Seizures

My kid loves to swim. She LOVES it. We joined our community country club this summer just so she can swim as much as she wants. When you're a cancer kid, it seems like you're limited on so much. Except swimming. This girl can swim for hours and never get bored or tired.

Kaylee jumping off the diving board yesterday afternoon

This morning, we went to the country club as usual. It was a beautiful day, and the kids were going stir crazy at home, so we were all looking forward to burning the excess energy off in the water. The boys wanted to go to the "baby" pool, and Kaylee wanted to go to the big pool. This is where everything started to go wrong...

I was sitting on the side of the baby pool watching the boys run around, and Kaylee came over to ask if she could jump off the diving board. Only, she couldn't ask the question. She kept starting to phrase the question- "Mama, can I...." and then she'd trail off. Now, this isn't at all uncommon in my house- so I stopped her with my completely normal "Kaylee- stop. think about what you're going to say, and then say it." Finally, I just told her to "go", and off she went.

She ran over and jumped off the diving board once, and swam over to the edge and climbed up the steps, like normal. Then, she went to do it again. She jumped again, and I watched and watched for her to come to the steps, and finally saw her swimming towards the diving board. It looked like she was swimming in circles, and there was a little boy trying to gesture her to the edge to help pull her out. I ran over, because she was obviously having problems and pulled her out. She seemed disoriented, so I told her we'd just stick around the baby pool today. I was talking to her, and she was not really responding. She seemed drunk, really- She was making noises, but not making sense. She tripped and ran into the pool bar. I picked her up, and noticed that she was limp. Within seconds, she began shaking violently. I yelled out for someone to call 911, that she had leukemia and was having a seizure.

Immediately, several people came running over, and the lifeguards cleared the pool. There were a few people dialing 911, and the lifeguards were assessing her within seconds. I still don't know how it happened so quickly, but almost immediately, an anesthesiologist who was at the club, and a cardiac nurse, who was also there, ran out and were helping as well.  Kaylee wasn't at all responsive at this point. She was awake, but could form no words and wasn't responding to simple commands.  By the time the ambulance showed up, my mom was already there (I'd called her to grab the boys), and while Kaylee recognized her, she couldn't really speak to her either.

We hopped on the ambulance, and off to TCH we went. During the whole ride, she didn't speak at all. She would look up, when I would say her name, and she was smiling the whole time. After getting to the hospital, she began seizing again. She was given atavan to stop the seizures, and a barrage of tests to determine the cause of the seizures. The CT scans showed no bleeding, the chest xrays were clear, but the MRI wasn't so kind.

Kaylee had toxicity around her brain. The chemo that's saving her life is also hurting her brain. It's uncommon, but not unheard of it. We're still unclear on what her protocol will be from now on, but she won't be receiving any more chemo in her spine until an MRI shows that the toxicity has dissipated.

She's been unreasonable, emotional, and completely and totally disoriented and delusional during the times she's been awake. Every time she wakes up after a nap, she can't remember anything that happened before she had her first  seizure. For hours, she wasn't awake at all. She went through hours of tests and scans with no signs of "life". It was terrifying. It may happen again and again, or it may never happen again. We don't know.