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.
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? http://www.youtube.com/watch?v=pHKo3CjuzpY&noredirect=1
MI SHEBEIRACH
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.
My heart is breaking with you. I’m so sorry. I’m hoping with everything in me these cards are what turns it around. Sending all the love and light in the world.
I am so sad to hear. My heart aches for you all. Lots of love and light! XXOO
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.
Ooh T I have no words. I’m so sorry and scared for lil croc. I’m praying so hard
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.
http://flipper.diff.org/app/items/info/3455
(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.
Bless you, Kathy, for finding something both hopeful and useful. It’s such a bleak time, you’re an up.
Oh, Timaree and Jodi. I am more sorry than I can express. Wishing so hard for your miracle
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.
Tricia
Sending all the hope and strength and wishes that I can muster up. Lots of love xxxx
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.
Sending love and healing energy.
Oh my heart is breaking for you. Positive thoughts headed out into the universe from all over.
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.
Sending love and light.
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.
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.
So so sorry to hear this news! Keeping you all in my thoughts and praying for these new actions to turn this around! {{{hugs}}}
Heartbreaking news….praying for healing and remission. Continue to choose hope. Sending love!
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.
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
Still praying, everyday. God has miracles. My heart is breaking for your entire family.
“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.
For such a wonderful family to suffer so much… It just seems wrong. May this be the last darkness before a bright healing dawn.
One more snowflake here for you. So much love.
My heart breaks for you and your family. I am reaching deep inside and sending lots of love and prayers.
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.
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!
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.
Every healing thought I can muster is coming your way. Picturing him thriving and running outdoors. Picturing you relieved and inspired and happy. Hugs.
I will do the prayer and ceremony of the of the hollow bone this morning. May you receive the help and guidance you need.
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.
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.
I am praying… I am praying for a cure! I also pray for peace and for hope and for your strength as moms.
This is too terrible – I can hardly believe this could happen. We are both in tears this morning and holding your family close.
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.
Thinking of all of you, especially your strong, brave little Croc.
Sending so much love and positive energy. My heart is aching for you all. There is still hope!
This is a sad downturn, but there is still hope. Reaching across the miles to send our prayers and hearts with you always. Roger and Linda
Sending love and hoping with everything I’ve got that these cards turn things back around.
Sending Love, light and each and every prayer I pray.
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.
Thinking of you all and praying hard. May these cards be the cards you need to fight back this horrible disease.
Sending prayers, light, and love to both of you, and especially to Caemon. My heart breaks for you right now.
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.
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!
So sorry to hear of this setback. You’re all in our prayers. Stay strong!
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.
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. ❤
Dakota and David add our voices here. We’re sending light–and lighting our good luck candles.
Definitely continuing to pray for you guys. I pray especially hard whenever my little girl wears her Caemon Crocodile shirt
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.