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Photos by Laura J. Gardner | The Journal Gazette
Dr. Dennis O’Brien checks on 11-year-old Arianna Smith, who, along with sister Chyanna, 14, second from right, has been diagnosed with non-Hodgkin’s lymphoma. At right is the girls’ mother, Vickie.

Strength in numbers as sisters fight cancer

Nurses, church show support, and now they do, too

Betty Rowe, a nurse in Lutheran Hospital’s pediatric oncology unit, gets Arianna prepped for her chemotherapy session.
Chyanna Smith is occupied by her duct tape wallets. Chyanna, along with her mom and sister, will pass out the wallets to children at the hospital.
After passing out bracelets, duct tape wallets and other crafts to children, Vickie Smith checks on Arianna, who seems a little weak.
Arianna Smith, along with her mom, Vickie, and sister Chyanna, go home after her chemotherapy treatment at Lutheran Hospital’s pediatric oncology unit.
Photos by Laura J. Gardner | The Journal Gazette
Chyanna Smith, left, sister Arianna, back right, and church friends Carter and Grace Sylvester, middle, stop into Kaitlyn Baney’s room to give her crafts the sisters put together to give to other ill children.

– Her daughter’s temperature of 102 shouldn’t have been a huge cause for concern, but Vickie Smith had a nagging fear. Her three girls just didn’t run fevers.

And as the fever refused to go away – even after two weeks – her fear grew. So when Arianna’s hip began to hurt, Vickie knew as only a mother can that something was wrong, something bigger than the colds and flu that always sweep northeast Indiana in February.

The doctors tried to soothe her and tell her she was just paranoid – it was probably some rheumatoid arthritis in her hip.

But an MRI confirmed Vicki’s deepest fear: It was cancer, specifically non-Hodgkin’s lymphoma. Her little girl Arianna – who in the space of a doctor’s visit went from being an active elementary school student to a cancer patient – was just 11.

Soon there would be chemotherapy that would make Arianna’s hair – in a short, blonde bob – fall out. Her hair hadn’t always been short, but she recently had it cut and donated to Locks of Love, a program that takes donated hair to make wigs for cancer patients.

The Locks of Love donation, just months before her diagnosis, was more than ironic. Cutting off her hair and giving it to someone who had lost theirs had been especially important to Arianna because she had donated her hair in the name of Chyanna Smith, her older sister.

Chyanna, 14, had been diagnosed with non-Hodgkin’s lymphoma just six months before Arianna.

Maybe it’s the stress of two girls with cancer, maybe it’s fatigue after spending two nights in the hospital – and working full time – but Vickie chokes up when she talks about the diagnosis.

“We knew something was wrong, but we never thought it was cancer,” she says, then wipes her eyes. “And we didn’t know why it had to happen to them.”

It’s July 2010, and Chyanna Smith is as busy as any teen in Howe; she plays softball and soccer and is active in her church youth group.

But she’s tired – dog-tired – all the time.

And then she hurts her arm with what seems to be a sprain. And then she sprains it again. And again. And she’s still exhausted.

And then her mother notices Chyanna is running a fever – in August. Eventually a CAT scan and blood test confirm non-Hodgkin’s lymphoma, and Chyanna goes from a life of youthful activities to a life of trips to Lutheran Hospital for chemotherapy and radiation treatments.

It’s an hour-and-a-half drive to Fort Wayne, and the visit can take up to several hours. You stop writing on your calendar in pen, nurse Betty Rowe explains as she prepares a chemo setup, because once you have cancer, nothing is certain anymore.

The nurses at the Lutheran Children’s Hospital’s Pediatric Outpatient Hematology/Oncology Clinic are full of bits of wisdom like that. They become a major part of the children’s hospital family, and there is always time for a hug and a “how you doing?”

They dote and spoil whenever they can, such as when Chyanna asks for crayon bandages instead of the Sponge Bob and Hello Kitty ones the nurse has offered. A quick search through cupboards finds the ones Chyanna wants, and the nurse gives her a couple of extra for fun.

It seems that no walk down the clinic’s hallway can be done without a hug, and even the receptionist makes the patients feel especially welcome; his bulky shoulders and mustache clash with the woman’s blonde wig he wears in solidarity with them. In the hallway is a map of Indiana where other pediatric cancer patients have push-pinned their names to their hometowns.

All of northeast Indiana is covered with tags – no patient is alone here. Small things at a time when small things make a difference.

For most people, the body’s lymphatic system is something they never think about, until something goes wrong. At most, it gets our attention when our body is fighting a virus or bacterial infection, and our lymph nodes swell, creating painful lumps at the armpits, neck or groin.

