Rollercoaster

We want to again thank all of our family + friends for all their support as we could not have gotten this far without each of you.  The outpouring of support, especially recently, has been completely overwhelming.  The generosity of our family, friends, parents of our friends and even friends of friends has been unbelievable.  We thank you all from the bottom of our hearts.  

Since Edward's discharge for neutropenic fever three weeks ago, we have been fortunate to have little news to report as the past 21 days have been filled with diaper changes, trips to the playground and walks around the neighborhood instead of IV poles, hospital food and antibiotics.  Life almost seems 'normal' (whatever that means) from time to time.

Except of course for last Friday.

Leukocoria, or white pupil, is the hallmark sign of retinoblastoma.  There are a few other causes of leukocoria that are not malignant, but new onset leukocoria is cause for serious concern and immediate evaluation.  Edward presented with the more subtle sign of strabismus as his initial symptom of retinoblastoma.  However, after taking some pictures of him shortly after his diagnosis, we actually saw the leukocoria in his left eye, which contains the much bigger tumor.  We had never noticed it the right eye as the tumor in that eye is much smaller. 

Except of course for last Friday.

Edward was playing with his new toy from Katie's mom - a bubble lawn mower of which he is very proud - when Katie took a photo with her phone to send to her mom.  As she reviewed her pictures, she called out to me, "Mike...."  Every spouse knows that tone.  It's not the "I'm mad at you" tone or the "I need you to kill this bug" tone or the "Goodness, you are annoying" tone, but the "I need you right now" tone.  I was working in our backyard, attending to our garden that was wilting in the 100 degree weather.

There was now leukocoria in both eyes - left and right. 

My initial reaction was disbelief (aka complete denial).  It must be the camera, or the angle, or the lighting or something.  Let me take the picture, I inanely remarked.  Same result.  Both eyes now eerily white.  We flew to our respective computers and started to review every photo we had, but could not find any evidence of the right eye looking white.  Needless to say, our 'normalcy' evaporated instantly and we were back in....well I am not sure what to call it....but it is a feeling with which we are getting a little too familiar.

I immediately called the on-call doctor at Wills Eye in Philadelphia to get their opinion.   The physician, who was very nice, offered that maybe it was the angle at which we were taking the photo (we had taken at least 30 pictures) or maybe we had never noticed it before (don't think we would have missed that).  Of course, these things always happen on Friday evenings, after every conceivable office is closed.  There was no need to go the emergency room or see anyone that night, but the doctor on call recommended that we see our local opthalmologist for an eye exam and if there was any question or concern, we could come up to Philadelphia a week early for an eye exam under anesthesia.

An interminable 72 hours later, Katie brought Edward to our local pediatric ophthalmologist, who we love, the following Monday.  He actually offered to Edward on Saturday, but the derecho that tore through the Mid-Atlantic rendered his office without any power.  I sat at my desk at work completely distracted.  Then the call came.

No change.

Huge relief.  

Our shoulders returned to their semi-relaxed state and our lives returned to 'normal.'  We were scheduled to see Dr. Shield's today as part of our monthly EUA.  Katie went up to stay with her parents on Friday in New Jersey as their house there is less than 1 hour from Wills Eye.  Edward got to spend some time on the beach (lathered up in 10000+ spf of course) and his PICC line meticulously dressed with saran wrap.    We brought him to the Jersey shore over Memorial Day weekend and he was less than thrilled with the sand.  Fast forward six weeks and he is a changed man - chasing seagulls, digging holes, throwing sand and loving life. 

But more importantly, he underwent another eye exam this morning with Dr. Shields.  Another nerve-wracking morning awaiting the results.  As it turns out, your prayers are working because we got another good report today.  There is no evidence of tumor progression or new seeding of the tumors.  The tumors have not shrunk too much in size but have started to calcify and turn into scar.  This scar unfortunately does lead to vision loss if it covers the macula (central vision) which it does in Edward's left eye.  We are hopeful that he will retain normal vision in his right eye and that he can have some vision in his left eye.

We are scheduled for chemotherapy at UVA tomorrow morning asssuming his neutrophils are above 750.  They were 880 two weeks ago, but then dropped to 660 last week.  We will see what they are tomorrow.  We can't wait to cross cycle 5 off the list.  We will let you know how it goes and put up some pictures of Edward's beach adventures on the next post.