I remember being on the 7th floor pediatric oncology unit back in June 2009. I was sitting with the doctors who were explaining to me Nayelis' diagnosis. (I had already Google searched leukemia in children, so I had a few questions of my own.) I went on to tell the doctors my findings, and they said not to let what I found on the Internet drive me crazy.
But that's just who I am.
You give me information I am not knowledgeable of, and I run with it on every search engine available to see what I can find. That's what I did then, and that's what I've been doing now.
Let me backtrack a bit.
During my 5-6 month pregnancy ultrasound for Neymar, doctors informed me that the ventricles in brain appeared a bit larger than they should have been. They closely monitored me during the remainder of the pregnancy to make sure the size was not increasing as it would mean there would be some delays.
When he was born, everything appeared fine.
Doctors would schedule an ultrasound of his head at two months just as a follow up. The ultrasound showed no changes, yet they did say they saw "blob" and weren't sure if it were anything of concern. Yes, they said "blob". I didn't realize that was a medical term. Doctors then followed up with a sedated MRI to take a better look. While the "blob" proved to be nothing at all, they did notice the ventricle's size slightly increased. A referral to a neurologist was done, and at our first visit, the neurologist explained a bit more about what the increased fluid in ventricle meant. He stated that it wasn't much, and he would follow Neymar. He then stated a special MRI would be scheduled to look at fluid itself. That MRI came and went, and the results came in. A bit more fluid, but it was considered stable because there was not much that could be done. The fluid was/is not causing pressure on Neymar's brain at the moment.
Fast forward to this past Friday.
Neymar went in for this third MRI since being born. Sedation was not needed as it was a quick brain scan. But I had to get in the MRI machine with him to make sure he didn't move. Neymar did an amazing job and they were surprised how still he stood. I, on the other hand, had to close my eyes and take deep breaths because enclosed locations like that cause anxiety to build. In a matter of ten minutes, we were done and getting ready to head to our next appointment.
The appointment with the neurologist.
Yes, my nerves were getting the best of me.
I was having scanxiety.
Scanxiety is feeling stress before and after scans. I had experience the feeling with Nayelis everytime she went in for CT scan, PET scan, and MRI.
The nurse called us in and took Neymar's vitals. Everything was on point. She brought us back to room and we waited for the doctor to walk in.
When he came in the room, my heart started to race because that's what happens when anticipating results.
I immediately asked if the results were in and of course they were. He said there was an increase in fluid and went on to explain what this may mean. And though I was there throughout the whole conversation, only bits and pieces stood out more than anything:
Fluid increase...CNS...mild hydrocephalus...options...next MRI...some of his delays maybe related to this.
Breathe Yvette. Just breathe.
I asked questions. He provided answers as best he could. Next MRI would be in July, and we will take it from there. If the fluid continues to increase, we will need to set up a plan. One option we are looking at is surgery.
I looked at him, pleading with my eyes.
He understood as he knows of our history with Nayelis and what this all means. He assured me, or at least tried to, that what Nayelis went through is something very different to what we are dealing with now. He said, "try not to read too much on the Internet, which I understand is hard because I do the same."
To tell me that is to push me towards reading more, and I tried my best not to read, until earlier this afternoon. I read about why hydrocephalus is, what causes it, the symptoms, the options. I read it's rare and that only 1-2 babies out a 1000 are affected by this. How rare that it was my child right? I was told the same about AML in children, and yet my daughter was the one diagnosed with it. With all that we've been through, and yet here we are facing another battle.
I have to remind myself to breathe.
To remain positive.
To have faith.
To stay away from the search engines.