CVR Article: Child Cancer Survivor is now childhood cancer advocate

The following article was published in this week’s edition of the Cashmere Valley Record, written by Kacie Thrift, staff writer.

Child cancer survivor is now a childhood cancer advocate

Danielle Cloakey, 30, was once fighting for her life as a young child with cancer.  Having won her battle with the disease, she is now using her own experience to help other children fight by being a childhood cancer advocate.

It started in December 1982 when Danielle was only 15 months old.  Her parents, Chris (Cashmere High School teacher and basketball coach) and Leslie Cloakey (reading paraprofessional at Vale Elementary) thought they had a healthy first child until they started noticing their daughter had changes in her walking.

Danielle started leaning into walls and using furniture to help her walk.  Her parents waited to to see if the condition got any worse before they took her to a doctor.  The condition didn’t get worse, but it didn’t get better.

During Danielle’s 15 month shots, Leslie showed the nurse how Danielle walks and instantly the nurse noticed Danielle hyper extended her left knee.  The nurse recommended Leslie and her one-year-old daughter to a pediatrician because she thought maybe something was wrong with Danielle’s hips.

After Danielle had her eyes examined, a doctor thought she might have a brain tumor.  A CT scan on January 3, 1983 showed nothing abnormal, [and] the doctor suggested Danielle had a viral infection of her cerebelleum.  The doctor then took some abdominal x-rays and a urine sample.  The x-rays showed nothing, but the urine sample came back irregular.

Danielle was admitted to the Children’s Hospital in Seattle on Jan. 11, 1983 where doctors ran a 24-hour urine collection.  Doctors soon informed the Cloakeys that their daughter had a tumor on her right adrenal gland.  Danielle was diagnosed with neuroblastoma, with the cancer already at stage 4.  Cancer cells were in Danielle’s lymph nodes.  The Cloakeys were told that she had a 10-40 percent chance of living five years.

“My parents were young when they got the news I had cancer.  They were actually given the diagnosed of neuroblastoma stage 4 on my mom’s 24th birthday, January 13, 1983, and my dad would have been 23 that April,” Danielle said.

On January 24th [it was delayed because Danielle came down with a cold] Danielle went in for a surgery that took many hours.  Surgeons slowly cut away at the tumor [that was] attached to Danielle’s right kidney, extended to her left kidney, and partially wrapped around her aorta  [They removed as much as the tumor as they could].  Four days later, Danielle started chemotherapy.

“The routine was always the same,” Danielle said.  “Start the IVs, get medication for the nausea, start the chemo drugs through the IV, spend the night vomiting until I finally fell asleep around dawn.”

Danielle would receive a treatment for 5 days. and then take two weeks of rest before she would start the process again.  On February 24th, she was admitted to the hospital again for a minor surgery to have a Hickman line inserted.  In April, she had an ultrasound that showed her tumor had shrunk about 50 percent.  

[On] April 11, 1983, Danielle was admitted to the University of Washington Hospital for radiation.  However, radiation was postponed because she would not stay still for the procedure.  

“Finally, on April 13th, they just about tied every inch of me down.  Can you imagine?  The next few days went easier with me crying less, though I still fought being tied down,” Danielle said.

Danielle said a story her mother loves to tell is one during radiation.  Danielle and Leslie were waiting to go into radiation and a doctor in a white lab coat saw Danielle standing there with a bonnet.  The doctor squatted down and said, “What a cute bonnet you have!”

This did not please Danielle for she was already feeling sick.  Danielle reached out and slapped the lady’s cheek.  “My mom was so embarrassed and tried to explain to the doctor that I had been through a lot lately,” she said.

During April and May , Danielle continued chemotherapy.  In mid-June, she went in for a surgery to check the tumor.  Eight days later, Danielle was taken to the emergency room because her stomach was swollen. Eventually, doctors discovered , during Danielle’s recent surgery, her bowel had been nicked, which caused fluid to fill her stomach.  

