I took the boys in for Mateo’s well child checkup yesterday and we saw Diego’s pediatrician for the first time since the tumor was found. It was a weird visit, and I was going to write all about it but then I realized I never blogged about how we found out about Diego’s cancer.So September is Pediatric Cancer Awareness Month, did you know that? I didn’t think so. Five months ago I didn’t think much about pediatric cancer either, but then the Friday before our family was packing up our house for a move I found a lump in Diego’s abdomen.
……………………………………………………………It had actually been about a month before that I first brought Diego to the emergency room. He had been waking up in the night crying, and that night complained of back pain and had a fever. My mind went right away to a kidney infection. I brought him in to the ER to be examined and they ran a urine culture. With negative results he was promptly sent home. Back with his pediatrician the next day I brought him in for a follow up, and they ran another urine culture and he was sent home once again. The doctor assured us that everything was okay, it was possibly growing pains and not to worry.
In the weeks that followed he was up nearly every night crying out in pain and had a fever off and on. I called his doctor and the advice line repeatedly and was generally told not to worry, but how could I not? Then, the Monday before I found the lump he again had a fever and back pain so I brought him in. A different doctor gave him a thorough exam and ran some blood tests. A bone scan was ordered for the next day. We were told it could be a bone infection causing the pain. But I Googled and saw Lymphoma was also a possibility. On Wednesday the scan results were back and all clear. Diego’s pediatrician again assured me via email that it was nothing to worry about. I emailed back that I was still worried. Then on Friday morning when he had belly pain I felt around in his abdomen and I felt a lump. I figured, well that was something to go on. I brought him in once again.His pediatrician felt it, and called Monday’s doctor in. She felt it too. It wasn’t there on Monday. We were told to wait. I’ll be honest, my mind did not go to cancer immediately but I was able to gauge concern on the doctor’s faces. We were told to wait while they consulted some additional doctors. Diego and I went out into the lobby where we sat on the floor and looked out the window on the street and freeway below. Diego was tired and put his head in my lap. I called Erich and my mother who was babysitting Mateo. After about 30 minutes the doctor came out to the lobby and told us that a CT scan had been ordered. She told us to go back to the emergency room for admission. She explained that she was worried and mentioned neuroblastoma and lymphoma.
Time in the emergency room goes by very slowly. Diego was in increasing pain and crying out. He was given a private room and we talked to many doctors before the CT scan was lined up. “Did anyone in the family have spleen issues?” and other random questions were asked. It took hours before the CT appointment, it may have been after midnight. In the middle of the night Diego was admitted to the pediatric floor upstairs. He continued to cry and writhe in pain.
At least an hour later a doctor came to the floor to show me the scan, going down from the lungs into the abdomen, narrating as she went. “And here are the kidneys.” A large mass started to appear. Continuing to narrate, she gave me some possibilities of what it could be, from more benign conditions to a cancerous tumor. I was numb.Erich came to the hospital the next morning for doctor’s rounds. At about 11am the pediatric oncologist came in, greeted us and said, “I’ll be right with you– but I want to take a lot of time to talk.” Then she went to see the next patient in the bed. Erich and I looked at each other and sat for an infinity while we waited for the doctor to come back.
I don’t really remember exactly what the doctor told us while we were sitting on the hospital bed but the net was that the mass was not a condition but a tumor. There was no benign option. The doctor with her explanations the night before was trying to let us down easy. The oncologist told us the tumor appeared to be something called Wilm’s tumor, a highly treatable form of cancer. The other possibility was neuroblastoma, a cancer a less positive prognosis. She told us, to hope for a Wilm’s tumor with favorable histology at an early stage. They would operate on Monday to remove the tumor and biopsy at that time.So that’s when our lives changed. We called our realtor and called off our move. You can read about the beginning right here. …………………………………………………………… I had been planning on doing an extensive post on Pediatric Cancer Awareness Month why you should care, but well, I guess my life is a little too full right now. But here is a really good post written by another mom on why it matters. Besides that, please remember Pablove and Curesearch this month or for your end of year charitible contributions. From what I can tell, these are really great organizations for pediatric cancer research and support. The American Cancer Society and US government only give something like 1% of funds to pediatric cancer research- Our children’s voices are being drowned out by all the shouting adults. Help the children be heard.