Emily’s 9th Birthday Week :: Part 1

Emily’s birthday was in early May and we started off Emily’s birthday weekend with another trip to Philadelphia. First, Emily was invited to visit the Penn Vet Working Dog Center. The center trains dogs beginning when they are just eight weeks old to search for victims buried under rubble after a disaster such as a building collapse. They train dogs for other purposes as well and the center is currently doing research on training dogs to detect ovarian cancer in women – very interesting! Emily had a chance to see how they train the dogs and how the dogs can find someone buried under a pile of rubble. The center has a pile of rubble that they use and one of the trainers or volunteers will hide in the rubble. Then they let one of the dogs try to find the person and see how long it takes. It was a great experience for Emily to see and she loved hanging out with all of the dogs.

That evening we attended a reception at the Penn Abramson Cancer Center to celebrate Dr. Levine’s appointment of the Barbara and Edward Netter Associate Professorship in Gene Therapy. Dr. Levine grows the T-cells in his lab for the T-cell therapy treatment that Emily had. Emily and a few of the adult T-cell patients were there to help celebrate. They knew Emily’s birthday was the next day and surprised her with a birthday cake(s). It was a very special evening to celebrate Emily’s birthday and honor Dr. Levine who is part of the T-cell team that saved her life.
Emily, Dr. Levine, and two adult T-cell patients
Birthday cake!Emily, Tom, Kari and Dr. Levine
The next morning – Emily’s 9th birthday! – we went to the Philadelphia Zoo and Emily got to feed the hippos. That was interesting. Hippos apparently are not very nice so we had to stand above them and feed them. Interesting facts about hippos: 1) Their skin secrets its own sunscreen and 2) Their skin also secrets it’s own antibiotic if they have an injury.
On our way home from Philadelphia we stopped at the Park Forest Middle School for the State College Mini-THON where they raised a total of $57,182.34! The kids raise money for the Four Diamonds Fund which supports pediatric cancer patients at the Penn State Hershey Children’s Hospital. It’s similar to the big Penn State Dance MaraTHON and the kids dance from 6:00 PM  – midnight. Emily always has a great time and it’s inspiring to see these kids raising money for pediatric cancer. There are mini-THONs held around the state of Pennsylvania all year and in other states now. If you would like to learn more and/or hold a mini-THON in your school (they are in elementary school, middle school, and high school) send us a message and we will connect you with others who have held mini-THONs. It’s also a great high school senior project 🙂
The McCauley Family sharing their son Lachlan’s cancer story.In the left photo is Isabella (holding Manna) – Isabella is a leukemia survivor after relapsing and having a bone marrow transplant. On the right is Emily (also hold Manna!). Manna is Emily’s BFF and they are in the same class. Manna’s family is also a Four Diamonds Family because her younger brother Corban was diagnosed with neuroblastoma – he has been in remission for several years now!
After the mini-THON we drove home and prepared for Emily’s birthday party the next day. This year she chose the theme to be Penn State colors and of course there was a bouncy house. She wanted a Penn State cake and the Sweet Art Bakery in Clearfield designed the cake for her and incorporated purple and butterflies. It was chilly and rainy for her party but she still had a great time. I found this “great” game idea on Pinterest where you put a shower cap on and spray it with whipped cream. Then a partner stands away from you and throws cheeseballs, trying to get as many to stick in the whipped cream as possible in a certain time limit. Total Pinterest Fail! Within 30 seconds the kids were spraying whipped cream all over each other AND THEMSELVES and then THREW cheeseballs at each other. It was not the calm game that Pinterest implied it would be. There was shrieking and food flying everywhere but the kids thought it was the best game ever and I guess that’s what counts. Some of the girls had to wash their hair and we had to scrub the whipped cream and cheese powder off their jackets. So parents if you are wondering why your child came home with wet hair and their clothes were covered in sticky orange stuff…this would be why.
Our weekend didn’t end there though! We will continue in the next blog post.

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 returns to THON 2013!

Photo: Emily “Emma” Whitehead poses with Devin Schiaffino, Mike Pendleton, and Chelsea Slavin, members of her THON organization (PRSSA – Public Relations Student Society of America). Devin and Chelsea were two of the 700+ who participated as THON dancers and did not sleep or sit for 46-hours straight to raise money for pediatric cancer patients.

Words never can describe the magic of THON weekend. After we missed THON last year one of our main goals was “to get Emily to another THON”. And we did! It was so exciting to be back! The THON community was such a huge support system for us over the past few years and particularly over the past year. THON raised $12,374,034.46 which is incredible. Thank you to everyone who donated!! Thank you to our dancers, Chelsea and Devin, who stood for 46 hours (THON dancers (all 700+ of them) do not sleep or sit for 46 hours straight)! Enjoy the photos! And THANK YOU to everyone who purchased the Emily Believe magnets to benefit THON! If you would like one you can still order them here.