For a couple months J was having pain low in his belly. Previously we had him seen by his doctor and determined the pain was from constipation. He somewhat faithfully followed a prescribed course of Miralax and his symptoms improved. Recently the pain started again and he confessed he no longer followed his Miralax regimen religiously. We chided him and threatened him and told him he needed to improve his compliance if he ever wanted to feel better, because that's what good parents do:). Wednesday Feb, 11 in the afternoon, he had a new pain low in the left side of his back. I was at work an hour away and Mom called to let me know he was in great pain, and couldn't even bend over. Weird. Maybe a kidney stone? We decided to get him to the pediatric clinic. I headed to pick up the girls from their string lessons and met up Mom and J at the clinic. The drive home I had a recurring thought about these strange symptoms, "What if this is cancer" and would quickly dismiss it as silly, paranoid parental worrying.
I arrived at the clinic just as they were ready to take an x-ray of J's belly to see if he was constipated. He was still in some pain, but looked OK to me. Mom took the other kids home and had to go to the church for youth group activities. I had an ongoing texting conversation with some friends who would soon be moving away about whether we could meet them for dinner at the Mexican restaurant after J was done. The x-ray looked like constipation and we made a plan to clean him out (which sounded like the meanest treatment to subject a child to at the time). He also had some blood in his urine, so we decided to get an ultrasound of the kidneys just to make sure he wasn't passing a kidney stone (which would probably result in admission to the hospital, which we were trying to avoid).
I work in radiology and was able to talk the 2nd shift ultrasound tech into doing a STAT outpatient ultrasound without the hassle of going through the emergency room. J and I went to my office and left our stuff there and checked in (the woman at the check-in desk should have been gone for the day). I sat down in the room for the ultrasound and positioned myself so I could watch the screen, just behind the tech and to his side and waited patiently for the normal scan to be completed. When we looked at the left kidney (the side of the pain) there was a little bit of fullness to the portion where the urine collects (not much, but caught my attention because when people pass kidney stones this area can range from mildly dilated to fairly dilated). It also looked like there was a stone. I sent Mom a quick text to let her know J had a kidney stone, but that it wasn't the cause of the pain (the stone we saw wasn't in a location to cause pain). Immediately after the tech placed the probe in the pelvis where he could look at the bladder, and a large mass filled the image. My initial response was, "that is a lot of poop in his colon", but I quickly realized it was a large mass, and it did not belong in my son. The ultrasound tech would usually brush any questions aside and "check with the radiologist" if family members notice something wrong. Wasn't working with me. I was wanting to see more, and see that it wasn't there, and talk openly with the tech, but not say anything to frighten J. I also knew I was not ready to let Mom know. I reviewed the images with the radiologist on service for the night (one of our pediatric radiologists). He looked, thought it was odd and said, "We need an MRI".
While I was able to finagle a STAT outpatient ultrasound without going through the emergency room, that was not going to happen with an MRI. I called the ultrasound results to the doctor in the clinic (just as I would have if I were the radiologist reporting the study). J and I tried to rush through the emergency room triage and admitting process. Every time I was asked what was wrong I was torn between reporting back pain and telling everything about how we had just incidentally discovered cancer. The admission ended up being quick and relatively painless and soon we were ready for the MRI, and I finally told the story to Mom (one of the harder conversations I have had). J has always been a fidgety person and I was worried about his chances of successfully lying still in the MRI tube with all the banging noises for 30 to 45 minutes. All the while, I was also debating how much to tell him about what was going on, worried that knowing too much may kill his ability to cooperate. I have always felt it's better to tell more than less, so I told him there was a mass and we wanted to find out more about it. He thought for a minute and then turned back to his Mad Libs he had received from the nurses. Hard to know if he was scared and in denial, or if he just thought Mad Libs was far more worthy of his attention at the moment.
It was time to start the MRI. I wanted to be at the control station, watching images as they came off the scanner and knowing what the extent of the mass was, where it was coming from. J wanted me in the room with him. So I sat on a chair to the side of the room with ear plugs. Unable to offer a hand of comfort. I don't even know for sure if it helped him to know I was in the same room. It was a long, noisy scan, and I was left alone in my thoughts, this time knowing that it was cancer, at least if it weren't we would have beat very long odds. J was a champ. The results were finally available, and from an imaging standpoint, we had no idea what it was. Lymphoma would be common for the age, but the imaging characteristics were odd for lymphoma, and other options included sarcomas. We finally met up again with Mom were admitted to the Children's Hospital, knowing the next step would be a surgical biopsy. And the waiting began.
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