Growing up with cancer

Three Whidbey Island kids never eat childhood standards of raw cookie dough or leftover mac and cheese. Uncooked eggs and leftover anything are out of the question.

So is sharing food.

Multiple hands poking about creates a chunky-style soup of germs. Acquiring any germ, bacteria or virus is too risky for Colton Anderson, 6, Carli Newman, 4, and Kaitlin Richmond, 5.

Chemotherapy has left each child with almost non-existent immune systems.

Cancer has turned the kids into pale, bald figures. It has turned their parents, Wade and Debbie Anderson, Erin Waterman and Jeff and Jenny Richmond, into label analysts and medical translators.

They control their emotions while their children undergo horrifying medications, surgeries and treatments.

And they read fine print. Only bottled water filtered using reverse osmosis meets safety criteria. Drinking tap water and well water is too dangerous. So is gulping at a water fountain.

When not in Children’s Hospital in Seattle, the families live at Ronald McDonald House only a few blocks away.

Colton Anderson

Update: Colton Anderson should be back on Whidbey this weekend. Doctors need to review lab work results before releasing him.

Wade and Debbie Anderson planned on their family spending winter and spring league bowling and attending Scout functions. Wade thought volunteering with North Whidbey Fire and Rescue and completing his Navy career would keep him busy.

Colton’s constant fatigue and head cold changed that.

“He was so tired, he’d ask if friends would go home so he could rest,” Debbie said.

For weeks, Colton couldn’t breathe through his nose. After three weeks of two different antibiotics, his local doctor performed an adenoidectomy. He found a mass in the boy’s head and referred Colton to an ENT at Children’s Hospital.

That doctor ordered blood work and a biopsy.

Jan. 14, the diagnosis came back as Burkitt’s lymphoma, a cancer of the system that acts as a filter for the body.

Debbie doesn’t remember much after the surgeon came out and told them their son had cancer.

“I blacked out I was crying so hard,” she said.

Wade and Angela say Colton’s lucky. The cancer was confined to his nasal

passages and didnít get a chance to spread to his brain or bones.

Lymphoma usually affects people older than 50. Sometimes teenage boys get the disease. But in a 6-year-old it’s rare. This type of cancer is associated with exposure to pesticides and herbicides. Colton was born in Lemoore, Calif., a valley area rich in farming and agricultural chemicals.

The family moved to Whidbey Island in 2000 and settled near Taylor Road.

Besides surgery, his treatment has called for chemotherapy. He quickly learned to take oral medications to escape more injections. Daily shots stimulate his immune system. And his appetite hasn’t suffered much. His parents say he’d

rather eat than have a feeding tube inserted.

He may be squeamish about tubes down his nose, but Colton isn’t touchy about two tubes dangling from his chest.

Children receiving chemotherapy need numerous injections and bags of IV drugs.

Hickman lines reduce the number of needlesticks to their veins. Sometimes called “central lines,” these are inserted through the chest and into a major blood vessel for the duration of treatment. When itís time for chemotherapy, the caps are removed and hooked to IV bags.

Keeping the lines clean is a literal life-or-death imperative.

Colton flushes his lines with sterile saline solution nightly. The rest of the

time, he ignores them.

He pulls on the neck of his shirt to show a visitor the

incision.

“Wanna see the lines,” he asked while bouncing the plastic tubes in his hand

before running off with a friend.

Wade retires from the Navy in August. He’s been assigned to duty at Childrenís

Hospital for the duration of Colton’s treatment.

He said watching his son’s treatment has been hard.

“You see him attached to bags stamped with a skull and crossbones,” he said.

“And you know the poison dripping into him is saving his life.”

Colton isn’t the family’s only patient. The day of Colton’s surgery, Debbieís

father who lives with the family, fell. He’s been in hospital recovering from

hip-replacement surgery and pins being placed in his wrist. Soon he’ll be

discharged.

Volunteers with NWF&R and Oak Harbor Lions arranged for material donations and

built a wheelchair ramp at the Andersonís home.

Doctors declared Colton cancer-free April 19. He’ll be sent home soon, depending on how quickly his immune system rebounds. They hope no

later than Thursday, April 28.

Doctors have said he can return to class as soon as he likes.

