My thighs and bottom have taken on the appearance of a bag of frozen peas thanks to my lack of exercise (and general aging process) in the months since Ben’s relapse of neuroblastoma. But if walking the streets of Manhattan doesn’t lead to my having “Buns of Steel”, then there’s no hope for me, because I have been walking my butt off over the last few days! Well, not quite. 😉 But I sure hope I’m making a bit of progress. Swimsuit weather is coming up and I don’t want my “frozen pea” thighs scaring all the children.
Ben and I arrived in Manhattan on Tuesday evening after a near-miss on our flight out of Denver. We were using buddy passes (thanks for the passes, Janet!), which requires us to fly “stand-by”. When we checked in at the airport Tuesday morning, we were told that getting a seat on that flight “didn’t look good”. This was a bit more excitement than I was hoping for. Thankfully, we got on (who can resist my little bald-headed Ben?) and we made it to LaGuardia without further incident.
We checked into “The Ronald” and then jumped back in a cab to the Grand Hyatt to meet the Fraziers. They were in town for a convention and leaving early the following morning. We went out to dinner with them and then checked out Grand Central Station, which is an amazingly beautiful building! While we were inside the station, an employee came over and used his ticket puncher to make a paper alligator out of tickets just for Ben! Although our time with Aunt Patty and Unkie was extremely short, it was still a wonderful welcome to Manhattan. Miss you guys!
The next morning we headed over to MSKCC to meet with Ben’s surgical team. We arrived on time (7:30 AM Eastern Standard Time, which was 5:30 AM Mountain Standard Time Â – waaaay too early for me!) They accessed Ben’s port (he cried because they didn’t numb it), drew blood, and called us back 30 minutes later to tell us that Ben’s counts were too low to do surgery. Wha-wha-what? Remember, I was hearing this shocking news in MY time-zone. My brain was struggling to process and my mouth couldn’t come up with anything intelligent to say so I just sat there babbling “but… but… but….” The nurse told me that we’d have to wait and see what the expert (Dr. LaQuaglia) thought, but he was still in the OR operating on another kiddo. So we went out to the waiting room to wait for Dr. LaQuaglia. And wait. And wait some more. And wait some more. Ben and I fell asleep sitting in the lobby.
Nearly FOUR HOURS later, we finally met Dr. LaQuaglia. He was very good with Benjamin and very straight-forward with me. While I got the low-down on the “non-fun stuff”, i.e., chest tube, Foley catheter, possible PICU, epidurals, incisions, etc., Ben got to see photos from his most recent scans. Dr. LaQuaglia Â pointed out interesting landmarks like Ben’s spleen and even used big, technical medical terms in a sentence. Â “Look at this white part, Ben. These are your guts.” Ben was semi-impressed. Dr. LaQuaglia printed out the photo of Ben’s chest cavity as a take-home party favor. Yay.
So, Dr. LaQuaglia said that Ben would have to go back on GCSF shots (to stimulate white cell growth) in hopes of getting him ready for Monday’s surgery. Great. His nurse told us to head downstairs to the pharmacy and pick up our five-day supply of medication and syringes. I did as I was told. We had to wait another 45 minutes only to find out that we were denied coverage. I asked why and the unpleasant pharmacy person told me that I didn’t have coverage at their facility. I argued that “YES, WE DO, WE’RE PRE-APPROVED FOR ALL SERVICES HERE IN NYC ‘CUZ OUR INSURANCE AND DRUG COMPANY SAID SO.” And then I called Matt to help in starting the process of calling Medco. The unpleasant pharmacy person didn’t offer any direction as to what else I should do or who I should call… she was just evil. She told me that I could certainly pay $5,000 and walk out with the medication Ben needed to start immediately, or I could mail-order it and get it sometime the following week, which clearly wasn’t an option. She didn’t care about the situation. She had absolutely no sympathy. I asked her to PLEASE help me out and, with a heavy sigh, she said that she could do it just this once but I had to understand that she was doing me a great big favor and that she wouldn’t be able to help me again. Seriously? Thanks. A lot.
As I made the decision to NOT genuflect to the mystical granter of GCSF medication, I snatched the brown baggie of drugs out of her hand and gave her my meanest stink-eye, which is neither very mean or stinky. But it’s about as mad as I could get. We trotted back to “The Ronald” and I gave Ben his shot.
I was so discouraged by the events of our day that I called Ticketmaster and got the most awesomest seats I could get to “Wicked“. Ben and I headed down to The Gershwin Theater (stopping by the Nintendo store first) and then went to our very first show on Broadway. Oh, My, Stars. It was PHENOMENAL! We were so close to the stage and the show was simply amazing! We laughed. We cried. We LOVED it! I wanna see it over and over, but will probably never get seats as incredible as we had ever again! It more than made up for the earlier hospital/pharmacy experience. It was truly one of the best experiences of my life.
