In New York, 

Concrete jungle where dreams are made of, 

There's nothing you can't do, 

Now you're in New York, 

These streets will make you feel brand new, 

The lights will inspire you, 

Let's hear it for New York, New York, New York ~ Alicia Keys

Our New York trip with Grace went very well... She was such fun to have with us and hung in for all the walking we did around the city. I think she really loved being in the big city.  I heard Grier say to her, "Gracie, I am glad you came with us"- so that is all I really needed.  We had a delay on Tuesday so we got to NYC a little later than I had hoped... As soon as we landed we got in the cab and headed to the Ronald. We checked in..dropped our bags in the room and left to get a late lunch at Lenny's.  After lunch we had to make a quick stop at the hospital to pick up some medicine... As soon as Grace walked into the 9th floor.. she said, "WOW"~ the glass playroom in the center and the aquarium are nice! She got to meet some of Grier's nurses while we waited for our meds.  After we left we headed out to walk the city... it was raining and chilly and I of course did not check the weather! Grace packed a raincoat but Grier and I were out of luck.  He was always covered in the stroller... so I was getting wet! Our first stop was Dylan's... Grace had heard about this candy store for years but had never experienced the SWEET CHAOS! It was really crowded... and that was the first sign that NYC was really busy this week because of Spring Break. Bloomingdales was our next stop..... and I got an umbrella! Grace was quite the shopper... spending her own money very wisely.... We then kept walking and headed towards Rockafeller Center.... the lego store was there!  We stopped for photos in front of the ice rink... and radio city music hall.  We tried to go into the NBC studio store and it was then we realized it was almost 8pm!  It was still spitting rain a little.. so we caught a cab and headed to dinner at "sudden hospitality" -- actually Southern Hospitality.... Grier wanted to take Grace there so she could share some BBQ chicken nachos! After dinner we walked back to the Ronald... unpacked and made our beds and fell asleep around 10:30- 

Wednesday morning came quickly... we had to be at the hopsital by 8 to get Grier's port accessed.  He had to drink his contrast by 7:30a.  He had no problem with that... I had to explain to Grace we don't do many breakfasts in NYC because Grier can't eat before some pictures... and she was good... We finally made it to CT a little late... and Grace waited right outside the room while I suited up in the lead vest to stand beside Grier~ 10 minutes later he was done with that picture and we headed for a bagel! We ended up walking the all the way to 86th and Madison... Grace wanted to go to the big Crewcuts store.. so we found that and Grier had to show her his favorite store, Lester's which was on the way!  Time was going so fast... we had to be at the hopsital again at 2:30--- and it was already 2 and we had not had lunch... so we walked backed and passed Shake Shack and we decided to stop.  I told them we had waited for the hospital a lot and it was OK if we were a little late!  We actually made it there and had to wait... we always wait so I was not too surprised! After Grier got his nuclear injection for his MIBG scan we left and headed to FAO, Apple, Central Park area... we walked 5th avenue... and then went to Times Square.  We had a nice quite late dinner at an italian restuarant and enjoyed visiting with Gretchen.  Grier fell asleep at the table!! We caught a cab back to the Ronald and again went to bed late... 

Thursday was supposed to be one scan at 9:20-- should have been done by 11... if all had gone according to our plan.  Grace decided to stay at the Ronald and watch a movie.. because she could not go in the scan with us and the waiting room is a main waiting room for everyone in nuclear med.  I went to the corner store and got her some breakfast... and Grier and I left for the hospital.  Around 10:30 they came out to tell us they were backed up-- and we could go somewhere -- and come back in 30mins!  So, we walked back and made sure Grace was OK... I know she was a little bummed when I said we had not even started the scan yet.  We left again and finally started the scan around noon.... amazingly it was one of the shorter scans... they did not want a spec CT so we did not have to change machines... which was good because Grier had fallen asleep.  When they were all done we went upstairs to have his port deaccssed.  I also asked if anyone wanted to see me before we left.  BIG MISTAKE..... we ended up waiting for almost 3 hours to talk to Dr. K -- poor Grace had been at the ronald for 6 hours and it was almost 3pm!  One thing on her list was lunch at a place she saw on the food network called s'mac... they only serve her favorite food.. mac n cheese.... we were going to cab there for lunch but never made it! We had to do a quick slice of pizza because we had plans to go to the Mets game that night.... 

We left for the subway around 5:30... walked to 77th/Lex with NO STROLLER... and caught the 6 train... we got off at Grand Central and switched to the 7 and headed towards Citifield.... The game was fun.. but it was super windy and freezing cold.  Again, not prepared clothing wise!  It was still heavy coat weather! At the 7th inning we headed back on the subway and arrived back at the Ronald late again.  

Friday was a slower day... Grace wanted to bring some cupcakes home so we walked to Crumbs... and came back and cleaning the room... packed the box up and before we knew it--- our ride to the airport was downstairs.... we landed in Charlotte at 5-- and I was exhausted... actually still am!  

I know everyone is wondering WHY I did not elaborate of the conversation with Dr. K-- that I waited almost 3 hours for!! Well, I don't know what to say... he asked me what I would like to do next??? And I was caught off-guard... I told him I was hoping for his guidance.  Grier's scan was not clear.  BUT is showed improvement and it had only been less than a month ago from the first day of chemo.  We have lots of phase 1 trials to consider... and phase 1 is exactly that... phase 1-- nothing proven! We are still waiting for the final report.  We also need to harvest more stem cells for a "rainy day emergency"- we have some stored in NYC but it would be nice to get more if we can.  The more chemo he gets his bone marrow will take longer and longer to recover... and he could get stem cell rescues to help him recover faster.  There are some things we are looking into at other hospitals. I wish there was a clear path but there is not... lots of things to weigh... there is a the new humanized antibody coming out soon... which Grier would be a good candidate for... but it is like the vaccine... not available now.. and we don't have an exact date.  We have to do something now. 

This week Grier is going to be able to go to school... play soccer.. and be the little boy he wants to be. He looks great except for the new hair style and feels ok.... his ankles hurt.. which is a side effect from one of the chemo agents he had. It does not stop him from trying to run.... but you can see that his run is a bit "old manish" 

I am hoping for some answers and guidance this week, for life to get a little easier, and as always for a miracle. I know that is a lot to ask... and considering our luck.... but I guess it does not hurt to ask!  The week went better than expected... we explored NYC like tourists... did our thing at the hospital... and crashed every night exhausted from the day...