Our baby was born with a Tumor/ Neuroblastoma in the middle of his body.
How did we find that??
Well our geneticists were trying to figure out why Zane has so many odd little things going on with him so they originally thought maybe Beckwith Weiderman Syndrome (A syndrome where a baby has a large tongue, enlarged abdominal organs, large/giant birth weight, polyhydramnios in utero) so they sent him for an abdominal ultrasound to see if he had enlarged organs but instead they found a MASS. Oi! That was a difficult day full of just fear. I had hopes it was nothing but in my gut knew it was something big. The sent him for a CT Scan right away to analyze it further. This is what they found:
The highlighted yellow section in the middle is what they were looking at. His tumor was sitting in the paraspinal region, towards his back in the retroperitoneal area. (if you sliced someone from head to toe down the middle seperating his front from his back…. it is sitting in the back half behind his intestines and more towards the kidneys) It was nestled between his Aorta and Superior Vena Cava. Quick Anatomy lesson:
In this picture…. you see two very large vessels, the biggest ones in your whole body that lead to your heart. The blue one is carrying deoxygenate blood to the heart, this is the Superior Vena Cava (your largest vein) and the red one is carrying oxygenated blood to the rest of your body, this is the Aorta (your largest artery) In that section you see where if bifurcates/branches off into two paths… is where his tumor was sitting. It was also pushing under the main vessel from his liver to his intestines, It was actually slightly attached to that vessel and they had to seperate it from that vessel and stitch that teeeny tiny vessel back up so it could function again. If his tumor hadn’t been found and continue’d to keep growing…. it would have likely pressed against these main vessels and blocked off circulation to his heart. Since we found this thing early we were able to resect it/remove it and save his life!
The purple and red lines, I was trying to draw the aorta and vena cava in myself 🙂
So what we did next was send him for more scans. We needed to stage the tumor and also see if there was anymore. So we sent him for a neck, chest, abdomen and pelvic CT Scan. There were no more tumors! We sent him for a Bone Density scan at the same time because Neuroblastoma can also spread to the bone marrow. We saw nothing abnormal on his bone density scan! phew! So they were calling him Stage 1: Low Risk.
There are three risk levels for Neuroblastoma. Low Risk has a 95% survival rate, intermediate 80-90% , but high risk only has a survival rate of 30-50%. So as you can see staging was so very important to know what we were getting into. When they said low risk I felt REALLY REALLY Good!
Most kids don’t find Neuroblastoma as early as we found Zane’s. In 80% of Childhood Cancer cases, their cancer is metastatic. To learn more about Neuroblastoma and/or to help other kids who get this visit the Sierra Rayn Foundation website. They also sell magnets, wrist bands, etc for any friends and family that is interested.
So after he had the CT Scans and Bone Density Scans… there was one more test he needed to do before surgery. The MIGB Scan. In this one, he got a nuclear med in his g tube. This medicine seeks out and attachs itself to neuroblast cells. He also had to drink small portions of idoine several times a day to protect his thyroid from the nuclear med. And he super hated that stuff, it was really gross tasting, you could tell and it was torture watching him having to drink that. I don’t have images of this one, but it concluded what we were all already thinking…. that his tumor hadn’t spread anywhere else.
So, now were ready for surgery! We sent our little sweetheart into the hands of a very large surgical staff. Everyone came in to introduce themselves and told us what their job in the O.R would be. They explained how he would come back on a ventilator for a few days. The goal was to get the whole mass out. If the whole mass couldn’t be resected then he would also need chemotherapy. We kissed our little pumpkin and he was off to surgery.
Me and David waited anxiously, in fear, in the surgical waiting area. They called and gave us updates about every hour and a half. The first update was…. They got him to sleep well and got his PICC line in. They put in a PICC line because they have a hard time getting IVs in him…. they needed to make sure they had a secure line while he was recovering from this surgery. Next update… he’s still doing good and is stable. So we were still having a heart attack hahaha…. AnD THEN….. They called and said “We removed the whole tumor! He is doing great and had very minimal bleeding” Excellent! We could breathe again! The surgery took 4-5 hours long. He came back to his room and we saw him for a minute but there were about 10 people surrounding him, making sure he was stabile and hooking him up to all his IVs and equipment in his room. So we left the room for about an hour and came back. Looking at him would easiest be described as seeing someone in a coma on life support. It was REALLY hard to look at our son like that.
