Growing up with cancer
July 3, 2008 · Updated 4:12 PM
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 Childrens Hospital in Seattle, the families live at Ronald McDonald House only a few blocks away.
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.
Coltons constant fatigue and head cold changed that.
He was so tired, hed ask if friends would go home so he could rest, Debbie said.
For weeks, Colton couldnt breathe through his nose. After three weeks of two different antibiotics, his local doctor performed an adenoidectomy. He found a mass in the boys head and referred Colton to an ENT at Childrens Hospital.
That doctor ordered blood work and a biopsy.
Jan. 14, the diagnosis came back as Burkitts lymphoma, a cancer of the system that acts as a filter for the body.
Debbie doesnt 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 Coltons 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 its 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 hasnt suffered much. His parents say hed
rather eat than have a feeding tube inserted.
He may be squeamish about tubes down his nose, but Colton isnt 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
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. Hes been assigned to duty at Childrenís
Hospital for the duration of Coltons treatment.
He said watching his sons 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 isnt the familys only patient. The day of Coltons surgery, Debbieís
father who lives with the family, fell. Hes been in hospital recovering from
hip-replacement surgery and pins being placed in his wrist. Soon hell be
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. Hell 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 Ill go back Friday, Colton announced.
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. Shell
receive more drugs at the same time. She and her mom would like to be back on
Whidbey in August. If everything goes well, shell 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 didnt make sense for her to rent a Greenbank house any longer.
Ronald McDonald House doesnt allow anyone to establish permanent residence
there. Waterman edges around that rule by using the Langley address of her
parents, Anne and Bob Waterman.
Watermans 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 Coltons doctor, Carlis 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 Carlis 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.
Carlis 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 daughters 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.
Carlis 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.
Shell shuttle between Childrens and Ronald McDonald House for the foreseeable future.
Her immune system may be low, but Carlis 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
She cocks her head. Her hand hovers, then jabs a brush into red paint. A swish
and her pictures done.
Carli spent two weeks in Childrens 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 hasnt been smooth.
She refuses to take pills.
Waterman crushes Carlis 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
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 Carlis mouth and press the button.
Carli usually opens her mouth right away. Sometimes, however, shell prolong the game telling her mother the batteries are dead or nothings 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. Carlis 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 youll 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.
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 hasnt visited her mothers 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 isnt clean enough for Kaitie to
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 girls learned to ride a horse and taken swimming lessons without any ill effects. But her grandmother worries.
For the past weeks, visiting her grandparents hasnt been an option. Cancer
returned this spring. Kaities had chemotherapy treatments but wont 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 shes the same spunky
When her first baby tooth fell out she wanted to tell the whole world.
She settled for calling everyone she knew.
Kaities 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 arent allowed here. I love you tumors, but you cant stay here. Go home.
Kaities relapse could have devastated Jeff Richmond.
Ten years ago, cancer killed Scott, his son with his first wife. Scott
received treatment at Childrens.
The family lived in Yakima, another farming area with lots of chemicals, but doctors dont know why cancer struck Scott.
Doctors have scrutinized Kaities and Scotts records but found no link.
Jeffs heard doctors say they could do nothing for his child.
He cant predict his reaction if doctors tell him theres no more they can do
for Kaitie, but hes calm.
We have too many options in front of us, he said. Theres always hope.
Jenny believes Kaitie developed cancer to help Jeff heal after loosing Scott.
Jeff had to remain in Yakima and work during Scotts treatment. Hes been with Kaitie from the moment of diagnosis.
I believe were 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 familys determined she make a repeat appearance.
Kaitie has her sights set on August. Shes 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, shes been drawing pictures for each student in Mrs. Bardwells 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 Carlis in the hospital. During Carlis last hospitalization, the single mother estimates she lost 20 hours of work.
I dont 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
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 Childrens 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 dont worry much about the future.
They spend energy on more important tasks like what to have for dinner.
It wont be leftovers.