But while we blissfully type away on a dirty keyboard or grab the handle on a public restroom door, our lymphatic system is delivering lymphocytes – a type of white blood cell – throughout our body to fight off the bacteria and viruses that are constantly attacking us.

One type of lymphocyte, called a B cell, creates antibodies that deactivate the weapons the foreign invaders have brought with them. Think of a landscaper wielding a tank of weed killer against a field of dandelions. The other type of lymphocyte, called a T cell, attacks the virus or bacterium itself the way our imaginary landscaper digs a dandelion out by its roots.

For most people, most of the time, our lymphocytes do what they’re supposed to: The old ones die of their efforts in the bacteria and virus wars or of old age, and our body makes new ones to replace them.

But sometimes – and we don’t know why, though there are guesses – the lymphocytes don’t die. Instead, they divide, then divide again and again and again in a cycle that runs out of control.

This uncontrolled division, whether it happens within a brain tumor or a lump in your breast or a melanoma on your skin, is the calling card of cancer.

Cancer is so haunting because it is our own body attacking itself, our own cells run amok, creating an internal monster that must be fed, must be nourished, must be obliged like a parasite until it takes over and we die.

When it happens to the B cells or T cells in your lymphatic system, the cancer is called non-Hodgkin’s lymphoma (Hodgkin’s lymphoma, much rarer, affects a different type of lymphatic cell).

Fortunately, the overpopulation of lymphocytes created by non-Hodgkin’s lymphoma has nowhere to go, and they clog up in your lymph nodes, making them swollen and painful. When your doctor realizes you have the symptoms of an infection but no infection, a relatively simple blood test can show what’s gone wrong and treatment can begin.

For Chyanna, those swollen lymph nodes in her arm seemed like a strained muscle related to being the catcher on her softball team, and the fatigue could have been from her busy schedule.

But the fever that came with it – another symptom of infection though there isn’t one – was the giveaway.

It’s a recent Wednesday, and little sister Arianna looks great/awful – depending on your perspective.

Her now 12-year-old face is sallow and swollen, with dark circles around her eyes and mouth. She keeps touching her mouth because the medicines have given her sores on the inside of her lips. One of the drugs is interfering with her brain’s ability to know where her feet are at all times, so she doesn’t climb stairs. She’s tired and weak.

“Chemo brain” makes her forgetful and easily confused.

But she’s starting to feel a little better, even if it’s all relative.

“Your perspective on ‘good’ changes,” Dr. Dennis O’Brien tells her.

Still, she is stoic in her white knee socks with neon polka dots and tennis shoes with neon blue and orange laces. When O’Brien says he wants to swab one of her mouth sores to make sure it’s not a virus or bacteria – both dangerous with her run-amok immune system under siege by chemo – Arianna thinks he intends to scrape it with something sharp.

“Ugh,” she says, then immediately relents. “Cool.”

The swab turns out to be more like a Q-tip, and the procedure is painless, but it’s just one more hassle in a morning of them: blood tests, followed by a chemo injection.

The chemo drugs can be different each visit, but this one shows the silver-lining/dark-side world the girls are in: It takes only a few minutes to inject, which the girls like, and it doesn’t have heavy side effects, which they like even more.

But Rowe has to gown up and ensure that the medicine never touches skin, as it will make the skin die and slough off.

While we imagine children as fragile and frail, O’Brien said they actually have much better cancer survival rates than adults because they are so much stronger and otherwise healthier, so they can take more aggressive treatments.

“I wouldn’t be sitting here like you,” O’Brien tells Arianna. “I’d be lying there moaning.”

Patients such as Arianna also have a positive attitude. Part of that is she sees a light somewhere in the tunnel – she’ll soon be able to go back to school.

“We’re halfway through this cycle, then we’ll move on to maintenance,” O’Brien tells her. The maintenance chemo is smaller doses, less often, making it more tolerable. “Until then, take it easy. This is a hard time for you, and that’s to be expected.”

Though O’Brien talks to Vickie about prescriptions and appointments, most of the time he spends talking to the girls, explaining what tests he wants to do and why, what medicines he’s using and what they should do, both good and bad.

He answers their questions and tells them to write down any they think of later so they don’t forget.

Another major help for Arianna is big sister Chyanna, who on this day is not getting treatment but came anyway to keep her sister company.

Chyanna’s on maintenance chemo now and feeling much better, though she still tires quickly. She has not only put on makeup but is showing off her new wig – a bouffant of jet-black hair (a change from her natural light brown) that falls to her shoulders.

Her T-shirt is black and says “Loser”; the back has a Bible verse that fits, but Chyanna prefers to just show off the front and let people wonder.

After a year of treatment, Chyanna’s the veteran here and has been there for little sister Arianna since her diagnosis.

