That's the thing about coming up here, while New York is a very glamorous city with all of the new and exciting and all that jazz, that isn't what we see. The nightlife and the lights are one of the best parts about the city and we are seldom even outside at night much less enjoying the nightlife or taking in the lights. We are always inside the Ronald or in the hospital. If we do get outside at night it is to run around the corner to pick up milk or something. And while the Ronald is amazing, it is not luxurious. The bedding is the same as hospital bedding and sometimes you get lucky and get a room with bath towels from The Company Store that are fluffier than the others, but that is about as luxurious as it gets. Every few months or so they have people volunteer services for quickie manicures or 15 minute massages or something; semi-luxurious I suppose. However, there is no comparison to waking up in the warmth of a Marriott bed where you are surrounded by down everything. So soft. Clayton looked like an angel in a cotton ball sleeping this morning. Getting to stay in an actual hotel room has been a bit of a treat.
Our New York is very different from other people's New York though. Most people bring their best clothes and most fashionable accessories and book broadway shows and so on...I know because I have been there and done that when I've traveled to the city with my mom and grandparents in the past. I see pictures across Facebook where many others are still doing that same thing. In addition, I have one friend from years past who is up here attending school, another who works for GQ and another who was a Rockette and they, like all of those that visit the city, see a very different city than I see. I see a city that is filthy and full of germs because for us, every germ counts. I see children at every stage of hair loss and regrowth. I see a little girl in pink UGGs with bows down the back, screaming to her daddy, "no more needles, no needles, please no needles". I see a little girl on a scooter sliding across the playroom as her mother follows behind her with her IV pole and the nurse periodically comes in to check her pump and change out one poison for another. I see a little girl full of grace with a pink sparkly bandana wrapped around her otherwise bald head laughing and coloring with a volunteer. I see a 3f8 nurse laughing and playing with one of the children she usually only gets to see bedridden from antibody treatments. I see cancer and pain and love and grace and compassion that most people don't get to see and few places have to offer. There is no glamor or luxury in cancer. Socializing is done through anxiety, exhaustion and tears and sleep is worth more than any night on the town. At the end of the day, everyday, my New York is very different from what most people think of when they think of New York. New York was fun for me when I use to travel here growing up, now it is different. Now, it brings the excitement and the comfort of having a medical team I trust with my whole heart. It brings the feeling of support knowing I am about to once again be surrounded by families who are where we are. I've grown up enough I can now see past the glitz and glam of New York to know I would never want to live here, but for now it brings me a peace I can't get anywhere else. And while usually that peace means a total lack of glamour or luxury, this week my grandfather treated us. A very rare treat indeed! While the weekend was freetime, Monday again brought schedules and tests...
Yesterday and today, we have periodically interrupted our new found luxury for doctors and testing. Today we have been at the hospital since 8 am seeing doctors, doing blood work, getting premeds and such for scans for the rest of the week and doing Clayton's MRI. Test results will be Friday or next week. We should know about his HAMA tomorrow and if he is positive we will retest every four weeks until he is negative. If he stays positive we won't be back here for another three months when we do scans again. So we'll see what the rest of the week brings...
The rest of the week is this:
Wednesday- CT, 4 hour urine collection, HAMA results
Thursday- MIBG, Bone Marrows (these are the big ones)
Friday- Home
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