BUFFALO, N.Y. (WIVB) — Luke Gworek is 8 years old, and he is the Band Aid King. It’s a moniker he has been earning since December, 2013. That’s the first time he walked through the doors of the Roswell Park Cancer Institute in Buffalo.
“He had been really ill with what they thought was a nasty virus or an infection of some sort, and the antibiotics weren’t working”, explained Danielle, Luke’s mom. She says in a matter of days, Luke’s lymph nodes turned as ‘hard as marbles’ and the doctor told them to come in the next day.
The doctor suggested Luke may have mononucleosis. It’s not common for children his age, but certainly possible, and the suggestion was a relief for his parents. Unfortunately, a simple blood test proved the doctor wrong. What was happening with Luke was much worse than mono.
Luke has Acute Lymphoblastic Leukemia.
“How do you deal with cancer? It’s never anything you ever think about, you never think that it’s going to happen to you, you never think that it’s going to happen to your child. How do I tell my daughter? Where do we go? There were thousands of questions running through my mind”, said Danielle Gworek.
That diagnosis came on December 18, 2013. Luke spent that Christmas Eve at Women and Children’s Hospital in Buffalo, and eventually started receiving his cancer treatments at Roswell.
As Luke’s dad explained, the doctors did “lab work for his blood. They tear his blood apart 20 different ways and say this is this number, here’s this number. When we first started, there were a lot of blood transfusions, platelet transfusions”. The blood work, combined with his chemotherapy and spinal taps, meant Luke was going through an entire box of band aids in one day, at times.
How the band aid drive began
One of Luke’s nurses, Anita, remembers the day that Luke’s transformation into royalty began.
”That’s where Luke came in, because I gave him a band aid with a sad face on it and he didn’t like it, but I didn’t have any other band aids to give him”, explained Anita.
The sad face on the band aid did not make Luke feel better.
“I don’t even know why they would even invent a frowny-faced band aid”, Luke said about the experience. On the ride home, he told his mom he wanted to make sure no other patients ever had to have those band aids. He wanted to start a band-aid drive.
“We started talking about what we could do, and how we could make this happen. And he said maybe you could share it on our facebook page. Next thing we know, thousands of boxes are coming in through the mail. Every day, we still get boxes”. Luke’s mom says as of May 15, 2015, they had donated more than 3,000 boxes of band aids to Roswell Park Cancer Institute, Women and Children’s Hospital, and the Visiting Nurses Association.
Word of Luke’s band aid drive has reached businesses and schools far and wide, including Christ the King School in Amherst, N.Y.
Max Damiani is a student there. His mom works at Roswell, and told him what Luke was up to, so he decided to help.
Max said of Luke, “I think he’s grateful because people who he doesn’t even know are caring this much about him and sending in these band aids to help him”.
Christ the King is one of several schools that donated hundreds of boxes to Luke’s cause.
How Luke’s life has changed
Since the first band aid Luke had placed on his arm, or leg, or back because of treatment, his life has changed dramatically. He played hockey on a youth league for 4 years, and also enjoyed baseball. But he had to give all of that up for treatment.
“I’ve been in the hospital a lot getting lots of chemo and I’ve been like really sick. I felt like really sad but I knew that I shouldn’t play because I don’t want to get more sick”, Luke said about not playing his favorite sport.
There were times during his chemotherapy that Luke’s immune system was practically non-existent. His dad says the innovative treatments at Roswell saved his life. One of those treatments involved injecting antibodies into Luke’s blood, to help him fight off infections.
“This winter, he was so immune compromised he had every virus under the sun, including the Flu, which he gets a flu shot for. The IVIG treatment worked. It took about a month to kick in, be he really perked back up”, explained Luke’s dad, Bill.
He says the wonderful care Luke has received at Roswell, along with the need for more innovative treatments, like IVIG, is why he and his family now support the Ride for Roswell. There are posters of Luke and Bill Gworek, wearing their “Team Luke” riding jerseys, all over the hospital.
“We are full advocates of the Ride for Roswell. Danielle and I always want to give back and seeing how they’ve helped our son, how they’ve saved his life, and that’s all from years-ago research, so why shouldn’t we give back and make it even better?”, said Bill Gworek of his fundraising efforts for the Ride.
Last year, his team raised $12,000. This year, his goal is to raise at least $20,000.
What will happen to Luke next
As for Luke’s treatment, he will continue what’s known as the “maintenance” portion of his treatment at Roswell for the next year. This includes once-a-month chemo sessions, combined with spinal taps and breathing treatments. And then, on April 1, 2016, he will get what everyone hopes is his last chemotherapy injection ever. But that doesn’t mean things will go back to the ‘normal’ the Gworek family once knew.
“I would love for it to be back to that normal that we had before December 18, 2013. But it will never be, our lives have changed, we have changed completely. The new normal will include a lot of uncertainty at first because you’re not here, you’re not getting your blood drawn, you don’t know what your counts are, you’re always going to wonder well, okay, he’s got a virus, so is it a virus or is it back?” said Luke’s mom about life after treatment.
Luke will have to go to an oncology hospital for the rest of his life to make sure the cancer doesn’t come back, and that he doesn’t develop a new cancer, which is a risk for adults who had the disease as a child.
None of those concerns is stopping the Band Aid King from looking forward to his future. Luke plans to continue his band aid drive as long as it takes.
As he said, that’s because “if I stopped this year, and then the hospital ran out of kid-friendly band aids, they would have to buy them and spend a lot of money”.
After Luke’s final day of treatment, he hopes to have a big party, “like an all-done-with-cancer party with family and friends”. You can bet it will be a celebration fit for a king.