We were called into a conference room today to meet with Caemon’s oncologist and the attending bone marrow physician. The room was full of coordinators and social workers, doctors, and a beloved nurse. We knew from the moment the resident came in to tell us that we were having a conference room meeting that things weren’t looking good, and by the way everyone looked so sorrowfully at us, the way everyone hugged us a bit longer, both of us were fairly terrified.

When we all sat down, the doctors placed a slip of paper in front of us, which showed the percentage of cells present belonging to the donor. It read just 37%. At this point, they wanted to see 95-100% of the donor’s cells. We also learned very quickly that there are a number of blasts–the immature cells, which this time are likely to be leukemia.

Caemon is very likely suffering a relapse of his leukemia. His transplant has not cured him; in fact, his donor cells and his cells are living side by side. There is no easy way through this.

His doctors shared with us the few plans they have remaining. First, they will attempt to trigger something called graft versus leukemia. This is when the donor cells attack the leukemia cells as foreign bodies and effectively kill off any remaining leukemia. They will start him on a chemo-type drug that is very rarely used but can be effective for JMML. Finally, they will give him some additional donor cells. Should they be able to get Caemon healthy enough, they may also try for a spleenectomy. These are what Caemon’s oncologist called her last cards. She told us as tears welled in her eyes that with our permission, she would like to play them.

I never imagined we would be talking relapse a month out of transplant, but the fact is our boy is very sick, and we are willing to take every measure we can to save his life.

We hope you will send him all the prayers and healing energy and positive thoughts you can. We need everything we can muster to save our boy.

77 thoughts on “relapse

  1. Dear strangers across the internet, my little queer family with our one year old, a mama, and a baba, are praying for your family and especially your little Croc. Debbie Friedman has a song of prayer I’ve always loved. Maybe it will bring a little peace to you?
    Music by Debbie Friedman
    Lyrics by Debbie Friedman and Drorah Setel

    Mi she-bei-rach a-vo-tei-nu
    M’kor ha-bra-cha l’i-mo-tei-nu.
    May the source of strength
    Who blessed the ones before us,

    Help us find the courage
    To make our lives a blessing,
    And let us say: Amen.

    Mi she-bei-rach i-mo-tei-nu
    M’kor ha-bra-cha l’a-vo-tei-nu,
    Bless those in need of healing
    With r’fu-a sh’lei-ma,

    The renewal of body.
    The renewal of spirit.
    And let us say: Amen.

  2. Jodi and Timaree, We prayed at the beginning, we rejoiced when things were turning around, and now we are still here with you, praying with all our might that Caemon will heal. My prayers include strength and courage for you both, and for your care providers.

  3. Really have no words for how awful this news is to hear. So so sorry and yet relieved to hear there are cards to play.

    I reacted by finding some reading to aid my understanding. I found one good (easy for layman to read) article some might like on treatments with Graft vs. Leukemia treatment and splenectomy, if others want to see it.
    (I like knowledge; I find it empowering.)
    It says the splenectomy is often done before the BMT, but obviously they opted not to.
    Also says the relapses can respond well to a second BMT and turn into remission.

    This has to go up from here. I have never met Caemon yet he is dear to my heart now through the medium of your posts, and all the love in them. Thinking positive thoughts! Many many hearts are supporting you.

  4. I don’t know you. I know your story and a little of Little Croc’s journey through Heidi and your blog. All I can say is I care deeply and will keep alight the special candle I have.
    Hold each other in hope.

  5. T, we haven’t met, but I’ve had a few short conversations with J in the halls of the oncology unit. My son was Caemon’s neighbor on both sides of the double doors. With your permission, I’d like to share this update on my son’s blog and facebook page, to ask people to pray for Caemon. I am praying for God’s miraculous healing for your little Croc.

  6. Lighting a candle here and sending healing thoughts. I’m so so sorry and hope the coming days bring some light and comfort to you all.

