We just realized that today is June 1st – one year since Emily came home from CHOP! Last year on this day we drove through our town of Philipsburg, led by local fire trucks, through a parade of our supporters, neighbors, friends, and family who stood out in the pouring rain to welcome Emily home!
Emily is very excited that school ends in just five days so she can begin summer vacation. We are excited that Emily is finishing 2nd grade healthy and cancer free! We are so proud of her – she worked really hard this year (actually so did Tom and I…we had to learn “everyday math”)! I still remember watching her walk into school on the first day this year. I was worried about her because she had missed almost all of 1st grade (and most of kindergarten) and I was worried that she would have a hard time adjusting. I watched her walking into school and I was so excited that she was healthy enough to return to school that I yelled out the car window “I love you! Have a great first day! AND REMEMBER TO USE HAND SANITIZER!” Apparently, that was totally embarrassing for her and she told me about it once she got home that day. I had strict drop off rules for the remainder of the school year. I was to stop the car, allow her to get out of the car on her own (I was to remain in the car – no hugs or kisses allowed), and I was permitted only a quick wave goodbye from the car (no rolling down of the window and yelling “embarrassing” things about using hand sanitizer or how much I love her). I realized then that she was going to be just fine returning to school. Even though she had to go through extraordinary circumstances, she started back to school like nothing out of the ordinary had ever happened. Tom and I on the other hand still worry about her every day, all day long. Philipsburg Elementary, along with other local elementary/middle/high schools, have been wonderfully supportive of Emily and our family – thank you for your help and support!
Emily has been feeling fabulous other than a cough she’s had for more than a month. We took her to the doctor(s) and everything seems fine – blood work and chest x-ray look great (I still like being able to say “blood work” and “great” in the same sentence). She had a CT scan of her sinuses at Hershey Medical Center last week. We haven’t been for an appointment at Hershey since last summer. Emily was excited to finally tour the new Children’s Hospital at Hershey. Tom and I got a tour back in December when Emily was admitted to the “old” unit for the flu but Emily wasn’t allowed to take the tour because she was contagious. The new wing opened a few months ago. Emily saw the new – much bigger and brighter – inpatient rooms with large flat screen TVs and said “I want to stay here!” Um, no! We’re hoping to never stay there again! Emily took some time to explore the new playroom and talked the staff into giving her several craft kits to do even though she wasn’t inpatient. Then she made herself right at home in the family lounge on the oncology floor doing crafts and eating cookies. She didn’t want to leave! That might sound strange after all the time she has spent in the hospital, but really it just tells you how wonderful the staff are and how amazing the hospital really is for her to want to hang out there all day. She feels comfortable there and only remembers the fun things she did during all that time she spent in the hospital (her favorites were crafts and playing BINGO with the Penn State Nittany Lion!). The CT scan came back fine so for now she has been diagnosed with “reactive airway disease” and possibly allergies and uses an inhaler a few times a day to help with the coughing.
While we were at Hershey last week we had a chance to speak at the Leukemia and Lymphoma Society Central PA annual conference (LLS has contributed many funds to Dr. Carl June’s T-cell research). We’ve never been to an LLS event before and were so happy to have been invited!
Speaking of Dr. June – he was awarded the Philadelphia Award last evening! His research has saved many lives, including more children who have been enrolled in the CART-19 trial. You can see an interview with Dr. June here and read more about The Philadelphia Award. Where would we be without Dr. June and the rest of Emily’s T-cell team at Penn and CHOP? We would have a very different life if it weren’t for them and we think of this every single day.
We have created TEAM BELIEVE again for the CHOP Cancer Center 5k Run/2k Walk in September! We are really excited for the run/walk this year. We learned a lot from participating last year and already have several fundraising ideas in the works. More details and how to join us for the event will be coming soon. BTW – I’m still disappointed that we didn’t get free donuts last year, so I am determined that we WILL get free donuts this year!
I guess that’s it for now. It seems like we go a long time in between updates now but that’s a good thing! Emily is healthy and happy!
Love ~ Tom, Kari, & Emily