A lot has happened this week. Earlier in the week we got confirmation that Jonathan is going to take part in the study and that the earliest the study may re-open is the 24th July. This is great news and in anticipation of him starting the Fenretinide study, we have begun his preliminary testing. The big issue concerning me about starting this study is that one of the side effects of this drug causes night vision loss. Initially, when I heard this, I didn't have a good handle of what this meant. When Jonathan had his autologous peripheral blood stem cell transplant, I accepted the fact that he'll have permanent hearing loss, but for some reason, having vision loss is something I was not swallowing very well. I've always said that if I had to loss any of my senses, let it be anything but my vision.
The first set of testing to be done was to get a baseline of his eye sight. Last week Wednesday I got an email from my oncologist to setup an appointment to see an Opthalmologist. Setting up the appointment was an interesting experience. Apparently the number I got from my oncologist was a doctor's line, so half way into the conversation I was asked to hang up the call and call the 'regular' line :) Then, when we reached the part to setup the appointments, the person at the Opthalmologist office was going to take a look at his schedule and give me a date but I stopped her and said that according to my email the appointment was suppose to be this Friday
Let me pause here for a sec.
For those of you familiar with dealing the medical staff, especially the front end people, they always live to feel like they are in control. Wait, that's an unfair assessment, but we've met so many different types of people that my tolerance is quite low. I'm a no nonsense kind of guy now. I don't expect you to like me, but I expect you to do your job. Maybe I'm more cynical now and less friendly, but you know what, in the normal world of medicine, it's like pulling teeth to get any where, so it's my turn to pull teeth. I truly understood, during my conversation with the person at the Opthalmologist's office that she was 'not in control' because my son was coming in as a new patient and she didn't have any background on his issue, but I was not going to let her give me any crap. The last thing I was told was that both parents had to come, to help hold Jonathan down. One parent was to hold his body, while the other was to hold his head. Little did I know how important that request would be, but little or no explanation was given either so I said that Gabby would be the only parent present.
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