March 4, 1998 A Brave New World

“He’s running funny, don’t you think?” I asked Peter as we were walking down the path along the lake.  “Maybe he needs to get out more, I’ll talk to Peggy (our daycare mother) and have her take him out for more exercise.” 

That was the middle of January, 1998.  Joshua was 28 months old.  Over the course of the next three months odd symptoms occurred here and there.  He had some vomiting after eating chicken nuggets; complaints of mouth pain; tripping without warning; nothing alarming.  Nothing concrete that said. . . uh oh.  Until, March 1, 1998.  That day I was called to his daycare because he had “beaten up” several of the children and then proceeded to fall out of his highchair for no apparent reason.  When I arrived he was crying about his mouth.  I called the dentist and set up an appointment for the next day.  I then called his pediatrician who said to come right in.  We went.  I told him about the day and the fact that we had witnessed him tripping more.  The doctor threw a piece of paper on the floor and asked Joshua to pick it up.  Joshua stood up happily and then staggered to the paper, bent over to pick it up and missed it completely.  I was alarmed.  The doctor remained calm, but stated that if “anything changes at all, call him immediately.”  That was a Friday.  That Saturday I took him to the dentist, nothing presented itself to explain the pain.  We then took the Annette and Joshua to a big play facility where there was a ball pit and lots of tubes and slides.  The kind of place where Joshua should have had a great time, yet he didn’t.  He was subdued and sat in the corner, away from everyone.  Annette was crawling all over and having a wonderful time, yet, her little brother, felt feverish and lethargic.  We came home.  I thought to call the doctor, but chalked it up to a virus.  The next day, Sunday, Joshua woke up wonderful.  He was bright eyed, happy and full of life.  My mother came to visit and we all drove out to see my grandmother.  It was a wonderful day.  That evening, as the kids played and my nephew and Joshua ran through the house, I noted how it was clear Joshua couldn’t make the turns as quick as his cousin.  He was running into the doorways, bouncing off happily, but definitely having judgment issues.  Everyone went to bed without a further thought.  The next was business as usual.  I went to work as a speech therapist in the local city school district.  Peter left for work as well and I dropped Joshua off at daycare while Annette went to school with her nurse.  Mid-morning I called the pediatrician to let him know that after Saturday, all seemed to have worked itself out.  He was not nearly as comforted as I was and asked that I bring Joshua to the urgent care center the next morning at 9:00am for a CT scan and a lumbar puncture.  He was alarmed that Joshua continued to have “ataxia” and the fever was worrisome.  He wanted to rule out viral meningitis.  I hung up the phone in shock.  I had no idea what had just happened.  I called to tell them all was well, and instead, I was told things may be anything but well. 

 

A week after leaving the PICU and his resection.

That night was awful.  Joshua literally cried all night and refused to let us lay him flat.  That morning, for the first time ever, as I was dressing him to meet the pediatrician, my sweet baby said in his tiny shaky voice and tears in his eyes, “my head hurts.”  I called the doctor right away and told him I was taking him to the ER instead.  My heart knew he had meningitis and we had wasted so much time.  I grabbed my mom, threw a small bag in the car and left for the ER. 

We checked in, and then waited.  I watched my sweet boy waddle around clumsily but happily.  He was playing in front of the sliding doors and making them open and close.  We had waited for two hours when I looked at my son and suddenly realized he was no longer able to use his left side.  He was holding his arm to move it and he fell as he tried to make the doors open.  I grabbed him and screamed at the lady behind that lovely piece of thick plastic, that protected her from my motherly rage, and told her that my baby was dying of meningitis as we waited out here!  The doors flew open, everyone was handed a mask and we were ushered immediately to a room, where I was grilled on why I thought my son had meningitis.  I stood him up and asked the doctor to have him walk to her. . . he fell, three times trying.  Then she handed him a coloring book, which he promptly took with his right hand; Joshua was left handed.  She asked me to please wait a moment while she arranged for a scan of his head.  Peter arrived as we were attempting to give Joshua the “sleepy medicine” which tastes vile.  He helped me hold Joshua as I squirted that liquid acid in his mouth.  Joshua yelled for a bit, but his strength was getting weaker and his cry softer.  It took 2 hours for the medicine to actually kick in, so I told Peter to go back to work and that I’d call him if anything was going on.  He walked out after kissing Joshua softly on the head.  15 minutes later I was in the CT room with Joshua sleeping peacefully getting pictures of his beautiful brain.  As they tech was finishing, he asked me “Is he on any meds at all?”  My puzzled look must have been all the answer he needed. 

As we walked back to our room, I could feel the looks of the nurses but didn’t realize what I was feeling.  The doctor walked in immediately after us and sat with my mother and me.  She put up an x-ray like picture on the light box on the wall.  There, was my first glimpse at the horror in my child’s head.  A tumor was taking up all of the right side of his brain, pushing everything into the left side of his head.  The Pediatric Intensive Care team was on their way down. 

 

I walked quietly out into the hallway and stared at the phone.  I had to call Peter and tell him his son had a brain tumor.  I don’t know where the sounds or words came from.  I don’t have any idea what I was saying, but I remember screams and a nurse holding me as I fell to the floor.  I remember being asked if I wanted something to help with the anxiety or if I needed to go outside.  I needed none of those things.  I needed to go back in time three months, to that day I saw my son running funny. . .