What we’ve been up to…

We have a lot of updating to catch up on. I just posted separate posts about a few things we have been doing over the past month. You can read about THON, our Philly trip, and the NYC Hope Gala.
 
Overall, Emily has been doing really well. Sometimes I’m afraid to keep saying that – it’s part of the reason I don’t update as often anymore. I sit down to write updates all the time but I never finish them because I feel like if I keep posting updates on how well she’s doing that I’m jinxing her in some way. I don’t know if that makes sense. But we’re coming up on her 1 year visit and things have been going so well that I’m afraid at some point it’s all just going to end again. Now I feel like just talking about jinxing her will jinx it. It never ends!
 
She has been fighting a cold off and on since THON (middle of February). Over the weekend her cough seemed worse and she was coughing all night long, which meant no sleep for anyone (even Lucy our dog would growl and sigh when Emily would start coughing!), so Monday we took her to see Dr. Powell. She was supposed to see him Wednesday anyway for her March visit and we were going to try to wait, but Emily was coughing so much we felt she needed to be seen early. Her chest x-ray looked fine and blood work looked good so she is taking an antibiotic for a few days. Her cough is a little better today.
 
Her blood work last month and this month is….normal! Last month was the first we’ve seen normal blood work in a long time so of course….I started to worry. WHY is the blood work normal? Does that mean the T-cells went away? Is her white count rising because of blasts (cancer cells)? Nope. It was just plain old normal blood work :-)Emily’s next doctor visit will be at CHOP for her ONE YEAR follow-up appointment on April 15th. It will be an exciting day because she finally gets her port out!! I’m not going to get ahead of myself because it’s still a few weeks away but we will have a lot to celebrate around that time: port removal, 1 year in remission, 8th birthday, AND her first communion happens to fall on the same weekend as her birthday! We’re hoping to combine everything into one party, which of course will include a visit to Party City for decorations 🙂
 
Emily and T-cells were in a few news stories the past few weeks including GMA with Robin Roberts and The New York Times again. Results of the first two pediatric patients in the CTL019 trial (formerly the CART-19 trial) were published in The New England Journal of Medicine (Emily is “Patient 1”). CHOP released this statement about the results. You can also read more about the story here and here.
 
We have a lot of things coming up that we are very excited about and should be a lot of fun! We will share soon!

 

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.

Updates and photos coming soon …

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!