Friday, June 24, 2011

Discovering Medulloblastoma: Signs of Something Wrong (Part 2)



So, how did you actually know something was wrong?

In September of 2010, Eliana began to have random bouts of vomiting. We thought she had a stomach bug, but no fever developed, no diarrhea came. And no one else got sick. That was what bothered me the most. I was waiting for someone else to get sick. When you have four kids and someone catches a bug, someone else is going to catch it and then EVERYONE else is going to catch it.  This was no stomach bug I had ever seen.

Eliana would vomit and then a day would pass and she would seem okay. Then she’d vomit again. This went on for a little over a week and when no one else was getting sick, I made an appointment with her pediatrician. At that appointment, it had been about 33 hours since she had thrown up last. The doc thought she was just having a stubborn stomach bug and that she just may have an irritated stomach from the virus. She was happy to hear that she hadn’t vomited in such a while and that she was drinking okay. We were told to push the fluids and to keep an eye on her. On our way home, Eliana threw up again.

I spent the next few days on the phone with a nurse at the ped’s office and we monitored Eliana. I began to have trouble getting her to eat and drink anything. The vomiting seemed to be sporadic and then it would pick up and then it would die back down. But her intake was declining. I was having to give her Gatorade with a medicine dropper. I was back in the ped’s office exactly a week from the first visit. The ped asked me if I wanted to go home and push the fluids, if I wanted to have her given IV fluids at a clinic, or if I wanted to take her to the hospital. I chose the hospital.

September 22nd. We went to the local hospital. I was complemented repeatedly on my “Mommy instincts” to push the pediatrician that something wasn’t right. I was praised for my “dedication” evidenced by getting Eliana to drink using a medicine dropper. “Oh, you were just taking care of her like a little baby bird, weren’t you?”I didn’t want goofy compliments. I wanted someone to fix my baby.


The pediatrician wanted us to explore GI issues to see if there was a blockage. Her developmental delay was discussed. Murmurings of metabolic disorders began to mix with murmurings about her head circumference. At the mention of metabolic disorder, I began to silently wonder if maybe her being sick was going to unearth the mystery of her and Liam’s delay. I began to hope for answers.

Eliana was given IV fluids and she seemed to respond almost immediately. She wasn’t vomiting and an Upper GI study came back clear. She had some labs come back showing elevated white blood cells that indicated she had a virus. The pediatrician said that we were waiting for her to hit a 48 hour window of not vomiting and then we could probably just go home since she was doing so well.


At 44 hours, she vomited.

It was recommended we transfer to Children’s Hospital in DC for “a higher level of care”. A pediatrician mentioned the possibility of Intercranial Pressure (ICP), but he really sounded like he let that slip and then regretted it. I wasn’t sure what to do with that.

We were packed up into an ambulance for the transfer and I rode up front while an EMT tended to Eliana in the back. She was doing fine watching something on the TV they had set up for patients.

When we got to the hospital, we were sent to the GI floor first. We had students, nurses, doctors, - a ton of people – come in and ask me the same questions over and over again. I thought I had seen a GI specialist, but later learned she wasn’t among the many. At a certain point, I had the details of Eliana’s illness as well as her complete medical history memorized. I spouted it off like lines in a script. It felt cold and clinical, even coming from a mother’s mouth. I hated how detached I began to feel from it. I hated what all the doctors were turning it into.