Day 646 – December 24, 2023

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 Christmas Eve found it’s way into our PICU room today, so did newfound hope. Harvey is more awake, alert, and aware. The symptoms of cytokine release syndrome are becoming noticeably muted and he is slowly getting his words back. He has a long way to go, but what a phenomenal start! We share with you one of the most meaningful videos we’ve ever captured. And it’s only 6 seconds long.

“I love you so much, too.” We’ll never let him forget how much we needed to hear this and how he delivered. It was a reminder that this horrible uphill battle may one day deliver us a beautiful aerial view. We realize we’re not completely out of the woods yet, but we’ve had enough bad news to share. Let’s now focus on the good!

Harvey was stable enough to transfer out of the pediatric intensive care unit (PICU) this evening at 5:30 pm eastern time! He’s returned to a standard hospital room within the oncology unit on the 3rd floor. He’s no longer being monitored for seizures (and he couldn’t be happier about it!). He had EEG leads glued to his head for the past 24 hours and he hated every moment of it. He will continue receiving anti-seizure medication (keppra) since he’s still at risk for seizures. He’s also being weaned off dexamethosone (steroid) and anakinra (interleukin 1 antagonist) which helped to calm the storm. Literally: They calmed the cytokine storm that caused these unfavorable side effects. We needed these meds to be administered to stop the serious side effects from the cytokine release syndrome. But we also knew that doing so may not allow his T cells to be the best cancer killers that they can be. Yet another worry to add to our collection. Today, Harvey’s CAR T doctor gave us a different perspective. “The very first girl (Emily Whitehead) that had CAR T also needed steroids, and much more of them, to stop her side effects as well as other medications.” Today, 11 years later, she’s the poster child for successful CAR T therapy. Wow! That’s all we needed to hear. And lastly, both Harvey’s CT scans and MRI showed no damage nor areas of concern for his brain after having his seizure yesterday. What an amazing gift just in time for Christmas!!

Though I paint a pretty picture with the words above, the reality is that a lot of the side effects have yet to reverse completely. Also a reminder (in case you haven’t followed Harv’s story from the beginning) that steroids make Harvey agitated, mad, and angry. We have to prevent him from literally ‘Hulk smashing’ things within reach when upset by something trivial. It’s unlike our normally calm, kind, go-with-the-flow, happy-go-lucky boy. But we’ve seen this plenty of times before and always blame the steroids, never Harvey. 🙂

Thank you for your loving and supportive messages on Harvey’s facebook and web sites: They helped carry us through the dark of yesterday and last night. They were the words that embraced us when our world felt like it was ending. We are so grateful for the improvements we’ve witnessed today, and we are so grateful for you!

In the ICU a few hours after the seizure.

Harvey being monitored for more seizures.

Feeling better this afternoon.

Leaving the ICU!

Back in a standard hospital room & eating a cake pop.