No pictures in this post, our computer is down so I can't get to any pictures at the moment. But maybe this post doesn't need any pictures anyway. But just a word of warning, I am kind of starting from the very beginning so this is probably the longest post I have ever written.
This pregnancy has had its ups and downs. In some ways it has been very uneventful and in other ways it seems to be one thing or the other. We were so excited to learn back at the end of December that we would be adding another little one to our family. I quickly became quite tired and didn't feel well, but compared to a lot of pregnant women, it was nothing. No throwing up, just nausea in the evenings. But eventually that passed, as it always does.
At 18 weeks, we had our regular sonogram that the doctor always has his prenatal patients have. The images showed that we would be adding a third little man to our family and we couldn't have been happier! But it also showed a single choroid plexus cyst on his brain. Whenever you hear anything about something on the brain it is scary, especially when it is your own baby. But our wonderful doctor reassured us that since everything else on the sonogram was comepletely normal, that he had no doubt that is was of no concern and an insignificant finding. We were to have another sonogram in 6 weeks just check on it. So at 24 weeks we went back in for another sonogram and thankfully the cyst had dissolved and everything else was fine!
The pregnancy was going along great! No other concerns, I haven't even gotten sick or had to go to the doctor for anything else Other than my prenatal care. Sure, I was/am getting quite uncomfortable and felt like I was getting much bigger much faster than any of my other pregnancies, but I think that is mostly normal for this being my fourth child.
I had a doctors appointment at 30 weeks that measured right on and then in 2 weeks had another doctors appointment at 32 weeks. This time I was measuring 3 weeks ahead. Instead of just increasing 2cm, my uterus had grown 5cm. The doctor was not overly concerned, thought that maybe the baby was in a funny position but since it was such a significant increase he went ahead and ordered another sonogram. That was on a Friday. The next Tuesday I had a sonogram. My sweet sister in law, Natalie came along with me to get to see her littlest nephew. The little guy was measuring to be quite the big guy actually. His head circumference was 3 weeks bigger than the due date and overall he was measuring a couple of weeks bigger than the due date. But those measurements all actually were within normal range and nothing having to do with his growth was of any concern. He looked like a big boy but a healthy boy. Except for a very suspicious looking spot that the sonogram technician seemed quite interested in. I finally asked her what that was that she was measuring, and in a nonchalant voice just said, oh it's something in the liver. That answer seemed a little vague to me but I knew that they are not supposed to really say much anyway. But the way she told us bye and said "well, I don't know if I will see you again or not." made me a little suspicious that something did not look right to her.
The last appointment I had with my regular doctor was the last appointment I was to have with him before I moved my care over to the ob doctor. So just a few hours after the sonogram I got a call that my appointment with the ob had been scheduled for Thursday. As in 2 days from then.
Then that evening I got a personal call from my regular doctor to tell me that they had seen a mass of some sort that looked like it was on the liver but it was hard to get a real good picture of it on the sonogram and the radiologist that read the sonogram couldn't say at all definitively what it was. All they knew was that it was not there at the 24 week sonogram and now it is and it could be a number of things. He gave me several options of what it may be but the most likely thing was a simple hemangioma. (don't ask me what that is though, I don't really know). But he said try not to worry about it and when you see the ob on Thursday he will tell what the next step is in finding out more about it.
So on Thursday we(matt and i) went to the ob and had a regular appointment, he was planning on already having had talked to the specialist in Wichita about me coming to her office for a sonogram and having her read the sonogram and give us a clearer diagnosis but she was on vacation until Monday. And she is the only specialist in Wichita that deals with special fetal disease diagnosis. So he said he would call on Monday with what she wanted to do. Whether she wanted us to come right in or wait or whatever.
So Monday afternoon this week, I got a call from the specialist's office and they said to come in at 7:45 the next morning for a sonogram and then the specialist would go over the results with us.
So I called another wonderful sister in law, Tiffany and asked if she would stay at the house with the kids since we would have to leave kind of early. So she actually stayed the night that night so she could be there when the kids woke up and we were already gone. The kids loved having her there!
So Tuesday(the 17th) we went and had the sonogram in the specialist office. The sonogram technician was very proficient and was so kind and told us every thing she was looking at and measuring and obviously knew exactly what she was doing. When the sono was over we went back to our room and a nurse came and asked a bunch of questions and then a resident doctor came and talked to us and asked a few more questions, then we had a long wait until the specialist and the resident both came and talked to us about what the sonogram results were.
Now, I was expecting that, she was going to say something along the lines of, well it was great meeting you but the mass is nothing to be concerned about so just follow up regularly with your ob, thanks have a good day.
Well, that is not what she said. She started out by getting out a piece of paper and drawing us a little diagram of where the liver, kidney and adrenal glands are all together. She drew out that the mass/tumor was actually on the adrenal gland not on the liver like the previous sonogram reading had thought. Then she said, now we can't say for 100% certain that we know what it is since we aren't reaching in there and taking a tissue sample but we are looking at the pictures and information we have and this is our best diagnosis and we are pretty certain that this is what it is. And then she writes down the term Neuroblastoma.
Wait....what? I thought it was supposed to be nothing. Did she just say that my baby has cancer?
But then she quickly said, "now I want you to know that a fetal(instead of infant or child) diagnosis of this has a >95% survival rate."
And then a couple of minutes later she said again, "did you hear me that it is a greater than 95% survival rate?"
She said that the next step will be an MRI and then the surgeons will look at the MRI and the latest sonogram and decide what should be done. She was very kind and sympathetic towards us.
The MRI is actually scheduled for this afternoon. I am supposed to check in at 1:00 and the MRI is at 2:00. The specialist said that they will give me medicine that is supposed to make the baby sleepy so hopefully he won't move around too much. He is a real wiggle worm and they could definitely see that while they tried to do the sonogram!
Also she told us that we will have a weekly sonogram/biophysical profile of the baby to check on how the baby is doing and to check on the tumor. They are watching for abnormal fluid around the tumor and if that develops then the baby would need to be delivered right away. Also, because of the hormones in the baby that this tumor messes with, there is a greater risk of me developing Pre-eclampsia, so of course if that starts to happen the baby would need to be delivered right away as well.
We are praising God that he directed our doctor to order another sonogram, as it was not a routine one and he could have just as easily not had one done.
We are still processing this and we know what the statistics say about a 95% survival rate but at the same time, it is hard to know that our baby has cancer in his body and that he most likely will have surgery and all the unknown factors right now.
I don't know how long it will be for the surgeons to get a chance to look at the tests and decide what to do, but I imagine it will be sometime later next week. I will try to keep this blog updated and next time I won't have to write a book to play catch up on what is going on ;)
Thank you for letting me share this with you and for praying with us for our baby boy.
