Jayden's story, told by his mom, Kristen:
Jayden was diagnosed with retinoblastoma (Rb) at the age of 15 months in July 2013. Up until then, Jayden was a healthy and active toddler.
A few months before, I noticed a weird reflection in one of his eyes in some photos. I asked his pediatrician about it and he assured me that it was nothing to worry about. (Later, I would find out this was leucoria).
A week after his wellness check-up, he stopped eating, playing and talking. For four days, we went to the clinic and talked to nurses and they thought it was pink eye. Finally we went to the ER after his eye became swollen shut and triple the normal size.
The next day, the ophthalmologist told me that Jayden had been blind in his right eye since he was 7 or 8 months old and that he had cancer. The tumor was basically taking over his whole eye. The cancer was starting to spread to the optic nerve, so we had to act fast.
That entire week we were in the hospital, he had a spinal tap, MRIs and CTs, port placement and started his first of 6 rounds of chemo. The first 2 rounds were higher dosage, he was on steroids, multiple eye drops, medicines.
Two months later, he had surgery to remove his eye. He also had many allergic reactions to the drugs he had to take. During those two months his eye was still in, he was in immense pain and on oxycodone every 4 hours.
After his eye finally calmed down enough to have surgery, it was a relief to have my little boy come back to me. A few days after the surgery, he started talking and playing again! He had a clear plastic conformer in his eye until his eye socket was healed enough to get his prosthetic eye.
His ocularist team is amazing and you can't even tell which one is his "special eye." Jayden is now comfortable wearing his prosthesis and wears his glasses all the time to protect his good eye.
He finished chemo in January of 2014 and had his first stable MRI February 6, 2014!
Every 4 months or so, he has an EUA (exam under anesthesia) to check both of his eye orbits and his good eye. He will be closely monitored until the age of 5, which is when the eyes stop producing new cells and we can stop worrying about retinoblastoma. There are two types of Rb, hereditary and non-hereditary. Thankfully, Jayden's genetic testing found out his is non-hereditary.
He has PTSD and anxiety with doctors, no depth-perception, "flat foot" and some neuropathy (due to one of the chemo drugs).
He attends physical therapy, uses foot inserts to correct his flat feet, and went to occupational therapy to help with body awareness. Steps were a huge problem, but he is doing better.
The amazing Child Life specialists continually engage him in play therapy to help with his anxiety. His last MRI was in May and was still stable. But we did find out he has some thinning tissue in his enucleated eye orbit. We are praying it doesn't get worse; he may need another surgery.
At the American Family Children's Hospital Radiothon in May 2016, "Super Jay" celebrated 27 months cancer-free. He is a vibrant and hilarious little boy and we are grateful that he is doing so well.
He has had a rough journey, but he is winning the fight with retinoblastoma!
Help Jayden and the 600 kids fighting cancer under UW's care: Donate to UW's Campaign to End Childhood Cancer