“That means I’ll go back Friday,” Colton announced.

Carli Newman

UPDATE BOX: She began the next chemo round this week. Hope to be back at RMH

soon. The upcoming round of chemo is expected to be the hardest yet. She’ll

receive more drugs at the same time. She and her mom would like to be back on

Whidbey in August. If everything goes well, she’ll start oral chemo in December.

After living in Seattle for months with never a trip home, Erin Waterman put all her belongings in storage. It didn’t make sense for her to rent a Greenbank house any longer.

Ronald McDonald House doesn’t allow anyone to establish permanent residence

there. Waterman edges around that rule by using the Langley address of her

parents, Anne and Bob Waterman.

Waterman’s daughter Carli Newman, 4, has been receiving treatment for

lymphoblastic lymphoma for two years. Short brown hair floats over her scalp. In a few days, that might be gone. Carli started another round of chemo last week.

Like Colton’s doctor, Carli’s never suspected she had cancer. Doctors thought

her heavy chest congestion was a tough case of viral pneumonia. Eventually,

doctors withdrew fluid for tests.

One of Carli’s lungs held enough fluid to fill a wine bottle. An X-ray showed a mass around her heart that had shoved her left lung into her right. All the

fluid had masked the tumor.

Carli’s lymphoma is also linked pesticide and herbicide exposure but no one

knows its exact cause.

Erin and Carli lived in Lagoon Point in South Whidbey. Erin wonders if chemicals from off herbicide-sprayed roadsides washing to low areas like Lagoon Point have some hand in her daughter’s cancer.

Rat poison used at her home might play a part too.

“I have no idea why Carli got cancer,” Waterman said.

“Every possible cause people mention is only a theory.”

Carli’s never had surgery which would have stressed her heart too much. Chemo

and other drugs have shriveled the tumor. But Carli needs more rounds of chemo

to kill any circulating cancer cells.

She’ll shuttle between Children’s and Ronald McDonald House for the foreseeable future.

Her immune system may be low, but Carli’s spirits soar.

Blue tights run from beneath a pink skirt freckled with paint.

A butterfly on her pink T-shirt hovers over the declaration “Life is good.” More paint — or powdered sugar from a Girl Scout cookie — smudges her nose and

cheeks.

She cocks her head. Her hand hovers, then jabs a brush into red paint. A swish

and her picture’s done.

Carli spent two weeks in Children’s Hospital getting IV antibiotics to fight an infection moving up her arm. The little girl bit a fingernail too short and

infection shot through the open wound.

Those two weeks are the only delays in the treatment routine.

But everything hasn’t been smooth.

She refuses to take pills.

Waterman crushes Carli’s medicine and mixes them with cherry syrup.

One drug is so toxic, Waterman must wear a mask and gloves while crushing it.

Inhaling the dust could cause lung cancer. Yet the toxic drug may save her

daughter.

Carli sometimes refuses to take her poison-laced cherry cocktail.

Waterman uses an old garage-door opener to make drug time game time. She points the device at Carli’s mouth and press the button.

Carli usually opens her mouth right away. Sometimes, however, she’ll prolong the game telling her mother the batteries are dead or nothing’s working. Waterman will change batteries or switch her angle of aim.

This remote-control approach has reduced drug taking from at least an hour

ordeal to a 10-minute game.

Before moving to Seattle, Carli spent lots of time at Double Bluff. Carli’s Make-A-Wish paperwork lists a visit to a beach as her dream.

Many kids sleep with a toy or blanket but not Carli. Her talisman is an handmade card which reads “I hope you’ll get better soon! When you do, go the beach and get some seashells. That will make you happy!”

She sleeps with the card every night.

Richmond family

UPDATE: Kaitie

Tests show the 1-inch-by-2-inch tumor is no more than 6 mm

now. All blood work is clear. A bone marrow test is expected to be clear as

well. They hope to return home for a few days before starting another chemo

round May 2. If tests after that round are clear, Kaitie can go home and return for tests every three months.

Jenny Richmond hasn’t visited her mother’s home in more than a year.

Her parents, Tom and Mary Coupe, live only a few minutes’ drive from the

Richmond home but Mary Coupe fears her house isn’t clean enough for Kaitie to

visit.

