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Adventure 17
27 May to 01 June, 2019
New York City
New York City
13 year old Gotham bound girl Macy, wages a battle with Focal Segmental Glomerulosclerosis (FSGS)
Last year Macy was hospitalized over a dozen times with chronic pyelonephritis due to several complications of kidney disease. It was probably one of our most challenging years since transplant in 2011. Not only was it physically challenging, but even more so mentally and emotionally. Macy needed something positive to look forward to. The night before a very upsetting and life changing surgery we found out that Brave Young Hearts was sending Macy (and family) on a New York City Adventure. Just the thought was what Macy needed to push through and now here we are!!! We are so blessed to have some time away as a family enjoying
Broadway and city life. We are so blessed by Brave Young Hearts for sending Macy and our family on a NYC Adventure! Just the thought of this trip got Macy through some rough times and now we are here!!!
May 28th - Ellen’s Stardust Diner,what an incredible place! Literally provides financial support for aspiring performers to make it to the big Broadway stage. An audition is required to get a job here. These are performers who learn to be servers!
Lion King!!!2nd row, center seats. So close. So fun. And some Stage Door fun too! Got to meet Simba after the show!
May 29th - The 9-11 museum and memorial was absolutely incredible!! Another great day in NYC! We took a stroll around Central Park and Central Park Zoo and visited the 9/11 museum. What are the odds that we would randomly run into another FSGS kidney family in NYC!? Well we did! As we were walking into a crowded restaurant I heard my name...We got to meet Melissa Boudreaux Naquin and Alyse from Louisiana in person! Alyse is about 6 months post transplant with recurrent FSGS. Please pray the lipid pheresis treatments she is receiving in DE will get her into remission! More fun tomorrow!
May 30 - Subway and Statue of Liberty adventures today. Had some NY style pizza, an impromptu Broadway show and max hailed a cab....
One his his bucket list items for NYC!
Oh my word, what a day. We started off with a tour of Ellis Island and the Statue of Liberty. Next I finally got to meet the inspiring Julia Baldayga and see my dear friend Pamela Baldyga and her hubby Tom from CT, who donated his kidney to Julia just last week here in NYC! Then it was on to meet up with Deanna Doyle sister to one of my best kidney mom friends Cameo Doyle Cummings. Deanna is a Broadway performer and dance teacher and generously offered to rent a studio and give Macy a private dance lesson!!!! So VERY special. Then Macy and I went to Dear Evan Hansen, what an incredibly emotional and important show! Poor Brandon and Max's Yankees game was canceled due to rain so they raced back and got tickets to Frozen! I'm telling you there's no time to eat in NYC! Macy can be a girl of few words...she had sooo much to say today!!!
May 31 - This morning we got a personal tour of the NBC studios. Because both late shows were on hiatus and Saturday Night Live's season ended two weeks ago, we got to go into all of those studios. It was amazing to see where Seth Meyers, Jimmy Fallon and Lester Holt all do their shows! We also saw Quest Love's dressing room and the MSNBC set. No photos were allowed. Then we went to FAO Schwarz where Max built his own remote controlled police car and got a magic kit where a magician was there to teach him how to do some of the tricks. Then we headed over to the Pandora store in Time Square where Macy picked up the bracelet and NYC charm that Karla Greeley so graciously bought her.
Tonight Kelly and the kids go to Wicked and I'm headed back to Yankees Stadium where there is no rain forecasted!
We always tell the kids that there are always blessings even in the hardest of circumstances. My favorite blessing through Macy's kidney disease journey is the kidney community we are part of. We have met both in person and not, so so many friends along the way. As soon as we posted that we were in New York, various members our kidney community started texting and messaging me. What was already a full trip anks to Brave Young Hearts exploded into an even more special experience. Thanks to Cameo Doyle Cummings and Deanna Doyle Macy had a private dance lesson and Deanna connected us with Nancy Opel, Madame Morrible in Wicked who graciously gave the kids a back stage tour after we saw Wicked last night!!! Thanks to Jennifer Geisser we had a VIP tour of NBC (Brandon and Max's favorite experience). There were more we just didn't have time or energy for but thanks to Marlene Botta and Anthony for offering a tour of NYPD. We now have a lost of next time's. And we finish our trip feeling double blessed and loved. When you have a child with a serious illness...experiences, living life to the fullest now, and memories are priority. We SO accomplished that this week!
Our feet have blisters, but our hearts are full and we have made memories we will never forget. Back in the homeland, Colorado.
