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Fight for Julian

23 Sep

A/N: September is National Childhood Cancer Awareness Month, and this article was originally published in the Sept. 19 edition of the Lititz Record-Express

Julian Sperduto is a blue-eyed toddler who watches “Little Einstein” from beginning to end in one sitting, eats solid foods on his own (his favorites are pizza and ham loaf) and loves cars.

The 21-month-old Lititz boy has Stage IV Wilms tumor, a rare form of kidney cancer, and has spent the past four months in and out of the hospital and is currently fighting for his life.

His parents, Jason and Mandy Sperduto, have been doing everything they can to help save him before time runs out.

“You just don’t want your kids in pain. If we could take this cancer from him, you wouldn’t have to ask us twice,” said Mandy. “Absolutely without question. Anything for him, all the way down to our life.”

Yesterday, doctors at Children’s Hospital of Philadelphia removed his right kidney and the tumor, but according to his mother, Julian’s road to recovery is going to be long and rough.

“We’re not sure what’s going to happen after,” said Mandy.

According to the American Cancer Society, about 500 new cases of Wilms tumor are diagnosed in the United States each year. Most Wilms tumors are unilateral, meaning that they affect only one kidney, but five percent of children have the cancer in both kidneys.

There’s no clear cause, but symptoms include swelling or hard mass in the abdomen or stomach, fever, nausea, loss of appetite, shortness of breath, constipation and blood in the urine.

Stage IV of the disease indicates that the standard treatment is surgery followed by radiation to the abdomen. Julian, who will be two on Thanksgiving Day, has a favorable histology, which means the chance for a cure is very good. More than nine out of 10 Wilms tumor have a favorable histology.

However, doctors have recently found that the four modules or tumors in Julian’s lungs have grown from ¼ to ½ centimeter. This latest news has shocked his parents.

“We are just as scared as when we heard that he had Wilms tumor,” said Mandy. “We really thought this round of chemotherapy would work.”

Julian was about 16 months old when his parents first noticed that his stomach was swollen. He had also developed a low-grade fever, which lasted for about four days.

Mandy repeatedly took him to the pediatrician, who told her he had nothing serious.

“We noticed that he didn’t want to play much. He just was off. Something wasn’t right,” she said.

Then, in another trip, Julian had bloodwork and a chest X-ray done, and the results came back that he had bronchitis.

Meanwhile, his pediatrician was concerned about Julian’s high white blood cell count. After examining his urine sample, the doctor believed that he also had a urinary tract infection.

“They gave him 10 days of Amoxicillin. He was getting this Amoxicillin, and they said that his counts seemed to be getting better,” said Mandy.

In reality, Julian’s health was getting worse.

A couple weeks later while putting Julian in the bathtub, Mandy and Jason discovered that his stomach had increased in size again. The next day, on Friday, June 1, Mandy found blood in Julian’s diaper, and she immediately called the doctor again.

Because the regular pediatrician wasn’t available at the time, Mandy and Julian saw another doctor in the same practice. The doctor told a very different story.

“He had seen him, and immediately said, ‘You’re going to leave and you’re going to get an ultrasound. By the time, you come back down, I’ll have the results of the ultrasound.’ So we went to get the ultrasound done, came back,” said Mandy. “By that time, Jason was able to meet up with me and we were in the office and we sat down and he said, ‘There’s a mass on Julian’s right kidney, and the radiologist believes it’s Wilms Tumor.’”

The Sperdutos didn’t realize Wilms tumor was cancerous until they came home later that night and did research on the Internet.

“I don’t think we slept that night. We stayed up all night, researching Wilms tumor and that’s when we’ve seen the word ‘cancer’ and realized it was kidney cancer,” said Mandy. “The doctor did not tell us that. They said he had a tumor in his kidney.”

Not only did they research about the history and success rate of the disease – there’s an 80 percent chance of survival – but they also looked up hospitals that offered the best treatment care for children with Wilms tumor. CHOP became their number one choice since their success rate for children with Wilms tumor was in the 90th percentile.

“The doctors won’t give percentages,” said Jason. “I think the more you know, the less you speculate. Ignorance breeds fear.”

The family was initially supposed to get a call from Penn State Hershey Medical Center to schedule a CAT scan appointment on Monday, but they decided not to wait. They wanted to get a second opinion.

The next day, Julian and his parents headed to CHOP.

“When we researched CHOP, we thought their success rate was a bit higher. Also, they have new, cutting edge things there,” said Mandy. “We thought though Hershey is a great hospital, we thought CHOP might be better for our son in the cancer aspect of it.”

