Thursday, September 1, 2011

How we got here - pt. 1

How did we get here? Our son (I'll call him Super Boy [SB] in blogland) has a tumor growing in his brain (anaplastic pilocytic astrocytoma for those who are counting). He is undergoing chemotherapy, does not have full use of the left side of his body, and has a mechanical device implanted under his skin for administering drugs and drawing blood. All this has visited us within the span of three weeks. Our lives have turned upside down.

In late May, we began to notice an increase in tripping and falling. More skinned knees, more scraped elbows. Was it a growth spurt? Was he too tall for his 4-year-old motor skills? Maybe it was these new Crocs? We just told him to watch where he was walking. In June we noticed he was afraid of stairs in a way he never was before. He would go very slowly while holding on to the railing with both hands. In July, he scraped his knees from tripping and falling almost everyday. Finally, toward the end of the month, on a Friday, I got a call in the morning from his preschool: "It's not an emergency but SB can't walk without falling right now." In a hushed tone, the teacher said, "It looks kind of like he's drunk. We're concerned." I knew she wasn't accusing me of drinking with my son--in the morning no less! Her voice conveyed a deeper concern. I told her that I would be right over after I schedule an appointment at his pediatrician. 

Later that day we visited SB's doctor, a wonderful guy with three young kids. He looked SB over: no ear infections, nothing unusual anywhere. He observed SB walking and noticed a slight lean to the left, but nothing overwhelming. Maybe it's his eyesight? Maybe some strange allergy? Opthamologist and then blood tests. Neither sounded plausible to me and The Wife (TW), but what do we know? Over the weekend, we became a little more concerned as we paid closer attention. Now SB wouldn't even go down three small stairs. He would sit and scoot off each step. 

He had a couple really hard sinus infections in the spring. Could it be that there's something wrong with his sinuses that is playing havoc on his balance? Maybe we need to see an ear, nose and throat specialist. We figured we would just wait for the blood tests and opthamologist to play out first. Then, the next week, on Thursday (after the blood test but before the opthamologist) SB fell off his bunk bed ladder in the morning. After hearing the scream, I ran into the room to see him on the floor crying uncontrollably. I ask him if he can get up and he says no. He looks fine but can't balance at all. I help him stand up but he falls over (again, as if he were drunk). Within 5 minutes he has calmed down and his able to walk, though very unsteadily. 

I take him to school and tell his teachers about the incident. I tell them I'm calling the pediatrician to schedule an appointment with a specialist ASAP. I still don't think this is a big deal. He's walking fine right now, right? One of the teachers, perhaps sensing a deeper fear in me that I couldn't acknowledge, puts her hand on my arm and tells me it's going to be ok. I remember thinking, "Of course it's going to be ok. Why tell me that?" I call the doctor's office as soon as it opens and the receptionist tells me the doctor will be call me as soon as he can. 4 hours later I get a call back and I describe what happened that morning. I tell him that we would like to see a nose, ear and throat specialist. He says, first thing we need is an MRI. Immediately. The morning episode could have been a seizure and we need to see what's going on in his brain as soon as possible. His office scheduled one for the next morning. 

Ok. Would you be worried yet? My family has a pretty good health record, nothing major until the later years. I had no reference point for such concern. I was thankful that we would get an MRI so that we could get to the bottom of this. Maybe it would require surgery on his sinuses or something. The next morning TW and SB would go get the MRI while I would go to my college teaching job 40 miles away. (Side note: we have a 17 month old daughter, Super Girl who wasn't going to be starting childcare until the following Monday.) I was going to drop Super Girl (SG) off at a friend's house before my class and pick her up afterward. We would all meet up later in the afternoon for a family date night...

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