.

Stunned. Nikkis dad, Ron, was in denial not entirely

convinced that the number that appeared on a gadget

smaller than his cell phone could really identify such a

serious and life-altering disease.

It could. And for the next two days Nikki and her parents

would undergo a crash course in diabetes with the staff of

the Division of Endocrinology and Diabetes who would

explain the disease and how to manage it. They all began to

go through a large binder, page by page. Ron jokes, They

had the binder broken out into nice tabs and everything. I

just couldnt believe how many tabs there were.

There are many components to taking care of type 1.

Unfortunately, insulin isnt an exact medication. Severalfactors have to be considered in determining the amount

you give a child. Its also very difficult to control when a

child is sick, explains Hasan. Even a simple bout with flu

may result in some children requiring hospitalization.

NIKKIS STORY


6/8

FEARF E A RThe first topic the family covered was shots the most difficult

part of the disease for Nikki to come to terms with. From that

day forward Nikki would need a minimum of six insulin shots

each day. I couldnt believe that my life was going to be so

different, she says. It wasnt so much the size of the needle, but

the number of shots Id need. The family practiced giving saline

shots to each other, something that made Ron, a self-described

needle-phob break out in a cold sweat.

The three of them would learn an entirely new vocabulary

that included words like ketones, nephropathy, glucagon,

and A1C. Theyd need to know the signs of hypoglycemia

and hyperglycemia, and what to do for each (sugar for

lows, insulin for highs). Theyd need to learn how to count

carbohydrates, and understand the rate at which different

types of food break down during digestion. Nikki would

also need to check her blood sugar several times each dayby poking her finger with a tiny needle called a lancet

something shes now done more than 10,320 times in less

than four years.

Through it all, Nikki put on a brave face. Her ability to

grasp the disease, and her willingness to help take on the

management of it surprised the Phoenix Childrens staff.

She dealt with it better than most adults would, says her

proud father. She was really absorbing what they were

telling her, processing the information and asking questions.

She really wanted to understand it.

INSULIN PUMPS

Look closely the next time you see a kid wearing a pager.

It might actually be an insulin pump. The pump contains

a cartridge that gradually pushes insulin through a tube

and into the body via a tiny catheter that rests under the

skin. Studies have shown that diabetics who use insulin

pumps have lower averaged blood sugar levels than those

who take shots. Pumps also allow diabetics to deliver

more precise levels of insulin. But the greatest advantage

for children is the convenience and quality of life as iteliminates the need for multiple daily shots.

DIABETES 101

TYPE 1 diabetes is an autoimmune disease

that occurs when the bodys own cells attack the

pancreas, leaving it unable to produce insulin. It is

not preventable. Individuals with type 1 account

for about 10 percent of all diabetics. Althoughtype 1 can strike in adulthood, most are diagnosed

before the age of 18. Approximately 10 percent of

those with type 1 have a family member with the

disease. There is an acute onset of symptoms that

may include increased thirst and urination, weight

loss, blurred vision, increased appetite, nausea,

vomiting, abdominal pain, and excessive fatigue.

Treatment requires multiple daily injections of

insulin. Type 1 and Type 2 diabetes can affect

nearly every major organ system in the body,

leading to a higher risk of heart and kidney

failure, stroke, blindness, nerve damage, and skin

breakdown. Tight control of blood sugar levels can

delay, or possibly prevent, long term complications.

TYPE 2 is a metabolic disorder where the body

becomes less effective at producing and using

insulin due to various factors that include age,

heredity, and obesity. Type 2 was once considered

an adult disorder, but is occurring at younger ages

as more children are now considered overweight or

obese. Type 2 is often diagnosed before symptomsare present. When symptoms do occur, they are

similar to type 1, but less severe and develop more

slowly. Type 2 can often be managed through diet

and regular exercise, but oral medications and/or

insulin injections may be necessary.

FROM THAT DAY FORWARD NIKKI

WOULD NEED A MINIMUM OF SIX

INSULIN SHOTS EACH DAY.



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GRIEFG R I E FAfter two days of training, and even more time spent

researching diabetes over the internet, Lee says the enormity

of it all finally hit her. I remember sitting on my bed that

second night, so upset and sad. There was such a weight that

I almost couldnt breathe. I really questioned if wed be able

to handle it.

But it wasnt just the 24/7 management of the disease that

was overwhelming. It was the long-term complications

tab of the binder that Lee couldnt even bring herself to

read. It was so sad to not only realize that Nikki was going

to have to deal with this disease every day, but that despite

our best efforts to manage it, the possibility of long term

complications is always there.

