CT Scan and Exam for Staging

This is absolutely the most frustrating time of our lives. I can't even find the words to describe what we are feeling. 

We are waiting for Violet's next appointment which is on Wednesday, August 3rd. At this appointment she will be put under general anesthesia, have a CT scan and more thorough eye exam to determine definitively how the doctors will treat her cancer depending on their findings (staging). 

When we left the hospital last week they let us know someone from the scheduling department would be contacting us within 5 days to give us the date of this appointment. On the hospital paperwork it said that it could be 2-5 weeks before we would be seen. I called them the very next day. I was not about to wait 5 days to be contacted and I was not going to wait 5 weeks for our baby to receive treatment. They let me know that they are having to call other families and bump/rearrange other surgeries to get Violet in and that they had 3 people working on it.  They tried to reassure me that this was a normal wait period for this type of appointment. Obviously, I felt no comfort from this.

I called later again that day to see where they were and if they had gotten an opening. I also called twice the following day. They let me know they were still trying but they might have an opening on August 10th. I begged them to find something sooner. That night I spoke to them again and they let me know Violet was scheduled for August 18th! I let them know that this was unacceptable. There was no way I was going to wait a month to have Violet's treatment begin. By the time we got off the phone, they were going to meet with the doctor that night regarding Violet and call me the next day.

The following morning, feeling extremely overwhelmed I contacted the American Cancer Society.  They were able to put me in touch with a nurse specializing in the treatment of cancer. I let her know about my concerns regarding our baby's diagnosis and this horrible waiting period. I wanted to be certain my decisions were made with as much education as possible. 

Things I did already know and want to share with you here are:

Seattle Children's Hospital where Violet is being seen is in the top 8 in ranking of children's hospitals in the country and in ranking for specializing in the treatment of pediatric cancer.  

Dr. Weiss, who saw Violet this past week, gave her diagnosis and will be performing her next procedure is chief of the Division of Ophthalmology at Seattle Children’s Hospital and professor of ophthalmology at the University of Washington School of Medicine. He has been specializing in and working with children with Retinoblastoma for 20 years at Seattle Children's Hospital. He served on the editorial board of EyeNet, official journal of the American Academy of Ophthalmology, and he received an honor award in recognition of his contributions to the academy. He served as a medical consultant for ABC News, and he has been ad hoc reviewer for 15 journals. He is also an active member of COG and several other pediatrics and ophthalmology associations. He knows his stuff.

Dr.Pendergrass, who will be treating Violet, is director of medical education at Seattle Children’s Hospital and he is professor of pediatrics at the University of Washington School of Medicine, adjunct professor of epidemiology at the University of Washington School of Public Health, and associate in the Clinical Research Division at Fred Hutchinson Cancer Research Center. He is also vice chair for education in the Department of Pediatrics at the University of Washington. For Seattle Children’s Hospital, he serves on many committees including the Children’s Protection Program Quality Advisory Committee. Pendergrass is also member of the American Academy of Pediatrics Committee on Continuing Medical Education and Committee on Development. He has been treating Retinoblastoma here for over 30 years.  He also knows his stuff.

So, I do know that we are in great hands as far as where Violet will be receiving treatment and who will be providing that treatment. However, since many other parents feel the same, there is apparently an overload flocking to these centers that specialize in this area.

The nurse at the American Cancer Society informed me that a 2 week wait was average for this procedure no matter where we went. She let me know that it takes a special team to put an infant under anesthesia and run these tests. It also takes coordination of all of their schedules and then also the availabilities of the OR. Further, she informed me that if we were to take Violet elsewhere, there would be a wait to get in and we would have to start from the very beginning whereas here, we have already started the process.

I also called the National Cancer Institute and they let me know that a second opinion could waste precious time.

When I called Seattle Children's Hospital back after scheduling had met with the doctor, they had bumped up Violet's testing to an earlier date of August 3rd. I firmly believe that through prayer and persistence this was accomplished. 

Please keep this sweet little girl in your prayers.