On the last day of first grade at St. Peter’s Elementary School, Sean Putt walked into a metal pole at school. When he got home, he told his mom about it but went on to play with his younger brother the way he does most days. The next morning, both of Sean’s eyes were black and blue and within a few days they swelled shut. Trisha Putt took her son to the doctor and he assured her the bruises would heal.
It was the start of a long string of bruises showing up all over Sean’s body. “All of his bruises could be explained, but I couldn’t understand why he bruised so easily and they took so long to go away,” said Trisha. “I went and got some homeopathic pills to help heal bruises, and they did get better but they weren’t going away.”
Over the Fourth of July weekend of 2012, Trisha complained to her husband, Eliott, that Sean’s coloring just wasn’t right. She didn’t want to go back again to the doctor to ask about his bruises because she had already gone several times. “The doctor just kept saying, ‘boys will be boys,’ but I just knew something wasn’t right.”
When Trisha saw a rash on Sean’s collarbone and his bruises hadn’t lessened, she went back in and was ready to go another round with Sean’s doctor. However, when the doctor saw the “rash” on Sean’s collarbone, it was his idea to immediately send them over to MedCentral for blood work. “He told me to go home and pack some things for a couple of days because most likely we’d be going to Nationwide Children’s Hospital within the hour.”
That’s exactly what happened. A healthy child’s platelet count ranges between 250- to 400- thousand. Sean’s count was at 6,000. What she thought was a rash was actually petechiae(bleeding under the skin). The Putt family spent the next three days at Children’s Hospital while Sean underwent several different types of transfusions. “That’s when he was diagnosed with ITP [Idiopathic Thrombocytopenic Purpura],” said Trisha. “His other cell counts were ok, but his platelets were way off. They told us that eighty-percent of kids with ITP need just one IVIG transfusion and their platelets are jump-started back into production. Sean ended up being in the twenty-percent that didn’t.”
With ITP, foreign antibodies attach themselves to the platelets. The spleen, thinking the platelets are foreign, filters out the platelets. Most children who get ITP have been diagnosed after some sort of sickness. This wasn’t the case with Sean.
Intravenous Immunoglobulin (IVIG) transfusions are the number one treatment for ITP. The first transfusion had no effect on Sean. The second one brought his numbers up…for all of two weeks. Sean underwent three IVIG transfusions, but his platelet count would not stay up.
After that, the doctors at Nationwide Children’s Hospital started a steroid therapy for Sean along with the transfusions. Sean ballooned up from the steroids and students at school started making fun of him for his weight gain. “Kids can be cruel and it was hard to watch Sean go through that,” explained his mother.
In October, when the steroids and transfusions weren’t working, the doctors told Elliott and Trisha Putt that Sean would need to undergo a bone marrow test to rule out Leukemia and other types of cancers. Thankfully, the bone marrow test turned up negative for cancer, but the Putt’s were no closer to a treatment that would work for Sean, so he started a chemotherapy program for 90-days to again attempt to “jar” his platelets into production, but that was also unsuccessful.
By January 2013, Sean had undergone 43 IVIG transfusions. And that same month, Sean’s platelet count crashed to below 500, which is the lowest that can be recorded. He spent another five days in the hospital and received five IVIG’s along with steroids. The Putt’s spent New Year’s Day in the hospital with Sean.
Over the next few months Sean received several more transfusions. During a family outing following the last day of school from second grade, Sean was mauled by a dog and was rushed to MedCentral and then to Nationwide Children’s Hospital. He suffered 17 puncture wounds. Part of his lower arm skin and tissue was torn away and he had to be stitched. Because of Sean’s condition, his blood wouldn’t clot. He had severe wounds in his neck that continued to bleed until the fourth day in the hospital.
The Putt’s were running out of options when the doctors at Nationwide Children’s Hospital told them about an experimental drug therapy. “It was a 24-week study and we wouldn’t know until the end of the study if Sean would be getting the actual drug or a placebo,” explained Elliott. “We decided to give it a try.”
Every Wednesday Sean went down to Columbus to Children’s Hospital to get a shot and have his blood work checked. “We prayed and waited but his numbers stayed down,” said Trisha, feeling disheartened.
On August 20, the Putt’s were told that Sean had not been receiving the actual drug, but the placebo. “That was the best news possible,” Trisha said. “Now he starts the real drug and we hope and pray it works.”
Through all of this, Sean has remained smiling and upbeat. “He has his ‘Hulk’ moments, from the medicines, but mostly he’s a regular little boy.” In fact, Trisha Putt says it’s frustrating for her when other parents look at Sean and think he’s healthy, so they comment on how good he looks. They have no idea how sick he really is and how much his little body has been through. And then there are the parents who are afraid to have their children around Sean, thinking he might be contagious. “It’s just ignorance, but it hurts.”
Between Sean’s doctors and coaches at St. Peter’s, Sean was allowed to play soccer. “He doesn’t play as much as he used to, but if he gets a few minutes out on the field, it means a lot,” explains his Mom. He can no longer ride his bike or play baseball or go to gym class. “He can’t even have recess; he has to sit on a bench in the hallway instead.”
For the next 22 weeks Sean will continue to make his weekly trips to Children’s Hospital to get the actual drug therapy. “We’ll know by the sixth week if it’s working,” Elliott said. “After ten weeks, if he’s not responding, we’ll take him off.”
And then what?
There are two more options being considered at this time. “Either a spleenectomy or more severe chemotherapy,” said the Putt’s. The problem with removing his spleen is that they aren’t certain it will solve the ITP. The procedure itself is extremely dangerous for someone like Sean since his blood doesn’t clot. The spleen also builds up antibodies to protect him, so he will be susceptible to everything that comes along. He would need to undergo a five-year regiment of immunization shots to give his body the antibodies it needs.
Though Eliott Putt has good medical insurance, a lot of Sean’s treatments have not been covered. “The chemotherapy wasn’t covered at all because it wasn’t considered a diagnosis of treatment for ITP,” he explained.
Through all of this, the Putt’s find joy in the small things. “We’ve made it because of our faith and prayers and friends,” they both admit.
Currently the Putt’s owe Children’s Hospital over $200,000 for out-of-pocket expenses, and the costs continue to rise. Friends have organized fundraisers and opened an account at Key Bank in Sean’s name for donations. There is also a way to donate to him online through Sean’s Facebook page.
“All of his bruises could be explained, but I couldn’t understand why he bruised so easily and they took so long to go away,” said Trisha Putt.