This is a copy and paste from my Caring Bridge site I started ” They said he only lost 10ml of blood…. not bad at all. So then we had to wait another good hour for them to bring him to his room. That was the hardest waiting. We knew he would come back still intubated and and the machines would be working for him…. he would be asleep for a couple days possibly. That was the scariest part for me… not knowing how to handle that and it was definately the hardest part when we got to see him. He had sooo much hooked up to him (still does). He has a breathing tube, they added a NG tube because they could attach suction to the end and you can’t do that through his G Tube. They explained that since they had to pick up the bowels and move them over just to get to the mass that it would take a little while for his bowels to function again. They are looking for stuff that doesn’t look like bile come out of the NG suction before they take that tube out and he needs to start “pooping and farting” as he put it… and they will take out the NG tube and start feeding him again. So with that said he also has an IV in his head that is giving him IV Sugar Water to keep his brain functioning and to replace meals. On his left arm he also has something that looks like an IV but it is an Arterial Line which basically keeps track of his blood pressure constantly unlike a cuff that goes every 15minutes say. The blood pressure is one way for them to judge his pain control. His right arm also has another IV cept this one is not connected to anything, it’s an open one in case they have to add something. His Right leg they put a PICC line which is an IV that goes all the way from his thigh to his heart. This one had two tubes coming off…. one is a “CVP Monitor” which shows how much water weight he has. I believe thats how she explained it. On the other tube on there he was getting a blood transfusion. Even though he only lost 10ml of blood they said his CBC was low (this happens to me constantly… so i really understood this… but they put more in.. to help him recover better … better safe than sorry) He also had a foley catheter to monitor his bladder function and the amount of fluid hes outputting. I asked why because he has a diaper.. why he also needed a catheter and i guess thats so they can see the urine output. He had one more IV with his pain medication/fentynal which they are eventually giving him a PCA with morphine drip. OI! It sure is hard to see your own baby like that. But they said all of this is normal for such a big surgery. Having him asleep like that is controlling his pain as well so they decided against the epidural part. He also has a couple extra patches that are monitoring the oxygen in his blood.. one on his forehead and one on his back. plus his normal leads that show heartbeat, lung rate and amount of oxygen in lungs. I think thats it. Soooo now we just pray he pulls off the machines well on his own. They are going to wean him off a little bit at a time and we should expect to this all on for 2-3 days and of course be hoping for even less. it is all up to Zane how fast things come off… when he opens his eyes and shows he can breathe on his own again. ”
So he weaned one machine off at a time and was eventually off everything but Oxygen and IV after one week. We couldn’t hold him, just sit in his room and watch him sleep. He would wake up coughing on that stupid breathing tube… and when he looked peaceful he would suck on the breathing tube like a NUK which was really cute. After 2-3 days they attempted to take his breathing tube out but he went into respiratory distress and they put it back in. He was working so hard to breath that he just gave up trying and they decided he wasn’t ready. After it went back in…. swelling started to happen in his airway. So they had to give him diuretics/a drug that helps you pee a lot and get rid of water in your tissues, a steroid and epinepherine/adrenaline. Eventually we could hear air coming through again and got it out. The following week he was on cannula oxygen at a very fast flow and we weaned off that for the whole next week and then he could come home. He was cancer free! no Chemo! yay! Because of Neuroblastooma Genetics also sent a test for another thing called Costello Syndrome. So we started our wait for those results, and learning about what Costello is and were finding he matched soooo closely with it that we’d be surprised if that isn’t what caused his neuroblastoma.
Zane got VERY lucky with his cancer battle, but little did we know it was not over! After taking him home for a few weeks we noticed something was just really off about him. And he started displaying symptoms of Opsoclonus Myoclonus syndrome which is a syndrome that affects 2-3% of neuroblastoma kids…. and is caused by his bodies immune system building up antibodies to attack the tumor. Those antibodies started attacking his brain thinking it was a tumor. And we thought hearing “your child has cancer” was bad….. now he has an uncureable auto immune disease that no one in our area knows how to treat. 😦