Quote of the day (Thanks Julie R.): "If it doesn't break you it makes you stronger!" The Brown/Sardi family can"lift" mountains!
We had another slow start to the day today. Mattie spent the morning building with legos and he is really enjoying having this special time with Peter. I feel myself trying to step aside so they can have this time together, but of course never venturing too far. While I was preparing breakfast for all of us this morning my cell phone rang. I did not recognize the number, so I did not answer the phone. But then the person called back again. At which point I answered the phone. Who was it? It was Ava, Mr. Meyers' nurse practitioner coordinating the study. You may recall that I tried to talk with Ava on monday about some of the specifics of the study, and I was unable to. In addition, you probably remember that I also had a long talk with a patient advocate on monday. Clearly Ms. Banks, our advocate, was hard at work today. Ava was responding to the complaint I presented to Ms. Banks. First when Ava called, I really did not want to give her the time of day, and I think she sensed that. But she kept on talking and as she was talking I realized she was very sorry and apologetic for all of monday's mishaps. She did feel that I made the right decision to remove Mattie from the blooding testing portion of the study. After all, if I did not do this, Mattie would have been in the hospital until 11pm on monday, having his blood monitored every hour from 5pm onward. I explained to Ava my concern about the whole informed consent process and she did reveal that normally parents are given this form ahead of time to read. I told her that we weren't and in addition, since we were going from out of town there should have been better coordination and information shared with us. She agreed and promised me that this would be looked into and dealt with so such a thing does not happen again. I guess if I have spared another family from going through this, then to some extent this wasn't pointless. But I am a realist, and I also understand how systems work, and how hard they are to change. Especially a big system like Sloan. I appreciated Ava's call today, and her professionalism, and I told her so. She said she could relate to my concerns as a nurse and a mom!
Once we got packed up today, we caught a taxi and headed to the Empire State Building. On an aside, did you know that NYC taxis have TV in them? With their own Taxi network TV station! I was stunned! Seems to me there is no where in our environment where we can be silent and at peace. Any case, Mattie wanted to go to the top of the Empire State building and see the city sights. I was a little worried about crowds and lines, but clearly Janaury is the time to see NYC. There are few tourists and NO lines. We did not have to wait at all to tour the beautiful building. We purchased tickets to take us to the 86th floor and the 102nd floor. Mattie enjoyed the 1.5 minute elevator ride to the 80th floor. He noticed when you go up quickly in an elevator your ears get clogged. He was a riot to listen to in the elevator and everyone got a kick out of his sense of humor. Once we arrived on the 80th floor, we took a second elevator to the 86th floor. The 86th floor has an indoor and outdoor observation area. It was thoroughly freezing outside when we went out to observe the city, and Mattie did not want to stay out there long, but he did enjoy the views from the 102nd floor. This floor's observation area was enclosed and we took some wonderful pictures from up there. I have posted some so you could see what we saw today.
The blue ball that is glowing in this picture is the New Year's Eve ball in Times Square. The ball changes colors. We saw green, blue, and red today.
Peter and Mattie on the 102nd floor of the Empire State Building!
No trip is complete for Mattie without stopping at the gift store. So I snapped a picture of Mattie and Peter before they entered the store. Mattie found an erector set of the Empire State Building. This is his first erector set, which if you have never tried to build with this type of set, it is a challenge. It involves metal pieces, nuts, and bolts. But Mattie was determined today and you should have seen his hands in motion trying to figure this out!
The visit to the Empire State Building was just delightful. I have visited this building several years ago with Peter and Karen. It was a summer day back then and hundreds of people were on line, and it took us hours to get to a elevator to reach the top of the building. Today was so simple and the staff were so helpful to us as they navigated us around and guided us to the best places for Mattie to see certain sites. After our visit though, Mattie was tired, and he wanted to go back to the hotel. He made it about two hours today touring around and then had had it. On the one hand I totally understand where he is coming from and I know he must be exhausted, but on the other hand I was disappointed. I spend most of my days and months couped up, and I really wanted to do more today. There are hundreds of wonderful restaurants in New York, yet with Mattie you can't stop at any one of them. He is not interested in food, and expects the rest of us to share in his disinterest. So when he wanted to go back to the hotel today, I basically said to him, that if he was going back, then he had to entertain himself for a while. Because I know how he operates, he says he is tired and then you get him home and he comes to life and his energy and need to play constantly with you can wipe you out. I told him that if he had all this energy back at the hotel then that really meant he could continue sight seeing.
When we got back to the hotel he did entertain himself for a little while, and then Peter had to step in and help him with the erector set. I think many months of intense one on one play time, dealing with cancer, and a list of so many other things in the last six months have just wiped me out. Mind and spirit. So today, I decided to lie down. I called Karen, because her school is in final's week, and she was able to get out of work alittle earlier today. We were supposed to meet up this afternoon, but Karen understood that I was tired, and suggested I rest until dinner time. Which was a great idea.
At around 6:15pm, we hopped into a taxi and went to Goli and John's apartment. They are our former neighbors from DC. Karen met us at their apartment as well. Mattie enjoyed seeing their cats and he played with them and his lego sets for quite some time. Goli served Mattie spaghetti with a meat sauce and he devoured that. Pretty soon there after, Mattie fell asleep for several hours next to Peter. This was actually wonderful, because it gave us all a chance to eat dinner and talk. Goli had invited a long time friend to dinner as well. Her friend is a cancer survivor, and we really enjoyed meeting him. Goli was born and raised in Iran. We all had a fascinating cultural discussion about the differences between American and Iranian families in terms of how a family would handle and react to a child having cancer. I learned a lot from this, and I also enjoyed talking with Goli's friend about how people reacted to him having cancer and the type of support or lack there of that he received. He was explaining for the most part that many people turned away from him and did not help him, mainly because they did not know what to say or do. I told him that this is indeed the expectation I had too, but that this is far from what I am experiencing. I am still trying to come to terms with this, and can't quite explain why my reality doesn't match my expectation. But I told him that Mattie is a child with cancer, and any parent on some level can relate to this shocking news. It is a parent's worst nightmare and children being sick goes against the law of nature in some way. So to some extent that may explain the differences in how people react to cancer in adults versus children. But on the other hand, I think the difference in involvement can also be explained by the types of families RCC and SSSAS attracts. These are families who are willing to tackle the unpleasantries of life, to stand by a member of their community, and to have the courage not to walk away or forget about what we are dealing with each day. That is not easy to do, because it would be far easier to walk away and try to block out this pain.
We thoroughly enjoyed dinner tonight. Goli made us wonderful appetizers of eggplant (one of my favorite vegetables) served with olive bread and she even made homemade cheese and ham pastries for Mattie. She served us a wonderful dinner as well and made a fabulous creme brulee for dessert! Thank you Goli for spoiling us and thank you Karen for the lovely wine! By 10:30pm, Mattie woke up and he was crying that he wanted to go home. So we all popped into a taxi and headed back. Mattie came back to the hotel somewhat energized but by midnight I said enough was enough. So we got him ready for bed, gave him his medicine, and hooked him up to an IV.
As we head into thursday, Mattie has his next MTP-PE infusion tomorrow at Sloan Kettering. Wish us luck! On some level it is hard to believe this will be our last full day in New York. The time went so fast!
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