Even though Danielle weighed only 19 pounds, she was put on a low-fat diet to solve the fluid issue.  December of 1983 was full of blood counts and delays in her chemo treatments.  Blood tests showed her blood count as worse than when she was first diagnosed.  

[The] next May, Danielle was admitted to the hospital for a high fever and double ear infection.  Doctors told the Cloakeys their daughter had viral encephalitis.  [For] two weeks, she was in a coma-like state.  When Danielle started to become more alert and awake, her parents noticed she wasn’t talking.  

Danielle could understand what other people were saying, but she lost the ability to walk, sit on her own, and even hold her head up.  “The doctors told my parents that whatever I didn’t get back in 6 months, I would never get back.  Yeah, right,” Danielle said.

A couple months later, Leslie gave birth to their second child Ryan.  At this point, Danielle still had a hard time supporting herself, but she was smart and had her own way of doing things.  When Danielle’s brother began to crawl, she too learned to crawl.  When he started to walk, she learned to walk again.

At four years old, Danielle got her first walker.  When she was 5 and a half, Danielle’s mother realized she had hearing loss and soon got her daughter hearing aids.  Because Danielle is speech and hearing impaired, she uses the internet often to interact with others (Danielle used Facebook for this interview).  In 1990, the family moved to Cashmere and they have been here ever since 

“I do not have any memories of this time.  I was too young.  I basically made my parents tell me why I am the way I am over and over when I was growing up.  People in general think I have cerebral palsy, but I don’t.  I wasn’t born like this,” Danielle said.

The radiation treatments destroyed some cells in Danielle’s spine, and she grew older and taller, she developed severe scoliosis.  She has had three partial spinal fusions, and in the summer of 2010, she had a full spinal fusion.  Chris and Leslie Cloakey built an extension on the main floor of their Cashmere home because Danielle can’t go up and down stairs [anymore].

“Since I have no memories of being sick, I’ve had to piece together my story bit by bit, a lot like a jigsaw puzzle, and who I am came out of that.  When I was young, my dad told me that quote by Henry Ford, ‘Whether you think you can, or you think you can’t, you’re right,’ and I think that has always been there, at the back of my mind.  There is no such thing as can’t.  If people tell me I can’t do something, I get upset, and set out to prove them wrong,” Danielle said.  

About to turn 31, Danielle is living her life to the fullest and using her own experience with childhood cancer to help others fight.  She is involved in a social media campaign called “The Truth 365.”  This social media campaign officially launched last week on Sept. 13th, National Childhood Cancer Awareness Day.  “The Truth 365” gives a voice to children fighting cancer.

According to a press release for the film, it released last week and features compelling and inspiring stories of children and their families fighting cancer, as well as interviews with political leaders and several of the country’s most respected pediatric oncologists.  The film and social media campaign are efforts to inspire millions of people to show their support for children with cancer.

“On average, every single day, 46 kids are diagnosed in this country alone.  Every single day, 7 children die from childhood cancer.  The government gives less than 4 percent of research funds to pediatric cancer, and that is not enough, considering that there are 12 different types of pediatric cancer,” Danielle said.

In her efforts to reach out to people about childhood cancer, Danielle encourages people to volunteer and research childhood cancer so they know what to look for in in their own children.  Anyone can donate to charities like Curesearch, or St. Judes, where all the funds go to research and/or patient care.  

Danielle has been involved with “The Truth 365” since July 22 of this year.  She previously researched neuroblastoma for them.  She also did some research with another cancer survivor on how tax dollars are used.  During the research, she found out the most people pay is 82 cents to childhood cancer research per household.  

 

“What I want to tell people about children with cancer is that it is not as rare as they think.  If it happened to me, it can happen to anyone,” Danielle said.  “I am a childhood cancer advocate today because I found out that basically nothing has changed in the way they treat childhood cancer since I’ve had it.  No child should have to fight for their lives against something they don’t understand.”

To find out more about childhood cancer and to support the campaign Danielle works for, visit thetruth365.org.

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