This week marks two years since Emily had the T-cell therapy! Has it really been two years already?! We are headed to Philadelphia later today for her 2-year follow-up visit at CHOP. We will be there Wednesday and Thursday for several appointments. Wednesday is her oncology visit including bloodwork which she hasn’t had done for several months now. It has actually been nice not seeing labs – it’s hard not to panic every time her labs look a little off, and I’ve realized that not seeing labs and obsessing over every value has helped me worry less about Emily’s health the past few months. The weeks leading up to an appointment are always stressful though and we will be anxious until we see normal bloodwork. She also has to get a renal ultrasound to check her kidneys. The PBS film crew will be following Emily at her appointment and throughout the day to get some footage for the cancer documentary.
After her appointments Wednesday we will stay overnight with Emily’s Aunt Kristen and Uncle Nick so Emily can meet her new baby cousin Sam! She has a few other appointments back at CHOP on Thursday with pulmonology and immunology to hopefully figure out why she can’t get rid of the cough/congestion she’s had for quite awhile.
We have some travel coming up over the next few weeks to Philadelphia (twice), Pittsburgh (Emily is a junior bridesmaid in Aunt Brenda’s wedding!), Washington DC, and NYC. Also during that time we will be celebrating Emily’s 9th birthday (May 2nd) and then her 2-year cancer free anniversary (May 10th)! It will be busy but we’re looking forward to it – with her birthday and anniversary coming up we are more thankful than ever that she’s healthy (at least we hope so – we always worry about saying that until we see normal bloodwork!).
Photo: Tom, Kari and Emily in the new space at the Perelmen Center for Advanced Medicine beside a wall display highlighting the team of doctors and researchers who work on the T-cell clinical trial. Emily has always really liked the photo of the cells right above the doctors!
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!
Emily had her 9 month follow-up appointment (post CART-19) at CHOP on Monday. She had a bone marrow aspiration/biopsy and spinal tap. No cancer cells were detected! The T-cells are still present in both her bone marrow and spinal fluid and the cells are still working! This was really exciting and such a relief to hear after our scare earlier in the week. Emily doesn’t have to go back to CHOP until April for her one year follow-up visit where she will also get her port out!
We are getting ready to go to NYC this coming weekend to speak at the Hope Gala – it should be a fun weekend! Then the weekend after is what we’ve been waiting 2 years for – the Penn State Dance MaraTHON!! We can’t wait to go. Tomorrow is the last day to send Emily mail for Kid Mail call at THON – to learn more and get directions for mailing letters, see this post.
The photo of Emily is one I was able to take this weekend. She doesn’t like for me to take her photo much anymore (after all the media photos she did the past few months she got a little tired of getting her photo taken!), but she allowed me to take just a few shots and I was able to get this one! I love the way it turned out.
We will be posting tomorrow about an announcement regarding CHOP! We will be posting about it on her Facebook page first.
You will also see a few more photos of Emily 🙂