Monday, November 28, 2016

Everyone else

The rest of the kiddos have, luckily, been a lot more boring this year!

 Teresa turned seven in May. I didn't get a birthday interview, sadly. She is super fantastic. She absolutely relishes her role of oldest child. She is a huge, huge helper to me. She has been learning piano for the past year and is really starting to sound great on it. She doesn't love the practicing, though. She wants to already be amazing at it and has a hard time accepting that it will actually take years of practice to do that! She loves second grade and is just a little social butterfly. 

Finners turned three in September.

I just love him so much. He is so delightful. He goes a hundred miles an hour all day, every day. He is very into categorizing things as being only for boys or only for girls. Though he still loves his baby dolls! He loves ninja turtles and super heroes and his siblings so much. 

I guess he thought Conor was getting too much attention because he did decide to give us a bit of a medical scare as well. He has had a bump on the top of his head for the past 9ish months. We've been keeping an eye on it, along with his pediatrician. She originally thought that he had gotten a bump on his head, like little boys do, and his body had overreacted and sent too much calcification to it, causing the lasting bump. However, at his three year check up she decided that it wasn't doing what it should be if that were the cause of it, so she sent us off for further investigation. She wanted him to get an xray just to make sure there was nothing weird going on with his skull, and she also sent us to see dermatology. Dermatology originally said they thought it was a cyst and needed to just be removed by plastic surgery, but then they decided he should have an ultrasound just to make sure. The ultrasound determined that it was actually a hemangioma, so we are holding off on the surgery for now.

 Before we could get any further on that though, the pediatrician called and told us that the xrays indicated that he had some hydrocephalus, or water on his brain. Then there was talk of MRIs and neurosurgery referrals and brain surgery to get a shunt placed. Needless to say, we were pretty stunned. 

Finn was a rock star for his MRI. They wanted to try to do it without putting him under, since it was meant to just be a super fast confirmation of the hydrocephalus. We watched lots of YouTube videos about MRIs leading up to it and I was so proud of him for laying nice and still in that big scary machine. The imaging only took about ten minutes altogether and he held perfectly still for about the first eight. Then he sta/rted whimpering and calling for me and wriggling about, but they luckily were able to get all the pictures they needed. We were thrilled to hear about a week later that the MRI was perfectly clear! No explanation from the doctors as to why the xray and MRI were different, but it was such a relief to hear them say that his brain is perfectly normal. We have had so many miracles this year!

Noodle has had a steady year, thank goodness! She was so, so incredibly excited to start kindergarten. They do a staggered start for kinder here, to kind of ease the kiddos in to it, and she was super bummed that T got to start back to school a few days before her. She loved the first day. 

And then did NOT want to go back. It was quite the struggle for the first few weeks. She would wait in line with the rest of the kindergartners and then once they got close to the doors she would turn and make a break for it. One time while I was kissing T goodbye she even booked it back to the van while I wasn't looking. She did great once she was actually in her classroom, it was just the getting there part that was hard. She is doing awesome now, though Finn still insists on escorting her all the way to the door. He is so funny, he will take her elbow and not let go until she is in the building. 

She is still doing awesome at Taekwondo, too. She leveled up to a yellow tip, which meant she got to start actually sparring with her classmates. This is pretty much what she's been waiting for since she started. She loves it. Marc and T loved watching her so much that they both started taking it as well. 

Tuesday, October 4, 2016


I let Marc be the one to take him back to be put under since I'd been able to be with him when that happened for his MRI and his MIBG scan. I don't even know how we managed to keep Conor asleep while Marc got suited up to go back with him!

Just like with his heart surgery Conor was a total rock star when it came to recovery. The doctors had said 4-7 days in hospital for observation after his surgery, but he was doing awesome and all ready to go home after just three days.

He had one night in the PICU. They take such good care of him there. He was still on morphine and ibuprofen for pain while he was in there. He just has gotten the most amazing nurses and nurse practitioners every time. We were bummed it was looking like we were going to have to cancel his appointment with genetics. His surgery was the 8th and his appointment was scheduled for the 12th. We'd been waiting to meet with genetics since May, so I was pretty disappointed it looked like we would have to cancel. Marc called them while he was in surgery to see if there was any way to make it work while he was in the hospital, but they shut him down pretty fast and rescheduled him for the end of January. Luckily, once we got back to the PICU, the NP heard us talking about it and said she would see what she could do. She called up genetics and within an hour they had some doctors over to see him and tell the nurses what kind of blood samples they wanted. We were so glad they were able to come see him while he was in there, because they ended up wanting 5 or 6 vials of blood and were able to use the iv lines that were already in place instead of having to stick him again. He is a really hard stick when it comes to blood draws, so anytime we can avoid it we are happy. Genetics asked us about a  million questions about both Marc and my medical and familial history and then gave Conor as thorough of a look over as they could with all his wires and lines. Their tests take quite a while to come back, though, so we still don't have any conclusive answers from them.

