New York City and The Hope Gala

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.

Emily’s New Year’s Resolution? A Hamster.

Emily "Emma" WhiteheadWe thought New Years was the only holiday we had not spent in the hospital and then remembered that we actually did spend New Year’s Eve in the hospital last year at Hershey. Emily was determined not to repeat a hospital stay and planned a New Years Eve party this year. She insisted on decorations, so I took her to Party City – she was pretty excited when we pulled in:

Emily: “WAIT…A…MINUTE!! There is a store called PARTY CITY?!?! You mean the whole store is filled with party decorations!?!? WHY didn’t you tell me about this before NOW? This changes my whole life!”

The other day I told Emily that I had already broken my News Years resolution and she said “That’s OK – no one keeps their resolutions. I mean, my resolution was to get a hamster and do you see hamster running around this house?” LOL! We had to explain that a resolution was a goal you make for the new year and not something you want or wish for. She still insists her New Years resolution is to get a hamster (which is not happening – we really don’t need something else to take care of!)

We opted to stay in New Years Eve because Emily’s white cell count and ANC were pretty low (her ANC was only 390). Since her ANC was below 500 she had to get neupogen shots again for 5 days (neupogen is a medicine which helps you make more white blood cells). She had blood work last Friday and her ANC was up to 6500 – good news! Bad news is she’s still testing positive for c-dff. It’s proving to be pretty nasty and resistant to the typical medicine used so she’s switching to a new one that will hopefully help. We kept her out of school last week because of her low blood counts and because so many people are sick but decided to send her back this week. She wasn’t happy to go back after having an extended Christmas vacation! I also started back to work full-time after working part-time until Emily’s health was stable enough, so we both had a hard time adjusting to our new schedule this week. We miss the days we were able to spend playing with legos, doing crafts and playing Barbies. After waiting 7+ years for Emily to develop an interest in Barbies she finally wants to play with them! Woot! I was getting worried she would never want to play Barbies. Two years ago I searched for a Barbie Dream House (the ‘real’ original Barbie Dream House from 1978 that I had when I was little). I finally found one on Ebay and when it arrived it was missing 90% of the pieces and was extremely dirty and discolored (and it smelled). It wasn’t worth playing with so we got rid of it but I’m still looking for a ‘like new’ Barbie Dream House if anyone has one sitting in an attic somewhere! Wow, I totally got off on a Barbie tangent.

Emily is looking forward to a weekend trip to New York City in February. We’ve been asked to speak at The NYC Hope Gala. The Hope Gala is an event that raises funds for the Penn State Dance MaraTHON. If you live near NYC and want to attend you can view ticket info at www.nychopegala.com.
For those of you not familiar with the Penn State Dance MaraTHON that raised $10.69 million for pediatric cancer patients just last year, you can read more about it (or donate!) at www.thon.org. Emily is looking forward to NYC so she can do her two favorite NYC things: 1) ride the ferris wheel at Toys-R-Us, and 2) visit the American Girl store. Our experience at the American Girl store 2 years ago was not pleasant 🙁 We are hoping to have a better experience this time. She also wants to see the Statue of Liberty on this trip.

In the post Emily wrote yesterday, she mentioned the MardiPaws parade in New Orleans (it’s a parade of dogs in costume that raises money for several charitable organizations). We were invited there for Emily and Lucy to be Grand Marshals in the parade, but it’s during THON weekend so we had to decline the offer. They already invited us to go next year (March 2014). She’s already thinking of costume ideas for Lucy!

We are still being sent messages from around the world who have heard about Emily’s story. We’re slowly responding to messages but it might take us awhile 🙂 We’ve been trying to collect the printed articles about Emily so we have them for her scrapbook. If you have extra copies please send them to us (we have lots of The Centre Daily Times, New York Times, and Philadelphia Inquirer). Emily loves getting comments from all over – we map them out so she gets an idea of how far her story has traveled!

Emily’s next scheduled doctor appointment is on the 28th at CHOP where she will get her bone marrow checked. We had discussed getting her port removed at that visit but because she has had issues with c-diff plus a low white count, and has needed frequent blood draws lately, we’ve decided to delay the port removal until her next visit (which would be in April).

Emily says she’s going to update more often herself because her updates get more “comments” than when Tom or I post! She kept pressing the refresh button to read all the new comments. She does have more interesting things to say so hopefully we can get her to post more often 🙂

For those of you who live locally, there is a fundraiser coming up:
The 3rd annual Dan Straw Memorial Bowl on March 2nd from 1pm – 6pm at the Moshannon Valley Superbowl (in Philipsburg, PA). Dan was a coworker of Tom’s who passed away from cancer in 2011. This year the fundraiser will benefit Corban Potter. Corban was diagnosed with neuroblastoma in December 2011 when he was almost 2 years old and is from our town. The cost per person is $20. You can call 814-592-7001 or 814-342-7467 with questions. The guest of honor is Emily – I’m sure she will be there bowling!

Fire With Fire: A Ross Kauffman Film

We have been waiting to share this with you! This is the short film by Academy Award winning Director Ross Kauffman about the clinical trial and Emily’s story. It is AMAZING and VERY powerful to watch!