Next Steps

As Katie described in our last post a couple weeks ago, Edward has finished his six cycles of chemotherapy!  Since that last infusion 4 weeks ago, we have been monitoring Edward's blood counts as always.  Fortunately about two weeks ago, his counts seemed to have recovered nicely and we seemed to be out of the most susceptible period of immunosuppression.  In fact, his numbers looked so good 10 days ago, we actually didn't have to check his labs last week, marking the first time in over 6 months we went a whole week without a doctor's appointment!

Edward still requires regular eye exams with our ophthalmologist over next four years as there is a 20% chance that he will experience some degree of tumor recurrence.  Most of the time, these recurrences can be treated intraocularly with laser therapy, cryotherapy, thermotherapy, etc.   If that does not work, he may have to undergo implantation of a small irradiated plaque in his eye to help control tumor growth in addition to the local therapy.  If that does not work, we will have to consider the possibility of enucleation (taking his eye/eyes out).  A chilling thought after all that we have been through.  His chance of losing his right eye is only ~5% and the chance of his losing his left eye is a little higher at ~10%.  These numbers are low, but represent a very real possibility that we unfortunately keep in the back of our minds and in the bottom of our hearts.

Part of his surveillance also includes MRIs of his eyes and brain every 6 months.  He actually underwent his second MRI today under conscious sedation.  They did not have to intubate him and place him under general anesthesia which is always preferable.  He tolerated the scan well and we should have the final results on Thursday.  We are hopeful that this scan does not show any progression within in his eyes, but more importantly that it does not show any evidence of tumor spread to the brain.  Fortunately, the chances of this are much lower than enucleation (likely on the order of <1%, though I do not know the exact number).

On Thursday, we should also get one more lab draw.  Assuming his counts still seem to have recovered, this will likely be the last lab draw for quite a while.  This translates into possibly pulling the PICC line on Thursday!!  Though the PICC line has provided invaluable access to Edward's veins over the past 5 months, allowing us to give him the chemo + fluids and draw blood without a single needle stick, it has also been an incredible challenge to keep a rambunctious toddler from pulling his line out, dipping it our dog's water bowl or jumping in the mud with it.  Way back when our life had some semblance of normalcy, Edward actually took his first swimming lesson.  The next week, he was diagnosed with retinoblastoma.  Since then, he obviously did not get to jump in any wading pools or the ocean or take a bath that was longer than 3 minutes.  Suffice it to say, we cannot wait to wave good-bye to the PICC line.   We will let you know how Thursday goes!