We returned home from Philadelphia, PA, on Thursday, November 9th, the day after our last update. Harvey had a successful T cell collection, and we are currently awaiting a callback to return to Children’s Hospital of Philadelphia (CHOP) in the next 4-6 weeks. When Harvey returns, it will mark the beginning of his actual CAR T therapy, and he’ll receive his reprogrammed T cells that, we hope, will help his body locate and kill all remaining cancer cells. There are potential side effects with this treatment and, for this reason, we’ll remain in Philadelphia for at least 5-6 weeks after he receives his new T cells. It’s safe to assume we’ll end 2023 and begin 2024 in Philly.
Until we return, Harvey will continue receiving chemotherapy to keep cancerous cells in his body to a minimum. On Monday, he received more intrathecal chemo, had another bone marrow biopsy (that’s 5 total if you’re counting along with us), and is taking a daily regimen of oral chemotherapy and steroid pills. Ugh. On Tuesday, Harvey was overjoyed to return to school after being away for more than a week. So, in summary, Harvey is back to his normal schedule, taking chemo, and awaiting a phone call to learn when he’ll get his CAR T therapy infusion.
Last week on Friday morning, after being back home in Minnesota for less than 24 hours, our oldest son, Henry, had a seizure unexpectedly during breakfast. He became tired, seemed to have difficulty opening his mouth, then became completely unresponsive. After a call to 911, an ambulance ride to the same hospital Harvey has come to know so well, and a few hours in the emergency room, Henry was awake and with us again. We’ve always known that kids with autism like Henry are at an increased risk for seizures, but he’s never had one (that we know about) before Friday. It scared the hell out of us. We are so thankful that he’s doing well since then, yet under close surveillance for signs of more possible seizures. We’re in the process of trying to find a neurology department with appointment openings that aren’t months out. We hope to get Henry seen and evaluated before we return to Philly with Harvey. <fingers crossed>
Meanwhile, our daughter, Hattie, has been doing great: Healthy, back at school, and playing hockey, yet concerned for her brothers. It’s easy to overlook medically quiet areas sometimes – so we don’t want to forget about Hattie. We love you, Hat! On Sunday, all 3 kids had an amazing time at Nickelodeon Universe inside the Mall of America. We were able to attend another awesome and free (to us) event hosted by Hope Kids. They’ve provided Harvey and our family with so many tickets and invites to wonderful events over the past year – Movie theaters, pool parties, zoo visits, children’s museums, baseball games… Hope kids has given us some opportunities we wouldn’t have had otherwise. Harvey even made it on TV this summer during a Twins baseball game (he received Champions Club tickets – the BEST there are!) where he ate all the candy his heart desired, greeted the players in the dugout before the game, and even took home an actual foul ball! (See video & pictures below.) Thank you for another amazing experience for our family, Hope Kids!
A lot of moving parts. A lot of difficult moments. A lot to be grateful for. Thank you so much for the love and support you’ve sent our way as we continue navigating this journey. Our next update will likely include new information about our return to Philadelphia after we receive a phone call from CHOP. Stay warm & healthy – I know we’re going to try to!
Harvey & Dad appear above the FOX sports logo during a Twins game.