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. 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.

  2. 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.

  3. 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.

  4. Our family needs you sweet boy. You make us whole. Stay with us. I love you. We all love you so much. Your Grandma

  5. 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.

  6. 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.

  7. The Butterfly Fund shared Caemon’s story & our prayers will be with you as you & your little man. 2 Corinthians 4:16 Message version

Thank you for your replies. We appreciate every comment.

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s