She understands the strange – like Chyanna, Arianna has a port under her skin so nurses can inject medications into a central line that runs directly to her heart – and the downright bizarre – one medicine turns your urine red and another makes it neon green.

“I didn’t want to sugarcoat it, but I think it was easier (for her) because I already went through it,” Chyanna said.

And she had, indeed, been through it: In addition to chemo, Chyanna also had radiation treatments and suffered several setbacks. When she had to stay home from school sick, she quickly became depressed.

“I didn’t really deal with it in the beginning,” Chyanna said. “I just sat in bed and felt sorry for myself. I was on Prednisone, which made my face all big, so I didn’t want to see anyone.”

Some of it, she doesn’t like to remember now.

“I just remember crying a lot. Feeling overwhelmed. Feeling like, ‘How did this happen to me?’ ” she says.

In addition to everything else, both girls have also had to take steroids as part of their treatment and suffered through heavy mood swings because of it. Both say the steroids are worse than the chemo.

But the Howe community, especially the Smiths’ church, Brighton Chapel, and their schools, have been more than supportive.

Students and teachers at the girls’ schools shaved their heads in solidarity when they lost their hair; volunteers from church stayed with the girls so Vickie and Bret Smith could both keep working; and both donated meals and hosted fundraisers to pay for things insurance doesn’t, such as gas for the weekly trips to Lutheran Hospital.

“Our church has been like family,” Chyanna said. “There’s just so many people around supporting you.”

Vickie can hardly talk about what the support has meant.

“Anything I need, they’re there,” she said. “Anything. With no hesitation. I couldn’t have done this without that.”

The hospital has been supportive, too – nurses from Lutheran’s pediatric oncology department have visited the girls’ classrooms to explain the disease, what the girls are going through and what to expect.

What to expect is often the unexpected: Though Chyanna now appears fine, she had spent almost all of June in the hospital. Arianna, during her chemo treatment, claimed she just felt tired.

“A lot of movies make it look worse than it actually is,” she said. “It’s not like you’re sick and tired all the time.”

That was on Aug. 17. Three days later, on Saturday the 20th, she had a fever, she had another the next day and when her temperature rose Monday, she was admitted to the hospital.

Two days later, she’s challenging nurses to games of air hockey (“She’s vicious,” one says; “She shows no mercy,” another says) and helping to distribute crafts to other children in the hospital.

The family has been making crafts since Chyanna’s diagnosis, first as a fundraiser and now just to give away.

As Arianna pushes her IV stand through the hallways, her face is covered by a mask to help ward off infections and her bald head is covered by a bandanna, but her ear-to-ear grin is plain to see. She loves giving other kids gifts.

“We just wanted to do something, and we thought that was a way to help out,” Arianna said.

Despite all the ups and downs, both girls have a good prognosis: Gone are the days when a diagnosis of cancer was a death sentence. Instead, they will each likely have about 2 1/2 years of treatment and then get on with their lives, cancer-free, Dr. O’Brien said.

Still, with two sisters being diagnosed with subtypes of the same cancer within six months of each other, you can’t help but ask why.

Is it genetics? Something in the water? A creator with a sick sense of humor? Or just dumb luck?

Vickie Smith has asked the question herself. “I was mad (at God) a bit, but I reconciled that,” she said.

We have some guesses as to why, O’Brien said, but no real answers. Similar cancers hitting siblings is not unheard of, however: O’Brien saw two brothers during his residency who were diagnosed about the same time with leukemia and in his fellowship saw two siblings diagnosed within months of each other with the same bone tumor.

“Is there a viral trigger? Is there a predisposition that you’re born with?” O’Brien said. “It’s probably multi-factorial, but we don’t know.”

The mystery is bigger with children, he said, because they haven’t had time to be exposed to all the dangers adults have. There hasn’t been time for the effects of a poor diet, smoking and drinking to take their toll.

Doctors do know there are many genetic changes within tumors, but they don’t know whether those changes are inherited – like a genetic trap that springs, maybe after exposure to a virus – or if they are changes from the tumor itself.

The genetics question is one of utmost importance for one member of the Smith family, not because two sisters have been diagnosed with the same cancer within six months of each other, and not because humans have an innate need to assign blame for the bad things that happen in life.

The genetics question matters because there is a third sister in the Smith house, one with the exact same DNA as Arianna: Her identical twin, Kiara.

So far, Kiara has shown no signs of cancer. Her mother would like her tested, but doctors have been reluctant to test without a medical reason.

Vickie tries not to let her fears show to any of her children, but kids know. And Kiara is frightened, too: Vickie recently found Kiara with a thermometer, taking her own temperature.

She was checking for a fever.

dstockman@jg.net