About 2 weeks ago, after hearing Edward cry out, Katie got up around 3am to give Edward his nighttime bottle.  In general, we try to alternate this duty, though I have to admit, Katie has certainly done more of these nighttime feedings than me.  After changing his diaper, Katie brought him downstairs to the kitchen to warm the bottle. 

Drip. Drip. Drip.

Unfortunately, that dripping was not from the bottle, but from the upstairs bathroom sink, ever so kindly depositing water into our dining room!  Luckily, the dripping was far from a deluge, but as anyone who has had a leak knows, it does not take much water to wreak havoc.  The leak traversed about 10-15 of drywall before showing itself, so they had to cut out almost 100 square feet of ceiling to fix the problem.    We have never been happier to be renting!

But much more importantly, Katie and Edward headed up to Philadelphia this past weekend to start the fourth cycle.  We had another CBC last week to check on his blood counts.  His neutrophils had increased substantially to 710, but was still below the required 750 to receive chemotherapy.  However, similar to the last cycle, our oncologists felt that it was a significant enough recovery to head to Philadelphia in a few days for his eye exam under anesthesia (EUA), followed by chemotherapy back in Charlottesville.

Each EUA is a little nerve-wracking.  As we have previously mentioned, Wills Eye is a worldwide center of expertise in treating retinoblastoma.  Because of this, many children are treated here and many have complex, advanced retinoblastoma as the more difficult cases are referred to Dr. Shields from around the country and the world.  Due to the advanced staging of the tumors for many of her patients, these eye exams do not always reveal good news.  Katie and her mom, who accompanies her to every EUA, have gotten to know a few of these families in the waiting room of the surgical suite.  Even though each family does not share all of the details with each other, it is clear when after an EUA, some families have received good news while others have received bad news. 

Katie and I always worry that one day, we will be one of the families who receives bad news.  Edward's chances of survival are excellent, but he has a very real chance of losing one of his eyes due to the need for enucleation and his chances of having 20/20 vision in both eyes even with the best possible outcome is zero.  The vision is his left eye is permanently compromised, but there is still a chance his right eye could have 'normal vision.'

After Edward's procedure, Katie and her mom are brought back to a post-procedure family meeting room for a 'debriefing' of the exam, the tumors and the therapies applied by Dr. Shields and her team.  I was able to join via speaker phone.  Good news!!  Both tumors have gotten smaller, though not dramatically so.  There was no evidence of tumor spread or extension.  Also, a little bit of the macula (the business portion of vision) on the left was exposed by the tumor regression.  This means that he might have some vision in his left eye aside from some fuzzy peripheral vision.  His right eye still has a chance of having essentially normal vision.  Overall, great news. 

Katie and her mom then put the pedal to the medal and furiously drove down I-95, then US-29 to make it back to Charlottesville to receive chemo here at UVA (and so Katie could attend my graduation from residency that evening).  Edward got the first half of cycle 4 on Wednesday and then completed the second half today after a night of observation in the hospital.  All of the infusions went very well and Edward did not hold his breath!  We are now safely back at home and are on to cycle 5 in a month!

We want to again take the opportunity to thank all of you for continuing to support us in so many ways.  The generosity of our family, friends and even complete strangers has been completely overwhelming (in a good way) and uplifting.  Katie and I hope that one day, our own lives will settle down a little bit and we can return some of this goodwill and kindness.  But for now, we remain grateful for all of your thoughts, prayers and support.