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”
Sending love and prayers for a miracle, so sorry you are going through all this.hug to Caemon from me.Liz
Noooo! Poor little guy! Stay strong buddy, you can beat this!
We are sending every prayer we have to Caemon and have asked our friends and family to do the same.
So sorry to hear this. Prayers are coming to you from north of the border.
God Bless and well wishes. Will continue to pray that Caemon will beat this.
Prayers, hugs, hope, light and love
i’ve been thinking about you all all day. sending love, light and more fight to you.
Sending all the good thoughts I have. ♥ ♥ ♥
Sending love and healing thoughts.
I’m going to church tomorrow and I’m going to request a prayer for you during the service–everyone in the church, praying for your family. This is simply too much and my heart is heavy with this news. There are still cards to play, let them be miracles.
Blessings and prayers x
There are simply no words to express how sorry I am to read this update. I am sending every bit of positive energy I have so that the two of you might find strength and Caemon might find healing.
Thinking about you and pulling for Caemon.
[…] To read more, here is the latest news: https://cisforcrocodile.wordpress.com/2013/01/26/relapse/ […]
Not the update I was hoping for when I logged on today. Hoping and praying that the doctor’s last cards turn out to be the aces to win this game. Lots of love.
Sending love, prayers and positive energy for all of you.
Our family needs you sweet boy. You make us whole. Stay with us. I love you. We all love you so much. Your Grandma
My heart is with you and yours and I have asked my network of loved ones to hold you up to the Universe as well.
Holding your family in my heart and praying that your dear son finds his way to wellness. Strangers in Vermont are sending you all love and light.
Sending prayers and hope and strength for your sweet boy and his parents.
Sending love, warm thoughts, and prayers from our family to yours.
Love and prayers for your family.
Sending lots of loving prayers,
The Butterfly Fund shared Caemon’s story & our prayers will be with you as you & your little man. 2 Corinthians 4:16 Message version