Sorry we were unable to update while in New York. Some reason our phones were not able to post
updates on Caringbridge. This is what we
found out...scans were clear!
Had a very enjoyable trip.
Weather was perfect. Spencer got
to see his hot spots, M&M store, Hershey store, FAO, hailed taxis. Hotel was awesome. Had views of the city from 3 sides of the
room on the 34th floor. We walked a
lot. All over the city, left a few
things to do for our next trip. One of
the tourist highlights was The Beast. A
50 mph jet boat that holds 60 people.
Zipped off to the Statue is Liberty for a photo moment. Then jammed back to dock with a few spinouts
along the way. It was really cool to
experience. Met up with some of our NYC
friends at out favorite restaurant, Beach Cafe.
Cody, Dave and Elizabeth were all doing great. Dave arranged for a private tour on the USS
Intrepid for our next trip. Then Monday
was off to the Sloan Kettering.
Concluded a long day at MSKCC with great news. Monday, two of the bone scan machines were
down, hence the massive delay in our appointments. Scheduled to see Dr. Wexler at 9:30 am. Able to see him 1:00 on the following
day. As it worked out, while waiting for
the MRI, Dr. Wexler found us to let us know the CT Scan was clear from that
morning. When we were able to see him
Tuesday, approaching his office with the door open. He looked at us and informed us scans were
all good before we were even in the door.
It was a short visit, discussed protocol of scan schedules and when we
would be seeing him again. As he
mentioned, it was also up to Dr. Abrahamson, Spencer's ocular surgeon. We were then off to see Dr. A,
downstairs. Spencer was very
apprehensive, fearing they would be poking and prodding in his orbit. We tried to reassure him the best we could,
as we really didn't know what they were going to do, but knew they would not
hurt him. Vision checked, again 20/15. "Superhuman" vision with a
smile. Patch off and the Fellow only
looked in the orbit, fantastic.
We adore Dr. Abrahamson, a very calming voice and
demeanor. He is fantastic with Spencer
and April, LOL. Seriously, was able to
calm Spencer down, informing him of what he was going to do. Only look.
Fantastic. He said it doesn't
look good. It looks great! Spencer's orbit will heal on its own
schedule. Obviously more air it gets the
quicker the healing will be. But nothing
to worry about...April:)
We discussed the lack of an eyebrow, most likely caused by
the Proton radiation. Not from the brachy
(sp) radiation. Discussed asymmetrical
bone growth. He didn't think that will
be an issue, as most of the facial growth has occurred. Spencer still has numbness in his
forehead. Interesting enough, that nerve
was removed during the surgery; however, somehow a new nerve will regenerate in
that area so feeling will come back.
Still baffles the Dr's as nerves are not supposed to do that.
Then we discussed our prosthetic options and timeline. Looks about a year away, at least. They would like to see us again in 6
months. Still lots of healing needs to
happen. Our current prosthetic option
doesn't move or blink, but is "picture perfect" replication of his
other eye. MSKCC is working on a false
eye that moves and blinks, still no vision, but will be ready for human testing
in about 12 more months, depending on the FDA.
The advances are outstanding, who knows, sight might be real
in the future.
Dr. Mike who pretty much took care of us post-surgery always
inquires to Dr. A about Spencer.
Interesting, as we asked how he is doing. Moved on from Fellow to Resident across the
street at NY Hospital. He was at Sloan
the same day we were; Dr. A said he is going to be so disappointed he missed us
that he might have a heart attack.
Kidding, but nice to know. Even
the Dr’s, who have seen it all, have not seen it all. Dr. Abrahamson said there is no history,
ever, of a localized, Ewing’s reoccurrence without Mets, in the orbit. One of one.
Finally a few notes and thoughts from our visit. Both April and I were shocked visiting the
pediatric day hospital on the 9th floor.
There waiting to see our Oncologist for hours. We have been out of the chemotherapy game for
10-11 months now. What was our norm, it
is not normal. Heart breaking to see so
many sick children. Some worst off than
others. Unable to walk and play,
confined to wheelchairs or the need to only lie down. Bloody noses that need medical attention as
their platelets are alarming low. It was
a real eye opener, and with our foundation on my mind, a blessing in a strange
way. Seeing the stressed parents,
disshelved and sleep deprived. I know
and understand where they are and how they feel. Mostly, looking forward to being able to
assist them when possible. I can't take
any the worry about their children. But
can take away the worry about getting to see the best Dr's in our country.
After our visits. I
had the strangest feeling that I have not experienced in the three and a half
years we’ve been dealing with cancer. A
real sense of closure. Closure that we
are really, really done with relapses, chemotherapy, and daily visits to the
hospital. We discussed moving our scans
to every 4 months, instead of 3. Dr. Abrahamson
again, reiterated he thinks we are good!
I have never had that feeling of closure before, and what a great
feeling it is!
Seems like I wrote a bit more than normal, when you are on a
plane for 5 hours. You can write your
thoughts, even as a draft on my phone.
Thanks for reading.
Sent from my Verizon Wireless 4GLTE smartphone
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