How the brain tumor discovery began.

We went on vacation in March when the kids were off track.  The first morning on the road Haley had cereal for breakfast, nothing out of the ordinary. Immediately after finishing she threw up. I really do mean immediately. She swallowed that last bite and up it came. She asked to be held, which was uncommon because she is a mover and a shaker. She fell asleep immediately in my arms. Again, it was within 30 seconds! It was not even 8 am and she was already taking a nap! How strange is that?! She repeated this process exactly the next day.

The day after that she looked sick, but she didn’t throw up. She was tired and wanted me to hold her but after a few minutes she didn’t fall asleep and resumed playing. We came home and this strange behavior evolved to her getting a strange look in her eyes then turning grey in the face at different times of the day. She wanted to sit with me until she felt better. But she only sat with me for a few minutes, then she was off moving a mile a minute again.

She is a VERY active child! If she is left alone she will be into something or doing something she shouldn’t be doing! But she is a smart kid. She talked earlier then all my others. At 18 months she was saying, “No nap mommy.” That is early for a 3 word sentence! She is a climber. I used to worry about her climbing and falling at the playground but she never fell. She just likes to go go go! She is smart and knows exactly when she is doing something she shouldn’t be doing. She easily problem solves to get around a problem or to turn the situation into her favor.

Her behavior evolved again to her appearing she was choking or was going to vomit. She would open and close her mouth repeatedly in a way it looked like she was gasping for air, yet I knew she was breathing just fine. She couldn’t talk during “it”. I told our Doctor when I was in with the baby for his checkup that she was exhibiting some strange behavior that I could not explain and that I was going to try to get it on video. You really had to see it to understand what I was describing. I knew I couldn’t describe it well enough to make someone else really get the picture. Yet I knew it was not normal. Since that day I had my camera out all the time sitting on the counter just waiting for her to do “it.” All the girls would help running to get the camera, but we could never catch “it” because “it” was only lasting about 45 seconds. Too short to have time to obtain the camera and start recording.

This behavior evolved into actually vomiting or producing a lot of drool. One day I decided to see if she could follow commands in the middle of one of these episodes. I asked her to go to the bathroom to throw up in the toilet. She was able to follow those directions. That was an interesting discovery. It became so routine for her to go into the bathroom, all the girls started repeating what I would say, “it’s ok, go to the bathroom, its ok.” They have been a great help in getting her to the right place because of course that meant less mess to clean up..sometimes.

This last behavior was increasing in frequency substantially. I started getting very concerned and keeping note of the times she would have an episode. It was many times a week. Then when she started having them almost exactly on the half hour all morning long I knew we really needed to figure this out. The next day I was able to catch most of “it” on video, even though “it” was a mild case. I remember thinking how sad it is that I know that. I have seen her do “it” so many times I was becoming an expert on what “it” looked like. She was having these episodes 6-8 times a day now. In a strange way I am grateful for the increase in frequency because that is when I was able to catch it on video.

At night she was waking up a lot which was unusual and coming to our room more and more. It became so often she knew the drill. She would find her regular spot on the floor without letting us know and fall back to sleep. We had a “bed” for her at all times. Then we would wake up to the little baby and we would discover her in her spot. One morning when Haley was sleeping in our room on the floor when we heard her having an episode which not only woke us up but woke her as well. This must be why she kept coming to our room. At night it sounds a lot worse then during the day. It really sounds like she is choking. That is the part that scared us the most. Luckily she would sit up and lean forward like she does during the day. These seemed to happen a lot just before the sun came up.

The change in strange behavior happened over months. The frequency at the beginning was only a couple times a week and at very random times. I did try to figure out if it was a certain food that was the trigger, if it was a certain time of the day, if it was always after an event……but it was so sporadic I could not find anything similar linking one event to the other.

We sent the video to our Doctor, thank goodness for technology, who was very open with us saying he didn’t know what it was. He helped us get appointments with Neurology and GI Doctors. We are so grateful we were able to catch it on video and that our Doctor was willing to help get us the appointments we needed to figure this out.