Julian’s CAT scan was done on the day they arrived on Saturday and three days later, he had a biopsy. His biopsy sample was then sent to a specialist in Chicago that focuses on kidney cancer, which ultimately confirmed that Julian had Stage 4 Wilms tumor. Meanwhile, the CAT scan resulted that the cancer had spread to his lungs.

Prior to his surgery, Julian has been getting a series of chemotherapy treatments and lab tests done every other week at a CHOP outpatient specialty care office in King of Prussia.

The frequent medical appointments has required Mandy to quit her job as a school bus driver in order to take Julian to King of Prussia or Philadelphia at least five days a week. A week of chemotherapy costs about $125 in gas.

“We have a week which is usually admission to the hospital because he usually gets sick, and then we have another week where we usually have to go back to King of Prussia to do testing,” she said.

The Sperdutos said the staff at CHOP has taken great care of Julian.

“The hospital, as a whole, has been very nice,” said Jason.

But from his attentiveness and funny personality, one would never know how much Julian has been forced to endure because of his illness.

“He’s very happy, playful, curious, and very smart,” said Jason, who works in carpet cleaning restoration.

“He’s really funny. He’ll do things. He’s so serious and then music will come on, and he’ll start dancing,” said Mandy. “He looks normal. You wouldn’t even know he had cancer. If you look at him, he looks like a normal toddler with no hair.”

Julian will be on chemotherapy for another year. His parents have been frugal on their spending since Jason is the breadwinner right now. They’ve had to cut their grocery bill 60 percent because most of the items needed are bought for Julian.

“I am buying soup. Julian is different. I am buying everything he needs,” said Mandy. “His PediaSure is $10.99 for a six-pack, a pack a week. He has to drink a PediaSure a day. It helps with his weight gain. We buy him that and diapers.”

Mandy hopes to go back to work in November for Premier Designs Jewelry, a direct sale jewelry company, in order to help pay for their daily expenses.

“I don’t want people donating money to us thinking that we have these astronomical medical costs,” said Mandy. “My husband’s job doesn’t cover all of our expenses, plus mortgage, plus car payment, plus credit card bills. I want people to know that.

The Sperdutos have had a strong support system that has helped them ease their difficult situation. Their extended families have supported them emotionally. Mandy’s bus employees have given her an EZ-Pass to help with the cost of turnpike tolls as well as hot food once a week to the house.

A few women from the Lititz United Methodist Church have also expressed interest to bring food as well, but now according to Mandy, it’s getting to the point where they’ve had to say no.

“I’m like, ‘You can’t’ because I don’t have enough room in my freezer because it’s only Jason and I and Julian. We don’t eat all the food so we freeze it so it doesn’t go to waste,” said Mandy. “I tell them, ‘You have to wait until I can afford a stand-up freezer so you can bring more food.”

Mandy and Jason are very humbled and grateful by the amount of support that they’ve received from the community even though they feel they don’t deserve it.

An anonymous person sent them a $100 gas card, and they’ve received an $800 donation from a local family who has dealt with cancer and other medical problems. The couple was overwhelmed by the donation that they wanted to donate half of the amount back to the family, which in return they refused.

“It’s unbelievable how many strangers are helping out,” said Jason.

Last Friday, Dianne Fussaro, a friend of the couple, organized a Premier Designs Jewelry fundraiser at Lancaster Catholic High School, where 100 percent of the proceeds went to help Julian and his parents.

Fussaro said when she found out about Julian’s cancer, she immediately had to act.

“The first thing I said to Mandy was, ‘Let me do this for you,” she said. “This is the only way I know how to raise money is by having a jewelry show and inviting as many people as I know.”

Fussaro said Mandy and Jason, whose first son Landon died two hours after his birth two years ago, are great role models for Julian.

“They’re fabulous parents. This little boy is the light of their life. They’ve been so strong through all of this and fighting for him all the time,” she said. “I’m amazed how much stamina they have, taking him to chemotherapy and the next week he’s back in the hospital.”

Mandy and Jason have their eyes set on a bright future for Julian, hopefully witnessing him doing good things in the world.

“I just want to see him grow up into a smart, healthy man who maybe has a hand in curing childhood cancer,” said Jason.

An account has been set up called “Julian’s Cancer Fight,” where people can donate money at any Citizen’s Bank branch office.

There will be a pasta dinner fundraiser at the Brickerville Fire Hall on Sunday, October 14 from 4 to 7 p.m.

“I’m not thankful that he has cancer, but I’m thankful that he has a curable cancer,” said Mandy. “But we still fight for him.”

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Posted by on September 23, 2012 in Published articles

 

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