The five-year-old Coupeville girl received a bone marrow transplant two years

ago after extreme chemotherapy killed her immune system as well as the cancer — neuroblastoma. Surgeons removed one kidney when they removed the tumor.

Since doctors let her go home, the little girl’s learned to ride a horse and taken swimming lessons without any ill effects. But her grandmother worries.

For the past weeks, visiting her grandparents hasn’t been an option. Cancer

returned this spring. Kaitie’s had chemotherapy treatments but won’t have

surgery. The cancer in her abdomen is on the same side as her functioning kidney and surgery would put too much stress on the organ.

Kaitie did not give up on cancer the first time and she’s the same spunky

patient now.

When her first baby tooth fell out she wanted to tell the whole world.

She settled for calling everyone she knew.

Kaitie’s attitude bouys her family.

Jenny had a hard time not laughing when she told Kaitie cancer had returned.

After hearing about the news, Kaitie looked at her abdomen and said,

“Tumors aren’t allowed here. I love you tumors, but you can’t stay here. Go home.”

Kaitie’s relapse could have devastated Jeff Richmond.

Ten years ago, cancer killed Scott, his son with his first wife. Scott

received treatment at Children’s.

The family lived in Yakima, another farming area with lots of chemicals, but doctors don’t know why cancer struck Scott.

Doctors have scrutinized Kaitie’s and Scott’s records but found no link.

Jeff’s heard doctors say they could do nothing for his child.

He can’t predict his reaction if doctors tell him there’s no more they can do

for Kaitie, but he’s calm.

“We have too many options in front of us,” he said. “There’s always hope.”

Jenny believes Kaitie developed cancer to help Jeff heal after loosing Scott.

Jeff had to remain in Yakima and work during Scott’s treatment. He’s been with Kaitie from the moment of diagnosis.

“I believe we’re here for a purpose, part of a larger plan,” Jenny said.

Kaitie has another round of chemo to go. Jeff and Jenny hope to be back on

Whidbey Island by June 3 and Relay for Life, a cancer fundraiser.

Last year, Kaitie carried a torch in the survivor lap. Her family’s determined she make a repeat appearance.

Kaitie has her sights set on August. She’s been invited to Reno, Nev., at attend a horse show. Aug. 14, the Richmonds hope to wrangle everyone to Reno so Kaitie can ride her horse Angel around the ring.

Last fall, she began kindergarten at Coupeville Elementary School. Since returning to Seattle, she’s been drawing pictures for each student in Mrs. Bardwell’s kindergarten class at Coupeville Elementary School.

What they want:

Almost every family battling cancer amazes visitors with their attitude.

They worry about other families, not theirs.

Erin Waterman concerns Jenny Richmond.

Waterman works from home as a medical transcriptionist and uses a desktop PC.

She needs a laptop computer so she can work when Carli’s in the hospital. During Carli’s last hospitalization, the single mother estimates she lost 20 hours of work.

“I don’t know how Erin handles the extra stress of working too,” Jenny said. “A laptop would help her so much.”

Each family goes through stages of anger, grief and uncertainty but parents

realize fast dark attitudes affect their children. Everyone plans for the

future.

Once Carli, Colton and Kaitie have moved on in life, Erin Waterman, Wade and

Debbie Anderson and Jeff and Jenny Richmond want to help other families.

They hope to work with Childrenís Hospital to inform doctors how subtle

pediatric cancer symptoms can be and what quick, fast and not too expensive

tests to order to diagnose cancer (or rule it out) faster.

Recurring fevers that resist multiple rounds of antibiotics, fatigue and pain

could be symptoms of many common, treatable illnesses. But these symptoms can be the first sign of cancer.

Pediatric cancer escapes even experienced doctors.

Jeff and Jenny took Kaitie to Children’s emergency room but the doctor dismissed their fears. One week later, doctors found a tumor after Jeff and Jenny argued for a scan.

All hope for freedom

No one is ever declared cured of cancer. Cancer-free is the best diagnosis they can hear.

High doses of chemotherapy during childhood can cause learning disabilities and makes developing other cancers more likely.

Colton, Carli and Kaitie don’t worry much about the future.

They spend energy on more important tasks like what to have for dinner.

It won’t be leftovers.

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