Dr. Hasan says coping with the complete change of lifestyle

is the hardest part for the kids. For parents, its the fear of the

unknown. They worry about what the future now holds for

their child because of the risk of complications. Its a difficult

discussion to have with parents. Its always their biggest concern.

To make this new lifestyle manageable, Lee says they had to

take it one day, one meal, and one shot at a time. But even

that can be easier said than done. Eating at home, where they

could measure and weigh the food was tricky enough. Trying

to figure out how many carbs were on Nikkis plate at theirfavorite Mexican restaurant was an educated guess at best.

Leaving Nikki with even a trusted friend or family member

would be more difficult as theyd also have to know how

to count carbs and give shots. School seemed less about

the classwork and more about fine-tuning Nikkis

treatment plan with teachers and nurses. And there

would be many a sleepless night for the couple as they

worried about Nikki as she slept, often sneaking into

her room with a flashlight to check her blood sugar without

waking her.

THERE WAS SUCH A WEIGHT

THAT I ALMOST COULDNT

BREATHE. I REALLY

QUESTIONED IF WED BE

ABLE TO HANDLE IT.

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H O P E S & D R E A M S P 1 4


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ACCEPTANCEA C C E P T A N C EToday, the family barely remembers what life was like before

the disease. In fact, there are times when Lee and Ron do

consider themselves lucky. Seeing some of the other kids

at Phoenix Childrens helped us put things in perspective,

adds Ron. Even with all of the emotions we were feeling in

the beginning, we saw so many kids and families who were

dealing with something worse.

But putting things in perspective isnt so easy for children

and teenagers, who see life as they once knew it disappear

overnight. The disease makes children grow up very quickly

when theyre forced to shoulder so much of the responsibility

a reality of type 1 diabetes that parents cant prevent,

regardless of how much theyd like to. In the beginning

there were times when Nikki questioned why it had to be her.

Its become something we live with, but there are still dayswhen she just doesnt want to have it anymore, admits Lee.

And shes entitled to feel that way.

Lee says that even with all of the knowledge and experience

they have now, the worry doesnt go away. The lack of

predictability is frustrating. Nikki misses the

spontaneity of grabbing a granola bar out of

the pantry, going to birthday parties and

eating a piece of cake without calling her

mom to make sure shes counted the

carbohydrates correctly, or heading to

recess instead of the nurses office

after she eats lunch at school. It

can be annoying, she confesses.

Always testing or making sure I

have my supplies with me when we

go somewhere. You have to think

about it all the time.

She has to think about it a little less these days. Nikki now

wears an insulin pump (see sidebar on page 13), a pager-

sized device that delivers insulin via a small catheter that

rests under the skin of Nikkis arm. The pump dramatically

improved Nikkis quality of life as she now needs only one

shot every two to three days to insert the catheter. That takes

the place of nearly 20 shots a constant ritual that Nikki had

never stopped dreading. The pump gave me so much more

freedom. Now I dont have to decide if eating something is

worth the shot. If I want a second slice of pizza I just enter

the carbs in my pump.

Today the family spends less time thinking about the long-

term complications of the disease and more time focusing

on a cure for it. Researchers continue to make great strides

in understanding diabetic innovations, which have led tobetter treatment, and perhaps someday, prevention of new

cases and reversal of those already diagnosed. Camp AZDA,

a weeklong camp for kids with type 1 diabetes, has made

coping with the disease a little easier. Nikki has attended the

camp in Prescott for the last three summers, spending time

with other kids who know exactly what shes going through.

Nikki still plays volleyball and is on the swim team. Shes a

Girl Scout who loves shopping and having sleepovers with

her friends (who all made their American Girl dolls type

1 diabetics with an insulin pump and all). She says that

even though her friends dont exactly understand the disease,theyve always been supportive. So have her two older sisters,

Kelly and Brooke.

The disease has changed Nikkis life. But this fifth-grader

wont let it define who she is or what she does. In many ways

its just made her stronger and more mature than she was to

begin with. Its a complication in my life, but it hasnt held

me back, she states with confidence. I can still do anything

I want to do. It just takes a little more planning.

NIKKIS STORY

I CAN STILL DO ANYTHING I

WANT TO DO. IT JUST TAKES

A LITTLE MORE PLANNING.


nikki cover story health and dreams

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