What a Week - Part Two

Wednesday

We started late Wednesday morning at the Wills Eye Institute in downtown Philadelphia - a world renowned ophthalmic center, to meet Dr. Carol Shields, an expert in treating retinoblastoma (rb).  It was a five-hour appointment that included dilated eye exams for all three of us, an eye ultrasound for Edward, and lots of paperwork.  Rarely, parents of children with rb could have been affected by rb as a child themselves without knowing it.  For reasons that are still unknown, their body was able to contain the tumor, which led to spontaneous regression, leaving a characteristic scar. Thus, a dilated eye exam of each parent becomes important to determine if that scar of regressed rb is present. Fortunately, neither Katie nor I had an evidence of this.  Edward's dilated eye exam confirmed what we already knew - bilateral tumors, left greater than right.  I have to admit seeing him go through an eye exam is a little challenging as a parent.  They have to wrap him up in a blanket and then use little metal instruments to pry his eyelids open to complete the exam.  Of course, he fights every second of this and is a wailing, hot mess by the end.

The ophthalmogist staged his tumors during this exam.  The tumor in his right eye is relatively small - approximately 4 mm and is located away from the macula + optic disc, which is great news.  This means his central vision is thus far preserved in this eye and classifies the tumor in the right eye as a Group B tumor.  The tumor in his left eye is much bigger and completely covers the macula and partially obscures the optic disc.  Because of this, his central vision in his left eye will always be compromised to some degree.  Hopefully with treatment, we might be able to preserve and perhaps even restore partial vision to this eye.  The ophthalmologist also saw some evidence of subretinal seeding (small deposits of tumor below the retina) in the left eye.  This is not a huge problem, but it does 'upgrade' his staging in this eye to a Group C.

The grouping of the tumors is important prognostically.  The ophthalmologist is confident that with treatment we can preserve the vision in his right eye and he may even have 20/20 vision in that eye.  However, not all tumors respond to treatment as they should.  If his tumors do not respond favorably to chemotherapy and local therapy, enucleation of the eye is the likely next step.  As our oncologist told us, the goal is to save his life and that might mean having to lose an eye.  Fortunately, the odds of saving his right eye and the vision along with it is approximately 95%.  Since his left eye is a group C, the odds are lower, but still excellent: 90%.  Due to the rules of statistics, the odds of saving both eyes are even lower:  95% x 90% = 85.5% - but are overwhelmingly in our favor.

Admittedly, this has been a tough week and our days are marked with periods of sadness and anger at the situation.  But we are encouraged by the above percentages, and are even more uplifted by all the thoughts and prayers from all of our family and friends.  The outpouring of support when Edward was born almost 14 months ago was unbelievable and to have even more love and prayers for our little man and for us from all of you means the world to Katie and me.  We could not do it without each of you.  From the bottom of our hearts - Thank You!