sharing caemon’s message

Tonight we spoke at an event for BloodSource volunteers and donors (blood and blood products) here in Santa Rosa. We thought we would share our speech with all of you:

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Thank you for inviting us to speak today.

This is our son Caemon. In this photo, he is just a few weeks shy of three years old. Only one week after this photo was taken, our family found ourselves at UCSF Children’s Hopsital where Caemon would receive his first blood, platelet, and plasma transfusions. Just one week from the time this photo was taken, we would learn Caemon had leukemia.

All last summer prior to his diagnosis, our family went on numerous adventures, from camping on the beach and hiking in the redwoods to a road trip to the Grand Canyon. Exploring the world through our son’s eyes and experiencing life with him was a singular joy; Caemon was a happy, curious boy who loved being in the world–and we loved being in it with him.

But he did get sick quite a bit: he started last year off with pneumonia, went on to develop ear infections, bronchitis, colds, flus. He seemed to always be getting sick, recovering from something, or on one antibiotic or another. We were worried, but his pediatrician didn’t seem concerned. The consensus was that kids his age get sick a lot and that his immune system was still developing.

Then came the unexplained bruises all over Caemon’s arms and legs. We tried to chalk this up to regular little boy play, but something didn’t seem right. After a reaction to an antibiotic, Caemon had a blood test, which showed something far more malicious than a developing immune system or rough and tumble child’s play. In fact, his immune system was under assault. The blood test revealed two tell-tale markers of leukemia: high white blood cell counts and very low platelets. We learned from his doctor that Caemon’s low platelet levels put him at high risk for a major bleed, so we were rushed to UCSF where our whole world would soon change.

After just a couple of days in the hospital, including a trip to the ICU, Caemon was diagnosed with juvenile myelomonocytic leukememia, or JMML. JMML is the rarest and perhaps most difficult to treat of all childhood leukemias. It affects approximately one in a million children under the age of four—30-50 kids per year in the United States—and accounts for just one percent of all childhood leukemias. As a cancer of the blood, JMML attacks the bone marrow, causing it to spit out immature white blood cells. As a result, fewer and fewer healthy cells are created, causing patients to need many transfusions of blood products throughout their course of treatment. For the majority of patients with JMML, the only chance for a cure is a bone marrow transplant, and this, we quickly learned, was Caemon’s path.

The road to transplant involved several months of waiting to find a donor, and during those months, Caemon had to undergo four rounds of chemotherapy all while staying in the hospital. For anyone, no matter the age, being confined to a hospital bed for weeks or months would be depressing, but Caemon showed us that it did not need to be so. He took an interest almost immediately in the medical procedures going on with him. One nurse gave him a stethoscope which launched him into a full blown obsession with medical supplies. When he cooperated with his medicines, vitals, or dressing changes, his nurses would reward him with a medicine dropper or a roll of medical tape. His collection quickly grew, his supplies becoming his preferred toys, and instead of a cape or other super hero gear, he liked to wear blue scrubs and a nurse’s id badge.

At the age of three, he became something of an expert on his own care. He asked what medicines were being given and why; he knew when masks and gloves needed to be worn, and eventually, the nurses trusted him so much that they allowed him to help program his own IV pumps. Caemon astounded everyone with his perfect pronunciation of “echocardiogram” or his assertion that the way to treat his disease was to “push the chemo in, and the leukemia comes out.”

During all of this, he became well acquainted with the routines of his treatment, one of which was regular transfusions of platelets. With his disease, his spleen was trapping platelets, rendering them useless in the rest of his body. Caemon required over a hundred platelet transfusions during the five and a half month course of his treatment. He was also occasionally transfused with fresh frozen plasma, and he took in over fifty units of whole blood. The blood products he received allowed Caemon’s body to tolerate the intensity of treatments he needed to bring his disease into near-remission and to prepare him for his bone marrow transplant. Following his transplant, as we waited for Caemon’s new marrow to begin producing its own blood cells, he received daily transfusions of blood and platelets to keep him safe from bleeding and life-threatening anemia.  The fact is, these life-saving transfusions are a daily ritual for many children with blood cancer. Caemon’s nurses hung multiple bags of platelets, blood, and plasma each day. Trips to the blood bank happen multiple times a day on that pediatric oncology floor.

It’s important to stop and think about that for a moment. A person injured in an accident may come in to the ER requiring a couple of units of blood while doctors repair the injury and stop the bleeding. That’s what always entered my mind when I thought about blood donation—a scene right out of ER and the fight to stop someone’s bleeding. I never once pictured babies and preschoolers with cancer needing a hundred units of platelets or half as many units of blood just to get through treatment. But I know better now, and sometimes I think about all the people it took just for Caemon to receive the necessary blood products, how many people it takes to keep a fresh supply necessary to run just one oncology ward. And it’s not like we have an endless supply. There are times of the year when supplies run low, when they have to call for products out of the hospital. When Caemon was at UCSF, one such shortage required an order of platelets from Stanford, causing a delay in necessary treatment.

We are in awe of those people who regularly donate blood products, who make it a priority to do so because we have seen where that selflessness leads. Caemon ultimately lost his battle with leukemia just three months ago. However, many others will survive—and do survive–because of people just like you who go to their local blood banks and pull up their sleeves on a regular basis. You are told over and over again that each time you do this, you are saving lives, and you are, but you’re also prolonging lives of patients like Caemon so that they can receive the care they need; you’re allowing these children to have a little more childhood, giving families a little more precious time together.

No, Caemon did not live a long life, but in his short time here, our family saw, in the physical form of units of blood, platelets, and even bone marrow, physical manifestations of the generosity of the human spirit. Our son knew the depths of human kindness because of people just like you. Thank you for all you do, and thank you for hearing our story.

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12 thoughts on “sharing caemon’s message

  1. happygoluckytireegal

    I had no idea about the need for so many blood products. Like you I just imagined an ER and a couple of bags here and there.
    What an incredibly moving and important message you delivered. Very brave and very inspiring. Caemon lives on in so many ways. (( hugs ))

    Reply
  2. Selim

    Thank you for sharing Caemon with us all. His spirit shines so very bright and will continue to shine through his loving and generous moms. I am so sad for him and you all that he did not survive this fight. So often as I have read your blog these last months, I picture Caemon not as a little boy fighting cancer but as a little boy amazed at what the world offers. If we all could be a bit more like Caemon…

    Reply
  3. Carol Allison

    Thank you for posting the text of this beautiful talk. I was honored to present when the two of you spoke, and continue to be in awe of you both. You delivered it with astonishing grace and power, and you and Caemon once again have touched hearts and changed lives.

    Reply
  4. Charmaine

    I feel so blessed and inspired by your son’s story. What a courageous little guy with such an important message for all of us to carry in our hearts each day. You truly inspire others by sharing his story and reminding us how precious life is. We can do something and make a difference. I will remember your son’s story each and every time I give blood! Our family has had 3 cases of blood cancer and we do actively work with LLS to help others and share stories like Caemon’s. Thank you for your strength and courage to share.

    Reply
  5. emilyj67

    I find the stunning grace with which you are once and future mothers remarkable…much love to you.

    Reply
  6. Laura Betzler

    Thank you so much for sharing your story. I work at Bloodsource in the recruitment department and call donor every day to get them to come in and donate. Your story has inspired me to continue to work hard to do my job to the best I can. Thank you, and I’m so sorry for your loss. He sounds like an amazing little guy.

    Reply

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