It’s been nearly 3 days since our last update and it’s been wonderfully quiet here in Philly! We’ve been taking a break to recover emotionally, mentally, and physically. Harvey was discharged from the hospital on Thursday afternoon (Dec. 28th) and we’ve since been quarantined in our room at the Ronald McDonald House. He remains at risk for infection with his…
We’re so blessed to share that Harvey’s side effects from CAR T therapy continue to resolve. His voice has returned (music to our ears!) and most of the harsh neurological symptoms have tapered off or disappeared completely. What a relief! He remains a bit unsteady on his feet, but we’re hoping that improves over the coming days. He’s feeling well,…
We want to assume – truthfully, we need to assume – that we’ve seen the darkest hours of this journey. As his parents, the past 2 days of trials and tribulations made us question everything. How could we allow this to happen to our boy? Did we make the right decision to pursue CAR T? As the first light of…
EVENING UPDATE – 7:15 PM ET: Our hearts are heavy tonight. Harvey had a seizure this afternoon at 1:50 pm while sitting with me (dad) in our hospital room chair. He woke up from an hour nap in my arms and started moving around erratically, slowly at first, then kicking and shaking involuntarily with increasing force until it was clear…
Harvey remains in the hospital this evening. It’s been a long day of fevers, chills, nausea, and uncomfortable attempts at napping for him since 2 am. And he is so uncomfortable. He woke up from a nap crying, missing his brother and sister tremendously – especially since their 8th birthdays are tomorrow. He’s ready to be out of the hospital….
EVENING UPDATE – 9:30 PM ET:We’re officially in fever management mode. While playing minecraft online with his friends and sister tonight, Harvey spiked a high temperature of 104.5º F. and again became lethargic. We’ll keep close watch on him tonight. It was scary to see how fast he deteriorated and how high his temperature rose today (twice!). We hate the…
Hip, hip, hooray! it’s T cell day! This morning’s appointment has been months in the making. At 12:12 pm Eastern Time, Harvey received his reprogrammed T cells via a 5 minute infusion to complete his CAR T therapy. It was all over by 12:17 pm. He was monitored for an hour afterwards with vital sign checks every 15 minutes. At…
Harvey spent 14.5 hours at the Children’s Hospital of Philadelphia (CHOP) clinic the past 2 days receiving chemotherapy (fludarabine and cyclophosphamide) while playing his new-found favorite Xbox racing games. This is the first time he’s had fludarabine and we didn’t know what side effects to expect. Thankfully he’s had no nausea but was definitely more tired today. His immune system…
Hello (again) from Philadelphia! We said our tearful goodbyes to Hattie and Henry on Thursday morning (and grandpa & grandma Goldade who graciously offered to stay with them while we’re away) and we arrived late Thursday night via a flight provided by the Corporate Angel Network. (What an amazing experience – Thank you so much! We’d planned on driving 20…
Happy Thanksgiving! We are immensely grateful to be together as a family today, especially since we’ve learned we won’t be spending Christmas together this year. On Friday, CHOP (Children’s Hospital of Philadelphia) called to inform us that Harvey will need to return to Philly on Dec. 11th to prepare his body for CAR T therapy with the actual T cell…
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