Case Study – Retinoblastoma

Jimmy Smith

DOB: 10-31-90

Etiology: Bilateral Retinoblastoma

Narrative:

Jimmy Smith was born into a family of 4 children with a mother and father. When Jimmy was 16 months old, his mother noticed that his eyes glowed in the dark – which really surprised her, as none of the other children demonstrated this phenomenon. Jimmy fell down and the tumor ruptured in his right eye, which caused his eye, in his mother’s words to turn dark and scary. The Smith’s immediately took Jimmy in to the Pediatric Ophthalmologist who informed them that Jimmy had a Retinoblastoma in his right eye, which was ruptured. The doctor recommended enucleating the eye, as he wanted to save the left eye. Jimmy was fitted with a prosthetic eye, one month following the enucleation. In addition, he was fitted for special safety and refractive lenses for his left eye. As the family could not afford the lenses, the local Lions club assisted with the costs. Following tests, it was determined that Jimmy had multiple tumors in his right eye as well. The family’s youngest daughter, Annie also had cancer. Due to this the family was connected with an oncologist. The oncologist set Jimmy up for external radiation treatment. A bronchial line was established from his chest to his heart. Jimmy received radiation treatment for 8-weeks. Due to his age, Jimmy was anesthetized to ensure that he was absolutely still during treatment.

2-weeks following the radiation treatment, it was determined that Jimmy had one large remaining tumor that the radiation would not subdue. The family checked on various experimental procedures and found a promising treatment in California utilizing laser therapy. As it was experimental at the time, the center chose participants on set criteria. Jimmy was turned down. The family continued to pursue other avenues of treatment. An Oncology Center was located in Philadelphia Pennsylvania that was experimenting with a new form of cryotherapy. Jimmy was accepted for treatment. The center requested that they plan at least two trips to ensure the success of the procedure. The family could not afford the expense for this. As such, the community came to the families aid; one of the local Ford dealerships provided a rental car in Philadelphia, a local Biker organization donated funds along with other community businesses. The monies supported the Mother and Jimmy while in Philadelphia and the Wyoming Department of Education/ Services for the Visually Impaired, WDE/SVI, provided the costs for transportation for both trips through a private grant. The procedure was initially successful; the tumor did initially reduce in size and stabilized.

Following the diagnosis the following services were initiated by the Wyoming Department of Education, Services for the Visually Impaired Consultant: technical Assistance was given to both the family and the Child Developmental Center on what to expect and strategies to implant with Jimmy on learning concepts with his reduced acuity, binocularity and visual field. The consultant stressed that Jimmy be exposed to as much of the community and the local environment as possible to ensure a first hand approach to conceptual development should he begin to loose additional vision. The CDC physical therapist provided the majority of Jimmy’s direct service and was diligent in exposing Jimmy to the community, in order to introduce him to as many different situations and concepts to instill in his visual memory. They made field trips every day, from petting zoos to police stations. Jimmy became a local celebrity and was made welcome everywhere that they went. The consultant also had the PT working on shape recognition, letter recognition colors, pre-Braille and listening activities. Jimmy became an avid reader of books on tape and could tell the consultant when she came in every story that he listened too. The consultant also had the PT work on computer skills with Jimmy, an activity that he loved.

During this time, Annie, the second youngest daughter, came out of remission and began a new round of chemotherapy. This was not successful and the family lost Annie shortly after this. Following Annie’s death, Jimmy also came out of remission and his tumor began to grow. When Jimmy turned 4 ½ years old, his left eye was enucleated. 1.5 months following the enucleation of his left eye, Jimmy carried on extensive discussions with his consultant on what color eyes he should have the oculists make for him. Jimmy’s favorite color was purple – but the oculists would not go that direction and they settled on dark blue.

When Jimmy transitioned into public school the district did not have a TVI. The family fought many battles with the district until they settled on hiring a special education teacher, whom contracted to earn her Master’s in TVI through distance education at the University of Utah. The teacher followed through with this and became certified in TVI when Jimmy entered the 6th grade. Jimmy also receives services with a contract COMS and technical assistance by theConsultant for the visually impaired.

To date, Jimmy uses a laptop with screen reader for class work, has a working knowledge of Braille uses both the Perkins Brailler and the Navigator System and can travel independently. Jimmy is taking Tie Kwando and square dancing lessons. He is looking forward to his first dance. Jimmy also received a laptop computer with internet access through a WDE/SVI private grant and he accesses the internet to check on military planes, one of his loves (Jimmy received a “Make a Wish” and went up in a F14 for a ride), plays games with other internet users and checks on his favorite on-line stores such as Cabalas.

The family has always had a cautious approach to the new experiences that they allow him. However, if Jimmy is interested in something, then he is given permission to try it out. Jimmy shoots with his father, boats with the family, rides his bike and skateboards with his best buddy. His family is not too thrilled about the skateboarding.

The mother reported that the community has been very supportive of the family as they were going through the various treatments for both children, assisting with donations and moral support. However, those who do not know Jimmy personally have had various reactions to him. The prevalent themes seem to include the notion that as a blind child he must be mentally retarded as well. Questions are asked of those with him, and not to him directly. The mother is always amazed at this reaction. Jimmy tries to pass as sighted and does not rely on his cane unless he is not with a family member or friend. As such, the next reaction is that Jimmy cannot possibly be blind as he is too smart and is too independent. Jimmy takes all of this in stride and does not let anything faze him. He is very well adjusted and rolls with the punches. The family still has some troubles in knowing how to react to the community during these encounters.

At this time, the oncologist and ophthalmologist are following Jimmy yearly in Salt Lake. As both doctors are working in the same medical center, they have Jimmy come in once every six-months. In this way he is followed twice yearly.

Services Provided:

  • Technical assistance and direct services from the Consultant for the Blind – WDE
  • TVI – through the school district
  • O&M – provided on contract 4 days a month direct and available as needed for consultation