Diagnosis: Retinoblastoma
The first time Wendy saw the “flash” in her son Jasen’s eye, she thought she may have imagined it. Jasen was just three months old and as Wendy laid him on the bed to change his clothing, the light hit his eye at a certain angle and light. It was gone as quickly as it came, she explains. But deep down, Wendy knew it was signaling something more.
A few days later Wendy took Jasen to his three month well visit with his pediatrician. She described what she had noticed in his eye. Despite her concerns, Jasen’s doctor did not find anything of concern with his eyes. Jasen’s doctor reassured Wendy that he was 100% healthy. This pediatrician, however, did not dim the lights in the room and did not do a red eye reflex exam on this visit.
As the months went on, Wendy kept noticing the strange flash of light every so often in Jasen’s eye. She was the only one in her family to see it. She again voiced her concerns to their pediatrician at Jasen’s 6 month well visit and then again at his 9 month exam. Each time Jasen’s doctor reassured her that Jasen was developing perfectly normally. Her reassurance did not calm Wendy’s concerns.
Over time, Wendy began to notice a strange new development in Jasen’s eye. His iris was changing color. And then on New Year’s Eve Wendy and Jasen gathered with their extended family. On this night, in the dim light of the house, another person finally noticed what Wendy had seen. Actually, that night every single family member was able to see the Glow in Jasen’s eye.
Armed with the support of her family, Wendy was determined to find answers for Jasen. She went home that night and began to research what may be causing his Glow. It was through this search that she saw a website called “LoveJoey.com” created by Pam Bergsma. Wendy did not know at the time but finding this website quite possibly saved Jasen’s life.
Pam is the Grandmother to Joey, a three year old little boy who lost his life to Retinoblastoma (RB) in December of 2000. Ever since her immeasurable loss, Pam has been determined to help other families discover this form of eye cancer in their children in a more timely manner. She hoped that by sharing information about the Glow and other signs of RB, as well as suggestions of what to ask and request during doctor visits, she could help other parents save their child from this potentially fatal cancer. Wendy emailed Pam though this site and within minutes Pam responded asking if they could talk. Pam listened to all of Wendy’s concerns and encouraged her to advocate for her son, to get him examined and to press for answers.
The very next week Wendy took Jasen to an ophthalmologist at the University of California, San Francisco. The doctor looked at Jasen and said he was 98% sure there was not any problem with his eyes. Strengthened by Pam’s advice, Wendy asked for him to dilate Jasen’s eyes and look again. The doctor complied, but still found nothing of concern. At that very moment his assistant entered the room allowing a crack of light to hit Jasen’s retina. Wendy heard a gasp. She knew right then that the doctor saw Jasen’s Glow.
The ophthalmologist did a more thorough exam and discovered Jasen did in fact have Retinoblastoma. He could see tumors in not one, but both of his eyes. He apologized profusely for missing this very critical diagnosis and told her what a wonderful mother she was to demand answers for her son.
Shortly thereafter Jasen started chemotherapy. Over the next 2 1/2 years Jasen also endured radiation, laser therapy and cryotherapy. Unfortunately, none of these treatments seemed to work. Jasen was getting sicker and sicker and Wendy once again was determined to help her child. She educated herself. She wanted to know as much as the specialists they visited, if not more. She wanted to be ahead of the game, to anticipate every next step, to offer treatment alternatives. Yet through it all she was prepared for the possibility that Jasen may need to have both eyes enucleated (removed) to save his life.
Wendy said that after years of treatment and disappointments, she finally prayed to God saying that if enucleation was His will, so be it.
The next day she received a call from St. Jude’s. The doctor assigned to their case encouraged her not to enucleate. They felt Jasen was a good candidate for a new form of chemotherapy that was just in its clinical trials known as Intra Arterial Chemotherapy. The doctor performing this new therapy was Dr. Abramson at Sloan Kettering in New York. The family soon found themselves on a plane across the country to meet with Dr. Abramson.
This trip from California to New York repeated itself for four years. IAC was showing promise. But after their insurance company refused to pay for Jasen’s last treatment, they were referred to a doctor at Stanford in California to complete his therapy. Unfortunately, this doctor was not well trained in IAC and infused too quickly causing Jasen to hemorrhage in the back of his eye. This hemorrhage created a lack of oxygen, causing his retina to almost completely detach. Jasen lost almost all of his sight. And after a year of stability, his cancer began to grow again. Jasen was seven years old. Enucleation was now his best chance for survival.
Since that day Jasen has been completely blind. He has also been completely cancer free. Wendy, the devoted and determined mother that she had been, was now equally determined to empower Jasen to live his best new life. She refused to hear that he “couldn’t”. She sent him to mainstream school. She allowed him to play baseball, indoor sky-dive and play piano. Jasen excelled in all that he tried. Wendy said “where his eyes could not guide him, his other senses took over”.
One day, when Jasen was 15 years old, Wendy was met with a challenge she did not expect. Jasen asked to play football. Her first thought was “absolutely not”, as football is a very physical and aggressive contact sport. She was worried about his safety. Jasen sensing his mother’s hesitation said, “Mom, you have always told me that I can do anything I set my mind to”. Wendy said she had no choice but to let him try. She told her son that if he could find a team that would let him play, she would 100% support him.
Jasen immediately started calling every football team in his home town of Modesto, California. Time and again the coach on the other end of the line would hesitate to let him try out when they heard he was blind. Frustrated but not deterred, Jasen decided not to lead with his disability. He called the next coach. He expressed his passion for football and his desire and determination to play. Impressed with his enthusiasm, this one coach finally told Jasen he could try out. He was thrilled, he thanked the coach and followed the conversation with, “and one other thing, I am blind”.
Jasen did try out for that team and Jasen did prove himself on the field. And now, Jasen is their starting quarterback! Jasen’s father talks to him via a small speaker in his helmet. He tells Jasen where to run and pass and throw. Amazingly it all just works!
Wendy has not lessened her drive to beat Retinoblastoma. She now has shifted her focus beyond Jasen to spread awareness and help other children who have not yet discovered their Glow. This reminds all of us at KTG of her wonderful friend, Pam Bergsma.
We are in awe of both Jasen and Wendy for their strength and determination. There are no limits to where this young man will go and we will be cheering him on every step of the way!