Thursday, we slept in and then I borrowed a wheelchair to take Ben for a walk. I wanted to explore a bit and knew that Ben would get tired, so I packed him up in the chair and off we went. We scooted over to Central Park (about 1.6 miles away) and walked around the lower part of the park. Beautiful! Then we went to the Central Park Zoo. I got pooped on by a bird in the rain forest exhibit (which I hear is good luck?) and we watched the sea lions do tricks for their dinner. I got splashed by an overzealous sea lion, which I’m hoping washed off most of the bird poop.
Friday, we went back to the hospital to re-check counts. While his counts are still on the low side, they are planning to proceed with surgery on Monday. I am continuing his shots over the weekend. He might need platelet transfusions during surgery, but that’s not uncommon for Ben anyway. So, we check in to MSKCC on Monday at 10 AM with surgery scheduled for 1 PM. I will be blogging to keep myself busy, so be sure to look out for updates.
After leaving the hospital, we hopped a cab to Battery Park (YIKES! Super expensive!). We took the ferry over to see Lady Liberty and Ellis Island. While we technically didn’t have tickets that offered access to the monument, I asked the guard if he would allow us access anyway. He took one look at Ben and said “You can go anywhere you want. You are my personal guests.” He gave us passes and off we went.
The grounds surrounding the statue are lovely, and you can get some fantastic photos from the “grounds only” pass, but having access to the monument is uber-cool! We both really enjoyed the museum and then we walked the steps to the top of the pedestal. Oh, okay, I carried Ben on my back most of the way because it was a very long climb and he was worn out. One of the guards encouraged me to take a break about 1/2 way up but I knew if I stopped then I would never make it the rest of the way. Oh, I should state that the elevator was out of order. I am normally not a glutton for such horrific punishment.Â We walked around the top of her pedestal, look up her skirt (it was really neat to see the internal structure of the statue through the glass ceiling), and see some amazing views of Manhattan. Awesome!
We also took the ferry to Ellis Island, and while it was interesting enough, we weren’t too terribly excited since our ancestors have most likely been in America for eons.
Then, we took the subway (!) to Times Square and walked in circles for about an hour. I was slightly confused and kept getting turned around. I tried (but failed) to sound convincing as Ben kept asking “Mom, are you SURE you know where you’re going?” after we passed Radio City Music Hall for the 20th time. On the plus side, I saw a tranny in a spandex shop trolling for sequined material on 38th. Ben did not see “her” so it was a moment solely for me. I’ll never forget it. At least until I see my next tranny.
We spent some more time at Nintendo World, made a quick (but not quick enough for Ben) stop at the American Girl store for Madeline (I MISS MY MADZILLA!) and took a cab back to RMH to chill out for the rest of the night.
Today, we took the subway to the Brooklyn Bridge. I took Â Ben in the wheelchair because I knew it would be another long day of walking. Â Let me tell you, the subway system is NOT friendly to the disabled tourist. Anyway, we walked across the Brooklyn Bridge and snapped a few touristy pictures. Then we went to the Financial District and checked out the WTC Memorial work in progress. There’s not much to see yet, but it was still a very somber experience. Ben was just a wee little man when 9/11 happened. We sat looking at the construction as I explained to him that I held him in my arms as I watched on TV while the second building got hit and then collapsed. How surreal it was to watch. How the events unfolded as we learned that it wasn’t just an accident, that terrorists were responsible for the attack. I’m sure seeing Ground Zero shortly after 9/11 was much more emotional than what I saw today, but I’m certainly glad we made the visit.
Then we took a short buzz around Chinatown. Ben was really disappointed. I was, too, because the whole place smelled like dead fish and cigarettes. GROSS! I’m glad for the experience, but I doubt I’ll make any effort to go back. On the plus side, I think Ben’s burning desire to go to China has been quelled for the short term.
We took the subway back to the closest handicapped accessible subway station (51st Street) and hoofed it back to RMH (73rd Street). I can feel those frozen peas melting off my backside. I just hope it’s visible and not just a sensation I’m having.
So, tomorrow, we go to MoMA for the Tim Burton exhibit. I’m looking forward to it but sincerely wish Madeline was here to see it, too. She is a BIG fan of Tim Burton. She loves his creepy stuff (just like her momma does). Hopefully we can get her out here before the exhibit ends in late April.
And then, Monday, we start the next phase of the cancer-ending crusade. I’m glad we’ve had so much time to have a BLAST in NYC because the next few weeks are gonna be tough.
Pray for my Bean, please. Send him all the love you can. I need your help to get him through this next part of the journey – I can’t do it without your love, prayers and support. ❤