18-Month Follow-Up Appointment and Weekend Adventures

Emily had her 18 month follow-up visit at CHOP two weeks ago and everything still looks great! We made our trip to Philadelphia into an extended weekend.

Friday we started traveling and stopped in Hershey to stay overnight and visit with family. Saturday morning Emily wanted to visit the nurses at Hershey Children’s Hospital and see the new hospital again. She loves to stop there and visit the nurses and staff who took great care of her!

We continued traveling to Wilmington, DE to spend time with more family – Aunt Kristen and Uncle Nick who are expecting a baby in the spring – Emily is looking forward to having another little cousin. We went to a farm and got lost in the corn maze (it was a 10 acre maze!). We finally had to just leave the maze and walk AROUND the cornfield to get back to where we started!

On Sunday we went to the Parkway Run/Walk to benefit the CHOP Cancer Center. Team Believe raised over $4,085 this year! More than 10,000 patients, families and supporters were at the run which raised more than $1,030,000! Thank you to everyone who joined the team and/or made a donation. It means a lot to us that you support childhood cancer research!

From there we took the train to NYC. For some reason Emily was nervous about taking the train but ended up loving it. We took Emily to her first Broadway show – The Lion King. We were worried she wouldn’t like it or be bored after 15 minutes. When we asked her if she was enjoying the show she said “No I don’t like it….I LOVE IT!!”.

On Monday we visited the Intrepid Sea, Air and Space Museum Complex and then decided to have lunch in Central Park. That evening we attended the Cancer Research Institute’s 60th Anniversary Gala, “Immunotherapy ROCKS Cancer”, which is why we were visiting NYC in the first place! It was held at Cipriani on 42nd Street across from Grand Central Station. The Cancer Research Institute (CRI) visited us in August to put together a really wonderful video story of Emily’s treatment (we will share as soon as it’s online) and showed it at the dinner. Leading researchers in immunotherapy were honored. Other patients who have been treated with immunotherapy were also at the event. We were really excited to see Dr. June there! Four awards were presented: Serial tech entrepreneur and philanthropist Sean Parker (of Napster and Facebook) and MedImmune biotech head Dr. Bahija Jallal were presented with awards for their dedication to advancing cancer research. We talked with Sean Parker for a few minutes and he is really excited about immunotherapy and hopes to rally support to raise millions of dollars to continue work towards a cure for cancer. Dr. Michael Karin, professor of pharmacology at University of California, won for his groundbreaking research, and Dr. Jill O’Donnell-Tormey, CEO and director of scientific affairs at CRI, was presented with an award for her leadership of CRI. CRI funds immunotherapy research including Dr. June’s research with the T-cells. The group JOHNNYSWIM performed.

Tuesday we took the train back to Philadelphia. In the morning Emily had a photo shoot with Dr. Grupp. They won an award and the announcement will be out in November. We wish we would have taken a photo of Emily and Dr. Grupp during their photo shoot. Tom was trying to make Emily smile during the shoot and he was doing some pretty inappropriate things with two stuffed animals above the photographer’s head to get her to laugh. We then met Austin Schuetz who is the 21st child to get T-cells – his family was also in the 60 Minutes Australia segment. He received his T-cells on the day we were there and is doing really well. We also talked with two other families who were there for follow-up visits.

We then had a chance to visit more of the T-cell team. We met with Dr. June, Dr. Kalos, Dr. Levine and finally met Dr. Porter who works with the adult T-cell patients. Dr. June brought his dog to work because he knew Emily would be visiting and everyone knows she loves dogs! Dr. June’s wife Lisa was a student at Penn State and danced in THON twice! Dr. Kalos showed her a new app on his iPad. Dr. Levine gave Emily a tour of his lab. Emily thought it was funny that we had to put suits on to protect the lab from germs, dirt and dust. She had a chance to see the big freezers where the cells are stored and the equipment used to grow the T-cells. It’s fascinating. The lab just got three new freezers to store cells and Emily gets to name them. The lab names all of their freezers after Simpsons characters.

Emily doesn’t have to go back to CHOP until April which will be her two year visit, but will still continue to be seen every 6 weeks for a check-up and blood work in State College. We had a great weekend traveling and being together. Every time we get to do something with Emily for the first time – like take her to her first Broadway show – we just keep thinking about how lucky we are to be able to do that. I almost started crying when the show began just watching her eyes light up and listening to her giggle and watching her clap and dance in her seat. There was a time when we thought  we would never get to do things like that with Emily again. We say it ALL THE TIME but we never take anything for granted and enjoy every day we have together and we try to have as much FUN as possible 🙂

Here are some photos from the weekend:

Some of those who signed up with Team Believe!


Intrepid Air and Space Museum.


There was a replica of the ship made OUT OF LEGOS! We are obsessed with Legos at our house and wish this was sold as a set so we could put it together. I wonder how much it would cost if they did sell it as a set?? 🙂


Cancer Research Institute Awards Gala!


Emily had 13 tubes of blood taken at her appointment!


Visits with Dr. Kalos and Dr. June


A visit to Dr. Levine’s lab! Emily loved the roll of bubble wrap and wants to order one!


3 thoughts on “18-Month Follow-Up Appointment and Weekend Adventures”

  1. I love seeing you in such a good shape 🙂 Hope, my wife will be similar soon. She is fighting since more than two years now after having two steam cell transplantations because of a acute myeloid leukemia!

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