Day 644 – December 22, 2023

Harvey remains in the hospital this evening. It’s been a long day of fevers, chills, nausea, and uncomfortable attempts at napping for him since 2 am. And he is so uncomfortable. He woke up from a nap crying, missing his brother and sister tremendously – especially since their 8th birthdays are tomorrow. He’s ready to be out of the hospital. He’s ready to be home. πŸ™ His fevers continue occurring every 4-6 hours, getting as high as 104.7ΒΊ F. this afternoon. Fevers, while so unpleasant, help create an environment for his T cells to thrive, and that’s exactly what we want! His vitals remain stable and his medical team is confident that he’s experiencing side effects from the T cells he received (fairly common). No signs of bacterial, fungal, or viral infection – Very good news for us even though it’s tough seeing him so uncomfortable. He’ll remain in the hospital until his fevers break, assuming no other side effects occur. As I type this, he mentioned that it appears the room is moving, like he is “floating in outer space.” We’re checking with his doctor about neurological side effects right now, but it’s likely vertigo (yet another common side effect).

This morning, we received results from Harv’s bone marrow biopsy and ClonoSEQ test from November. Important note: These results are from bone marrow sampled before Harvey’s CAR T therapy on November 13th. Therefore, these results will not show how effective his T cells are or are not. That said, the results do show he is still MRD positive (+) meaning he has detectable cancer in his body. However, it is much less cancer detected than the previous October test. We now know he went into CAR T therapy with very little detectable cancer in his body, which is a very good place to be. Now, we sit and navigate his side effects, wanting so badly for the T cells to work and kill the remaining cancer within him. Upcoming ClonoSEQ test results will reveal the effectiveness of CAR T therapy for Harvey – we expect to receive them late in January or early February 2024.

Despite the challenging day, there were a few bright spots, particularly this morning when we played a few games of darts in bed and watched “How The Grinch Stole Christmas.” We continue seeking comfort and rest for our warrior tonight. Thank you for all the love you’ve sent our way! ❀️


  1. Sounds like a battle going on in his body, but hoping and praying the cancer cells will be gone! Continued prayer from all my prayer warriors! We are going to beat this thing and each day we will be closer to complete healing! Great Gram in on her knees!

  2. Continue fighting those nasty cancer cells Harvey! You can do it, as you are such a strong young boy. Many many prayers are out here working for you, including mine. Have a very nice feverless and Happy Christmas Harvey! God Bless you! πŸ’–πŸŽ„πŸ’ŸπŸŽπŸŽβœοΈπŸŽ„

  3. My thoughts and my prayers are with you guys πŸ™πŸ»πŸ™πŸ» thank you for sharing all the updates on him!!!! I missed him so much and Lucas my son made a card for him and say he wants to say meet him one day, as I was reading the post he ask me why I was sad 😒 and I explained to him the best way possible.Harvey is very brave and I pray πŸ™πŸ» him and your guys will receive the healing β€οΈβ€πŸ©Ή it has been on the search all this time… wishing Hatie and Henry a joyful birthday πŸ₯³ I admire you guys strength love and patience I can only imagine how hard this process has been for all of you guys blessings to all of you ❀️ warm hugs πŸ€—

  4. So sorry Harvey is so uncomfortable. What a warrior! Throwing darts and finding some joy through it all. He’s simply amazing!

    Sending lots of hugs and prayers your way!

    Ms. Pam πŸ™

  5. Thinking of you all. Happy, Happy Birthday to Hat & Henry tomorrow from Bea (and me).

    Sending love and prayers
    Joann & family

  6. Sorry your not feeling well, but we all are sending hugs, prayers, and Lotta love your way. Stay strong little man we all have your back. You rest,play,and keep thar smile going, we’ll take care of the prayers. Love you❀

  7. Harvey, you keep fighting I know you are fighting a hard battle, I fought it as an adult so I know how hard it must be for a child . You got this I have been on your journey since. Gabriel told me you were sick you was such a good friend to him. We are praying hard for you everyday.
    Michelle and Gabriel


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