On Friday Emily celebrated 1 year cancer free!! Last year on May 10th was the day we found out that the T-cells had worked and that Emily was in remission!!
We had a GREAT time in NYC two weekends ago! We left Thursday evening and spent the night in New Jersey near the home of one of our THON girls, Becky. Becky’s parents cooked us a fabulous dinner (Spaciba! (That means “thank you” in Russian)). Then we headed to our hotel where Emily was very disappointed the pool had closed for the evening – so instead she got up early for a swim. She loves hotel pools. In the morning we drove into NYC (we were lucky – no traffic!) and checked into Emily’s favorite hotel – The Algonquin. It’s her favorite because Matilda the hotel cat lives there. We stayed there during our visit in 2010 and Emily couldn’t wait to go back to see Matilda. We headed right to Times Square and Toys-R-Us to ride the Ferris wheel. Then we had lunch with Denise (who wrote the wonderful NY Times article about Emily in December) and later that afternoon we finally had a chance to meet Ross, his family, and some of the others who made the short documentary Fire with Fire about the CART-19 trial). We also found out that Robin Honan, the producer of Fire with Fire, was nominated for an Oscar for another film she produced called Mondays at Racine (we highly recommended watching the trailer! The full film will be on HBO later this year). Then we had dinner with our THON friends Becky and Ariana at the Algonquin restaurant.
Saturday we had breakfast with another of our THON girls, Krystin. Then we had to move to the W Hotel (since we were invited to speak at the Hope Gala, the hotels each donate one night to the visiting THON family – thank you to The Algonquin and W Hotel!). What we did not anticipate was that many of the roads around Times Square would be closed for the St. Patrick’s Day parade. We couldn’t get a taxi so we had to drag our bags through the crowd in Times Square. Not only that but when we left the hotel the elevators were temporarily not working and we had to carry our many, many bags down 9 flights of stairs. Then we had to drag our many, many bags several blocks through Times Square to the W. As we were dragging our bags through the crowded streets of green clad parade goers I had a flashback to last year at the same time. It was St. Patrick’s Day weekend and we were in Philly. Tom and I decided to go out for lunch and for some reason thought eating at an Irish bar was a good idea that weekend. It was crowded and everyone else was happy and having a great time. Emily was of course in CHOP and was very ill from chemo and we knew we had another month to get through before she received T-cells. In the middle of eating our lunch a group of young girls about Emily’s age stood up and did an Irish dance. We just sat there almost in tears watching those young, healthy girls laughing and dancing and the crowd clapping. Everyone was having such a great time while we were wondering if our sick little girl was going to make it. It was a really low point for us. We never could have imagined that one year later we would be in NYC with Emily enjoying the St. Patrick’s Day crowd as a family and HAVING FUN!
After making it to the hotel we took off again to make our way through the crowd to the American Girl store. We also didn’t realize that they close 5th avenue completely for the parade and it is very difficult to cross that street if you need to go somewhere on the other side. We had to talk with several NYPD officers to ask if we could “please cross the street because all we want to do is get Emily to the American Girl store!” Finally, we were led across the street so Maggie (Emily’s doll) could make it for her hair appointment and her ear piercing appointment (I know – it’s ridiculous but Emily LOVED it). Then we headed to the Red Door Spa so Emily could get her own hair and nails done for the gala. After we left the salon we could NOT get a taxi. Finally Emily said “This is New York City – don’t people just walk?” So we ran through the snowy streets about 10 blocks to get back to our hotel.
We finally arrived at the gala and Emily had a blast! She was the star of the night – she danced and led several conga lines around the dance floor. We met so many wonderful people there – thank you to everyone who came! The most the gala has raised at the event was $27,000 but this year they raised…$74,000!! We had so much fun we’re hoping to try to make it an annual event. We were walking back to hotel in Times Square at about midnight and Emily said “I want to go to parties in Times Square EVERY night!!”
We had a terrific weekend although Emily was disappointed she didn’t get to see the Statue of Liberty or the Empire State Building. It was still cold to be out sightseeing a lot so we are hoping to go back when it’s a little warmer. Emma loves New York!
Watch the slide show below or hover over it to scroll through the photos.
Many of you who are not from our area probably haven’t heard but there was a tragedy in our small town today. There was a shooting at our local grocery store where two people died. It’s hard to believe that something like this could happen in our small town. Our hearts go out to the families and workers affected by today’s events. County Market always supports many fundraisers in our community, including for Emily.
This comes after a a series of other sad events for us during the past week or so. Nora, the little girl who traveled from Croatia to CHOP to try to get in the T-cell clinical trial, passed away early last week before she could get her cells. We will always remember Nora and her parents who did everything they possibly could to try to save their little girl ♥ ♥ ♥
A few days later we learned that one of THON family members, Nicholas Pantalone, passed away. We loved reading his CaringBridge posts. Even though he fought cancer every day he always had a positive attitude. He continued to attend college and worked at Hershey Park every summer – he had a passion for roller coasters. He spoke at THON in 2011 and gave one of the most inspiring speeches we’ve ever heard. You can see it here: https://www.youtube.com/watch?v=PQp1VRKvP5Y
We will miss reading his updates.
Late last week we learned that a friend of ours found out he had a brain tumor that required surgery. His baby girl passed away from cancer late last year. Please keep their family in your prayers.
It makes us even more grateful and appreciate every day we have with Emily and our family ♥
We will post an update on Emily tomorrow – we have a lot of catching up to do!
A few weeks ago we spent the day in Philadelphia at Penn to speak at the Abramson Cancer Center Director’s Leadership Council meeting. We had a chance to talk with a few of the extraordinary people who helped to fund the T-cell research that saved Emily’s life. Some provided private funding or endowments for the research very early on when no one else believed in the research. They all mentioned that after talking with Dr. June that they just believed in him and believed his research would save lives. It was an honor to speak to this group who supported the research from the beginning. Without them, Emily would not be here. One person came to me and told me that her brother passed away from leukemia 23 years ago. The day after she started an endowment fund and has since been providing funding for cancer research. She said she has been waiting 23 years to hear a success story like Emily. It made us realize the importance of sharing Emily’s story so that we can do our small part to raise awareness, and hopefully the needed funding, for pediatric cancer research. We also got to see the new (bigger) lab space where they are modifying the T-cells. After that, we went to visit Avrey and her family. Avrey is 10-years old and recently recently received her T-cells (you can follow her Facebook page Pray for Avrey Walker). She needs a miracle too.
After that, we visited the Penn Museum because Emily heard that there were mummies there – but after seeing the mummies she said they were a little “creepy”. It was a really wonderful day!