Jayden’s symptoms began about two years ago when he was in fourth grade. He’d been playing basketball without any issues since first grade but started having problems on the court. When he ran, his heart would start pounding, he’d get a strange feeling in his chest, his hands turned ice cold, and he’d vomit.
“He was also waking up in the middle of the night and couldn’t get back to sleep,” shared Jayden’s grandmother, Bonnie. “All of these symptoms were very concerning, so I took him to his pediatrician.”
They were referred to a cardiologist, who didn’t find anything wrong but still recommended Jayden wear a heart monitor for a couple of weeks. When they came back for their follow-up appointment, Jayden’s blood pressure was dangerously high, so they were sent to the emergency department at Advocate Children’s Hospital – Park Ridge.
“While we were there, his blood pressure returned to normal. He had several tests, including an electrocardiogram, an echocardiogram and an ultrasound.”
Jayden was referred to Dr. Richard Kaplan a pediatric nephrologist. Everything appeared normal with Jayden’s kidneys.
“Then, in late October, Jayden went to the school nurse because he was having chest pain. His blood pressure was very high again, and after speaking to Dr. Kaplan, we went by ambulance to Advocate Children’s Hospital,” said Bonnie.
Jayden stayed in the hospital for a couple of days. His blood pressure was up and down, but other tests came back normal.
“He was about to be discharged when he had a very frightening episode. He was crying and in a lot of pain, and his face was bright red. He said his head felt like it was going to burst. He had a CT scan, and that’s when they found the tumor in his belly.”
A rare diagnosis
Doctors determined Jayden had a paraganglioma, a rare neuroendocrine tumor that usually forms along major blood vessels and nerve pathways in the head and neck. Jayden’s tumor was attached to several main arteries, which is why his blood pressure was so high and why he was waking up in the middle of the night. It was shocking news, but Jayden and Bonnie had plenty of help and support from both the clinical staff and the child life team.
“The child life specialists were there for every procedure, needle stick and test. They brought puzzles and things to do. They painted a pumpkin together and took him to the teen lounge,” said Bonnie. “Jayden was really angry about staying in the hospital and missing out on trick or treating, but the child life team helped him stay active. He was even able to participate in the hospital’s Halloween parade.”
Around this time, Bonnie gave Jayden a squishmallow, a popular type of plush toy. It was a little something that ended up making a big difference for her grandson.
“After the first squishmallow, it seemed like every visitor he had brought a new one for him. At one point, he had a whole bag full of squishmallows. They were very comforting for him.”
Jayden had to have two complex surgeries to remove the tumor. He was very nervous, but the surgical team let him bring one of his squishmallows for comfort. The surgeons were able to remove the whole tumor. After six weeks in the hospital, he was finally able to go home. He went back to school in mid-December.
Now Bonnie and Jayden are awaiting the results of a PET scan to make sure the tumor wasn’t cancerous. Jayden has regular follow-up appointments with the hematology/oncology team, nephrology and his own pediatrician.
“All of his care teams were amazing, not only at treating him, but also in their bedside manner. The doctors and nurses were friendly, caring and compassionate. I couldn’t have taken him to a better hospital,” shared Bonnie. “And the child life team helped him feel like a kid, not just a patient. He got to play virtual reality games and do art therapy. They supported me too, bringing me coffee and blankets and helping calm Jayden down when I was struggling to do so. They showed so much love and care.”
Giving back
Bonnie, Jayden and their family wanted to show their gratitude and help other pediatric patients at Advocate Children’s Hospital. Knowing Jayden’s fondness for squishmallows and how much comfort they brought him, his aunt, Amy, purchased several to donate to the hospital.
“Jayden is in Boy Scouts, and he wants to do a service project to give back,” said Bonnie. “We just can’t thank everyone enough. The clinical staff was incredible, and we wouldn’t have gotten through it all without the support of the child life team.”
The child life team at Advocate Children’s Hospital is supported by the generosity of donors. Please consider making a gift to help families like Jayden’s today.