the day it all began

A month ago today our world was thrown off its axis. We were taking our son in to see the pediatrician for a reaction he was having to an antibiotic. He was on the antibiotic because during his three year well child doctor’s visit, his doc had found an ear infection. When he was sick with severe diarrhea for two full days, we stopped the antibiotic and called his doctor’s office. The nurse on call told us to keep giving it to him and give him probiotics, that he would be just fine. The problem was our boy wasn’t eating, and he wasn’t drinking enough, and he was getting sicker. We told the nurse we would not be putting him back on the antibiotics, and she made us an appointment with a doctor we had only seen once or twice. I remember being disappointed that we were seeing her because we hadn’t exactly loved her before.

When Caemon’s appointment time came, the doctor and nurse who were present agreed that it was the right thing to do to stop the antibiotics, The doctor was concerned. She began feeling Caemon’s abdomen and stopped to comment that she could feel his spleen–and then his liver. She wrote a new prescription and then sent us for blood tests: a full CBC, electrolytes, even a test for Mono.

We continued on with our day. We were to pick Jodi up from school, so we headed to the grocery store for a snack, and I proceeded to pick up all kinds of immune boosting supplements and herbs for Caemon. I wanted to work on helping him not catch so many bugs this year. I feel so silly in hindsight. No amount of elderberry was going to stop the freight train headed our way.

We got home, unpacked the car, and my phone rang. It was the doctor who had seen Caemon, and she had lab results. Very slowly, she began to tell me that his white blood cell count was very high. She then informed me that his platelets were very low, that he could be at risk for bleeding. She mentioned immature white blood cells, and finally she mentioned blasts. I can scarcely remember what she said next, only that the word “leukemia” came through the phone, and then “children’s hospital” and “tonight” and “oncologists.” When she asked if Caemon had a fever, we checked his temperature. He did. This meant he would need to go to the emergency room locally and be transported via ambulance to San Francisco. I remember asking her how to do this, and this doctor told me to pack some clothes, to pack some things for him, that we could expect to stay a few days. And that was that. Our boy ate a few pancakes, and we hit the road. We spent five hours in the emergency room in Santa Rosa, and then we were put in the back of an ambulance while Jodi followed in the car.

When we arrived at the hospital, Caemon was still strapped in his car seat to the gurney. I followed as the medics took us up to our floor, and when the elevators opened, and we rounded a corner, I saw the sign, “Children’s Oncology/Bone Marrow Transplant,” and I remember thinking, “That’s not for us.” We were almost immediately given chairs to sit in as three doctors came in to speak with us about what this likely was: probably leukemia, maybe a virus. You can bet we hoped for the virus. An hour or two later, after they looked at his blood, they came in with more chairs, this time in the hallway, and they confirmed they found leukemia. The fellow on staff at the time was optimistic, tossing around 90% cure rates and “ALL” and “AML.” I remember a burning heat traveling through my body up to my head as the news rolled in, and then I began shaking. My hands trembled as I signed paperwork to approve using Caemon’s samples for research, to approve treatment, to approve his first platelet transfusion, a spinal tap, a bone marrow biopsy, general anesthesia, a dose of chemotherapy to be injected into his spine. I couldn’t believe the blur of papers one had to sign for one’s kid to have leukemia. I must have wondered whether I could forgo the signing and just take my boy home. We didn’t want this leukemia business. We just wanted to be left alone. After all, he just had an ear infection. He was reacting to the antibiotics. He was fine!

Neither Jodi nor I slept much that night. My brother came to hold us up and stayed throughout the next day as we experienced our first pre-op and post-op Caemon, and then our next sit down talk with his oncologist who shared with us that his was not a garden variety leukemia. It was, in fact, the rarest form of childhood leukemia, which would need to be treated very differently. Again, the burning heat hit my face, and the anxiety multiplied, and the tears came–again, and again, and again.

I can’t help but wonder when all of this began. We are certain he was sick when we went camping in Humboldt at the beginning of August. In fact, I think this is when he first started to feel it, for he kept saying he didn’t feel well, but there was no sign of anything wrong with him. He got pretty bruised up on that trip, and the bruises didn’t heal. But I look at the photos from this amazing summer we had, and I wonder if he was sick at the Grand Canyon, whether he was sick when we took him to the air museum, if he was sick at the beach or when we went swimming. We don’t know when this mutation was triggered, when JMML decided it was ready to wake up and rain its destruction on our son.

It’s hard to believe we have been at this for a whole month. I have learned about things I never wanted to know. I know how to put an oxygen saturation monitor on my son’s toe. I know how to apply lidocaine so that IV pokes don’t hurt so much. I regularly know his platelet and white blood count and neutrophil levels. I know how long it takes for platelets and fresh frozen plasma and red blood cells to transfuse. I know how to administer oral chemotherapy. And soon, soon I will know all the ins and outs of bone marrow transplants.

A month out, that bone marrow transplant is where all of our hope lies. As scary as it all is, that’s what is going to cure our boy and help send our world spinning right-side up again.