After one night in the PICU Conor got moved up to the Oncology ward. I don't know why, but I was completely unprepared for that. Obviously that's where they would send a baby that had neuroblastoma, but for some reason I was still expecting them to send him up to the regular baby and toddler floor where we've been before. His nurses in oncology were amazing, as well, they were so helpful and loving and just awesome. Of all the things Johns Hopkins does well, hiring excellent nurses is definitely one of them.

Poor lamb, he was so done with all the vitals checks. It felt like SO many different people kept coming in to check on him. Surgery, oncology, genetics stopped by again, then there was just the general pediatrics doctors, poor lad couldn't catch a break. At least most of the time they were able to check him while I held him, instead of having to be in his little hospital crib.

Seriously. Done. 

He spent the next two days being monitored and slowly weaning from morphine to oxycodone for his pain. I was super grateful that he was cleared to come home so quickly because co-sleeping babies and hospital beds do NOT mix well. Marc brought Gigi and all the kids up to see him on Saturday morning and we ended up all being able to go home together a few hours later.

Happy to be home with his family!

He continued to recover so well at home. The surgery was laparoscopic, so he had four little cuts on his belly and they made a cut through his belly button as well. So far his scars are looking good, though his belly button is an outie now, after having that surgical camera sent up that way. He continued to take oxycodone and ibuprofen for a few days after we got home. And it took him a good week after surgery to be willing to give us kisses again, poor lamb. I guess he was holding us accountable for all the pain and uncertainty that he had to deal with.

New outie belly button. You can see he still has tape on one of his incisions in this picture

While we were in the PICU his oncologist stopped by and told us that they were anticipating that he would not need chemotherapy at all, but that we would wait to hear the pathology report from his tumor before saying that 100 percent. We waited and waited and of course I missed the phone call when it finally came! But she left a message saying it was "all good news" and we were able to talk to her the next day and find out that chemotherapy was officially not in Conor's plan of care going forward. I can't even describe how relieved we are that Conor doesn't have to deal with that. I can't even imagine how horrible that would be for my little guy.

We are feeling so blessed that his prognosis has been so great. Just like with his heart, he ended up with the best case scenario for a pretty crummy diagnosis. His oncologist said they call tumors like his "rare-omas" because it is so super rare for them to catch them so early. Lucky, blessed, baby boy, we love him so much. 

Tuesday, September 27, 2016

Surgery, etc

I always feel so behind, but I want to record this all here for journaling purposes! My mind feels foggy right now but here goes. We met with the surgical team to discuss the tumor removal. We finally got to see the images from the different scans he has had, and they were super interesting. On his left side you could clearly see his kidney and his adrenal gland above it. On the right there was just the kidney and then another large spot above it, no visible adrenal gland at all. The doctor said it was about the size of a large grape, but that it looked like it would be easy enough to remove. He did need us to do a 24 hour urine collection on Conor beforehand to rule out a certain kind of tumor. He said that while chances were super low that it was that kind of tumor (like 1% ish) they would need to approach the surgery differently if it was, so it was good to know. They sent us home with lots of little urine collection bags and what looked like a milk jug to put it all in for the next 24 hours. Well. Collecting urine from a 10 month old for an entire day and night is about as easy and delightful as you can imagine it to be. Especially since the next day I had to take him back to Baltimore for a sweat test. GI wanted to rule out Cystic Fibrosis as a reason for his lack of weight gain and the sweat test was the way to do that. I got to sit with Conor in a tiny room, right next to a super hot space heater, for over an hour trying to collect enough sweat to sample from him. The technician tried three different spots but was unable to get enough to even run the test. Too bad she didn't need to test me, I definitely had plenty. Extra annoying that we had to do it because the whole trip was a huge fiasco. Because I had to haul his big jug of pee with me I had switched my usual diaper bag out for a backpack. In the switch I had forgotten to transfer my wallet and the wipes. So, of course, thanks to the baggie attached to him to collect his pee, he had a giant blowout as soon as we arrived at the Children's Center. And since I had no wipes with me I got to give him a quick bath in the bathroom sink. Miraculously, I did have another outfit for him! Then I had to call Marc to come bring me my wallet so I could pay for parking.

