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 that he wasn’t experiencing chills from high fever – he was having a seizure.
Since then, he’s received another CT scan and has been moved into the pediatric intensive care unit (PICU) here at Children’s Hospital of Philadelphia. He has lost most of his motor control, has difficulty keeping his swollen eyes open, and does not possess the ability to talk. We’ve been reassured that this is a well-known side effect that should be temporary and resolve itself with time. But how much time? It varies. There seems to be a sliding scale from a day, to days, to weeks. Oh, this hurts so badly. It’s devastating to see your child in this state. I’ve not known a pain like this in all his 20 months of hell. He knows what he wants to say and we know he’s aware that he can’t say it. The terror in Harvey’s eyes while failing to communicate is overwhelming. We’ve seen this same look before in our non-speaking, autistic son, Henry.
Harvey is preparing to have an MRI as I type this. This will provide a better, more high resolution image than his CT scans. I’ve never been short on words – but tonight, I’m running on empty. Please, Harvey, return to us. The silence in our room tonight is deafening. We love you so much, Harvey Boone! Talk again soon, bud.
MORNING UPDATE – 12:45 PM ET:
It was a miserable night for our precious boy and a terrifying early morning for all of us. It’s confirmed: Harvey is experiencing cytokine release syndrome, also called “cytokine storm,” a well documented side effect of CAR T therapy T cells. His high fevers have continued, nearly reaching 105º F at times. But more concerning, at 4 am, Harvey showed us that he understood what we were saying, but he couldn’t talk back to us even though he was willing and trying. He had a sense of panic in his eyes not being able to get the words to his lips. He was quickly carted over for a CT scan which thankfully showed nothing of concern at this time. (These aren’t the holiday pictures we wanted! See actual CT scan image below.) He also developed a high heart rate, bouts of vomiting, noticeable swelling of his face/hands/feet, is possibly experiencing hallucinations/vertigo (he was reaching for things not really there/throwing an invisible ball), and has been continuously lethargic. This poor kid! 🙁 They informed us that if his blood pressure started to drop or needs oxygen, he may be sent to the ICU. Thankfully, his blood pressure and oxygen levels remain stable and we hope to keep it that way.
His doctor and care team have decided, given his current state, he’s at risk for something called ICANS (immune effector cell–associated neurotoxicity syndrome). Simply put, it disrupts the blood brain barrier and can be life threatening. To greatly diminish this risk and to better manage side effects, they have given him a steroid (dexamethasone). They try to avoid giving steroids to CAR T patients since it can hinder the important cancer-killing work of the T cells, but the benefits far outweigh the risks in this instance. Things are slightly improved since 4 am with some words from time to time, though he is still battling fevers (most recently 103.5º F). They are also giving him seizure medication (Keppra) prophylactically since he’s at a higher risk of having a seizure.
It’s hard to believe we were also in the hospital exactly 8 years ago (on better terms) with our newborn twins. Along with Harvey, please keep our twins, Hattie & Henry, in your thoughts today as they celebrate their 8th birthday away from us. Happy 8th birthday, Hattie Bea & Henry Beau – We miss you so much!
We hope to not experience anything like these past 12 hours ever again and long to share better news in our coming updates. Thank you for checking in on our warrior!