‘I’m thankful she never lost hope’

After girl’s cancer fight, holiday has added meaning for Cranston family

By Pam Schiff
Posted 11/25/15

“Mommy, I don’t feel good.”

Those five words can make any parent cringe and send their thoughts reeling. Calling in late to work, making a pediatrician appointment, missing tests and …

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‘I’m thankful she never lost hope’

After girl’s cancer fight, holiday has added meaning for Cranston family

Posted

“Mommy, I don’t feel good.”

Those five words can make any parent cringe and send their thoughts reeling. Calling in late to work, making a pediatrician appointment, missing tests and schoolwork – all these considerations, and more, quickly come to mind.

Never does the idea cross anyone’s mind that his or her child will be diagnosed with cancer. But that is exactly what happened to Deanna Shapshapian when her then nine-year-old daughter, Ani Ayanyan, was diagnosed with primitive neuroectodermal tumors of the central nervous system (CNS PNET) in October 2013.

CNS PNET involves aggressive neoplasms of the brain, and is most frequently encountered in the pediatric population. The diagnosis also included embryonal tumor with abundant neuropil and true rosettes (ETANTR).

“What started off as mild symptoms such as lack of energy, headaches, throwing up, I really didn’t think anything of it,” Deanna said.

In September 2013, she noticed that Ani’s left eye looked bigger than her right. She was concerned with a diagnosis of Graves’ disease.

Deanna was very nervous, and took Ani to the family pediatrician, who did notice a “distinct protrusion” in the left eye and recommended a follow-up with an eye doctor.

Ani was sluggish all the time, and going to school left her exhausted. She had to sit out of her beloved fall baseball season.

“Coach [Jeff] Marchetti assured her the team would win for her,” Deanna said.

The appointment with the eye doctor left Deanna uneasy.

“He said Ani had perfect vision, and it is not uncommon for girls entering puberty to develop quicker,” she said.

Deanna relied on her “mother’s instincts” that there was something wrong.

“I went to check on her one night and her left eye was wide open while she slept,” she said.

An MRI was ordered, and Deanna had to contend with the insurance coverage of doing the MRI with contrast or no contrast. On Oct. 9, Ani had the MRI, and the imagers took it upon themselves to perform the procedure with the contrast as well.

Deanna was told to give the disc to the eye doctor right away. “I could tell by the technician’s face how serious it was. I got really scared, really fast,” she said.

Ani was going to go to the Hasbro Children’s Hospital Tomorrow Fund Clinic immediately. There was a large mass on the lining of her brain.

“I freaked out, I had a meltdown. I called Ani’s godmother, Marie, to come with us. I had to get Ani from school,” Deanna said.

Hasbro did in fact confirm the growth, but they could not confirm if it was benign. On Thursday, Oct. 10, Ani was admitted to the hospital.

“They told us there were going to figure out what was going on. She was a trouper through the whole ordeal,” Deanna said.

Ani went through more tests, MRI cat scans and abdominal scans. On Friday, Oct. 11, hoping the results would show the mass was benign, Ani was discharged and told to resume normal activities.

Deanna and Ani were scheduled to go back to Hasbro on Oct. 16 to make a plan of treatment. In the meantime, the family doctor, Jeanne Swen, had gotten Ani’s records from Hasbro.

“She called me up right away after finding out Ani had been discharged. She could have had a stroke,” Deanna said.

Swen had researched a doctor for them to see at Boston Children’s Hospital and arranged for him to call Deanna.

The truth was the mass was malignant, and growing by the second.

On Oct. 12, Deanna got the call from Dr. Alan Cohen in Boston.

“You need to pack a bag, and plan to stay for a few weeks,” Deanna recalled him saying.

At this point, Ani’s father came out from California, and Deanna had a wonderful support group helping with her older child, son Hagop.

Due to the chance of a stroke, the size of the mass, and how fast it was growing, Cohen said immediate admission was necessary.

“Dr. Cohen told me he was getting his ‘A’ team together. He never once asked for my insurance. He said we will do what we have to do to get her healthy,” Deanna said.

Ani was seen by several different types of specialists, including endocrinologists and pulmonologists. She had an angioplasty procedure on Oct. 16, and surgery was scheduled for the next day, Oct. 17.

“Dr. Cohen wanted to make sure that blood vessels were not feeding the tumor. They would have to cut off the supply. The tumor, he kept saying, was malicious,” Deanna said.

The surgery took 12 hours to complete.

“From 4 a.m. to 4 p.m., they worked to remove the tumor and resection the brain. Every hour an advocate would come out and give us an update,” Deanna said.

Family members and friends filled the waiting areas. People brought platters of food to feed the group.

“I bonded with the other families whose children were also having surgery,” Deanna said.

Ani’s head was shaved, and she had 76 stitches. Almost the entire tumor had wrapped around her pituitary gland and both optic nerves’ main artery.

