R is for.....Retinoblastoma?

Yes.   We both read those 14 letters above correctly.  In a cruel twist of fate, Edward was diagnosed with bilateral retinoblastoma, a rare pediatric eye cancer, yesterday morning.  To be honest and as evidenced by our previous posts, things had actually been going fairly well for us.  Edward was growing and developing quite well - crawling, cruising, sitting, standing and almost walking.  He even had his first swimming lesson earlier this week.  Yesterday morning, we had a regularly scheduled visit with our ophthalmologist due to his retinopathy of prematurity (ROP) for which he had to have laser surgery.  All of his previous eye exams since the surgery had only brought good news.  But yesterday morning, the ophthalmologist, typically gregarious and affable, became strangely silent during his exam of Edward's eyes.  Katie initially chalked it up to the early morning appointment time.  But then he said he needed his partner to have a look and stepped out abruptly.  His partner (or more accurately, his father, who started the practice) examined Edward's eyes with the same reticence.  They asked for a moment to discuss things at which point, Katie was about to fall out of her chair with worry.  Our ophthalmogist returned in a couple minutes with tears in his eyes and the word no parent, brother, sister, son or daughter ever wants to hear: cancer.

Our world, which has been built up brick by pain-staking brick ever-so-slowly over the past 13 months, came crashing down all around us again.  We will provide further details in subsequent posts, but the basic gist is as follows:  Retinoblastoma is a malignant tumor of the retina, a thin layer of cells in the back of the eye that 'receives' what we see through our eye and collects/transmits this information to the brain via the optic nerve.  Due to a genetic mutation that can be inherited or spontaneous, the cells of the retina are allowed to proliferate abnormally leading to tumor growth.  There are various different forms and stages, but Edward unfortunately has bilateral disease (affecting both left and right eyes). 

Following that bombshell of a diagnosis, Katie and Edward were whisked away to the main hospital at UVA where I met them.  We were immediately added into the ocular oncologist's clinic and had an eye ultrasound revealing tumors in both eyes.  Getting a 1-year-old to cooperate with an eye ultrasound is quite a task, I might add.  Following the ultrasound, the ocular oncologist and his team set up an emergent 'exam under anesthesia' and a brain MRI to determine the extent of the tumor.  The exam under anesthesia (EUA) is essentially a full ophthalmologic exam with Edward sedated.  Similar to the ultrasound, eye exams in 1-year-olds are challenging at best.  With anesthesia, they are able to perform a comprehensive exam without difficulty.  Fortunately, the exam showed that the tumor in the right eye was quite small and far away from the optic disc and macula (the business portion of one's sight).  The left tumor on the other hand is somewhat large and does overly the optic disc (which can allow it to extend into the optic nerve and into the brain).   Following the EUA, Edward was maintained under anesthesia and brought to the MRI scanner to image his brain to identify any intracranial metastases.  Fortunately, there is no evidence of extension into the optic nerve or brain, which obviously is excellent news.  All of this was completed by late yesterday evening, at which time a couple of exhausted and delirious parents were able to hold their sweet (though a little cranky from the anesthesia) baby again like it was the first time they have ever held him.

Our road again is long and we cannot believe our luck (or lack thereof).  Regardless, Katie, Edward and I thank you in advance for your thoughts and prayers - which we now seem to need more than ever.  I was hopeful that we could relegate this blog to mundane updates of our growing child, but it seems that life had other plans.

The next step is to meet with our pediatric oncologist early next week and then likely start chemotherapy a few days after that.   Here we go.....