And after all that, the lab refused to test his urine because they said it wasn't in an approved container. Even though it was in the container that the nurse told us to put it in! To say we were aggravated about that would be an understatement. 

Anyway, surgery was set for the 8th. Poor lad had to come in fasting again, which he was understandably grumpy about. The surgical team said they thought it would be more risky for him to delay the surgery in order to do another 24 hour urine test. They said they called in several more radiologists to examine his scans and felt confident that it was not the kind of tumor the urine test would have alerted them to. 

Had to get my boy a special surgery outfit.

We took approximately 5 million pictures and videos of him while we were waiting for surgery to take him back. Just in case.

The tiny little hospital gown was so cute and sad on him. Luckily they had a super fun play room to distract him from his hungry tummy. 

He fell asleep right before they came to take him back for anesthesia. 

Then we sat and waited for a few hours. We got to sit in the exact same chairs we'd been in exactly eleven months before while we waited for his heart surgery to be completed. Dr. Hackam finally came out and gave us the great news that surgery had gone perfectly and that they had gotten absolutely all of it. One of the main risks for this surgery was blood loss and the doctor reported that he only lost about a teaspoon of blood. So wonderful to hear! Before long they took us back to the PICU to see our boy. He had already woken briefly and gone back to sleep by the time they let us back to see him.


Sweet boy, I hate seeing pain on his face :(

Monday, August 29, 2016

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. 

Thursday, August 18, 2016

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.

Saturday, May 7, 2016

Conor's Blessing

Conor was blessed in church back in March. We were lucky that all four of his grandparents were able to come be here for that. Here are his cute pictures. 

We are so happy to have him in our family!

Nora turns FIVE

Somehow it has been almost three months since our little Nora turned five and I still haven't done a blog post about her! 

So funny to think that this little bit has gone from this:

to this in just five years:

Nora is just the best, we love her so much. She is a firecracker. Girlfriend is strong willed, for sure. She is so sweet and loving and generous. Any time she has any amount of money she wants to spend she always wants to get something for herself and for Teresa and Finn as well. She is such an amazing and helpful big sister to Conor. She is so good at making him laugh and smile and generally keeping him happy when I have to get things done around the house. She and Finn are still good little buddies, and of course have about a thousand little spats each day mixed in with all their fun moments. She still completely idolizes T. She is so, so, so ready to go to Kindergarten! She still has quite the temper, but we are working on expressing those big emotions the right way.

She is really loving baby dolls right now, she would spend all day feeding and changing and taking care of her dolls. She told me the other day that her Baby Alive doll broke her collarbone when she was born, just like Conor, and that she also had to have heart surgery, just like Conor. 

Nora has been talking about learning Tae Kwon Do for a long time now, ever since she saw someone doing it on Yo Gabba Gabba when she was two or three. We were finally able to get her signed up in a class recently. She loves it! And has taken to it immediately, as well.

She and T got their hair cut recently and it was fun to observe their differences while they experienced that. T was exactly the way I am when I get my hair cut and just quietly told the stylist what she wanted and then sat quietly and awkwardly until it was done. Nora had very specific ideas of what she wanted her hair to look like. She wanted it short, short, short. The stylist she got kept trying to convince her to keep it longer and would cut just a little bit at a time. Nora would firmly shake her head and say "no! I want it shorter than that!". Finally when it reached her desired length she said "that's short enough, no more cutting!". I think it turned out super cute. She keeps reaching up and patting her bangs to make sure they are still there. If they get pushed back with the rest of her hair she says "Mom! I need help finding my bang!". It is pretty cute.

She wanted a storm trooper cake for her birthday. I let her do most of the decorating, she loved pouring the frosting and then they all had fun adding the sprinkles. She had Mina and Dalia over for a sleepover to celebrate on her birthday. She and Dalia didn't go to sleep until after 11, and they loved every minute of it!

We waited to celebrate big until her grandparents came to town for Conor's blessing. Then we all went to Medieval Times, which she loved, of course. 

I just love Finn so much in this next picture.

We are so lucky to have our Nora!