  7. Timaree and Jodi, I am sorry for this setback and am sending such love and strength to you — and Croc — that these measures will bring Caemon forward and soon.

  8. I was struck by what someone above said: “I have never met Caemon yet he is dear to my heart now through the medium of your posts, and all the love in them.” I am in that same boat, sending you love and light too.

  9. Heart breaking. I cannot fathom where you are finding your strength. Sending you all the love, light and healing energy in my heart for you mommies and your precious boy.

  10. Adding my prayers to all the others for Caemon. When my grandson was 12 he was in a terrible accident and they gave him less than a 1% chance of recovery. People around the world prayed for him and I thought if prayers were snowflakes we would be in the middle of a snowstorm right now. Today he is a feisty 16 year old and living life to the fullest. My wish (from Bulgaria where I live although I am English) is for a huge snowstorm for your precious little man, for his eventual recovery from the dreadful monster he is fighting. God bless you all. xx

  11. “Listen to the mustn’ts, child. Listen to the don’ts. Listen to the shouldn’ts, the impossibles, the won’ts. Listen to the never haves, then listen close to me… Anything can happen, child. Anything can be.”
    ― Shel Silverstein
    Even a homecoming for all three of you. This is my hope.

  12. I’ve been quietly sending my love and support your way. Now I’m shouting to the universe. I’m so sorry. Sending you all the strength I can. The snowflakes are falling.

  13. Oh, Timaree, I am so sorry to hear this news. I have been and will continue to pray for Caemon, you and Jodi, and all of the doctors and nurses!

  14. No, no no, he’s already suffered too much. I can’t stand hearing that his struggles are not over. You are in our prayers always.

    • Sending healing thoughts and picturing him thriving. Hugs. You’re in my thoughts as you discover more strength than you thought possible.

  15. Every healing thought I can muster is coming your way. Picturing him thriving and running outdoors. Picturing you relieved and inspired and happy. Hugs.

  16. I will do the prayer and ceremony of the of the hollow bone this morning. May you receive the help and guidance you need.

  17. As I sit here reading this, crying I want to let you know there is one more stranger praying for all of you. Please let your little Croc know that there are a lot of people thinking of him.

  18. Timaree I am sending so much healing love and light to Caemon and both of his mommas. I am so sorry to hear of this setback.

  19. I am praying… I am praying for a cure! I also pray for peace and for hope and for your strength as moms.

  20. Aim so sorry to hear of your latest news. My heart aches for all of you. Please know you are in my thoughts and prayers.

  21. We are praying for you all and sending loving & healing thoughts every day. My heart aches for you all and I hope and pray that these final cards of the doctor’s work.

  22. Thank you for keeping us up-to-date so we can help. There will be plenty of prayers coming from Dobbins, Yuba County and beyond. Stay clear in your love and enjoyment with Caemon.

  23. Oh Timaree and Jodi. My heart breaks for you and the journey you are on with your sweet little Croc!
    We continue to pray and hope everyday!

  24. My heart is open. I am sending all the love and healing I possess to you. I am happy to know that there are still treatment options. I know that all seems overwhelming. You are tired and weary. Let all of these words, these posts, these people, known and unfamiliar, help carry this weight with you. We are all rooting for you and for Croc! I love you! If you need an ear, please let me know.

  25. Caemon is in my thoughts and all of my prayers. Miracles happen every day, and everyone putting out their collective healing energy is a powerful thing.
    I will ask all of my friends co-workers to send out healing thoughts and prayers as well.
    Much love is coming Caemon’s way. ❤

  26. Definitely continuing to pray for you guys. I pray especially hard whenever my little girl wears her Caemon Crocodile shirt

  27. So sad to read for all of you, and I find myself in the curious position of being in tears over something I have just read and people I have never even met in real life. I can’t even imagine that meeting for you both. I have no words to offer besides the fact that I am thinking of you all, sending every single prayer that I can toward that beautiful little boy, and wishing you both hugs as you walk this very difficult path. I’m just so sorry.

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