MONTVILLE, NJ – A diagnosis of a rare form of leukemia for their teenage son has left one family with a new set of life priorities and a new appreciation for the goodness of the people of Montville Township.
The Chioccariello family was set to have a normal Thanksgiving last fall, with some skiing on the menu for their 15-year-old son Frankie with some friends in Vermont. Frankie had just finished a busy season of soccer, his mom Karen recalled in a conversation with TAPinto Montville.
“We went out to dinner for my mom’s birthday, and I looked at the photos I had taken, and thought, ‘Gosh, Frankie looks so pale!’,” she said.
The marking period changed, and Frankie’s health teacher sent him to the nurse because she also noticed his paleness.
“The nurse called me and said she saw yellow in his eyes,” Karen said. “She encouraged me to take him to see his doctor.”
The doctor ordered blood work, so for expediency’s sake, Karen took him to the hospital due to the Thanksgiving holiday.
“In the back of my mind, I wondered, could it be something serious?” she said. “He’s 15! You talk about drugs and drinking with your kids – but cancer?”
Karen said they waited an hour, but when the doctor walked in with two other people and asked to talk to her alone, she had a bad feeling. They told her they were conducting additional testing.
“I asked if it could be cancer, and when they said yes, I just lost it,” she said.
Karen said the time passed in a blur but they stayed at Morristown Hospital for about 72 hours of testing. She said her family consulted with many friends and they recommended Memorial Sloan Kettering Cancer Center in Manhattan.
“In the ambulance on the way there, Frankie asked me, ‘Mom, am I going to be OK?’” she said. “Some things you never forget.”
At Sloan, the diagnosis came back: AML leukemia, a very rare form not typically seen in kids, Karen said. Treatment was started a week after he arrived. Karen said the first round of chemo lasted 10 days, but Frankie handled it pretty well with just a little nausea. He spent a month at Sloan. That month was like “time on another planet,” Karen said, because it was December – the holidays.
“We were waiting for the numbers, and it seemed like forever, and I go into a store and hear holiday music, and …”
Luckily Frankie was able to come home for his birthday and Christmas late in December. He arrived home to hundreds and hundreds of cards and gifts, Karen said.
“It was crazy!” she said. “Frankie told me, ‘I’m not special, I don’t feel sick.’ It was overwhelming.”
Montville Township had heard about Frankie’s plight, and the hashtag #FrankieStrong had caught fire, as word spread on social media, urging residents to send cards to the family to encourage Frankie.
After the first round of chemo, a bone marrow transplant was necessary, but luckily, Frankie’s 12-year-old sister Ally was a match, even though there was just a 25% chance that she would be.
“She’s petrified of needles but she had such a smile when she found out she was a match,” Karen said.
Frankie was put on harsh chemo and Ally had to stay home from school for several weeks to stay healthy and not catch a cold or the flu.
The operation was a success, but, “now Frankie looked sick,” she said. “He had lost his eyelashes and eyebrows and he couldn’t eat because the bone marrow infusion makes you sick to your stomach. He was getting nutrition through an IV. It was tough.”
But three weeks later he was able to, once again, play X-box with his friends – a favorite pastime.
Frankie suffered another setback, though, when he developed a rare liver disorder called VOD, which was a side effect of the chemo. Karen noticed he had started gaining too much weight for someone on IV nutrition and called it to the attention of the doctors. The result was another eight weeks in the hospital.
“My husband’s father had cancer and told me, ‘don’t get too high on the highs or too low on the lows,’ and I have smaller kids so I can’t just sit on the couch – I have to be there for my kids, but I cried in the car,” she said. “I couldn’t show Frankie, though.”
Karen said that trying to communicate with everyone who wanted to know Frankie’s progress became difficult so a friend started a blog that she used to update everyone. She tried to only write the positive news so she wouldn’t worry anyone.
“I believe you get back what you put out into the universe,” she said. “And writing was therapeutic.”
But communication was all she wanted to do. She didn’t want more than encouragement and prayers from friends.
“I didn’t want anything [from anyone],” she said.
But her friends gave gift cards, a parking space in Manhattan, and funds to help with expenses.
“[I was] frozen, but they knew what we needed,” she said. “[People] offered to wear #17, which was Frankie’s soccer uniform number, we got texts and prayers from strangers, but after awhile it was a little overwhelming. As horrible as all this was, there was so much beauty.
