Emily continues to do well! Today she finished the antibiotic that she has been on for salmonella (it has been an entire month already) – I guess we’ll see soon if the salmonella is completely gone. We sure hope so! The sub-cutaneous IG injections are still working well at home. We’ll have to take a photo of what it looks like when she gets the medicine. The medicine infuses under her skin and it looks a golf ball under her skin until the medicine slowly infuses and the bump goes down. She gets a little upset when it’s time for the infusion since it does involve a needle, so we tried to make light of the situation, and for some reason, the bump under her skin reminded us of the Gremlins movie when Gizmo gets wet and develops those lumps and baby Gizmos pop out. Well…she was NOT happy when we made that comparison. Apparently, she’s had some nightmares about the Gremlins movie that we did not know about and she hates the movie. Needless to say, we don’t mention Gizmo during her infusions anymore.
Last weekend we travelled to Hershey on Friday (this time is was for fun – not for a hospital visit!) where Emily saw her friends Kate & Molly. We took the girls to dinner at Friendly’s (a favorite because of the ice cream!) and a movie (Wreck It Ralph, which was pretty cute). On Saturday we travelled to Philly where Emily was checked out by Dr G. CHOP took some photos and videos of Emily and the check-up so they have footage to spread awareness about the CART-19 trial. They also took photos and video on the day of the T-cell infusion back in April, so now they have some “before” and “after” footage.
After that we went downtown to get ice cream and shop with friends. Emily spotted a gourmet dog store on the way to get ice cream so of course we had to stop there and buy treats for Lucy! We went back to CHOP to visit and have dinner with friends whose daughter has leukemia. Please pray for comfort for sweet Elena and her family.
This weekend should be a quiet one. We don’t have a lot planned. Emily has a birthday party to go to and we are celebrating Emily’s Aunt Brenda (Kari’s sister) and [soon-to-be Uncle] Tom’s engagement this weekend! We didn’t update much about two weekends ago when we went to Pittsburgh to visit with Aunt Brenda and Uncle Tom but we had a good time. We went to the Carnegie Science Center, saw a movie (Hotel Transylvania – also very cute) and Emily played with their two cats (she adores animals). We had planned on going to the Pittsburgh Zoo for Halloween weekend but it was too cold and rainy 🙁 When Emily found out last weekend about Aunt Brenda’s engagement she said “Oh good! I get to add Tom to my Uncle collection!” (??)
I just realized I posted a lot of normal “stuff” (other than the whole Gremlins/Gizmo thing which just sounds weird now that I read what I wrote about it. I should probably just delete that entire part so we don’t get messages about it!) and there wasn’t any mention of blood work! The last time she had blood work was on 10/19 and she doesn’t need it again until 11/21. That’s the longest she’s gone in between blood draws for more than a year. It kind of freaks me out not knowing what’s going on with her blood work but it’s also a relief not to have to be worried about it.
Like most families affected by pediatric cancer we want to help spread awareness about the disease. We are excited about an upcoming 3-minute documentary that is being produced about the CART-19 clinical trial (Emily is part of the documentary – they will be using some of the footage from CHOP). It’s part of a series of documentaries about innovations that are having a really big impact. The director of the film, Ross Kauffman, first heard of CART-19 when he read about the three adults who had been treated and he has followed the story since. We are looking forward to seeing the film, especially after watching another 3-minute film Ross directed called Wait For Me (you can see it here: http://www.youtube.com/watch?v=TL9L2s0rGuE).
You can see some of the other 3-minute films by other directors here: http://focusforwardfilms.com/
The doctors involved in CART-19 from Penn and CHOP have been interviewed for the film. The doctors have worked years, and some have worked most of their careers, getting the clinical trial to this point. We can’t wait to see the story that Ross tells about CART-19! It should be completed soon – we will let you know!!
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Tom, Kari & Emily