Update on Cheeky

Thank you everyone for sending well- wishes and praying hard for Cheeky. He has been very busy this past week admitted at Smilow. Tired, emotional, and in pain from the treatment. He has tiny windows of time when he wants to play a little or get out of bed, but he really just feels too awful to do anything but snuggle in bed or be held right now. 

What happened?

Naaman has a CNS (central nervous system) relapse of his leukemia. He was considered “in remission” but the treatment continues because a tiny trace of leukemia cells can still hang out and flare back up – which is what’s happened to him.  This is possible, but not expected or normal.  

Does this mean he starts all over?

Sort of. He starts a new treatment plan (still in the works) which will include “blocks” of treatment including IV chemo, oral meds, and intrathecal (into spine) meds.  Unfortunately this time he will need radiation.  Likely he will be in more intensive treatment for six months, followed by a longer maintenance phase.

Does he need a transplant?

We are delighted to say no… for now. Tests on his bone marrow sample look clear, but we are awaiting further analysis. We also await feedback from Children’s Hospital of Philadelphia (CHOP) who are experts in his rare type, Philadelphia-like A.L.L.  If the leukemia spreads to the bone marrow, the treatment is more intense and more risky than we want to think about. And none of us are a match for Naaman.
PRO TIP… if you are healthy and able, please enter the donor registry at bethematch.org.  You may never be called to donate, but you also may save someone’s life.
 

What's the plan for now?

He is on Day 6 of Block 1.  This block will be 29 days, all inpatient because his counts will drop so much that they need to keep him. He will have steriods, chemo, and lumbar punctures, and another bone marrow check after this month to look again.

Again, thank you Team Naaman for your love and support. Wear your Cheeky socks and gear, and keep praying for healing.  We will give updates as much as we can, hopefully some happy playing pictures from his hospital room soon.

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18 thoughts on “Update on Cheeky”

  1. Avatar

    Sending all my prayers and love to the bravest little boy I know. God has blessed you with the such a strong, determined and loving family. Bless you all.

    Papa

  2. Avatar

    Dear Nicki, my ❤ goes out to you, and little Naaman. Don’t forget the strength of the Lord is with him, and even when it looks dark God is behind the scene working things out. I am praying constantly for him and know that God has this. Love you honey. You are a great mom, blessings will be coming your way very soon from God. Praying for a cure ….rapid cure.

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