Day 645 – December 23, 2023

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!

17 Comments

  1. Heavenly Father … please watch over your children . Please be with Joe and Lindsey so they can find peace and get rest . Lord be with those beautiful twins who are celebrating a birthday in such a special season but such tough circumstances . Let them see your Hope and Light . Then again I pray for Harvey and this amazing medical team who is watching so closely to assist in his health and healing . Lord let Harvey get rest and heal. Let his preciously created body fight this war and win it. In Jesus Name , Amen

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  2. Oh shoot! What a scary night/morning for you all. Praying that Harvey pulls through this latest part fast.
    Happy birthday to Hattie and Henry!

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  3. I just hate to see Harvey so sick; he is too little to experience this level of illness. It just breaks my heart.

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  4. Sending our love and prayers for parents and Harvey. The twins are enjoying some birthday fun but miss you all so much. We are ready for your return with Harvey, the warrior, soon 💕

    Grandma and Grandpa Goldade

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  5. So sorry to hear this once again. My prayers are with you Harvey! May God be with you each step of the way. Prayers for your Mom and Dad also as know they need them also.
    Happy 8th Birthday to Hattie and Henry! 🎂🎂🎄🎄🎁🎁🎈🎈

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  6. Praying for Harvey and also happy birthday to the twins,may the side effects subside and Harvey continue to fight.and heal

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  7. Lifting, your little warrior in prayer! So sorry, to read, that he had such a difficult day! Prayer for Dad and Mom too! Hoping with each day, he gets better and better!!
    An old friend of Grandma Lisa,
    Jennifer

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  8. We love Harvey. We are thinking of you and cheering for you. Leo was looking at pictures on our phone and we talked about when you came to visit us. Specifically where Harvey and Leo had red checks from riding their scooters up and down the sidewalk for over an hour.
    So much love from Steve, Jenny, Leo, Mylah, Riley

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  9. Our hearts are heavy with you and we are praying that he recovers quickly and for strength for you all. Looking for better days soon!

    Terry and Valerie

  10. This is so hard to read. I can’t imagine how terrifying it is to witness in your child and how horrible Harvey must feel. The only thing that gives me a shred of comfort is knowing that this is normal side effects of this treatment and his care team knows what do do when it happens.

    You must feel so helpless. All you can do is tell Harvey he’s safe and this too shall pass; it’s temporary. He’s proved to all of us that his amazing spirit will prevail. We would all trade places with you Harvey.

    Ms. Rhonda

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  11. I am so sorry for all you are going through. I can’t imagine as a parent myself, how you both must ache for your sweet Harvey.
    What I know is our God is amazing! Look at what you have made it through in your lives already. With faith, family and friends, you will get through this!
    Prayers that all of these reactions are normal and your sweet warrior and those cells are fighting like the super hero we know!
    Love and many prayers from MN!
    Ms. Pam 🙏

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  12. Our prayers to your family as you go through these difficult times. I have faith that you are in the right place and your medical team will see Harvey through this challenge.

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  13. We miss you Harvey and love you VERY. MUCH. Grandma and grandpa are excited for the day you come back home. Henry is looking at pictures of you, mom and dad. When he came to a picture of you he threw his arms out and had a smile. You are our fighter and our hero. You are a brave young man. We are always thinking of you, mom and dad.💕💕💕💕
    Love grandpa Dale & grandma Lisa.

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  14. So sorry your all having a bad day.But I’m praying it’s just for today, hopefully tomorrow will be better!!!! Sending my love and prayers your way always!!❤ Happy birthday Henry and Hattie!!❤❤

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