The rest of the story

So, we met with the eye doctor about an hour later and he told us that he was pretty perplexed by Conor. He said when radiology had originally alerted him to the mass he had them double check that they hadn't flipped the image, since the mass they found is above Conor's right kidney. His Horner's Syndrome presents on his left side, so if there were a neuroblastoma involved in causing it that is the side it should be on. So, this mass has nothing to do with his Horner's. They were looking for a neuroblastoma and they found one, just not where they were expecting it to be. At this point the eye doctor told us that there wasn't really anything else he could do for us, as far as the mass was concerned, but that he had already been on the phone with our pediatrician and that she said she would call us by the end of the day to discuss what needed to be done going forward. He did raise the possibility that it could still just be nothing to be concerned about, but we weren't putting too much stock in that option.

Our wonderful, fantastic pediatrician called us about 6:30 that evening. She had spent the majority of her afternoon talking to pretty much every doctor Conor had ever seen and reviewing the many, many tests he has had run in the past months. She said that originally radiology thought we should take a wait and see approach to the mass but she just wasn't comfortable with that idea and was able to get him in to see oncology on Friday.

Friday afternoon we drove back down to Hopkins to meet with oncology. They drew some blood of their own and tried to get a urine sample and eventually gave us the official diagnosis. He said that we could wait for the blood tests to confirm, but that he was 99.999% sure that Conor has neuroblastoma. He thought that our next step would be meeting with the surgical team to plan to get the tumor removed.

Neuroblastoma is a really interesting cancer. Apparently when it is diagnosed in infants six months and younger it will often resolve itself on its own. Right now the typical approach at that age is to just watch it and see. We were told that they were just starting a study to see if that approach would be safe or effective for babies up to a year, but that Conor wouldn't qualify for it and the oncologist didn't think it was a good idea even if he did. The plan for right now is to have the mass surgically removed. His oncologist said they would remove it as safely and non-aggressively as possible, and that even when they aren't able to get the entire tumor out the leftovers will sometimes resolve themselves without further intervention.

Once the tumor is removed they will send it off for genetic testing. I'm getting fuzzy on the specifics he told us here, but the results of those tests will determine if he needs to have chemotherapy or radiation going forward. If the results are good he will only have a ten-ish percent chance of needing the chemo and if the genetic tests are bad his chemo chances increase to about thirty percent.

This whole experience has been so different from his heart stuff. With his CHD it all happened so fast, we'd only had him home for one night before we took him in to his pediatricians office to check on his jaundice. They sent us straight to the ER, and the ER sent us straight to Johns Hopkins. By the time he was settled in the NICU it was pretty late and then the next morning they told us about his heart defect and that he would be having surgery that same day. Honestly the whole time he was in the hospital it felt like we were watching the whole thing happen to someone else, like we were seeing some other parents hovering over some other sick baby. It was only once we got home and things calmed down that we started to process all the craziness of what had happened.

This time around the whole thing has been a lot slower. We knew there was a slight possibility of cancer when he went in to the MRI. And then getting the email with his test results gave us some time to process that before hearing from the ophthalmologist that it was likely that he had a neuroblastoma. And then hearing that let us prepare even more for getting the official diagnosis from the oncologist. By the time we got that we'd had several days to acknowledge that this diagnosis was coming, though I did feel pretty light headed when the oncologist said "yes, he has neuroblastoma", despite all the time we'd had to let it sink in prior to meeting with him.

Last week Conor had an MIBG scan, which is a nuclear medicine scan where they inject a liquid radioactive material into his arm one day and the next day they scan him with a gamma camera to determine where all the cancer might be in his body. Which, of course, we are expecting and hoping for it to be only where his tumor is. Once the images from this scan are reviewed we will be able to move forward with scheduling his removal surgery.

I took him in on Wednesday to get his radioactive material injected. They started with an oral medicine that was meant to protect his thyroid from being damaged by the injection. The nurse mentioned that it tasted disgusting and Conor certainly reacted in a way that would confirm that! Poor boy, he was not happy about having to swallow it. An hour later they took him back to do the IV medication. The first line they started did not work so my poor boy had to get poked twice. Once they got the line started the medicine took only a few seconds to inject and we were done for the day. They said he was not allowed to go to any landfills or to the White House for the next three days, as he would set off the radiation detectors there. We also were instructed to take his wet diapers straight outside as the radiation would come out in his urine.

Shockingly, he was not a fan of being strapped down like that to get his IV in. I was just glad I didn't have to restrain him this time.

Sweet boy. We took him back on Thursday for the scan and he was so mad and hungry while we were waiting, since he once again was having to fast beforehand. He finally went to sleep while we were waiting to get started.

And that is him knocked out and waiting to be scanned. That is the machine they sent him in to. He looks so tiny on that table! 

We are still waiting to hear the results but have an appointment with surgery this week and are looking forward to soon having a more concrete plan for his treatment.