“There’s days like this when any stress you feel is changeable – you choose how you react. We felt so blessed to be part of such an amazing town. It helped so much. Every time we turned around, there was something. Like at the Michelle Sullivan Dads basketball game, the girls did a Frankie cheer. They did anything to put a smile on his face. My sister and I own a catering business, and we’re always trying to make lives easier, and being on the other side of it was overwhelming. But I felt so lucky and thankful to be so blessed.
“We weren’t like, ‘why us?’ We said, ‘it’ll make us stronger and tighter and we’ll come out ok.’”
Eventually Karen felt OK about accepting help, like dinner for her family while she spent a lot of time in Manhattan with Frankie at the hospital, because her husband was with the kids in Montville. A friend set up a dinner donation app, and “within minutes every slot was taken,” she said. “I was gone for about four months.”
She said Montville Township Police Lieutenant Carlo Marucci sent her a text that people wanted to help out but felt helpless. Finally Marucci convinced the family to allow a beefsteak dinner fundraiser to be sponsored by the PBA in Frankie’s name on May 10.
The 400-seat venue sold out within a couple of weeks, and many told the Chioccariellos and Marucci that they regretted they hadn’t purchased tickets quickly enough, Marucci told TAPinto Montville. A tricky tray was also held that night.
“[Frankie’s father] Frank Chioccariello had coached soccer forever and everyone knows the family and wanted to help out,” Marucci said. One hundred percent of the proceeds went to the family, Marucci said.
At the fundraiser, Karen told the assembly, “Every day I found strength from everybody in this room. Your texts and emails – I didn’t even know a lot of the people that were doing these things. But I got so much strength from everybody here.”
At the fundraiser, Frank spoke of how many people have been doing things for his family, both in the foreground and background. When their roof needed repairs, Gaf and Bay Roofing performed the service for “next to nothing,” Frank said. A friend’s nanny was sneaking over to clean the house.
“I thought I was doing a great job keeping the house clean, but the kids told me, Fara’s coming over and cleaning!” Frank said with a laugh. He talked about how friends helped shuttle the kids and his appreciation for the health teacher noticing Frankie’s illness.
“It’s been crazy, you know, you talk about this crazy disease – my son has cancer, but my whole family had it, and it’s a tough thing to deal with,” Frank told the assembly. “There are [other adults and kids in the town] who have it.
“I looked at the situation and I said if you don’t think positive – everybody asked me, like, ‘oh my God cancer cancer cancer’ but I said, ‘he’s going to be fine.’
“You get those kinds of things and there’s no doubt that Frankie’s going to come out of this perfect. We are all saying ‘FrankieStrong’ – he sits on a chair and plays Xbox. You want to know who’s strong? Karen’s strong! She’s the one who’s strong.
“I always get emotional. I get emotional during the World Series when the Yankees play! Karen’s been there day in, and day out. She’s fought more the fight than Frankie has fought. She really has.
“If you think positive stuff, positive stuff happens. Google is the devil and it will tell you crazy stuff. There is no strong that is stronger than Karen strong.”
Other fundraisers included the schools selling #FrankieStrong bracelets. The Chioccariellos wanted to donate the proceeds to pediatric cancer research, and Karen said that $8,000 has been raised.
“We wanted to give back to Sloan,” she said.
Karen said this experience has put a new spin on what is important.
“There was a scheduling error recently and my daughter’s basketball game got moved from one school to another,” she said. “A mom walked in and said, ‘This is a disaster.’ I was like, seriously? Don’t complain about stupid things. Have gratitude and take a step back. Your health is all that matters.”
Karen said that for now, Frankie has to go to Sloan twice a week. He lost 20 pounds when he was on the IV nutrition, so he is slowly trying to gain the weight back, but he’s on a restricted diet. His hair is starting to grow back, but right now he has no immune system, which will take four to five months to be restored so he can “be a kid again.” He’s taking two drugs to avoid “graft vs. host disease,” in which the bone marrow cells his sister donated attack his system.
“I do a lot of cleaning because of his immune system, and he’ll have to have all his vaccines redone,” she said.
“We’re hoping by June to have some sort of normalcy back,” she said. “I hope he can go back to school in September.”
But in the meantime, Karen and the entire Chioccariello family wanted to convey their thanks to all the Montville residents who have sent cards, helped out, prayed, came to the fundraiser, and just been there for them.
“I’ve lived here my whole life and never felt anything like this,” she said. “Being in this town 48 years and going through this has been overwhelming. We just want to thank everybody - friends, family, the town - everybody.”
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