Thirty Days of Caemon: A Legacy of Love and Life
From the early days of Caemon’s illness, we began hearing stories about how Caemon’s experience was touching–and even changing–the lives of others. Since his death, many people have recounted ways in which their lives have been altered either through knowing Caemon directly or by reading and hearing about his story.
Throughout the coming thirty days, we will be sharing many of the ways in which Caemon’s life and death have impacted others in his circle. Each day we will focus on just one of the many large or small ways in which Caemon has touched those around him. If you have a story you would like to share or an example of a way in which Caemon’s story has impacted you, we encourage you to send it to us at cisforcrocodile@gmail.com. We look forward to sharing our beautiful boy’s legacy with you.
Day 1: Inspiring Blood and Bone Marrow Donation
From Jodi
During the course of Caemon’s 169 days of treatment, he was given 50 units of whole blood, and twice that many units of platelets. This was necessary in order to replenish his leukemic blood. These infusions kept him alive during treatment, which allowed doctors to nearly eradicate his leukemia before his bone marrow transplant. Without a constant supply of donated blood products and bone marrow, doctors cannot treat or cure blood cancers.
When Caemon was first diagnosed, there was a beautiful outpouring of community support, and people wanted to help in any way they could. Without any prompting from us (we were at Caemon’s side, cut off from the outside world), people from all over went to their local blood banks and donated blood; they also signed up with Be the Match to become bone marrow donors. One of my dearest friends and colleagues organized a blood and marrow drive with her students when Caemon was first hospitalized. Over a hundred people signed up for the registry that day, an astounding number by any standard, especially given the age and health of the new sign-ups. These people would be on the registry a good while, giving them many years to become a life-saving match, but one girl wouldn’t have to wait long. Only a few months after becoming a donor, she was called as a potential match. How many other lives will be saved because of those who signed up because of Caemon?
It’s impossible to know, but we do know that his story and his image have been used at numerous blood and marrow drives since his death. We have held drives specifically in his honor, one in particular for his fourth birthday. Caemon has even aided in blood donor recruitment internationally: a representative at a university in Dubai wrote to ask if he could use Caemon’s photo on a large banner promoting blood donation. Of course we said yes.
When attending these events, I have been able to thank the donors and tell them a little bit about my son. I roll up my own sleeve and regale the phlebotomist with stories of Caemon’s nursing aptitude, how he called platelets “corks” like his caretakers taught him, how he loved different colors of coban (the stretchy bandage placed over the cotton ball after a blood draw), and how he named the sharp needle that pierced his arms, “blood poker.” They are amused at my stories and grateful for every drop donated. I’m grateful too, because I know that blood products gave my son a fighting chance; it gave us more time with him, which is priceless. His bone marrow transplant, made possible by an anonymous donor, gave us hope, as it should. Despite his outcome, it is still the best chance most kids with JMML have at a cure.
C is for Crocodile 
That is one thing I miss doing, being a blood donor, but I’m medically unfit to ever give blood again, neither can I ever donate my organs they are all too damaged. My hubster donates every time he can, here in the UK you can only donate every 3-4 months, I’m hoping my girls will also be donors when they are old enough. I find it so sad that more people don’t donate, I know that here they don’t get paid for being a donor but it’s 15-30 minutes of their time that saves so many people’s lives.
I am looking forward to a month of Caemon love 🙂 So many ways, including today’s mention of blood and marrow. The faces of love are limitless.
Vicki