Thanks to everyone that sent smoothie recipes after my last post. The smoothies didn't go over so well. Hannah drank most of her smoothie on the first day, almost none of it on the second day, we switched to a chocolate shake on the third and fourth days and by the fifth day she was done with them. She just couldn't get them down. She doesn't feel well enough in the mornings usually to get anything in, not even plain apple juice. Tuesday of last week on the way to school at 7:45am when Hannah gave me the "I don't feel good" comment in her quiet voice. That means PULL OVER NOW, which I promptly did. Hannah spent the next few minutes throwing up on the side of the road trying not to get her new boots dirty. There was nothing for me to do but stand by and hand her a tissue when she was done. Se then felt better and made it to chorus on time at 7:55am. Poor thing, it must be like perpetual morning sickness.
I emailed her oncologist and he decided to move up her MRI to next week (to put that to rest.) Let's hope it does put it to rest because between then and now I'm getting hardly any rest. Honestly, I don't believe this is tumor. What I'm hoping it isn't is a problem with her ventriculostomy. Hannah had this procedure to help with the flow of cerebral fluid where they put a hole in the bottom of one of her ventricles in the brain to help the fluid drain out after her brain surgery. The doctor told us at that time that it could work forever or could at some point be blocked and have to be done again, or she may have to have a mechanical shunt put in. That would mean another brain surgery.
Her doctor did say he believes this is most likely pfs-posterior fossa syndrome. This syndrome involves a variety of signs and symptoms including mutism or speech disturbances, dysphagia, decreased motor movement, cranial nerve palsies and, emotional lability. We knew that Hannah had pfs following her surgery when her speech was limited, she stopped using her left side, she developed an issue with her eyes and she was emotionally unstable. Many children with posterior fossa (it's the back on the back of your skull) tumors develop pfs, some much more severe than others. Pfs is widely known and acknowledged, but it's origin is unknown. It's a complicated and often misunderstood syndrome.
Ok, I haven't done a medically detailed entry like this in quite a while! Thanks for sticking with us. Please join us in saying a few extra prayers next week as we look for another clear MRI! If you're reading this and you're family, I'm sure you can expect that "MRI deal" phone call from Hannah very soon!