Jacksen’s Glow Story

Diagnosis: Retinoblastoma 

Amanda and her husband Jack welcomed their son into the world on in September of 2017.  Jacksen was a perfectly healthy little boy and Amanda and Jack were happy to start their new family life together in their home of Kauai, Hawaii.  Looking back, Amanda says that for the first six months of Jacksen’s life, he became increasingly fussy. He was always squirming and irritable. Since this was her first child, Amanda did not think much of his behavior.  She just assumed that his irritability was normal. However, during Jacksen’s sixth month pediatric visit, she was given the news that would lead them to an explanation for Jacksen’s behavior.

Jacksen’s pediatrician, Dr. Jesse Lam, examined his eyes.  The doctor noticed Jacksen had an abnormal red eye reflex at this visit.  Concerned, Dr. Lam referred them to see Dr. Layne Hashimoto, an ophthalmologist at the Eye Care Center of Kauai.  The appointment was scheduled to happen in two months. Over the next few days Amanda started to have a feeling that there was more going on with Jacksen.  She began to watch him very carefully and noticed that he was reacting to visual stimulus in his right hemisphere but not as much with the left. Her “mother’s intuition” told her that Jacksen needed to be seen more urgently and called to move up his appointment with Dr. Hashimoto.

Amanda says that from the moment this appointment took place, their lives moved very quickly and were changed forever.  Dr. Hashimoto discovered a very large mass behind Jacksen’s left eye. He believed it to be Retinoblastoma. Retinoblastoma is a cancer of the eye.  It is fairly rare, representing about 2% of the cancers diagnosed in children before the age of 15. Both Dr. Hashimoto and his colleague Dr. Shein advised that Amanda take Jacksen to Children’s Hospital Los Angeles (CHLA) for confirmation of the Retinoblastoma diagnosis and for treatment of this cancer.

The very next day the family traveled to CHLA where Jacksen had an exam under anesthesia by Dr. Jonathan Kim.  The exam confirmed the RB diagnosis. The family was given the choice of removing the tumor and treating Jacksen with chemotherapy or to remove (enucleate) the eye.  Amanda says that the choice for them was straight forward. Jacksen had no vision in his left eye. She wanted the cancer out immediately. The very next day, just three days after his appointment in Kauai with Dr. Hashimoto, Jacksen’s eye was enucleated.  Jacksen and Amanda stayed in Los Angeles for a month while he was fitted for his prosthetic eye. Amanda says that it was a lengthy and difficult process but that his prosthetic is an amazing match.

Amanda and her husband Jack have not once second guessed the decision to enucleate.  Tests showed that all of the cancer cells were removed with the enucleation. Jacksen is now cancer free and does not need any further treatment.  Furthermore, Jacksen’s parents say that ever since his surgery, he has been “energetic, happy and full of life.” His demeanor has completely changed.  They were further relieved to discover when his genetic tests came back that Jacksen does not have a hereditary form of Retinoblastoma.

Amanda learned that a Glow could be present in the flash photos of children with Retinoblastoma.  This Glow is called leukocoria and occurs when the light bounces off the tumor in the back of the child’s eye.  Amanda says that she was surprised to find that Jacksen did exhibit the glow in several photos and videos before they were aware of his condition.  Amanda wishes that she was aware of this silent indicator of the cancer growing within. She simply had never heard of the Glow and therefore never realized it was in his photos.  She hopes that by sharing her story she can help others to be aware of the Glow and will be able to lead their children to the care they need more quickly.

Now back in Kauai, Jacksen loves to play in the ocean, climb trees and run on the beach.  He has an eye exam every six months to make sure all is well. His exams have all been great and his prosthetic eye looks amazing and does not present a problem for them.  Jackson’s ocularist, Stephen Haddad, has advised that he will need to be replaced this prosthetic every few years as he grows.