A little more meaningful

Kaneland baseball team standing behind teammate Joe Spitzzeri, who's battling a rare and dangerous disease

Back in December, junior Kaneland basketball player Joe Spitzzeri got sick.

Being in the cold Midwest in winter time, that is nothing unusual.

But the whirlwind Spitzzeri has endured, and survived, in the past six months is nothing short of amazing.

That illness was diagnosed as mononucleosis. But Spitzzeri was not getting any better. After more testing, it was revealed that he had an X-chromosome abnormality, a genetic defect, that triggered an ultra-rare condition known as X-linked lymphoproliferative disease that put Spitzzeri on the brink of death.

"It finally got to the point where we knew something was wrong," Joe's father, Joe Spitzzeri, Sr., said. "Once they gave us the diagnosis of what was wrong, it was like, 'Wow.' It was a shocker, because you have a six-foot, healthy athlete and all of a sudden he's struggling just to survive."

Just how rare is lymphoproliferative disease? Well, only one child in a million has it, and Spitzzeri is one of only three known cases involving a high school student in the entire country. Most children see the disease proliferate itself in their first couple years of life, and of those cases, the majority do not survive to adulthood.

Given how rare the condition is, the Spitzzeri's have agreed to share all of Joe's medical information with the International Medical Society.

"For teenagers, even the doctors told us that they've never seen it," Joe, Sr. said. "So anything they were giving us in terms of success rates and percentages, those are for two and three year olds. It was new territory for them."

Joe's condition deteriorated so quickly that his friends and teammates could not believe what was happening to him.

"It was kind of frustrating," Kaneland junior Mike Pritchard said. "He was at school and he was fine. Within a week, he was in the hospital. We were really confused."

After about six weeks of treatment for mono, Spitzzeri was finally admitted to Children's Memorial Hospital in Chicago on Jan. 4 and his condition was diagnosed. His treatment included eight weeks of chemotherapy and steroids before eventually needing to undergo a stem cell transplant.

The reason that his genetic abnormality kicked in was due to the effects of mono. In order to fight that infection, the body's white blood cells automatically kick in to fight the illness. But with the abnormality, his white blood cells began to attack his own liver and spleen.

"When he was initially very sick, he ran fevers from 103 to 104 degrees, so he was very weak," said Joe's mother, Caryn Spitzzeri. "He lost a great deal of weight. When he came back home for a couple of weeks, he was very unsteady. He had a hard time walking. He was just very frail."

The only donors for the stem cell transplant could be his three siblings, since each of his parents have only half of the DNA profile. His younger brother, Matt, and older sister, Ashley, were not matches. But his oldest sister, 24-year-old Natalie, was a perfect match.

"She was very honored to be able to do that for him," Caryn said.

But the April 2 transplant nearly did not happen, as Joe had his biggest setback to date. Joe and Caryn were staying across the street from Children's at Kohl House, a home for transplant patients, since March 23. On the big day, Caryn was pushing Joe across the street to Children's in a wheelchair when he became very ill.

By the time they got into the hospital, his fever was up to 106.4 and his heart rate and blood pressure rose to dangerous levels.

"We almost lost him that evening, but the doctors (in particular Dr. Rishi Lulla, who has cared for Joe from Day 1 of the ordeal) came through once again and were able to pull him out of that with a lot of drugs," Caryn said. "He was in intensive care for five days and spent two more days in the hospital before we were able to get back to Kohl's House."

Joe, Sr. described the transplant itself as 'science fiction.' Natalie sat hooked up to two lines for five hours to extract the stem cells needed to save Joe. The next day, Joe went through a one-hour blood transfusion and the transplant was a success.

Today marks 39 days since the transplant, but doctors say that Joe is not out of the woods until at least 100 days have passed, which will be July 11.

"There is a certain freedom that comes with being healthy 100 days after the transplant," Caryn said. "Then he can begin to use common sense, but still go into public places. That will be the first time he can go out to eat, eat food that has not been prepared at home."

Since Joe's immune system is still very weak, he cannot go to public places such as grocery stores, movie theaters, restaurants, even school, until he is cleared. His diet consists mostly of fruits and vegetables with peels on them for now to avoid any potential germs.

When he arrived back home for good on Tuesday from Kohl's House, Joe arrived to a completely re-vamped house. While he was gone, Joe, Sr. had all of the carpet pulled out of the house and hardwood floors installed. He also had all of the home's duct work cleaned thoroughly and an electronic air filter installed on the furnace.

"The house looks great," Caryn said. "We've gone too far with Joey to take the chance of having a relapse from catching a bug at home. We've brought him back to a much-improved house. I've become an even bigger germaphob than I already was."

While Caryn and Joe were staying in Chicago, Joe, Sr. and Matt, who is a freshman at Kaneland, held down the fort in Elburn.

"It wasn't the same," Joe, Sr. said. "The house was pretty empty. A lot of take-out and steaks on the grill, that's all it was. Everything was disrupted."

Matt was tested for the disease once it came to light, but to the relief of the entire family, he did not inherit the genetic abnormality. Even though he was spared the illness, it was a tough time for the youngest Spitzzeri sibling.

"People don't always think about how it affects siblings," Caryn said. "He's had a hard time seeing his brother as sick as he was. As Joey gets better, Matt gets better."

For Joe, whom Caryn describes as 'a man of few words,' the support he received from his friends helped pull him out of some dark times. Though it was hard to travel the 100 miles round trip from the Kaneland area to Chicago for visits, there was never a shortage of cards, letters, e-mails, text messages and phone calls.

"Even when he was too weak to read them, they were still coming in," Caryn said. "When you're teammates and you find yourself very, very ill, that's one thing that brings you some happiness and comfort. Your family is important, but all the kids at Kaneland have been very thoughtful and always there for him."

One thing Joe can do is attend outdoor events. Now, Joe is back with his buddies, and they gave him quite a welcome home Thursday. Prior to the Knight's 7-4 win over Sycamore, his teammates presented him with his jersey, No. 28, and had him throw out the ceremonial first pitch. The entire celebration was kept a secret from Joe.

"It wore him out a little bit, but he was so happy," Caryn said. "He smiled in a way I have not seen in a long time. It was a very significant day for him."

The team also donated half of its fund raising for the season, $750, to the family in the pre-game celebration.

"It was really nice of the guys," Joe said. "It's really great to be back. All these guys are just great to be around. It felt really good to be home. It got pretty boring out there."

Even though Joe was not able to play this season, the team kept him in their thoughts. The Knight's road uniforms carried a No. 28 patch on the sleeve.

"He played all fall ball with us, played all summer with us," Kaneland coach Brian Aversa said. "To come out here and he's not with the team, just to have his presence not be there, something was missing. We really miss him as a team and as a family."

Working with counselors and tutors at Children's, Joe was able to stay on top of his school work and is back getting work from Kaneland now. He cannot be back in the building until October, but he is still on schedule to graduate with his class next spring.

"People are like, 'Oh, you're so lucky. You don't have to get up and go to school,'" Joe said. "But when you've been away for so long, I'd rather do that."

Joe hopes to be able to play sports next year. His basketball season may be in jeopardy, simply because he cannot even be back at school until October and figures to need time regaining his strength. But he hopes to back on the diamond next spring with his friends.

"Everybody has the expectation, without any setbacks, that he should be able to go," Joe, Sr. said.

Now, every interaction between Joe and his family and friends is a little more meaningful, a little more special. That is the main lesson learned through a harrowing experience.

"It brings you closer together," Joe, Sr. said. "He was always the strongest kid of the group. His teammates have said, 'If it could happen to him, it could happen to any of us.'"