I never thought much about pediatric cancer before my son got sick. Every once in a while I would hear about someone who had a sick child and my heart would break for them, then, to be totally honest, I wouldn't think about it again until the next St. Jude commercial.
Today is International Childhood Cancer Awareness Day. I never thought much about pediatric cancer before my son got sick. Every once in a while I would hear about someone who had a sick child and my heart would break for them, then, to be totally honest, I wouldn't think about it again until the next St. Jude commercial. It was one of my random parent fears, but I would quickly push it away as, "That won't happen," like most parents. And in most cases, that is true.
My awareness began with my son's diagnosis. I still cannot believe that our Little Buddha has cancer, not really. We have no family history of childhood cancers. Our little guy was totally healthy. In fact the cold he had when we took him into the hospital was only his second in his little six month old life.
On November 3rd 2015, our Little Buddha had a cold. I had taken him to the pediatrician the week before, and had gone that day back for a follow up because he still had a mild fever and he was not his normal active self. That night we gave him some Tylenol for his fever and he suddenly vomited up the meds and the entire bottle of formula he had finished a few minutes before. He suddenly turned very pale and his lips turned blue. He was still breathing, but it was labored and he wasn't responding to us. We called 911 and were taken to the children's hospital.
Once we arrived at the hospital, the doctors began trying to figure out what had happened. I thought that he had inhaled either the Tylenol or vomit. He hadn't. The doctors felt a bulge in his abdomen and ordered an ultrasound. There was a mass. They ran a CT and found the mass seemed to be coming from his liver. They called the pediatric oncologist on duty.
We were in shock. What had just happened? Our little boy had a cold, why were they calling an oncologist? A mass? I hadn't seen or felt anything. I changed him and bathed him everyday. What had I missed? I was a horrible mother. My poor baby.
We were transferred from the ER to the oncology wing of the pediatric floor. We met the oncologist and surgeon, they felt that the mass was in the perfect position to remove, it was growing out of the liver, not into it. They would remove the entire thing, or as much as they could, and send it for biopsy. It seemed like the best case scenario for a horrible situation. We were cautiously optimistic going into the resection.
The day of the resection we were a mess. He would be under general anesthesia, and it would take about three hours. We sat in his room and talked. "They should be able to get it all." "Maybe he will need chemo, just to make sure." We decided to go stand outside the ER and get some fresh air. As soon as we stepped outside I got a call asking where we were. I told the nurse and she said to stay there, the surgeon would meet us there.
"It was more complicated than we anticipated...tumor burst...too much bleeding...attached to the diaphragm..." I held strong, waiting for the worst. "Is he awake?" "Yes, yes." Way to bury the lede, Doc. After a deep breath I could take it all in. So they hadn't gotten all the tumor--but most of it, it had burst and they had to give Little Buddha a transfusion--but he was still here. Okay, what is next?
The resected tumor was sent to pathology. It was probably a hepatoblastoma, a rare liver tumor--but the oncologist sent a sample to specialist on the mainland, she was concerned that it may be a different tumor. A week later and the diagnosis changed. Her hunch had been right, it was the other tumor--a much more rare and aggressive rhabdoid tumor. A malignant extrarenal rhabdoid tumor to be precise.
The doctor warned us not to google it, but of course, I started on the way home from the hospital. "Most lethal form of pediatric cancer... rare and aggressive... poor outcomes..." I found a literature review, only 35 cases of rhabdoid liver tumours in the English speaking world. There was no protocol. Just frontline chemo, resection, and prayers.
We decided to start chemo as soon as the surgeon gave the okay. Six agents given in 2 batches alternating 3 per cycle every two weeks. Neupogen for up to 10 days after each treatment to boost white cell production. The first two treatments were on time. The third was a week late, his ANC was low--meaning his bone marrow needed more time to recover. The fourth was almost a month after the third. So much fear and anxiety.
His scans came back, the chemo is working. The remaining tumor has shrunk by more than half. His lungs are clear. I am grateful, so very grateful, but still...I cry. A lot. I get hopeful. Despondent. Prayerful. Angry. Sad. Depressed. Then our little boy smiles at me. I have come to the conclusion that he deserves every chance he can get.
We will keep fighting because our little boy deserves every chance For a long life--no matter how slim the odds are.