I wake-up early and sneak out of the dark hotel room. I make my way to the lobby to enjoy the complimentary coffee and read my book. If I position myself just right on the couch in the far corner I can be surrounded so completely with eclectic decor that I almost forget why I… Continue reading HuCAR T: 18 month follow-up- Half Truths and Tug of War.
Category: Philly/ CHOP
HuCAR T: 18 month follow-up- Living Jude’s Best Life.
Jude watches out the window as the plane gains speed for take-off. "Beau! Beau!" he grabs his arm, "We are about to lift off!" "I know, Jude, I have done this before," Beau says tenderly, but he turns and smiles at me. I told Beau last night that Jude was going to be excited, and… Continue reading HuCAR T: 18 month follow-up- Living Jude’s Best Life.
Lemonade & Paparazzi
Our mission is to change the lives of children with cancer through funding impactful research, raising awareness, supporting families and empowering everyone to help cure childhood cancer. Alex's Lemonade Stand Foundation Last fall, after our 11th or so flight to Philadelphia, I went to book another round-trip ticket for our upcoming appointment. $749. Yikes. There has… Continue reading Lemonade & Paparazzi
Long-Term Follow-up and a new companion
I debated on that title for hours. I mean, the audacity to consider putting that in print. I reminded myself I can always go back and edit it and so I finally just hit, "publish". This blog is more of a place holder than a printing press, I remind myself over and over. So fine,… Continue reading Long-Term Follow-up and a new companion
HuCART Day -3: Weekends are for the country.
This past weekend we set out to find some good ole' nature to dip our toes in after 5 full days in the big city. City life is a trip. It's so hot and so humid and while I am walking around feeling the eagerness of an explorer, I am struck that some people (a… Continue reading HuCART Day -3: Weekends are for the country.
Dear Beau,On what should be your first day of school. HuCarT Day -7
Dear Beau, All your friend's parents are posting first day of school pictures. I was thinking of taking a picture of you leaving this morning. I imagined having you hold a chalkboard sign that read "Back to Chemo." Instead you walked out the door with dad and I told you to be kind to everyone,… Continue reading Dear Beau,On what should be your first day of school. HuCarT Day -7
A 27-hour road trip. Denver-Philladelphia.
The other day one of my best friends asked if we had made it to Philly, as the night prior I had told her we were leaving for Philly [tomorrow]. My reply, “This questions makes me wonder if you don’t know that we are driving and as such, no, we have not completed the 27… Continue reading A 27-hour road trip. Denver-Philladelphia.
3 month post CAR T check-up: A Quick Trip to Philly- Part Two
Read part one here. Less than 48-hours we were back in Denver and my mom was driving us home from the airport. I checked the MyChart app to see if Beaudin's blood/lab results had posted. When I opened the app I saw a notification for new labs. I clicked on it and saw: "CSF cell… Continue reading 3 month post CAR T check-up: A Quick Trip to Philly- Part Two
Philly Magic Gardens
Philadelphia’s Magic Gardens (PMG) is an immersive mixed media art environment, a space that is completely covered with mosaics. It was created by artist Isaiah Zagar who used handmade tiles, bottles, bicycle wheels, mirror, and international folk art. He used these medias to chronicle his life. The space grew slowly from the onset. First as… Continue reading Philly Magic Gardens