“I got the official diagnosis about 16 days after the surgery, around Nov. 2. It took much longer for the biopsy because of the complicated nature of the tumor. It was devastating. My head went into a tailspin. I’ll never forget the overwhelming feeling of not knowing in layman’s terms what all of that meant until the doctors broke it down for my understanding,” Deanna said.

Ani developed a strong and special relationship with Cohen and several nurses who helped her be strong both physically and mentally.

“Rhonda, she’s the best nurse ever. I didn’t feel scared or anything, I knew I was going to beat it. I would tell other kids to don’t worry about it and be yourself and be strong,” Ani said.

Ani became an Elvis Presley fan because of Cohen’s affinity for the singer. On Oct. 26, when she was being discharged and Cohen was going over wound care and symptoms to look for, Ani told him she had something to say.

“Thank you, thank you very much,” she said in her best Elvis voice.

“With her head bandaged and swollen, that was the most amazing thanks I’ve ever gotten,” Cohen said.

While her head was open for surgery, there was a piece of the tumor that went undetected in her brain. Ani underwent chemotherapy and radiation to get that piece.

Once back home in Cranston, Ani started going back to school, wearing hats. “She tried to be as normal as possible. She asked her teachers not to treat her differently. She would go to birthday parties. It was very important to her not to be ‘special,’” Deanna said.

She would go back to Massachusetts General Hospital to finish treatments for six weeks. The family spent the Christmas holiday at Christopher’s Haven.

“It’s a home for families with kids in the hospital,” Deanna said.

Starting Jan. 17, 2014, Ani would get chemo treatments for six months, at intervals of three to five days staying at Mass General.

“Ani would actually mentor other children on how to deal with treatments. She helped a nine-year-old girl who was being fitted for a [radiation treatment] helmet,” Deanna said.

Deanna is still trying to find a way to say thank you to Cohen. “What do you do for the person who saved your child’s life?” she said.

Deanna is focusing on being happy, and trying to pay it forward in her life.

“I try to keep my life full of positivity. Always smiling. I made sure my kids never saw me crying. All my meltdowns were behind closed doors. They needed mom to be strong,” she said.

Today, Ani is 11 years old and in the sixth grade. The Oaklawn Elementary School community was supportive and rallied around Ani.

“She was tutored by Brown students, and when she went back to school, she was actually two weeks ahead. She had 89 excused absences and maintained straight A’s,” Deanna said.

Mass General paid for the cost of a real hair wig.

“We had gotten her a Rihanna wig, but she rarely wears it. [She says] ‘I don’t mind no hair,’” Deanna said.

The radiation treatments killed off the last piece of cancer. On July 17, 2014, Ani had her last chemo treatment and a big party.

“Cancer is not in our vocabulary, it is not in our lives,” Deanna said.

Ani continues getting MRIs every three months. She also is receiving Genotropin, which is a growth hormone replacement therapy.

“She had initially lost so much weight that the doctors had said, let her eat whatever she wants to put the weight back. And boy, did she ever. But now that she is undergoing daily hormone replacement therapy, we have to be conscious about eating a very balanced diet. No soda, no sugars, no junk food. She eats very healthy meals. I’m sure she sneaks in some sweets here and there, but overall she is very conscious of the benefits of eating well and makes sure she sticks to it,” Deanna said.

For the most part, both kids have stayed true to their personalities. Hagop, 13, does use the “well, Ani got so much” card every chance he gets.

“But I just remind him that what she and we all went through was nothing fun or to be compared to gifts, etc. People just do kind things for others when they are going through difficult times in their lives and that doesn’t mean they love you less or more. But he has had his share of surprises and generous gifts as well. I guess it’s just a kid being a kid,” Deanna said.

Deanna really is amazed at the attitude Ani expresses everyday.

“She’s such an easygoing kid. It’s not hard at all. She listens to everything I ask. If anything, it has made her more motivated to help me with things, whether it be doing things around the house, helping in any way she can. It has made her so much more compassionate then she already was,” Deanna said.

With Thanksgiving season, the family is obviously thankful for Ani’s good health, and a few other things.

“She was a true warrior through the whole fight, and I’m thankful she never lost hope,” Hagop said.

Ani feels thankful for her family, friends, and sports like hockey. Her favorite things to do are riding her dirt bike and playing with her friends.

“I am thankful for so many things. I am most thankful for having two beautiful, healthy and happy kids, and having the continuous love and support from my loved ones. Everything else in life is extra. I’m completely blessed and for that I am thankful on a daily basis,” Deana said.

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HOPE IS FOREVER: Taken for a program at the hospital called Flashes of Hope are Deanna, Hagop and Ani. (Photos courtesy of Deanna Diana Shapshapian)

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FAMILY LOVE: Ani, her mom Deanna, and her brother Hagop are all smiles as she continues to stay healthy.

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