We got an early start and took the subway from Center City to University City where CHOP is. Maybe our sense of adventure stems from being cheap, but whatever the case: we took the subway! It was fairly painless but there are not elevators at every stop so I don’t know how a single person would handle the stairs and turnstiles. About 4 blocks from Market Street is where CHOP is centered between the Pennsylvania Research centers and the University of PA Hospital. It’s a bustling area, with a good mix of law students and commuters; Lots of bikes and foot traffic. Cooper was in, and then out of the stroller about every other block, with lots of energy to burn and lots of new “friends” to meet and greet. Anxiously we got to our appointment almost an hour early. We loved Dr. Liu and the fellows that were working with him. He was so thorough and attentive and clearly an OPG expert. After looking at Coopers’ initial scans, he rated it about a 9/10 in severity and just thought it was a testament that Coop was walking around with a tumor like that sitting where it is. Waiting for the most recent scans to load up, we were getting nervous and emotional because one of the neuro-oncologists came down to weigh in on the images. The best news we’ve ever heard was of how pleased they all were with the response his tumor has had with treatment. Dr. Liu and Dr. Fisher described about a 20% overall improvement in the last 10 months. This is the first time we’ve been told that the tumor has “significantly improved” from the very first MRI and that its “response is amazing”. The pit in our stomachs quickly turned into a sigh of relief. We were happy with “no change” and “slightly improved”, but this news is breath taking. As far as his eyesight…there’s a study getting under way that’s involving the top 15 NF centers, and it will aim to standardize the early and maintenance treatment for OPG tumors. With this in mind, today really only established a baseline for his vision. His previous exams tested his visual acuity on a vague scale, so we don’t have a comparison. It may or may not have made a difference in where he is today, but the details could have given us a more detailed trend to base his progression against. His optic nerve is damaged from the tumor (not the chemo) and what has been damaged will not regenerate. His vision is 20/190 right now and, while it may slightly improve after chemo, it’s not likely. Dr. Liu said that the best that we could hope for would be to maintain what we have; which is hard because thats something that is completely out of our hands. Glasses aren’t an option, as the damage is behind the eyeball. Surgery (after chemo) can fix the drift of his eyes, but that will only be cosmetic and not functional. With this, there are many things that he will never be able to do. For that I will be sad at some point. For now though, we’re just exhausted from the day and still holding on to the emotional high of how great Cooper is responding to treatment. There is still so much to be thankful for, and we choose to cling to that. We will be back at CHOP to have more testing in 6 months and we hope there won’t be a downward trend to report. This trip was well worth the emotions and we have a clear idea of where we’re going. I wish the news about his eyes were better, but I’m happy with the direction the tumor is heading. We added a great adventure to Coops book these last two days. Now we’re all looking forward to getting home to the big kids and giving them their edible souvenirs! xxo
Posted on: Mon, 13 Oct 2014 23:14:23 +0000
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