Oakland bankruptcy attorney James Pixton talks about learning that his baby son had cancer.
We have four children. Our oldest is fifteen. He’s a freshman at Encinal High School and plays on the water polo team. Our youngest, Porter, is eight. He’s in second grade at Franklin Elementary. It’s always easy to remember when the crazy, frightening times started: on the day he was born in 2003.
Porter was born by c-section on November 25, 2003 at Kaiser Oakland. I took a video camera into the operating room, planning to catch Porter’s first moments after hatching digitally. Unfortunately, in my jittery state as a husband watching some pretty major surgery take place on his wife, I got a little confused. Unknowingly, I hit the Record button and started filming the floor. Then, when the time came to actually film Porter’s grand entry into the world, I hit the Record button again–and stopped the recording! Missed the whole thing!
The first few hours of his life seemed uneventful. Jen was doing well after being stitched back up and was sleeping. I went home to take a shower and grab a nap. While I was home, I got a call from a nurse back in Oakland saying that Porter was being moved to neo-natal intensive care and asking for authorization to do a platelet transfusion. His blood platelets were low and he needed the transfusion to avoid possibly bleeding to death on the inside.
It turns out an alert doctor had noticed little red dots forming on Porter’s skin: petechiae. This meant that his blood wasn’t coagulating. During those first few weeks, he was in and out of the hospital with respiratory problems and other issues. He always had band-aids on his heels from getting daily pricks for blood draws.
Because he was so small and weak, the doctors put off doing a bone marrow aspiration until he was bigger and stronger. A bone marrow aspiration is basically where they take a small, sharp instrument that resembles a corkscrew and twist it into the bone on the back of your pelvis. Then they yank hard to pop out a piece of bone, leaving a small hole into which they insert a needle and extract bone marrow. The marrow is then sent to the lab for analysis.
The doctors and nurses all seemed to be reading off the same script. They would tell us that Porter would get some tests done when he was stronger “just to rule out cancer.” I realize now that they were preparing us so we could accept what they already suspected: Porter had cancer. I actually chuckle now when I think about it. They really did a masterful job of helping a mom and dad get used to the idea of their child’s cancer. I am grateful for their careful compassion in those months leading up to the diagnosis.
We actually found out about Porter’s cancer diagnosis in a roundabout way, again with the involvement of compassionate doctors. Jen had take Porter to a checkup with his pediatrician at Kaiser Alameda. The doctor had been seeing Pixton children in Alameda since the oldest was a year old and the only child. We have always like her. While she was looking at Porter’s online record, Jen said, she started crying. Jen asked her what was wrong and she told Jen that the marrow tests had come back and showed that Porter, our three-month-old baby boy, had leukemia.
I can barely remember Jen coming home and telling me about the diagnosis. My brain was so foggy. It didn’t seem real. I kept thinking through every thing over and over. Was the diagnosis maybe wrong? They’d been wrong about this kind of thing before, right? Couldn’t it still just be a little platelet problem?
Kaiser set up an appointment for us in the pediatric oncology department. At the time, I barely knew what pediatric meant. Jen had to tell me what oncology meant. The childhood cancer department. That’s where we were going.
We took our little son to the basement of the Oakland Kaiser building right next to the parking garage–I can’t remember the name. That’s where the ped-onc department was located at the time. A nurse led us into a doctor’s tiny office with stacks of papers on the desk. There wasn’t much room there and it was packed. We were introduced to the oncologist, a social worker and a nurse practitioner. Our knees were all nearly touching in the middle of that little room.
The news was bad and it only got worse. Not only did Porter had leukemia, but he had a very rare kind called Juvenile Myelomonocytic Leukemia, JMML for short. There were so few children in the US with JMML, that when they did studies, they had to go to Europe and Asia to find enough children with JMML to get meaningful statistics.
Fine, I thought, we’ll get it treated and move on. “So what’s the survival rate?” I’ll never forget the sad look on the doctor’s face. “It’s not very good.”
“What does that mean?” I asked.
“Below fifty percent.” Oh. When I looked it up on the internet later that day, I saw that the survival rate was more in the neighborhood of 25 to 30 percent.
She also told us that traditional chemotherapy did not work to cure JMML. The only treatment that worked–and that only some of the time–was a bone marrow transplant. Bone marrow transplants are a huge deal fraught with potentially deadly complications. When the recipient is a child, it’s all the more dangerous.
My head was spinning at this point. The one positive point they gave us–if you could call it that–was that his cancer was currently “simmering.” It wasn’t in remission; it was just kind of sitting there. That meant that we had time. We didn’t need to jump into treatment. The proposed treatment for the immediate future was to wait and watch.
Well, wait and watch we did. And we read and studied and called and made connections. We found other families with JMML children. We had our other biological child typed and miraculously she was a perfect match to be a stem cell donor. What a blessing there!
I joined Team and Training and Porter became one of the honorees for the cycling season. The Luekemia and Lyphoma Society gave us tremendous support. So did our church community. Our families were out of state so they offered prayers.
It appears that God heard those prayers. The leukemia has uncharacteristically remained “simmering” and we have continued to wait and watch–for eight years now! Apparently, some kids have simply outgrown JMML. Perhaps that is what’s happening with Porter. We don’t know, but don’t take any moment of his life for granted either. He has been a gift to our family–a crazy, rambunctious, happy, easygoing gift.