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. 

Conor Update OR the big long story of Conor's cancer diagnosis.

I am so behind on updating this blog! Conor is mostly to blame for that, he is a little velcro baby and needs to be touching me at all times. We are working on independence, so right now he is sitting on the floor, surrounded by toys and one helpful two-year-old brother, and complaining that he is too far away from me.

Conor got all pumped full of fluids before, during, and after his heart surgery back in October. When he awoke from the anesthesia we noticed that his right eye was opening fine but his left eye was swollen shut. His pediatrician thought it might still just be from his original birth trauma (he broke his left clavicle and his left side was a bit bruised on his way out) and said we should take a wait and see approach, and that if it wasn't looking normal in another month or so she would refer us to an ophthalmologist. Well, the swelling did eventually go down, though his left eye lid remained a bit droopy when compared to his right. His pediatrician said she was not too worried about it, as it was not covering his pupil at all, so was not likely to impede his vision. However, when we had visitors in February for his blessing, my mom noticed that his pupils were dilated to different sizes. After she pointed that out I did some googling of his symptoms and happened upon Horner's Syndrome. The internet indicated that Horner's is caused by nerve damage and that there were three main culprits that damage that nerve: a broken clavicle, CHD, and neuroblastoma. Conor had the first two problems already, so we assumed that was what it was. At his next check up I mentioned the pupil dilation issues and she referred us to an ophthalmologist who confirmed the Horner's diagnosis.

Because Conor had two of the three main causes for Horner's Syndrome his ophthalmologist originally thought we didn't need to bother with an MRI, as it would be unlikely that he would have a neuroblastoma as well. In fact, the specific surgery that Conor had on his heart (left sub-clavian flap repair) was a huge culprit for the nerve damage behind Horner's and his eye doctor thought that was the most likely reason. However, after consulting with one of his colleagues and several of Conor's other doctors, he decided that since Conor had so many little issues (failure to thrive, eczema, milk allergies, a few sketchy lab reports from blood work, etc) that it would be best to do the MRI after all just to make sure. He said even though it was unlikely that a neuroblastoma was to blame for his Horner's it certainly seemed like there was something weird going on with him.

After he told us he wanted us to go ahead with the MRI we had a bunch of communication issues and basically were unable to contact him for almost three weeks. When we finally got the MRI referral from him and called to set up the appointment we were told the soonest they could get him in was the third week in July, or, smack dab in the middle of our family reunion/nephews wedding planned for the summer. We cut our trip as short as we could in order to get back to have him scanned the first part of August.

Now, I am an anxious worrier by nature, but I had been doing pretty well telling myself that the MRI was just a better-safe-than-sorry thing, and he was not going to have neuroblastoma. I was mostly concerned about him having to undergo general anesthesia to get it done.

Marc dropped us off at Hopkins on the morning of August 8th for the MRI. I had one grumpy little baby boy on my hands since he hadn't been allowed to eat anything after 2:45 that morning. Everything went as planned and a few hours later I was holding my sleepy little babe while he finished coming out of the anesthesia. The doctor came back and told us we were free to go home and that the scans all looked clear, but we would need to follow up with his eye doctor that had put the order in. Later that day the results were posted on Conor's online chart for us to see and the report said that they were "normal and unremarkable". I scheduled his follow up appointment for two days later, and we were so relieved to have that whole mess behind us.

Wednesday morning I was hurrying to get us all ready for Conor's appointment. I had decided to just chance taking all three older kids with me, figuring it would be a fast in and out appointment to go over his all clear results. Right before I got in the shower I checked my email and saw that Conor had a new test result posted on his chart. I clicked the link and saw that it was a new MRI result. I opened that to see that they had indeed found something after all. The words "Imaging of the upper abdomen reveals a rounded, well-circumscribed right suprarenal mass demonstrating intermediate T2 hyperintensity measuring approximately 1.3 x 1.2 x 2.2 cm." jumped out at me. And then, more concerningly, this sentence "THIS REPORT CONTAINS FINDINGS THAT MAY BE CRITICAL TO PATIENT CARE" yelling at me in all caps just like that.

I called Marc at work to let him know and he decided that he wanted to come home and go with me to the appointment. We quickly found someone to watch the other three kids last minute. When Marc got home he asked me to show him the MRI report, so I pulled it up again and saw this sentence that I somehow missed the first time I read it: "Imaging finding suspicious for neuroblastoma or, less likely, adrenal hemorrhage", which, honestly, was quite an upsetting sentence to read.

Man, this story is long, I will have to finish it later. Here are some pictures of Finn and Conor wrestling. Conor thinks it is so funny if I walk him up to Finn and then Finn grabs him and they fall onto the pillow.