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. πŸ™‚

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!


  1. Good news! Over this hump! Hopefully the healing process is going on as we continue to pray and believe for compete healing and restoration! Prayers are continuing as each day passes! Love to my guy and you guys rest when you can!

  2. No, I’m crying tears of happiness . He’s one tough cookie , those have to be the best words parent would ever want to hear how always love and prayersπŸ’œπŸ™

  3. The best words ever muttered! Chuck prayed over Harvey and if you know Chuck, his tears do not bother him, so he cried over little Harvey. Then, Lisa called us to say he was talking & then eating, & our hearts feel so much better! We love little Harvey!

  4. Great news!!! I’m so happy to see this post❀️. Continued prayers for you all!

    Also, thinking of the twins as they celebrated their 8th birthday on such a scary day for Harvey.

  5. Harvey,
    You are AMAZING! And glad to see your smile and eating a cake pop!
    Positive thoughts and lots of prayers for you buddy!
    Ms. Pam

  6. We were so happy to hear you chat with your sister today, Harvey! We miss you! Henry looks at my Google photos of you and Hattie always wants to see you on FaceTime. You said you would never stop fighting and you are unstoppable! Can’t wait to see you and your parents!

    Grandma and Grandpa Goldade

  7. We are so grateful for the better news today!! So glad he was able to leave PICU. That little video was such a heart-warming Christmas Eve gift! Praying for more positive days!

    Terry and Valerie

  8. Way to go Harvey! Love seeing you are doing better and I know you will continue doing so each day. Love the little heartwarming video. My prayers are with you all the time. πŸ™πŸ™πŸŽ„πŸ’ŸβœοΈ

  9. A Christmas miracle! Gramma Lisa K. sent me a update text with the fabulous news. I received her text while with my family on Christmas Eve day and it brought happy tears. Keep fighting Harvey; you have a world of loving suppporters!

  10. I’m pulling for you. Thoughts and prayers are with you this spring your mom and dad have to bring you out to the can pet the pony chase ducks and chickens and drive the tractor good luck I’ll see you this spring

  11. Merry Christmas, Goldade family! I’m grateful to read your latest update and that effects from the cytokine storm are improving. What a scary few days you’ve had. Thank you for sharing Emily’s story, too! It was encouraging to hear that she doesn’t remember much from her CAR-T treatment – just the good things, spending time with her parents. ❀️

    Keeping your family in our family’s thoughts and prayers!

  12. Hugs to you all and sweet little Harvey! So happy to hear that things are improving. Harvey is always in my prayers.

    Monica Hansen


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